Jack's Journey and Then Some

Hope

2012-01-29T22:31:00.013-07:00

HOPE

As defined by Dictionary.com:

Hope: the feeling that what is wanted can be had or that events will turn out for the best.

As written by Barbara Gill in “Changed by a Child”:

Hope is the thing that is willing to take a chance on the future. Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn’t face, then hope has done its job.

To quote my friend Christy:

“Hope is a funny thing”.

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As parents, we all have hopes and dreams for our children. As the parent of a medically complex and disabled child, hope is a powerful thing. It is what drives us, carries us and comforts us in the darkest of times.

In the beginning of Jack’s journey, there was so much hope. Despite being a 33- weeker, Jack’s course was uncomplicated and he came home six weeks after he was born - eating and breathing on his own and requiring only a small amount of supplemental oxygen. My hope was simply for Jack to wean off the oxygen. Shortly after he came home, Jack suffered an apneic event (he stopped breathing) and ended up in the PICU. It was discovered that Jack was born with a cardiac anomaly – a vascular ring that was compressing his airway and esophagus. Jack had surgery to divide the vascular ring without complication and when he was discharged from the PICU following surgery, I don’t think anyone expected to ever see us again. I hoped the worst was behind us. Two days after discharge, Jack was readmitted to the PICU in respiratory distress. Jack was ultimately intubated and over the course of three months, multiple attempts were made to extubate him. Each attempt at extubation, I hoped with all my heart that he would make it off the vent so that we could just go home. To no avail. Five months after his first PICU admission, Jack was discharged sporting a trach, ventilator, g-tube and no diagnosis, but with the hope (and expectation) of everyone involved that all the medical intervention was temporary. When I signed off consenting to the trach, I honestly never contemplated that it would be permanent. In the first months of his life, Jack did not present as a child with a progressive neuromuscular disease. In fact, engraved in my memory is a comment made by a neurology fellow during rounds one morning. He looked at Jack and said, “Here is a neurologically healthy child.”

From the moment of Jack’s discharge, my mission – and hope – was to get rid of it all. Occupational, physical and speech therapists invaded our house daily to work with Jack to get him to sit independently, eat by mouth and communicate. I pushed Jack relentlessly and mercilessly. Months passed and the first year quickly faded into the second year. Jack made little progress on all fronts. I was forced to temper my hopes. I went from hoping Jack would get rid of it all to just hoping he would get rid of the ventilator. Couldn’t he at least just get off the damn vent? I literally begged Jack to breathe on his own.

When Jack was three years old, one of his doctors gently suggested that I “needed to make peace with the ventilator.” It was clear to everyone by then that Jack had more going on than initially thought. We still didn’t have a diagnosis, primarily because I refused to follow-up with Jack’s neurologist after Jack’s discharge from the hospital. Whatever she had to say, I wasn’t prepared to hear it at that time. Letting go of the hope that Jack would be able to live without the ventilator was by far one of the most difficult things I’ve ever had to do. It was the ultimate defeat for me because it was what I had so fervently hoped for, for so many years. Losing the g-tube and wheelchair were secondary hopes that could be tackled after we got past the ventilator. When Jack couldn’t get past the ventilator, what was left to hope for?

On Jack’s 5th birthday, I penned out my “new” hopes for Jack in the first of what has since become an annual birthday letter:

“I hope that every morning when he wakes up and every night before he closes his eyes, he feels safe and knows that he is loved. I hope that his days on this earth are lived without pain. I hope he achieves a way to communicate his feelings and desires to others. I hope he stays healthy. I hope he accomplishes all that he is capable of.”

Despite my apparent acceptance of Jack’s limitations and my new “feel good” hopes for Jack, they were short lived. I wanted more. When Jack started school, I had every hope that he would thrive and be able to show everyone how smart he was. I hoped that his teachers and therapists would find a way for him to express what was going on in his head. Jack got a power wheelchair and I hoped that he would be able to maneuver it on his own and have some control over his life. Jack was beginning to make progress with his schooling, his communication and his wheelchair until one fateful day in 2004 when he disconnected himself from his ventilator and suffered an anoxic event – an event that stole so much from him. It was devastating and I was, once again, forced to dilute my hopes for Jack.

My hopes were renewed when Jack got his state of the art eye gaze computer system. I hoped with everything I had (almost as much as I had hoped he would ditch the vent) that he would finally be able to communicate with us. I imagined him using his eyes to write us a letter, sharing all the thoughts that had been held captive in his head all these years. I really, really hoped we’d found the key to “unlocking” Jack. Despite all my hopes, Jack is unable to effectively communicate using his eye gaze system.

I have since learned through my involvement with Cure CMD that Jack’s subtype of muscular dystrophy can cause cognitive impairment that affects the ability to communicate. The reality is, Jack will never be able to communicate in the way I had hoped because of his disease. Jack will never talk, walk, eat or breathe on his own. Not one single hope that I had in the beginning of this journey will ever come to fruition.

Imagine what it’s like when your child is living the worse case scenario for someone with his disease. Much of Cure CMD’s mission is to find ways to slow down the progression of the disease. The hope is to help individuals NOT end up like Jack. How’s that for a hope buster?

It’s difficult to know what to hope for anymore. I certainly no longer hope that what I want can be had. Some might tell me to go back to the hopes that I had on Jack’s 5^th birthday – that those hopes are good enough. Some days, those hopes are good enough. Other days, it feels like giving up.

So, I continue to allow teachers and therapists to come into my home. I continue to sit Jack in front of his eye gaze system. Because, the fact is, Hope IS a funny thing. Hope IS what allows you to take a chance on the future. Hope IS what gives you the strength to get up each day and “keep on keeping on”.

For those reasons, I continue to hope.

Sabbatical

2012-01-21T22:56:00.005-07:00

Okay, I'm back. I decided to take a blogging sabbatical - I guess I should have told you ahead of time. Actually, it wasn't a planned sabbatical in that I felt like I needed a break from blogging, I just didn't have anything interesting to share. However, it appears that my blogging absence has some of my readers worried. I received several phone calls asking if everything is okay and a text from Mary telling me "Mother you need to update your blog!" I just figured Facebook was keeping everyone updated. Now I know that there are a few regular readers out there who aren't on FB (and who don't leave comments - so I don't know you read!)

In any event, I feel the love and it's much appreciated.

Since my last update, the only significant item of interest is Team Cure CMD's participation in the Phoenix half marathon. My beautiful friend Jenny and her adorable daughter Gigi flew in from St. Louis for the race and stayed a few extra days to visit with us. I forgot what it was like to have a baby in the house, but was quickly reminded that babies control the show. Gigi was great - her only issue was not being able to sleep well in a strange environment. I don't think Jenny got much sleep while she was here. Despite the lack of sleep - Jenny still managed to complete her very first half marathon in under 3 hours. She is awesome! I won't share my time because, well ... it's not noteworthy. The Phoenix course seemed tougher than the Los Angeles course and I was definitely feeling it more this time. But, (for Christy) - my foot didn't hurt during or after the walk this time.

The founder of Cure CMD - Dr. Anne Rutkowski also came over from California with her husband, Joe and daughter, Maia (who has the same form of CMD as Jack). Anne is one of the smartest people I know and has seemingly endless energy. My sister described Anne as "captivating". She is so passionate about Cure CMD and its mission that she "sucks you in" and you can't help but want to be part of the "team" and support her in any way you can. I can't say enough how remarkable a person Anne is and what a privilege it is to be able to spend time with her.

Below is a picture of Anne working with Jack on his eye-gaze system. She sat right down with Jack and knew how to work the thing without any hesitation. I feel like a total loser because I never spend any time with him on it. Anne suggests we spend at least a half hour a day with Jack using his device. She's right of course, but my brain doesn't feel like learning new things and I don't find navigating a communication board to be an easy task.

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Race day

Team Cure CMD

Anne and Jenny

Clearly, we were more interested in photo opps than our finish time!

(my sister, Maureen)

I have now participated in 3 - count them - THREE half marathons for Cure CMD. Definitely not something I thought I would ever do. I've already signed up for number 4 - the Disney Half Marathon over Labor Day weekend. This one should be fun -- running through Disneyland. The time limit for the Disney half is shorter than the other halfs, so running will be involved in this next one. Let the training begin! (I'm actually quite scared that I can't do it -- the running thing.)

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Our original plans were to drive to Sedona the Monday after the race. But, given our sore bodies and a baby who was very vocal about her dislike of the car seat, we decided to forgo the two hour drive to Sedona and visit the Desert Botanical Gardens instead. Sedona would have been nicer (and cheaper), but what kid doesn't want her picture taken next to a giant cactus, right?

Is she cute or what?!

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Gigi and Jack enjoying some TV time

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That's the update my friends! I've got another blog thought floating around in my head that was sparked by my time with Anne and by something my friend Christy mentioned in her recent post. It's about "Hope". It won't be a feel good post, but it will be honest.

Stay tuned.

Another SLCH Article - "From the Bedside"

2011-12-31T11:21:00.001-07:00

St. Louis Children's Hospital started a new feature on their website called "From the Bedside" - personal stories about patient care at SLCH. One of Jack's former home health nurses, who is now the manager of Same Day Surgery and the PACU at SLCH wrote a piece for the website. Jean is a pretty remarkable person herself with her own inspiring story, so it's pretty special that they chose her and that she chose to write about her relationship with Jack and our family. I wasn't told that this article had been published, I just happened upon it when I was looking around the SLCH website.

What I Learned From Jack

December Recap

2011-12-27T22:04:00.005-07:00

Wow, where did the month of December go? For that matter, where the heck did the year go?! We've been busy this month with lots of opportunities for Jack to get out and about.

Earlier this month we attended the Ryan House Holiday Party where they had "snow" (a machine blew out soap bubbles.)

Jack has the reputation at Ryan House of being a Beatles fan (Mark is a big Beatles fan, so he put a lot of Beatles songs on Jack's iPod). The harpist remembered Jack and played a few Beatles' songs for him at the party.

Jack's gifts from Ryan House

Last week I flew to Southern California for the day to participate in a video that is being produced by Children's Hospital of Orange County (CHOC) to promote the TouchStones of Compassionate Care program. My dear friend Sarah (Keturah's mom from the Trach board) is on the family advisory committee at CHOC and she really pushed to get the hospital on board. For the video, they chose several sections from my "Dear Future Physician" letter and several moms each read a section for the video. A CHOC physician was also featured in the video, as was Keturah. The plan is to roll out the whole program (video and TouchStones) in February. I've been invited to attend the roll out in February and I'm so honored to get to be there to see it happen.

The group of CHOC moms and Keturah who participated in the video (and me, of course)

A few days before Christmas we had our annual family cookie decorating party. We've been doing this for a few years now and it's become quite competitive. This year there was a lot of pre-decorating planning involved and one sister showed up with her own special decorating tools! It was a lot of fun and many thanks to all of you on Facebook who voted. :)

The winning cookie

(apparently a Pinterest idea)

A close second

A few days before Christmas, a woman I work with told me about a rescue dog her husband was dropping off at the animal shelter. She had her husband (who works for animal control) bring the dog by the office first so I could see him. The dog was calm, sweet and had really sad eyes that said "take me home". So what could I do? Ugh! I called Mark, he took the kids down to the shelter to meet the dog and they decided he was a "yes". We are now the proud owners of __________. We don't have a name yet that we can all agree on. It's changed three times already. I'll let you know once we decide. So far, he's working out well. He's quiet and calm. A perfect fit for our family. (I can't do dogs that bark a lot, jump a lot or that need to be housebroken.) Unfortunately, we've already forked over a chunk of change since we got _______ because he's got complications from being neutered (performed at the shelter before we could take him home). Vet bills less than a week into dog ownership is not what I planned, but, then, what ever goes according to plan, eh?

Mary and our dog ___________

Poor Mary has been working her tail off since she got home from college. She's working at Target at the guest service counter. You can imagine how nice people have been to her the days before and after Christmas (not!) They scheduled her with full-time hours, so she's not getting in much relaxation during her Christmas "break". For the most part, she's not complaining as she needs money for lift tickets and snowboard rental when she returns to school in a few weeks.

Next week, I'm taking Jack to see his pulmonologist to talk about putting him on a new ventilator. This vent - the Trilogy - is supposed to be more sensitive, making it more responsive to the patient's own breathing. I talked with the RT at our DME company and she said they are using it quite a bit with patients here in Phoenix, so I thought we'd better check it out. It's a smaller vent, doesn't have external peep like the LTV and has longer internal battery life. The only downside is that Jack has to go inpatient to trial the vent. I'm not excited about a PICU stay, but I suppose I can tolerate it for one night, especially if Jack is not there because he is sick or has had surgery. I've definitely come a long way from someone who absolutely hated the vent to someone who is now shopping around for a new one!

That's the recap. For those of you on Facebook - this is mostly old news. To my blog followers -thanks for checking in and thanks for caring. I wish all of you a . . .

VERY HAPPY NEW YEAR!

Here's to 2012 - may it be a good year for all of us.

Merry Christmas

2011-12-24T17:50:00.004-07:00

Merry Christmas to all my wonderful friends and blog followers. I promise an update soon.

"Knowing Jack"

2011-12-14T11:23:00.003-07:00

Jack's story finally made it onto the St. Louis Children's website. I contributed to the writing of the story and I'm very happy with the final version. It highlights what is special about Jack and what is special about St. Louis Children's Hospital. What a great gift for me this Christmas season to see Jack featured in a positive way and by a place that has played such a large part in our lives.

Here is the link to the story:

KNOWING JACK

No Words Necessary

2011-12-09T22:17:00.000-07:00

"Opportunities" Revisited

2011-12-03T12:48:00.001-07:00

Just wanted to share that my Blog Thought "Opportunities" was published on the Cure CMD website. They retitled it "A Mother's Touch". Find in HERE. Kind of cool!

A Little Bit of Deja Vu

2011-12-02T21:29:00.006-07:00

Update: My dad was released from the hospital today (Saturday). Hopefully there won't be any return visits in the near future.

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Apparently the dancing girls were a bit too much for my dad because during the drive back home from Missouri he suffered a stroke. The event happened when he was in his hotel room in Amarillo. Now, Amarillo may be the best place to find a good steak, but it's definitely not the best place to have a stroke! I can joke about this now because my dad is mostly okay. My dad's traveling friend (Ben) called the ambulance that took my dad to the hospital in Amarillo. They said he was having TIAs and discharged him from the ER within four hours. My dad and Ben caught a few hours of sleep, got up the next morning and then Ben drove like a bat out of hell to get my dad home and out of his care! The plan was to follow up this week with the cardiologist because my dad is having issues with an irregular heartbeat.

Fast forward to Wednesday night and my dad had another episode where his right hand became numb and weak and the right side of his face drooped. The event comes on quickly and passes fairly quickly and my dad seems to recover in about a half hour. So what does my dad do after he suffers this event on Wednesday? Why, what any 77 year old health nut would do - he gets on his exercise bike and rides it for 47 minutes! Then he proceeds to have another episode. My sister, who is at the house with my dad convinces him he needs to go to the emergency room. My nephew drives him there. My dad walks in and tells the front desk he thinks he's having a stroke and they rush him back and within a matter of seconds there are seven people in his room checking him out. Hint: if you find yourself in the ER and want to bypass the eight hour wait in the waiting room ... just tell them you think you are having a stroke.

They admitted my dad to the Neuro-ICU - same place my mom ended up on more than one occasion. Not a fun place to be and just a little too much deja vu for us. They determined that he did in fact suffer a mild stroke and they said within a few months he should be back to his "normal" self. The "stroke team" attending was flabbergasted that they discharged him from the ER in Texas. Her comment was "well, you are very lucky to still be here!" He was supposed to be discharged today but he went and had three more episodes while waiting to be discharged. So, they are keeping him for observation. He is being managed by the stroke team at Barrow Neurological Institute - about the only medical facility in Phoenix that is ranked nationally. I'm comfortable with the medical team - at least I'm comfortable with the attending. How comfortable can you really be with a bunch of residents? As we head into the weekend, you know nothing will get done as far as figuring out what is going on. They'll monitor him and if he continues to have these episodes, hopefully they'll come up with a plan on Monday. If he makes it through the weekend without any episodes, they'll probably discharge him. My dad is frustrated because (1) he doesn't like being confined to a hospital bed; and (2) he wants to know what the heck is going on and how to make it stop. Our thinking is, if he's going to have more episodes, he needs to have them in the hospital, not at home because he'll just end up back in the hospital anyway. So, we wait.

Have a fabulous weekend my friends!

Family Photoshoots

2011-11-27T23:01:00.003-07:00

This weekend I took pictures of my sisters' families for their Christmas cards. I promised I wouldn't post the pictures all over Facebook or the blog, but I just had to share a few :)

my sister Joan and family

my sister Maureen and family

My dad informed us a couple of weeks ago that he wouldn't be spending Thanksgiving with us because he was spending it in Missouri with his good friends. Today, my sister received this picture via email. Looks like my dad is having a pretty good time, wouldn't you say? :)

Have a great week my friends!

Respite Weekend

2011-11-20T20:33:00.014-07:00

Last summer we scheduled Jack for Ryan House weekends through the end of the year. This weekend was one of his Ryan House weekends, so we took advantage of the opportunity and headed up to Sedona. Sedona is one of the most beautiful places there is and I realized this weekend that I really need to be better at taking advantage of having such a beautiful and peaceful place practically in my own backyard. I always worry when Jack is at Ryan House and we are far away, but when we picked him up this afternoon he look good and he was happy. I usually call a couple of times to check in on him, but also realize that they aren't ever going to tell me anything other than "he is doing good" when I call, so it's not really anymore reassuring to call and check on him than to not. If there really is a problem, they have my phone number and they will call, right?!

Ryan House has become so popular that they are now limiting the number of weekends each family can have per year to three. Three. That's a bummer because who needs respite during the week? Oh well, three weekends a year are better then none.

I dragged Hilary out of the house and made her go with us. She hung out at the hotel on Saturday and Mark, Eric and I went hiking. We also drove into Flagstaff after our hike and met Mary for lunch. Today, Mark and Hilary went to "Out of Africa" wild animal park and Eric and I walked around Sedona and enjoyed eating, shopping and people watching. It was a great weekend all the way around.

Below are a few pictures from our hike on Saturday through beautiful Oak Creek Canyon. The trail we took is about 3.5 miles into the canyon for a total of about 7 miles roundtrip. We turned around at about the 2.5 mile mark. There are a lot of places along the trail where you have to cross the creek. Our walking sticks came in handy helping us keep our balance when we walked on the rocks across the creek.

It's my hope to one day gather up a group of my fellow trach moms and somehow get them all to Arizona for a weekend retreat in Sedona. Wouldn't that be awesome? Who's in?

TouchStones Update

2011-11-10T20:30:00.005-07:00

Thank you all for the birthday wishes for Jack and for watching his video. It's still so hard to believe that Jack is 13 years old! I can clearly remember Jack's first birthday - he was so sick. He was miserable, I was in tears and there was little energy for any celebration. We have come so far in thirteen years. While life is nothing like I expected or wanted (and still don't want), I think we've done a fairly good job of learning to "dance in the rain". I'm so thankful for all the friends I've met along the way who are dancing right along with us.

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On a different note, there are some exciting things going on with the TouchStones program. I don't think that I've yet shared that we now have Children's Hospital of Orange County on board thanks to the persistence of my dear friend Sarah (Keturah's mom for those on the trach board). CHOC is going to roll out the program hospital wide for all of its physicians. They are putting together their own video using my "Dear Future Physician" letter as the foundation for what they want to say. I've been invited to be a part of the video as well. Exciting stuff!

I also recently exchanged emails with one of Jack's former PICU docs who was the physician who supported the Touchstones program from the beginning. She was the one who gave me the confidence to move forward with the idea. She was at Johns Hopkins at the time, but she is now on staff at Vanderbilt Medical School and Children's Hospital. She shared with me that she has introduced the TouchStones program into a "Healer's Art" class she teaches at the medical school and she hands out the pocket stones on the last day of class.

It warms my heart to know that the program is being used at some of the top childrens' hospitals in the country. Thank you St. Louis Children's Hospital for hooking me up with amazing doctors and thank you Tracheostomy.com for hooking me up with amazing parents.

Although I would love to have more hospitals on board, I recognize that we are making a difference one hospital at a time. If we can change the way one physician treats his or her patients and families (and I believe we have), then we have succeeded. I am a firm believer in making a difference one "starfish" at a time. I shared the "Starfish Story" a couple of years ago, and I share it again to remind you that we can ALL make a difference one person at a time.

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THE STARFISH STORY

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "It made a difference for that one."

Happy 13th Birthday Jack!

2011-11-04T03:27:00.002-07:00

Jack is 13 years old today. A teenager! Thirteen years ago I could never have imagined the journey that Jack and I would travel. Even today, I stand back and still can’t quite wrap my head around where we started and where we are today. Who would have thought? In the beginning, not many of us, that’s for sure.

Jack is loved, Jack is happy and Jack doesn’t know any different. Today, we celebrate all of those things.

Rather than share a bunch of superfluous words, I share a song that perfectly expresses how I feel thirteen years into this journey.

Happy Birthday Jack – we love you to the moon and back!

Sneak Peek

2011-11-02T19:24:00.002-07:00

In the video I am putting together for Jack's birthday, you will see a lot of pictures from a professional photoshoot that I had done in September. The person who took Mary's senior portraits (Doni) wasn't available because she is taking time off for her new baby. The person she suggested did a great job - although, I will say I don't think she's as good as Doni. Here are some pictures from the shoot - a preview of what you'll see in the video.

LA Half

2011-10-31T21:21:00.005-07:00

Despite my lack of training, I finished the Los Angeles 1/2 marathon and I wasn't the last one across the finish line. Yay! It was a lot of fun, especially because it was Halloween weekend and there were a lot of crazy costumes amongst the runners. There was a group of Elvis runners pushing jogging strollers holding ice chests full of beer. They were drinking while they were running. I'm really not sure how they finished the race and they even finished in front of me! (should I admit that?)

Pre-race pictures

Downtown LA

Part of our Cure CMD team

I don't have any post-race pictures and if I did, I doubt I'd share them. :) I did something to my foot this race - when I took my shoe off after the race it was swollen, red and painful on the top (and still is today). Based on my Google diagnosis, I think I might have a stress fracture. I'm not sure whether I need to have it seen by an orthopedic doc or not. I guess I'll wait a few days and see if it improves. Whatever the issue is, it better resolve by January because I have another half marathon to walk!

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Eric went trick-or-treating with one of his friends from school. You can guess who is who.

Jack's birthday is Friday. So many thoughts and ideas in my head ... transforming them into something I can share with you will be the challenge. As all my special needs moms know, birthdays are so, so bittersweet. Stay tuned.

Just Pictures

2011-10-23T19:05:00.007-07:00

Have a fabulous week!

Home

2011-10-19T20:44:00.007-07:00

We are home and settled back into the routine of every day life. Most importantly, we are home where we have help with Jack. I don't want to harp too much on how truly exhausting it is to travel 3000 miles with a ventilator dependent, essentially quadriplegic, almost thirteen year old, eighty pound child because the fact is - I choose to travel to St. Louis - I'm not required to travel there. But, I don't think it's possible for most people to really understand the amount of physical work involved in traveling half way across country with Jack. Jack does not travel in his wheelchair, he sits in one of the captain's seats in the van. Therefore, when we stop for the night at a hotel, Mark has to lift Jack out of the seat and carry him out of the van, the whole time Jack is disconnected from his vent and I'm right there assisting with the transfer and hooking Jack up to his other vent once he is in his wheelchair. This lifting of Jack alone is back-breaking. Add to that the unloading and loading of his equipment and supplies - which requires two trips with a fully loaded hotel dolly. I counted that on this trip - because we did it over three days each way and we also had a minor delay due to car trouble which required an additional, temporary hotel stop - we loaded and unloaded Jack and all his stuff 14 times! I need to get a video of the loading and unloading process just to give you an idea of all that is involved. Mark says we look like a traveling circus.

I'll also not complain too much about having to provide all of Jack's care 24/7 for 10 days straight with no help because I know some of you who read my blog don't have nursing help and you provide all your child's care all the time. However, I can tell you - I could never be Jack's full-time caregiver. I'd be dead by now. Seriously.

My whole point being that even though I took a trip to St. Louis and I was away from the office for six days, I was NOT on a VACATION people! (what I want to scream when people ask me how my "vacation" was.)

In any event, we made it home safe and sound, Jack is well and Mark and I are slowly recovering. It takes us about a year to recover and erase from our memory the hell of this trip. Just in time to do it all over again! :)

Okay, so we did have one "fun" day. The last day in St. Louis, the weather was beautiful, so Mark and I decided to take Jack to the St. Louis Zoo. Jack didn't really enjoy it too much because it was windy and he was probably still recovering from the prior day's eye surgery. Oh well, we made a valiant effort at trying to have some fun with Jack while in St. Louis.

Mark's awesome picture of us on the Merry-Go-Round. Granted, he was trying to get a picture of a moving target.

Lots going on over the next few weeks. I'm walking the LA 1/2 in less than two weeks and I haven't trained one bit for the walk. Not sure what I was thinking agreeing to do this knowing that I haven't trained like I did last year. Then again, I'm only walking it - I'm not running it. But, there is still a time limit, so I do have to walk with some speed. Wish me luck!

Jack's 13th birthday is fast approaching. So much I want to share, but finding the time to put my thoughts to words (and maybe a video) - therein lies the challenge. Hopefully, I'll come up with something that does justice to his reaching the milestone of being a teenager. (can you believe that?!)

Thanks for checking in my friends. Have a fabulous rest of the week!

A Story of Compassion

2011-10-14T20:54:00.012-07:00

Yesterday, I had a lunch date with Jack's neurologist. I'm fortunate that every year when we come out to St. Louis, she takes time out of her busy schedule to meet me for lunch. She was seeing patients in the "Center for Advanced Medicine" ("CAM") building and Jack and I went there to meet up with her after she finished. Housed in the CAM building is the Siteman Cancer Center, a non-pediatric cancer center. The CAM building is a large, modern, glass building with a huge lobby - it looks like a hotel lobby with a valet counter, information center, coffee bar and even a piano where a woman was playing music along with an older gentleman who was belting out "Danny Boy" as everyone milled about the lobby. Jack and I had to wait awhile for Dr. C to finish seeing her patients and as I was sitting there, I did a lot of people watching. I saw tired eyes and weary bodies of people being pushed in wheelchairs by husbands, wives, daughters, and sons because they were too weak to walk. There were people walking with canes, people carrying oxygen tanks and people who were obviously in the throws of cancer treatment. My eye caught a man who was, I'd guess, to be in his mid to late 40s. He was being pushed in a wheelchair by who I assume was his father. It was obvious that he had some type of cancer of the jaw, neck or throat because of the incisions on his face. He had a trach and sitting in his lap was a suction machine. His eyes looked sad and distant. However, as his father wheeled him past Jack - the man looked at Jack and then crossed his arms on his chest to show the sign for "love". It was such a simple, yet profound gesture. A gesture of compassion that required no words. What an amazing way to end our week at SLCH - to experience the kindness of that man who felt a special connection to Jack and who showed love in the mist of his own suffering. It was a very touching and memorable moment.

St. Louis

2011-10-12T21:34:00.000-07:00

We arrived safe and sound in St. Louis on Monday. It's been a fairly stress-free week being that we are only seeing one doctor this time around. Jack had his eye surgery today and only one eye needed to have the laser procedure done to relieve the pressure. The ophthalmologist did mention that it may be time for new lenses because he's grown and things have changed inside the eye. We have a post-op appointment tomorrow and we'll talk about everything then. I have a feeling these once a year trips to St. Louis (rather than every other year) are going to become the norm for us. I can say with certainty that our next trip out here will be in a different vehicle. It's just too much for Jack to sit in a seat for 8+ hours without the ability to change his position. And, it's just too difficult for Mark to lift Jack in and out of the van anymore. If only I were a rich man, then I'd buy me one of those houses on wheels and travel in luxury to St. Louis. If only ....

Jack was very popular in Same Day Surgery today - lots of visitors stopped by to see Jack. It's so nice that so many people remember Jack and stop by to visit with him and me. I was also able to request - and get - my favorite anesthesiologist who is so good with Jack and who knows Jack very well. I can't say enough how much I love St. Louis Children's Hospital. Just walking around the Washington University Medical School/Children's Hospital campus is such a neat experience - the place just has the feel of academia and excellent medical care!

Some pictures from our week so far ....

The view from the deck of our friends' house

My handsome and happy Jack.

Where I've eaten every day since we've been here

(at least once a day, sometimes twice a day!)

Definitely a place of "advanced medicine"

the place we come for

22 Years

2011-10-07T22:46:00.004-07:00

Today Mark and I celebrate 22 years of marital bliss. Not bad considering that for 21 of those years we've been parents of children with special needs. Although, technically, we didn't find out Hilary was deaf until she was a year old. So, we always say, we had 2 "good" years of marriage. The key to our lasting marriage - despite the overwhelming odds against it lasting - is HUMOR. If nothing else, we both can still laugh. And, anyone who knows Mark knows that he is darn funny. He's quiet- but funny! Little known fact - Mark was a theatre major in college. He's a great actor with a great sense of humor. I've encouraged him to get back into acting by joining a community theater. Unfortunately, his work schedule just doesn't allow it right now. But, maybe some day ....

The following pictures are really lousy for a couple of reasons.

1. They are old (22 years old, to be exact).
2. We didn't have money to hire a professional photographer when we got married - so the quality is crappy to begin with. But, I thought I'd share them anyway.

The priest in the left of the picture (who you can only partially see) married my mom and dad (and taught both my dad and me in high school). The other priest - he was also one of my high school teachers. He was a friend of my dad's growing up and he said my mom's funeral. He's awesome. If all priests were like him, I might still be going to church. (But, that's a whole other topic!)

Time for me to shut down the computer and finish packing. We're hitting the road tomorrow and 5am comes early.

Aaaahhh . . .

2011-10-05T23:32:00.003-07:00

So much to do and so little time. T minus 2 days before we leave for St. Louis and I'm probably more ill prepared than I've ever been in the past. Part of me just doesn't want to go and the other part is really looking forward to seeing my St. Louis friends, savoring a pumpkin muffin from the St. Louis Bread Company (aka Panera), and breathing in some cool, crisp Fall weather. But the laundry and packing that needs to be done in a short time frame has kicked the stress level up a notch. If only that thing called a "job" didn't suck up all my time. But, alas, whenever I feel overwhelmed with too many things to do, I just head over to my friend Christy's blog and she keeps me in check. (Christy is one crazy, busy lady and she still finds time to run marathons. She's amazing!)

When given the choice of staying or going, Eric elected to not go with us to St. Louis. It was a difficult call for him because he enjoys seeing Peggy, but in the end, he just couldn't face the three days in the car (each way). We decided to make the trip over three days instead of the usual two days. It's just getting too much for Jack to tolerate 12+ hour days in the car. We'll spend more days on the road (6) than in St. Louis (4), but we're hoping it will be a more ~~enjoyable~~ tolerable trip doing it at a slower pace. We'll see.

Last Sunday, Hilary turned 21 years old. Seriously, how is it possible that she is 21 years old?! She was just a baby, darnit!

If you recall, when I decided to re-enroll Jack in school, I took the position that I would keep my expectations low. I have not been disappointed. The first quarter of school is finished and Jack has received ZERO hours of the OT, speech and life skills/academics set out in his IEP - an IEP that was signed in early August. At the end of the day, whether or not Jack goes to "school" will have no impact on his future and, for this reason, I try not to get too upset with the lack of compliance by the school district. But, it's this lack of compliance that caused me walk away from the hassle of it all three years ago. And, it also comes down to what is right and what is wrong and the actions of the school district are just wrong. I could file a complaint with the Department of Education, they'd find the school district to be out of compliance with the IEP and mandate that the missed hours be made up. However, I've been there, done that and you see how much of an impact it had on the school. At this point, I'm just not sure if I'm ready to play hardball or say WTF.

Adding insult to the injury, I received this in the mail today:

Jack's very first report card. First of all -- I still can't wrap my head around the fact that Jack is in 7th grade! I've never met the "Counselor" and I have no idea what "P" means. "Pass"? I really didn't need to receive this report card. It contains absolutely no meaningful information and it's just a reality check that makes me sad. Pfft...

Anyway .... I'll do my best to update our travels to St. Louis. Thanks for checking in.

Family Weekend

2011-09-25T23:53:00.004-07:00

This weekend was Family Weekend at Northern Arizona University. What used to be called "Parent's Weekend", is now for the entire family. Mark, Eric and I went up to Flagstaff for the weekend to see Mary. Hilary didn't want to come - she quite enjoyed having the house to herself for a few days, and Jack spent the weekend at Ryan House. I'm still not 100% comfortable leaving Jack at Ryan House - this is only the second time he has been there for the weekend without us staying with him. Jack's nurses checked in on him for us and when we arrived to pick him up this afternoon, he was doing great. He's very tired tonight though and I can't get a read from him as to whether he's okay with staying at Ryan House, or whether he is mad at us for leaving him there. It's certainly not an easy thing to do, but I will admit, it's really nice to get away for the weekend and have a break from all of Jack's care.

It was good to see Mary and it seems that college life is treating her well. Mary has decided that she wants to be a doctor. I think she's read my "Dear Future Physician" letter, so she knows what's expected of her! :) She has signed up to be a volunteer in the emergency room at the hospital in Flagstaff - which is a Level I trauma center. It will give her the opportunity to see some "good" stuff and find out if she has the stomach to be a doctor. I too spent my weekends volunteering in the emergency room of a Level I trauma center during college. Things didn't quite go according to plan for me, as I ended up on the wrong side of the white coat. I'm optimistic that things will work out much better for Mary!

___________________________

Ready to cheer on the football team

NAU isn't a powerhouse football team, but it was still a fun game to watch

Mary and her cousin, Kelsey at the game

Eric isn't a big football fan - he'd rather read his Lego Ideas book

The girls found the game about as interesting as Eric and left early

Today we walked around downtown Flagstaff - which has a lot of really neat little shops. It reminds me a lot of Estes Park, Colorado - but, not quite as upscale.

Old Route 66 runs through downtown

There is also a lot of wall art on the buildings

______________________________

As a follow-up to my last post, the other part of the email from the media relations person at SLCH said this:

It would be a privilege to highlight Jack on our Facebook page, as well as on the main hospital website. Will you be in St. Louis soon for a follow-up appointment? If so, we'd love to meet you in person and interview you and Jack for a profile.

So, yes SLCH wants to share our story. The problem is, when I wrote the email, I truly wasn't "fishing" for our story to be told. I was using Jack as an example of the many children like him who SLCH cares for. There are many local children who have the same "profile" as Jack that they can feature on their Facebook page and website. While I encouraged her to profile a local child, I also let her know that I would very much like for her to meet Jack in person and I let her know when we'd be in town. I haven't heard back from her, so I'm wondering if the fact that I didn't jump at the opportunity to be the featured story, made her lose interest. I guess I should have just said "yes" and left it at that. Oh well ... regardless, I made my point and it was heard. What SLCH does from here, I don't know. Que Sera, Sera.

Speaking of St. Louis, we leave weekend after next and I'm not even close to being psychologically ready for the trip. It is such a long and brutal trip. Mostly for Jack. But, we do what we have to do because I'm stubborn as hell and I won't let anyone else but the St. Louis docs manage Jack's care. There will no doubt come the day when we will no longer make the trip - for any number of reasons. But, until then .... onward!

Have a great week my friends.

The Silent Child

2011-09-19T00:35:00.003-07:00

One of the statements that Anne made in her video that really hit home with me was this:

As a person with a disability, you are often ignored in society. If you are able to speak, you can at least have a come back, defend yourself.

I would also add that if you are able to speak - you are noticed. It's the disabled or sick child who can talk that is chosen to be the "poster child". Their stories are shared on television, websites and Facebook pages - stories of children who are fighting cancer, who have incurable diseases, who have received new hearts and lungs, or who are pioneers in the use of new medical technology. I recognize that "feel good" stories with cute and articulate kids are both good for publicity and heartwarming for people to hear. They are valid and important stories that should be shared. But, what about the cognitively impaired child who cannot talk? Their faces and smiles need to be shown and their stories need to be shared as well. The lack of recognition of the "silent child" really gets to me sometimes. While I completely understand why it's difficult for people to connect with a child like Jack, it's still hurtful that he is often ignored.

I "like" and follow St. Louis Children's Hospital on Facebook. Stories of the children that SLCH cares for are shared on a daily basis on its Facebook page. Several months ago, I sent an email to SLCH's media relations person offering my perspective for her consideration. Here is a portion of what I wrote:

I'd like to challenge you to also recognize the stories of children like my son. A child who isn't a "poster child" because of the disease that has ravaged his body and stolen his ability to communicate. A child who will never be cured despite the top notch care provided by SLCH. I'd like to see someone write an article, share a story - even a picture - of the child who isn't necessarily a "success" story, but who represents another population of patients that SLCH provides care for - the silent, chronically ill, developmentally delayed child. A child who is equally as beautiful, and whose story is equally worth sharing. While there is no question that the physicians, nurses and staff at SLCH recognize the value of our children's lives as evidenced by the compassionate care they provide, I would love to see this recognition extend beyond the four walls of the examination room. Every once in a while it would be nice to see a story about a child like mine. A story about how the care provided by SLCH - while it may not cure his disease or save his life - it does enhance his quality of life, for however long that may be. It's not a sensational story, but it's ours. And, I believe, it's your story too.

I received a very nice response, that provided in part:

I couldn't agree more. Caring for children like Jack is a critical part of what we do, and provides tremendous fulfillment and inspiration to the nurses, doctors and therapists who follow these brave heroes every day.

As the parent of a "silent child", I feel strongly that I need to raise awareness whenever I can. It's important for people to know that just because a child can't talk, doesn't mean he has nothing to "say".

A Video: Life With CMD

2011-09-12T22:19:00.002-07:00

The Chairwoman and founder of Cure CMD, Anne Rutkowski, recently participated in a video with her daughter where she talks about life with a child with CMD. Her daughter is about the same age as Jack, has the same subtype of CMD as Jack and, like Jack, her daughter has cognitive impairments that affect her ability to communicate. Anne made several points in this video that really resonate with me - which I'll share more about in my next post. Anne is an emergency room doctor and one of the brightest people I know. When she talks congenital muscular dystrophy - she uses big words and talks way over my head! The thing I liked about this video is that it's Anne the mom, not the doctor, the advocate or the trailblazer that she is. The video is almost 7 minutes long, but, hopefully some of you will take the time to watch it.

9-11 Memorial Prayer

2011-09-10T22:14:00.002-07:00

Remembering those who lost their lives on this 10th anniversary of 9/11.

The following was written by my husband, Mark.

(click to enlarge)

Eric-isms

2011-09-08T22:17:00.001-07:00

I realize it's been awhile since I've posted any Eric-isms. There is never a shortage of Eric-isms, I just haven't been very good at writing them down. Here are a couple of recent ones:

"Hilary is the only person I know who doesn't think I'm awesome."

"In my opinion, the scariest thing in the world is an angry mom."

_______________________

Thanks for all your thoughtful comments on the loss of Rylie. Hilary already put the dates and times for adoption at Petsmart up on the refrigerator. However, I'm not ready to jump right in just yet - at least not until we get back from our trip to St. Louis. I'd rather not get another dog at all, but I don't think I'm going to win on this one.

Now that "Fall" is here, so are the school-born sicknesses. Eric has his first case of strep throat and Mary texted me this week with "Mom, I'm already sick." We've been so lucky with Jack because he hasn't been sick for over a year (knocking on wood). I'll be curious to see if he gets sick once the teacher and therapists start coming out to the house and bring all the school germs with them. Speaking of school, we have Jack's IEP in place, but don't yet have all the people to provide the services. Looks like it won't be until at least mid-October (after Fall break) before we have a team put together. Good thing my expectations were low.

Hope you all have a fabulous weekend. I'd just like for the temps to get below 100. It's Pumpkin Spice Latte time at Starbucks, but I just can't get into the Fall coffees when it's 110 degrees outside! The weather is definitely something I'm looking forward to in St. Louis (along with seeing all our awesome friends).

Cheers!

The Thing I Don't Like About Having a Dog ....

2011-09-03T20:48:00.001-07:00

.... is that they die.

It's no secret that I'm not an animal person, but I did think our dog Rylie was a pretty sweet dog. If I had to have a dog, she was the perfect one for me. She had a quiet, gentle disposition.

Sadly, she died on Friday night, at home. Mark was out of town until today, so I had to handle the whole thing and it was rather traumatic. Long story short - I ended up taking her to the vet, a bunch of tests were run and it was determined that she was dehydrated and something was wrong with her liver. However, there wasn't anything this particular vet could do until next week - when we could have some additional testing done. She sent us home after pushing fluids into Rylie and told us to come back the next day for more fluids (this vet didn't have overnight services). Rylie died two hours after we brought her home. Ugh! The one good thing is that it truly was a very peaceful passing and the kids were with her. I seriously don't ever want to go through that again. Thank God for my friends Anne Marie and Paul - they are "animal people" (they have lots of animals) and they helped me get Rylie to the vet and back home. Thankfully, they were with us when she died, or I would have freaked out. We suspect Rylie had been sick for awhile and it caught up with her all at once and she crashed fast. There really wasn't anything the vet could do based on the condition Rylie was in at the time we took her in.

Lots of tears are being shed around here this weekend. Naturally, there is talk of the next dog we are going to get. But, I don't think I can do this again - and, it will happen again. It's the nature of having pets.

She was Hilary's best friend,

Eric's buddy,

and Jack's protector

Eric slept with her collar last night :(

and, Hilary drew this picture

So much for an enjoyable three-day weekend.

New ENT

2011-08-31T20:29:00.010-07:00

We saw a new ENT today - one who trained under our St. Louis ENT. Two words: Love him!

It was so refreshing to encounter a physician who completely understands why we travel to SLCH, who understands the deficiencies this City has when it comes to coordination of care for complex kids like Jack, who treated Jack like a human being, and who has a great personality to boot. When he came into the room he said "I finally get to meet you!" (Apparently, our St. Louis ENT had already told him about Jack with the hopes that one day we'd make an appointment to see him.) I was almost giddy when I left the office - just knowing that I finally have a local ENT who can take care of acute issues for Jack and not feel like I'm settling when Jack receives care here versus St. Louis. He did a flexible scope in the office and didn't see any granulation tissue and, in fact, he said Jack's airway looks great. Jack hasn't had any more episodes since the last one, so who knows what the issue was. I think Jack just likes to keep us on our toes.

A relevant fact for the day:

The Phoenix metropolitan area has a population of over 4 million people, yet has only three pediatric ENTs in the entire valley. There are a lot of ENTs who see both kids and adults, but there are only three who care solely for kids. (One who trained under Jack's St. Louis ENT, one who trained under the airway guru, Dr. Robin Cotton and one who saw the need and was the first pediatric ENT to set up shop here). That, my friends, is a problem.

In any event, today goes down as a good day!

Happy Birthday to My Nieces

2011-08-29T23:20:00.005-07:00

Because I know they check the blog every once in awhile, I wanted to wish my nieces, Bridget and Kelsey (who are sisters) happy birthdays! Bridget's birthday is today and Kelsey's is tomorrow.

Below are two of my favorite pictures of my nieces. Their personalities shine through in these pictures ... or at least one of their personalities does. Can you guess who? :)

(Bridget, Kelsey, Shannon)

(enough already with the pictures)

(hey, whatcha doing with my pacifier?)

These pictures were taken close to twenty years ago! I don't even know how that is possible. Today, Bridget is in her first year of law school at Rutgers School of Law and Kelsey is finishing up her degree at NAU. These pictures were taken (by me) before I had kids. This was a time when having kids meant diapers, pacifiers, bottles, formula, Gymboree and well checks ... not cochlear implants, IEPs, DMEs, g-tubes, vents, trachs and PICUs. I sure miss the naivete of those days.

Happy Birthday girls - I hope your birthdays are (were) extra-special!

Independence Day

2011-08-25T22:18:00.001-07:00

Today was a day of independence ....

Hilary doesn't drive, so she has to take the City bus to get to school. She had to leave the house at 5:30am to get to school in time for her 8am class. The ridiculous part is that the school is 20 minutes away if she were to drive there (incentive for learning to drive??) But, she managed to get up, get out the door, walk to the bus stop, make two transfers, arrive at the school, attend her three classes and do it all over again to get back home. She walked in the door at about 3:45pm. A long, hot day for her, but she got where she needed to be, on time and all by herself.

Mary is all moved into her dorm at NAU and is ready to embark on her new journey as a college student, all by herself.

Eric had to walk home from the bus stop after school today because Mark and I were with Mary. I was a nervous nellie about him walking home without an adult, but it's less than a quarter mile from the bus drop off to our house and he doesn't have to cross any streets. I told him to make sure he came straight home - no dawdling. This was Eric's first time walking home from school all by himself, and he arrived safe and sound!

Our kids are growing up and becoming independent. It's a good thing, but bittersweet at the same time. Oh well, we don't ever have to worry about not being needed - we've always got Jack! :)

Mary walking Eric to the bus stop before she leaves for college

(I think she's going to miss him)

Getting her dorm room set up

Hanging out with the Lumberjack

(school mascot)

All Is Well

2011-08-24T22:11:00.004-07:00

I received the summary of my "Executive Physical" in the mail today (as a follow-up to the phone call I got from my doctor two weeks ago). Apparently, my diet of chocolate and beer is working for me. According to the report, my cholesterol is very good, my triglycerides are excellent and, based on some special CT scan they did, my arterial age is 39. Not bad, eh? I did find out why I'm so tired all the time - I'm anemic. I started taking an Iron supplement and I already feel like I have a bit more energy. I'm not ready to run a 1/2 marathon yet, but maybe some day. By all accounts, I should live to see another day. Yay!

I got Jack an appointment with a new ENT for next week. The guy is new to the group (and the fourth doctor I will have seen in the group since we moved here) and he trained under Jack's St. Louis ENT - which is how I got his name. I fully intend to name drop - hopefully it will earn us some brownie points with the guy. I'm cautiously optimistic. The only bad thing is that he shares office space with ENT number 2 - who I departed ways with on not such good terms. I just hope I don't run into the guy while we are there. Then again, I don't really care if I do.

Tomorrow is the big day - we take Mary up north to attend college at Northern Arizona University. She's about 75% packed and no where to be found this evening. I swear, I haven't seen her for more than an hour since she got home from Ireland at the end of June. She's either at work or with her friends or cousins. Sadly, she is ready to spread her wings and get the heck out of this house. I can't say I blame her.

Thanks for checking in on us ... all is well.

My Day

2011-08-21T22:48:00.005-07:00

Get up at 6:30am and drive forty-five minutes to my Aunt's house. Drive my Aunt to Cracker Barrel and enjoy a nice breakfast with her. Drop my Aunt back at her house. Drive home to pick up the girls to take them out clothes shopping for college (because, you know, they don't have enough clothes already). Spend a couple of hours shopping. Take the girls out to lunch and then head home. Once home, clean bathrooms, do laundry, straighten up the kitchen, suction Jack (after washing my hands, of course), feed Jack lunch, more suctioning. Around 3:30pm, start getting Jack ready to go out to meet my family for a sending-Mary-off-to-college dinner. Get Jack in his wheelchair. Notice Jack turning purple. Bag Jack with oxygen until he is pink again. Hook Jack back up to his vent and watch him turn purple again. Pull out Jack's trach while he's still in his chair to see if he has a plug. No plug. Put the trach back in and continue to bag Jack. Change out the vent circuits because the Peep valve is making a strange noise. Hook Jack back up to his vent and watch him turn purple again! See Jack look at me with eyes that say "please do something ... I'm dying here" (literally). Bag Jack again and decide that Jack is not going out to dinner with us. Get Jack back in bed and lay him down flat. Color starts returning to his face. Mark and I look at each other and are thinking ... want to flip to see who stays home with Jack and who goes? Decide that I should go because it's my family. I send Mary ahead with Hilary and Eric otherwise we are going to be late to the dinner that I planned and asked everyone to come to. I wait about fifteen minutes to make sure Jack is going to be okay. I look at Mark and say "it's pretty bad when you are afraid to be home alone with your own kid". I leave to meet my family for dinner, trying to hold back the tears as I drive. Have a nice dinner with my family, keeping a close eye on my phone the entire time just in case Mark calls. Arrive back home. Jack is pink and happy! Vacuum the floors, do another load of laundry, get Eric in the shower and then to bed. Exercise thirty minutes on my stationary bike. Get Jack fed, suctioned and ready for bed. Mop floors. 10:30pm .... sit down!

Yep, I'm definitely living in the moment these days!

_______________________

As for what the heck is going on with Jack - I haven't a clue. Worse yet, I don't have any confidence that there is a doctor in this City who can help me figure it out. But, I have to try. I'm starting with the ENT because I want to rule out any granulation tissue at the end of his trach tube given that his episodes appear to be positional. If it's not that, I guess we'll see the pulmonologist next. If I don't get anywhere here, we'll be in St. Louis in seven weeks and maybe someone there can help us.

_______________________

Pictures from dinner .....

Have a great week everyone!

In the Moment

2011-08-20T23:52:00.006-07:00

Now that I have "officially" committed to participating in two 1/2 marathons as part of Team Cure CMD, I decided it was time to get my running shoes on and put in some miles. I'm going to walk the LA 1/2 again (in October), as well as the Phoenix 1/2 in January. This evening when I was out on my walk/occasional run, I made an observation. I noticed that I look down, not ahead when I walk. I remember my sister pointing this out to me on one of our training walks last year. I do a lot of thinking on my walks and I'm very focused on what's in my head, not where I'm heading. I'm not so much looking down, as I'm looking inward. It's safer. I tried to force myself to look ahead on my walk and, to be honest, I really couldn't do it. I felt vulnerable. I think that's indicative of how I've come to live my life. I stay safely tucked away in my own little space, head to the grindstone, inward focused .... just living in the moment. It's a matter of survival really. Some days it's all you can do to get through moment and, then there are those days when you just want to savor the moment. The here and now is enough.

I used to approach life eyes wide open, full steam ahead. Now, I don't have the fortitude to think too far into the future. I used to be such a planner - always with a carefully mapped out destination. You see how well that worked for me. The last twelve years have definitely been a lesson in humility. This evening I realized how I have changed. For better or worse, I find myself living safely in the moment with little desire to look ahead to the future and what it may bring.

Just an observation.

Weekend Pictures

2011-08-15T22:55:00.000-07:00

Jack had a great weekend at Ryan House. We met another wonderful family who was there with their five children. Three boys all around the same age as Eric - which made for a great weekend for him. Their youngest two children have a degenerative disease, so they were definitely in need of some respite. The mom and I and my friend all went to see "The Help" on Saturday night. Great book and equally great movie.

Eric hanging out in the TV room (where a lot of Wii was played)

Jack and volunteer Greg having fun in the pool area

Eric loves the pool at Ryan House because he can touch the bottom anywhere in the pool

That's all I've got. Not much going on this week. Next week will be a busy one, so I'm just going to enjoy the calm before the storm.

Have a great week everyone!

Random Update

2011-08-09T22:22:00.007-07:00

☞ The boys got haircuts on Saturday

(don't have a good picture of Jack yet)

☞ A month after I dropped off Jack's enrollment forms, I finally heard from the school district. Someone called to tell me the date and time of the meeting. Didn't bother to check with me to find out if my schedule was clear - just set the meeting. I was tempted to tell them I wasn't available just so they'd have to rework all their schedules. But, I decided that wouldn't be the mature thing to do and it wouldn't serve Jack well for me to make.a.point. So, I just closed my eyes, took a deep breath and repeated several times "it's not about me, it's not about me". Then picked up the phone and told them I'm available. I do need to call and make sure that our first meeting isn't the actual IEP because I'm not sure how they can have an IEP meeting for a child they have never met or evaluated.

☞ Tonight when Eric was getting ready for bed, I asked him if he had brushed his teeth, he gave his typical automatic answer of "yes". When I told him that he, in fact, had not brushed his teeth, he looks at me and says "you are the only one who can crack my nut." In other words, I know when he is lying. He should know by now that nothing gets past mom!

☞ I'm putting together a team to run/walk the PF Changs Phoenix 1/2 marathon in January 2012 to support Cure CMD. If you are local (or even if you aren't) and want to join us, let me know. Anne Rutkowski (founder of Cure CMD) and her husband plan to come over from Los Angeles to participate. Should be lots of fun! I haven't decided yet if I'll be able to participate in the LA 1/2 in October -- I'd like to, but don't know if I'll be up for it because I've done little to no training since the last 1/2.

☞ We are heading back to the Ryan House this weekend. Jack hasn't been since January. By the time we got around to scheduling our summer weekends, they were full. So, this is our first opportunity since the first of the year. We now have a weekend a month scheduled through the end of the year. Because it's been so long since Jack's last visit, I'll be staying with him this time. It's not much respite for me when I have to stay there, but I'm just not comfortable leaving him to fly solo (without his mom) the entire weekend.

☞ Jack is still having random periods of respiratory distress. It seems to happen mostly when he's in his wheelchair. I'm convinced that it's because he's not being adequately ventilated either due to his cuff not being inflated enough or he needs his vent settings adjusted up. It's a hard call when it comes to his cuff because if you fully inflate it, he loses his voice and we don't want to do that to him. But, at the same time, we need to make sure the vent pushes the air into his lungs and not up and out through his mouth. He needs a vent check and I just need to suck it up and take him to see his pulmonologist. I just know he'll want to do a "sleep study" (and I use that term very loosely considering we are talking Phoenix and not St. Louis). It's times like this that I wish we still lived in St. Louis.

☞ I made myself a doctor's appointment for a complete physical (because I'm always tired as hell). The last time I saw my primary care doctor was in 2003. He asked who I had been seeing in the interim. I told him no one. His response - "you don't do doctoring?" (if he only knew!) I passed the EKG/stress test with flying colors. But, based on the results of their hearing and vision tests, I think I'm deaf and blind.

☞ Due to the hard work of my dear friend Sarah, Children's Hospital of Orange County (CHOC) has signed up for the Touchstones of Compassionate Care program and will be implementing it hospital-wide for all of its doctors. Very exciting news. One hospital at a time - we will make a difference.

☞ Mary moves into her dorm in two weeks. :(

☞ Hilary starts classes at our local community college in two weeks. :)

☞ Random picture:

(Doesn't everyone have trach tubes just lying around on their counters along with the mail?)

☞ Words of wisdom

If you want others to be happy, practice compassion.

If you want to be happy, practice compassion.

This Kid

2011-08-03T20:24:00.008-07:00

THIS KID ...

scared the bejesus out of his parents today! When Mark showed up to get Eric at the bus drop off ... Eric wasn't there. He didn't get off the bus. Panic set in. After a flurry of phone calls, it was discovered that Eric failed to get off the bus at his stop because he was "in the back of the bus with his friends working on his homework". Grrr! Mark's exact words to me were "I'm going to kill him!" Lest you think that Eric is the high compliance, studious type and how could you possibly get mad at him for missing his stop because he was doing his homework! Let me assure you that the only reason he was doing his homework on the bus - hurry up style - was because he thought he'd then have time to get on his DS the minute he walked in the door. Ah, the best laid plans. I asked Eric what went through his mind when he realized he missed his stop. His response ... "Dad is going to kill me!"*

The really sad part is how we parents immediately go to the worst case scenario when we don't have our children in our sight. I hate it. I hate the fact that today our kids have to be tethered to us for us to feel safe. But, that's the reality of the world we live in. In any event ... Eric is fine and if he's smart, he'll make sure he doesn't miss his bus stop again!

*Mark caught up with Eric at the next bus stop - a school about 5 miles away!

THIS KID

is giving me grief and he doesn't even know it. We found out this week that his two-day a week nurse who is very good is leaving. This having to constantly worry about "child care" is so hard. You shouldn't have to worry about it when your kid is almost thirteen years old. It just bums me out that we have to orient yet another nurse and then decide whether this person is not only competent to care for Jack, but also someone I don't have to freak out about having in my house when I'm not home. I'm growing weary of the relentless worry that goes along with having to depend on other people to keep my child alive. (Angie -- hurry back!)

And, finally ....

THESE KIDS

are both in desperate need of haircuts! All I need is about six more hours in the day to get it all done.

But, at the end of the day ... it's all good!

Thanks for checking in my friends.

Essay: The Absence of Normal Frees Us

2011-07-30T22:58:00.002-07:00

Notwithstanding the fact that I've sworn off reading "special needs blogs" - this essay written by the father of a child who is severely developmentally delayed is an excellent read, in my opinion.

The Absence of Normal Frees Us

All About Eric

2011-07-25T21:35:00.006-07:00

Eric started school today. I know, I know ... most of you are still in summer school or just finished your regular school year. My kids are on a modified year-round schedule so they always start back after only a seven week summer break. I actually like it. If I was independently wealthy, didn't have to work and could spend my summers living in a beach house on Coronado Island, I might feel differently about summer being so short. Because that's not the case, I'm happy to have Eric back in school - it keeps him entertained and gets him out from in front of the television set.

This school year I decided that we were not going to fight with Eric every day/night after school to get his homework done and get to bed. So, I drafted up a contract that listed all the "rules" for the school year. When I went over it with him and told him to initial and sign, his response was "a contract is something you have to agree to sign." Good point. He recognized the number one thing you need with every contract - consideration. (He'll make a great lawyer some day.) I was asking him to agree to a set of rules, with nothing in return for him if he complied. We came up with a reward system that is payable at the end of the first quarter of school (in October). After we agreed upon the terms, he agreed to sign the contract. One of the rules was that he has to sit at the dining room table to do his homework. I told him that the TV has to be off when he is working on his homework (but failed to include this as a term of our contract). Eric immediately recognized my lapse and pronounced "LOOP HOLE"! (Sometimes, he's too smart for his own good!)

In any event - Day 1 and we have compliance. It helps that he doesn't have homework yet.

A few pictures from Eric's day:

Waiting for the bus

(he is growing like a weed and is getting really tall)

First time taking the bus to school

We ended our day with swimming lessons. As ridiculous as it sounds ... living in Arizona where at least seventy-five percent (I'm guessing) of the households have swimming pools - Eric doesn't know how to swim. (we don't have a pool). Not only can't he swim, he is terrified of the water. We've been wanting to get him in swim lessons for years, but could never get it done with our work schedules and Jack thrown in the mix. (Lame excuses, but that's my story and I'm stickin' to it!) He's only had lessons for three weeks. His first lesson, the swim instructor had to literally strong-arm him into the pool. He told us the older kids are harder because they are stronger and they know more. But, they also progress faster. Tonight was only Eric's third lesson and he's progressed to the point where he is not afraid of getting in the water. I told him he is going to take lessons for at least a year before he can quit. Let's hope he progresses out of the "Otter" class by then - where most the kids are two years old!

Waiting for class to start

swimming while holding onto a bar

At the end of class - he's smiling ... that is good!

Arriving home after swimming - it's been a long day!

Blog Roll

2011-07-21T20:51:00.010-07:00

I read a lot of blogs. I read blogs that cover a wide range of subjects and topics - funny blogs, informative blogs, blogs about sick kids, healthy kids, typical families and families of kids with chronic health issues. Recently, I started following a couple of blogs that are focused solely on raising children with special needs. For most of the last twelve years, I've avoided the whole special needs arena as much as possible. I've stayed focused on my role as the parent of a medically fragile child - not as the parent of a child with special needs. I suppose that I take this approach because, in my mind, medical issues can be dealt with, managed and, in some cases, resolved, while special needs (according to MY definition of "special needs") are permanent and life long - they can be accommodated, but not resolved. Staying focused on the medical issues makes me feel like I have some control. (ha!)

One of the special needs blogs that I've been reading is written by a mom whose son is making the transition from being a child with special needs to being an adult with special needs. She discusses the many issues faced by parents of older children with special needs. It's an excellent resource and very well written, however, I've come to the conclusion that I can't read it anymore. In fact, I need to stop reading all solely "special needs" focused blogs. I'm left feeling like a complete failure for all I don't do for Jack (some of these parents are definitely "super" parents) or I'm depressed as hell at what the future holds. Sometimes, it's all just too much to think about. I prefer the head in the sand approach.

So, my blog roll is now a few blogs shorter, but I already feel like a weight has been lifted off my shoulders. Does that make sense?

I still love to follow the blogs of my friends and fellow trach moms. I love their humor and I enjoy keeping up with what's going on with them and with all their kids. I love reading how they find balance in this crazy life, I love reading about the progress their incredibly "special" kids make and I love seeing their pictures. They make me laugh, they make me cry and most of all they make me feel like I'm not alone. I love all these ladies!

______________________

On a completely different note, we went to Eric's "meet the teacher" tonight and checked out Eric's classroom and schedule. One of Eric's subjects this year is Mandarin. They are teaching the kids Mandarin! How cool is that?!

Now, it's time to get my medically fragile, special needs, happy, loving and absolutely wonderful young man ready for bed!

Love ya'

What's Going on Around Here

2011-07-12T00:03:00.005-07:00

Not a whole lot going on around here, thus the lack of posts. When I look back at old blog entries, I sure had a lot to share when I first started writing. Now, it's just every day life. But, that's okay. I know that I enjoy keeping up with my friends' every day lives on their blogs and I'm guessing you all do too.

Summer break is winding down for Eric. He has two more weeks off and then he's back in school. He'll be in 4th grade and attending a new school. I'm nervous about the change, but Eric seems okay with it. Boys are just so much more laid back about things than girls, you know? Eric has been in the gifted program since Kindergarten - which is a self-contained class in our school district. The only real difference with the gifted kids is that they are doing work a year ahead of their actual grade. I suppose they challenge the kids a little more as well. This year our school district - after being pushed by a group of parents, established a Gifted Academy which will focus on science, technology, engineering, arts, and mathematics (S.T.E.A.M.) There was a lottery as to who got in and Eric was one of the "lucky" kids. It's going to be intense, but what I like is that it will have an "interest driven personalized learning plan". Eric's strength and interest is in art and I know this program will give him an opportunity to really grow and expand this strength. How well he'll do with the other subjects has yet to be seen. If life becomes miserable for him and/or us, we'll re-evaluate whether the Academy is where he should be. Eric will also be riding the bus for the first time, so lots of changes on the horizon for him.

Mary leaves for college in about six weeks. She'll only be about two and a half hours away - far enough away, but not too far. There's lots to do to get her ready (and lots of money to spend in the process!) She's trying to get in as many hours as she can at work so she has plenty of spending money while away at school. We rarely see her as she's either at work or spending time with her cousins or friends. I guess it's called growing up and moving away.

Hilary is registered at our local community college for the Fall and she's (somewhat) actively looking for a job. She's slowing figuring out that she needs to "get a life" (her words) -- as in get a job, go to school, make friends and experience the world outside of the four walls of her bedroom. Maybe by the time she's 30 she'll have it figured out!

As for Jack, he's keeping us hopping. When I got home from work today, Mark and Kristi informed me that Jack needed to be bagged multiple times throughout the day because his sats kept tanking. I suspect he's dealing with atelectasis - although I'm not sure why. I upped Jack's vent settings, increased the water in his trach cuff and we'll be using the Vest more than once a day for awhile. It's a bit unnerving even for Kristi (who has been caring for Jack for 9 years) when Jack has episodes of respiratory distress. They make Mark nervous as hell as well. I don't get too excited because I know Jack usually comes out of them - plus, I'm probably the most comfortable messing with the vent and the cuffed trach.

In other Jack news, I've decided after a three year break, I'm going to get him back in school. If Jack was a typical kid, he's be in 7th grade this year. THAT'S JUNIOR HIGH! Because he's junior high age, he switches schools, so I thought I'd give a different school a chance with Jack. I'm still keeping him at home, so it will be homebound services. I'm hoping to get speech therapy, occupational therapy and a teacher to come out to the house. I'm not optimistic and I'm not up for a fight, but I'm willing to give it a shot to see what the school will give him. Jack is ready for more interaction and activities in his life.

On a more somber note, I'm meeting with someone from Ryan House this week to discuss the whole DNR thing. NOT that I expect to have to use it anytime in the near future. However, it has to be dealt with at some point in time, so I decided now is the time. I realized in talking with other parents of kids at Ryan House that this is something that they have already addressed and we had not. As Jack gets older and his disease progresses, Mark and I need to think about what we want if something should happen. Not a happy topic, but one that is very much a part of our reality.

On a happier note ~

On a ridiculous note ~

Apria delivered this huge box to our house today

which included

approximately four supplies! Seriously?! They could have used a box one-quarter the size and saved me from having to find a way to dispose of the damn box. You really wonder who they hire to work in their warehouse. I think you must fail the common sense test to qualify to work there!

Well folks, that's all I've got for now. Thanks for checking in!

_____________

Postscript: There's something amiss when "DNR" and "bagging" my kid through periods of "respiratory distress" constitute "not a whole lot going on around here". How very skewed my perspective of life has become!

The Never Empty Nest

2011-07-03T23:21:00.005-07:00

Along the same lines as my "Where is the Book" post, below is the link to a recent article published in Good Housekeeping that was written by the brother/brother-in-law of parents of two children with special needs. Kuddos to Good Housekeeping for giving space to a story about special needs issues - something you rarely read about in mainstream magazines. What a special person the author is to not only "get it", but to also share his feelings about it.

The Never Empty Nest

Ireland Recap

2011-06-26T17:17:00.006-07:00

The trip of a lifetime is over and we had a wonderful time. There were thirteen of us who went on the trip: me and Mary, my friend Marcy, my dad, my nephews Aaron and Steven, my sister Joan and her daughter Shannon, my sister Maureen and her husband Jim and daughters Bridget and Kelsey, and Bridget's boyfriend, Joe. We all arrived in New Jersey on Saturday (June 12th) - our flight to Ireland wasn't until the next day. My niece Bridget lives in New Jersey, so the kids spent the night at her apartment and the adults in a nearby hotel.

Hanging out at Bridget's apartment waiting for our rides to the airport

It took two cars and an SUV to get us and all our luggage to the airport

First group to arrive at the airport (we had our doubts we'd get there alive - our driver drove insanely)

We left New York at 6:30pm on Sunday evening and arrived in Shannon, Ireland at 5:30am the next morning.

Our plane - Aer Lingus

Welcome to Shannon, Ireland

We were told that no matter how tired we were, we needed to stay up the entire day and not go to bed until bedtime Ireland time. So, we were off...

Our first stop was Bunratty Castle. I soon learned that once you've seen one castle, you've pretty much seen them all. Although they each have their own unique history and village.

Atop Bunratty Castle with my friend Marcy

We experienced our first pub (of many) in Bunratty Village. We are all looking a bit tired at this point, having been awake for well over 24 hours

The beer of choice in Ireland is definitely Guinness. I'm told that there are fewer calories in a Guinness than a Bud Light. I was also told that Guinness in Ireland tastes better than it does in the US. I did drink a Guinness because - well, when you are in Ireland you MUST drink Guinness! However, it's not my favorite beer (at home or in Ireland) - I preferred Carlsberg beer (a pale ale). The drinking age in Ireland is eighteen which made Mary very happy. A lot of beer was drank by all on this trip, but everyone was responsible and behaved themselves!

After touring Bunratty Village and having our first pub meal, we headed to the place we were staying for the week - Adare Manor located in -- oddly enough -- Adare, Ireland. Adare Manor is an 840 acre estate that includes a hotel, golf course, Villas and beautiful woodlands. We stayed in two Villas - each Villa had three bedrooms, a den, 4 bathrooms, laundry room, kitchen, dining room and family room. The place was amazing!

Front of our Villas

Back of our Villas

The second day of our trip we went to the Cliffs of Moher. The Cliffs of Moher are located on the western seaboard of County Clare and from the Cliffs you can see the Aran Island and Galway Bay. The Cliffs of Moher are one of Ireland's top visitor attractions.

After spending some time at the Cliffs of Moher, we headed to Aillwee Cave - one of the oldest caves in Ireland, also located in County Clare. Mary wasn't feeling well, so she and I stayed in the car while everyone else toured the Cave. While waiting, I snapped a few pictures of the Irish countryside - it was just like you'd imagine it to be.

Day three we toured the Rock of Cashel (also known as St. Patrick's Rock) located in Cashel, South Tipperary. The Rock of Cashel was the traditional seat of the kings of Munster for several hundred years prior to the Norman invasion. Cashel is reputed to be the site of the conversion of the King of Munster by St. Patrick in the 5th century. All that remains today are remnants of the early structures.

From the Rock of Cashel - you can see a former Benedictine Abbey off in the distance

We walked from the Rock of Cashel into the city of Cashel for lunch. Cashel is a small and quaint city.

Day four, we headed to Blarney Castle - home of the Blarney Stone. We all climbed to the top of the Castle (quite the climb, I might add) to reach the Blarney Stone. Several of the kids kissed the Blarney Stone. However, I passed. (Something about touching my mouth on something that thousands of other people have done the same just didn't appeal to me!) I didn't really see a "stone" - it was just a area at the top of the castle that they sectioned off and called the Blarney Stone. After seeing the Castle, we walked through the Blarney Gardens - which were beautiful. We had lunch in Blarney and did some shopping at the Blarney Woolen Mills.

Blarney Castle

Grounds of the Blarney Garden

After seeing all we wanted to see at Blarney, the plan was to head down to Cobh, a seaport town located on the south coast of County Cork. However, my nephew broke his glasses and he really needed them to see. We were told we needed to go to a major city to find a place called "SpecSavers" that had an onsite lab that would be able to fix his glasses. So, some of us headed to Cork and the rest of them headed to Cobh. Cork is a big and busy City - it reminded me of San Francisco in some ways. The service at SpecSavers was wonderful and my nephew was able to get new glasses in about an hour and a half - which he was very happy about. As for the group headed to Cobh - the GPS (and my dad) lead them somewhere else and they never made it to Cobh, but they did get to see lots of Ireland countryside.

Street in Cork

Flower shop in Cork

Day five we rented a twelve passenger private tour bus (despite the fact that there were thirteen of us) that drove us to see Dingle Peninsula. The Dingle Peninsula stretches 30 miles into the Atlantic Ocean from Ireland's south-west coast and was cited as one of the most beautiful places on earth by National Geographic. We stopped many places along the way - it was a spectacular day!

Enjoying having someone else do the driving

Notice the lake is shaped like a harp - very cool. The color spot on the sheep is how the farmers brand their sheep. Each farmer has a specific color or color combination.

At the top of a (very high) hill we climbed. When we got to the top, we were in the clouds.

Dingle Bay - looks like a postcard

The Dingle Peninsula coastline

Playing in the ocean

Remembering my mom. She and my dad took many trips to Ireland together. I'm sure this trip was bittersweet for my dad.

Day six was spent in Killarney located in County Kerry. Killarney was by far my favorite place. It was a fairly big city - but not too big. It was clean and had lots of places to shop and eat. I could have spent more than a day there. We spent most of our time in Killarney at the Killarney National Park. The Park consists of 26,000 acres and includes mountains, lakes, woods and waterfalls. It was spectacular and I've never seen so many shades of green as I saw in the Park. Below are a few pictures, but be sure and check out all the picture in my photo album (link below).

We drove through the park in a horse drawn carriage

My absolute favorite picture

(make sure you click on it to make it bigger)

Day seven we left Adare and headed to Dublin. At this point in our journey, our group split ways. My dad and five of the grandkids (including Mary) were off on their own. They headed North and have been staying at B&Bs along the way. We spent the remainder of our stay in Dublin. We were anticipating lots of rain during our stay in Ireland because it always rains in Ireland. However, we were remarkably lucky and saw very little rain the first six days of our stay. It would rain on and off and usually when we were inside. We couldn't have asked for better weather. Dublin was a different story - it rained for the majority of our stay. I'm not a big city person and Dublin is a big City. It's also old and crowded. Add in the rain and the dumpy apartment we rented and you could say Dublin was not the cherry on top of our fabulous trip to Ireland. I'm definitely glad I got to see Dublin, but it's not a place I have any desire to see again. I didn't get many pictures of Dublin because it was raining all the time and I didn't want to get my camera wet. We did manage to get in a tour of the Guinness Storehouse (does that surprise you?!), which was kind of cool.

The City of Dublin as seen from the Gravity Bar located on the 7th floor of the Guinness Storehouse

Street in Dublin

We also saw Trinity University which was pretty and had a lot of neat photo opportunities. But, it was too wet to pull out my camera and get pictures.

We headed home on Tuesday, but only made it as far as New York. We spent several days exploring the City - or, rather I should say, my sister Maureen and my friend Marcy spent several days exploring the City. I could only stand to spend one day in the City and that was almost too much (plus it rained the entire time we were in New York/New Jersey). The day before we came home, we did go to Ellis Island and the Statute of Liberty. Seeing Ellis Island was a very moving experience and made staying in New York all worth it. We also stopped in at the Cake Boss' place - Carlo's Bake Shop (located in Hoboken, NJ), but we didn't see Buddy!

Ellis Island as seen from the ferry.

Luggage of the immigrants

As seen from the ferry

(the lousy weather made for lousy pictures)

The Cake Boss' bakery

I did get the chance to spend the day with my good friend (and former trach mom) Carrie who lives in New Jersey - so that was another positive about staying in New York the few extra days.

By Saturday I was so ready to be home, but also so grateful for the opportunity to spend time with my family in a land my mom loved so much. I thought of her often during our trip and wondered what she would think about all of us going to Ireland. Going to Ireland wasn't something we really thought about before my mom died. It was her death that got us thinking about our Irish roots and making the trip with my dad to a place he and my mom visited often. It truly was a once in a lifetime trip.

As for the other half of our group, they head home Tuesday and from what I hear, they are all very ready to be home. Two weeks is a long time to travel about a country. They are now staying in a B&B near Dublin and will spend their final days exploring that City (and the Guinness Storehouse, no doubt!) My dad is feeling much better. Yesterday my niece texted me and said "Grandpa is flirting with the waitress .... obviously, he is back to 100%."

Hope you enjoyed my recap of Ireland! I figured I'd better do it now before I forget where we went and what we did. You can see all 242 of my Ireland pictures here:

Ireland Pictures

(I put a description with the pictures so you can tell who is in the picture and where the picture was taken.)

And last but not least .... Jack is doing awesome and I don't think he even missed me. I certainly needed the break and maybe he needed the break from me as well. Nevertheless, he is stuck with me whether he likes it or not!

Have a great week my friends. Hope I still remember my way to the office .... it's been awhile.

New York Layover

2011-06-23T19:46:00.001-07:00

We are back from Ireland and have been spending the last few days in New Jersey/New York. I'm not a big fan of New York City, but my friend who came with us to Ireland has never been to NYC and she really wanted to see the City. So, here we are. But, I am so ready to be home!

My dad and the kids stayed behind in Ireland for another week. It's been eventful. My dad is sick and the kids had to find a doctor for him. He was started on antibiotics and is feeling much better, but not 100% yet. Yesterday the kids went horseback riding while my dad rested. Three of the five kids fell off their horses! But, they are all fine. Here is my niece Kelsey's Facebook description of her horseback riding experience:

Synopsis of Horseback riding: Kelsey is given possibly the largest horse she has ever seen in her life. Mary's horse, too busy shaking its head doesn't see a sign and pulls a Bridget and runs into it, neighs and side-steps. Kelsey's horse freaks out, rears and jumps side-ways. As it's running sideways, Kelsey falls off the horse and lands smack on her tailbone.

and her sister's added comment:

THEN Kelsey does the stop.drop.and roll (helmet in tow) off the road and onto a patchy field of grass so as not to get hit by a vehicle!

We were told that Kelsey was driven back to the B&B they were staying at by the local pub owner who was driving by when Kelsey fell off her horse. Too funny!

I'm working on uploading all my Ireland pictures to Shutterfly so that I can share them. Hopefully, I'll have it done by the end of the weekend (I get home on Saturday). Stay tuned!

On the home front, all is well. Jack is doing great and hasn't given Mark (or his nurses) any problems. It's just a wee bit humbling to know that they can survive without me. I guess I'm not as indispensable as I'd like to think I am!

A Few Ireland Pics

2011-06-15T10:31:00.003-07:00

We are three days into our Ireland trip and I already have over one hundred pictures. Here are a few sneak peeks (okay, so I am going to update the blog while I'm in Ireland!)

Our group

classic Ireland

Sweet! :)

These kids were with a school group touring the castle the same time we were and the kid on the right said "hey, take our picture". To which I replied "and then what am I going to do with it?" and he said "I don't know, but take our picture anyway". So, I did!

We have been drinking a whole LOT of these since we got here!

My phone company (Verizon) completely screwed up and I don't have cell phone access over here which is just a bit unnerving to say the least. I'm keeping in contact with Mark via email and he tells me Jack is doing great. He also told me to not worry about Jack because even if things weren't going okay there is nothing I can do about it! True, but how can a mother not worry?

We are having an awesome time in Ireland and it's been really great weather (very little rain). I'll try and post more pictures later!

Emerald Isle

2011-06-11T07:00:00.013-07:00

Mary and I are off to Ireland. Catch me back here in a couple of weeks. You can be sure that I'll have lots of pictures to share. Please send your positive thoughts, good vibes and prayers Mark's way for things to go smoothly with Jack while I'm gone. I've never been away from Jack this long and I'm a little bit nervous being so far away. Thanks!

Slainte!

School is Out for Summer!

2011-06-05T22:05:00.003-07:00

Last week was a busy week with the last days of school and Mary's graduation. I'll let the pictures tell the story.

Last day of third grade and looking so grown up!

Outside his classroom

There are only seven weeks of summer break for Eric and then it's back to school! I've got him signed up for a couple of different summer camps and I'm giving him a couple of weeks off in between just to sleep in, play video games all day and have no agenda. The first day of fourth grade will be here before we know it!

After dropping Eric off at school, Mary and I went to breakfast together

After breakfast, we did a pre-graduation photo shoot

(click on the picture to enlarge)

The graduate

Mary had a graduating class of over 700 kids and graduation was at Arizona State University. It was a bit tough to get any close-up shots, but here are a few after she received her diploma

After graduation celebration with family

Ready to head out for some partying with her high school friends

Mary graduated with high honors and earned a full tuition scholarship to any of the Universities here in AZ. She will be attending Northern Arizona University in Flagstaff and she is beyond excited to be getting out of the house!

________________________

and last but not least .....

JACK

Jack and I went out for a walk this evening and I stopped at this cool spot for a few pictures. You can't really tell from the pictures, but Jack's face is 100% better. It appears that my 12 ½ year old has acne - which has now resolved thanks to some creme his dermatologist gave us. I'm so happy about that!

Hilary is home from school and after much thought and discussion, we've decided that she won't be going back to RIT in the Fall ("we" includes Hilary). As of now, Hilary needs to get a job and she needs to figure out what she wants to do with her life (and it doesn't involve living with mom and dad forever!) She'll likely attend a community college next Fall until she gets things figured out. So, I get another kid out of the house and one comes back! Oh well, I'm a long way from ever experiencing an empty nest, so it's no big deal.

I'm leaving for Ireland next weekend. Not sure if I'll update the blog before I leave and I won't be updating when I'm gone. So, catch you back here in no less than three weeks!

Thanks for checking in!

Graduation Video

2011-05-26T21:18:00.018-07:00

Edited to add:

Last day of high school!

_____________________

Mary doesn't graduate until next week, but her graduation video that I put together arrived in the mail today and Mary couldn't wait until graduation to watch it. Now that Mary has seen it, I thought I'd go ahead and share it. Over the years, Mary has seen me put together videos for Jack, Hilary and several of her cousins and she has anxiously been waiting for her turn! I'm a bit worn out on creating videos, but I certainly couldn't let Mary down. So here you go for those who might be interested .... 18 years of Mary!

Make photo slide shows at www.OneTrueMedia.com

It Almost Makes It All Worth It

2011-05-17T23:43:00.011-07:00

I recently exchanged emails with one of my favorite docs and after lamenting my woes to him, he shared the following with me:

BTW, you know that when I am talking to trainees about family interactions, I tell them about your story and how important it is to communicate on a patient and parent level - literally (sitting down or kneeling, not towering over someone). So not only have you saved Jack, and likely so many others with your inspirational story, you have hopefully created a generation of physicians who, at least in part, have learned how to listen. I will take that lesson with me always, and always teach it.*

This was something I really needed to hear right now and something that I will always carry with me. When I find myself in the lows of this journey, it helps to know that Jack and I - and a physician who truly cares, are making a tangible difference in the way new physicians are being taught to communicate with families. Even though logically I know that life is a crap shoot and life is random - deep down, we all desperately want to believe that when we suffer, there must be a reason for it; we want to believe that we were "chosen" for a purpose. If I have to find a purpose for this journey, I think I found it in the words shared above. Who knew that this paragraph taken from my "Dear Future Physician" letter would become a lesson for new physicians:

Early one morning as I was sitting in the chair next to my son’s bed, the PICU intensivist came over to talk with me. What will always stay with me was this physician’s simple act of kneeling down so that he was eye level with me, rather than looking down on me, when he spoke. To most, this may seem like a meaningless, trivial gesture. On the contrary, it is indicative of the special person this physician is. He is unassuming, he is respectful and he is kind. He is a physician who exemplifies what it means to practice medicine from the heart.

All because one physician was caring enough to listen to what one parent had to say, was humble enough to acknowledge the validity of what was said, and is willing to share the lesson with the physicians who come under his training. Knowing that Jack and I are making a real difference almost makes this journey worth it. Almost.

_______________________

(*this physician is the Director of Critical Care Medicine at one of the top ten Children's Hospital in the country, so he trains a significant number of physicians - very cool!)

Where is the Book?

2011-05-15T17:57:00.000-07:00

As I find myself in this place called “Midlife”, I’ve been reading books and magazines geared towards the “mature” woman. You know, books like “The Wisdom of Menopause (ack!) and magazines like “More” (for the woman of “style and substance” - or so they say). What I’ve discovered in my reading is a recurring and predominant theme:

Midlife = Me.

This is best expressed in the following excerpt:

Midlife is when we hear the wake-up call that demands that we start honoring our own needs. Our children are leaving home or long gone, the time for the kind of self- sacrifice demanded by raising a family is coming to an end, and we now have the opportunity to re-examine our lives.

The snag for me is the part about “our children are leaving home or long gone, the time for the kind of self-sacrifice demanded by raising a family is coming to an end”.

It’s true that for the majority of people, their children are leaving home and they now have the time, financial resources and ability to try new things, travel to new places and enjoy the rewards of years of hard work raising a family and pursuing a career. I see this with my own siblings, my friends and my colleagues.

But what about those of us who have children with significant medical/special needs who will never leave home or live independently? Those of us whose children will require the care and attention of a newborn (and then some) well into adulthood? The demands of caring for our children have not come to an end and, in my case, likely won’t come to an end until I’m in my sixties or perhaps, even later.

Twenty years ago, children like Jack didn’t survive into their late teens and early twenties. The technology that keeps Jack alive today didn’t exist outside a hospital. Medically fragile children simply didn’t live long enough to become medically fragile adults.

How do I reconcile my desire to honor my own needs or take advantage of the opportunity to re-examine my life with the continuing demands of my child who still has so many needs? Where is the book that tells those of us with medically fragile/special needs children how to navigate middle age? More importantly, where is the book that tells us how to do this without the burden of guilt?

I’m tired of reading about how everyone else does it. I want to know how I’m supposed to do it.

Where is the damn book?

Mother's Day

2011-05-08T21:48:00.001-07:00

A day of celebration

(celebrating the other May birthdays - my dad's and my nephew's)

A day of remembrance

A day of appreciation

(for the privilege of being a mom)

Hope your day was a good one!

Diary of "the" Birthday

2011-05-04T21:58:00.005-07:00

The anticipation of the big birthday was definitely a whole lot worse than the actual day. So, now I'm fifty. As everyone has been telling me all along .... it's just a number. Well, except for my sister who picked up the phone and called me today to tell me "I just can't believe you are 50!" Me neither!

The day was perfect in every way. It started bright and early getting Eric to school by 6:15am for his class field trip to Kartchner Caverns (two hours south of Phoenix).

(anxiously waiting to board the bus)

First phone call of the day was from my awesome friend Peggy. I was actually shocked that she remembered it was my birthday. (Peg's not so good at remembering important dates and such.) The phone call from Peg totally made my day.

I took the day off from work and scheduled a morning at my favorite spa.

An hour and a half massage followed by a pedicure and I was in heaven! After I finished up at the spa, my husband and I dined at another one of my favorite places

Despite the fact that I was at a winery, I ordered a beer just for my friend Julie who lives in the UK and who turned 50 last week. Julie is a dear "cyber-friend" who I'm so looking forward to meeting in person one day.

(Cheers Julie!)

After lunch (and two beers), I came home and took a two hour nap. A sure sign that I am officially old because I am so not someone who naps! Then again, I'm not someone who is usually home on a weekday when my kids are at school or being taken care of by someone else. Given the opportunity to nap more often, I think I could get used to it.

I ended the day at my sister's house celebrating with family and friends.

(before we left for my sister's)

(my sister was a little short on candles :)

(here's to another 50 years!)

(sisters)

My day was perfect and I'm so thankful for all the people who made it special - especially my family.

All I can say is that the years have flown by so very fast and, as cliche as it sounds, it's imperative to slow down and just BE in the MOMENT because in the blink of an eye, you'll go from

THIS

TO THIS

I Have Not ...

2011-05-02T20:04:00.006-07:00

.... dropped off the face of the earth! Good grief, in the four and a half years I've been blogging, I've never gone this long between posts. Part of it is because I've really got nothing to blog about and the other is, I've been struggling a bit lately with a bundle of emotions involved with missing my mom, my upcoming birthday, one kid coming home from college and another getting ready to leave for college. Lots of transition going on in life and I'm feeling rather "out of it" lately.

Hopefully, once I get past this damn birthday I'll feel better :) Because I don't care what anyone says, 50 is OLD!

Thank you SO much for checking in on us and for caring. I do appreciate you all and hopefully soon I will get back into the blogging mode. Lots going on in the upcoming months with Mary's high school graduation and our upcoming trip to Ireland - so I don't/won't want for blogging material, that's for sure.

Until next time ..... thanks for hanging in there with me.

Just A Short Update

2011-04-20T22:45:00.008-07:00

A lot of this post will be a repeat for people who are on FB. Just a short Jack update, just because some of you have asked.

Jack's dental procedure

Jack recovered from his dental procedure just fine. The dentist said that he doesn't need to go under for cleaning/dental work every six months (I can't even imagine), but he probably will every 12-18 months. Jack's teeth aren't too bad because he doesn't eat anything by mouth. He does have an impacted tooth that will eventually have to be dealt with by an oral surgeon. When I was looking for a dentist to take over Jack's care, I decided to go with the dentist who is with the pediatric cranio-facial team at one of the hospitals in town. I figured he likely has the most experience dealing with complicated jaws/mouths. The team also includes an oral surgeon - who we will need to see sometime in the future.

When the anesthesiologist came to talk with me before surgery he told me that he hadn't heard of Jack's form of muscular dystrophy (which was listed on a detailed medical history that I typed up and had put with Jack's chart) and, therefore, he did what any good doctor would do, he "Googled" it! He said he got a lot of hits with my name :) Then he asked ... "so, you are a lawyer?" Seriously, I hate when I'm asked that question! I always want to plead the Fifth, but that would probably be a give away, eh? He asked me if Jack was a difficult stick and I said "yes" and told him he might want to just start with the feet because he was not going to have any luck with the arms/hands. So, naturally, he had to try the arms/hands before he ultimately got an IV in his foot. Jack was stuck no less than 8 times based on the number of bruises I counted. Sucks.

I had some concerns about the anesthesia and whether the anesthesiologist was aware of the contradictions of certain anesthesia and muscular dystrophies. I don't think he got that Jack's type of congenital muscular dystrophy - while rare and not widely published - carries the same anesthesia risks as the more prevalent and studied forms of MD. Because the surgery was short and didn't require a deep level of anesthesia, I didn't push the issue. But, in talking about this with Anne R (of Cure CMD), she indicated that this highlights the need to get information out regarding the anesthesia risks for our CMD kids.

Jack's face

After ten days on Cipro, Jack's face isn't looking all that much better. His face is still so red and bumpy. We have a follow-up appointment with the dermatologist next week and I'm hoping she can come up with a magic potion because, as far as I'm concerned, Jack is too young to be dealing with acne (or whatever it is) issues.

We went to an Easter party at Ryan House last weekend. Eric enjoyed hooking up with a friend he met at the Sibshops put on by Ryan House. We learned that both our families live in the same area of town, so we are hoping to get the boys together more regularly. They seem to be a perfect match for each other. Jack enjoyed seeing "Grandma Bev" again. She is so good with Jack. She was happy to "take" Jack from me and go hang out with him in the Sanctuary room where they read books together.

Jack and Grandma Bev

you can obviously see how red Jack's face is :(

Hanging out with some weird looking bunny :)

Finally, here is a link to a post on the Tracheostomy.com website where I posted an article that discusses quality of life for children with chronic health problems. I can't add an attachment to the Blog, but if you go to the link, you can download the article from the post. I think it's an interesting article and one that was well worth reading.

Enjoy the rest of your week y'all!

Wish Us Luck

2011-04-15T01:17:00.005-07:00

Update: For those who didn't get the update on Facebook - we are home and Jack did well. Dealing with lots of blood in the mouth right now, but he's acting fine. Thanks for checking in and have a great weekend everyone!

_________________________________________

Today, Jack is having a procedure done under anesthesia. He is having dental work done - x-ray, cleaning, sealing and a tooth pulled. He's reached the point of having to do this under anesthesia because of his jaw contractures. To say I'm nervous is an understatement. I'm not worried about the work being done, I'm worried about the going under anesthesia part. Unlike when Jack has a procedure done under anesthesia in St. Louis, there has been no anesthesia pre-op consultation - not even by phone. No contact at all. My kid has a neuromuscular disease (which affects the type of anesthesia that can be used) and is on a vent and you don't want to know any information about him prior to the ten minutes before surgery when you come and give me "the talk" about everything that could go wrong? As if I don't already know everything that could go wrong, but, of course, you don't know what I already know because you haven't done a pre-op consult!

Okay, so I have a bad attitude when dealing with the medical professionals/facilities in this City. But, how can I not given what I've experienced at SLCH? This will be Jack's first experience with this hospital (and with this dentist.) It's the hospital my girls were born at, the hospital my mom worked at for 35 years and the hospital I volunteered at during my college/pre-med days. I think it's a good hospital, it's just no SLCH. We don't know them and they don't know Jack.

Wish us luck today.

Thanks!

(I'm sure everything will be fine, but I'll update when we get home.)

________________________

Thanks for all your supportive comments on my last post. Love ya' lots!

For the Record

2011-04-11T22:04:00.006-07:00

For the record . . .

I cry.

Not every day. Some weeks more than others.

Usually in the morning on my drive to work when I have peace and quiet and time to think.

Sometimes at night after I tuck Jack in for the night.

I cry when I look into Jack’s eyes and he looks so intently and deeply into mine and it’s clear that he has so much he wants to tell me, but can’t. Imagine having a headache, an itch, a desire to adjust your weight or reposition your arm or leg, play with a toy, read a book, choose the movie you want to watch or the music you want to hear, or being thirsty or hungry or wanting to give your mom a hug and you can’t tell anyone where it hurts, what you want or how you feel and you can’t do anything by yourself.

I cry when I think about how absolutely wrong it is that Jack was given a mind that is completely “tuned in” but a body that holds his thoughts, feelings and desires hostage.

I cry when I look at old pictures of Jack and see the progression of his disease a little more each year.

I cry when I look into Jack’s eyes and he looks distant and tired, as if he’s saying “enough”.

I cry when my phone rings at 5am and it’s my nurse calling out and I have to cancel a full schedule of clients because I can’t go into the office. I cry out of frustration because I am a prisoner to the nursing I so desperately need in order to keep my job.

I cry when I ask how much longer does Jack have to continue to live this hell on earth and yet I cry when I think about how much time I have left with him.

Crying is very cathartic. It releases the sadness, the loss, the anger, and the hopelessness I feel. Crying allows me to put it all out there on the table and then pick myself back up and keep on keeping on.

For the record . . .

I smile, laugh and find happiness in this life too.

Stuff

2011-04-04T00:01:00.005-07:00

Update:

Antibiotics on board. Hoping to see Jack's sweet (blemish-free) face soon! All our docs came through for Jack today. Yea!

Thanks Angie - I always enjoy when you are working and we get to do Jack's doctor's appointments together! :)

_____________________________

Lots of stuff going on with Jack. None of it serious, but bothersome nonetheless. A couple of months ago Jack's face started breaking out with all these little bumps. It didn't look like acne to me and when I asked his pediatrician about it, he didn't really have much to offer in terms of what it was or what could help. Fast forward a month or so and I decided to take Jack to my dermatologist to see what she had to say. She thought it was acne (Jack is 12 1/2, so acne isn't out of the question). She also swabbed his face for a culture to make sure it wasn't a staph infection. Last week she called to tell me that the culture grew out Serratia - which is not typically found on the skin. She changed the creme we were putting on Jack's face to a gentamiacin creme. Jack has also been having issues with styes that started about the same time as the "acne". After hearing that the culture came back positive for Serratia, I called his pediatrician because I was worried about Jack's eyes - wondering if the styes were related to the Serratia. My thinking is that we need to treat this thing aggressively if it is in fact Serratia. Jack's pediatrician basically took the position that it is very usual to find Serratia on the skin and therefore, it mustn't be correct. He questioned who my dermatologist was and said he'd want a second opinion. Apparently, just because he doesn't know her, she must not be any good?! As if I'm not competent to know who is or isn't a good doctor. Pisses me off.

Long story short, Jack's face looks TERRIBLE since we switched to the gentamiacin creme. And, I mean terrible! It's broken out all over, red and inflamed. I have no idea what is going on. So, tomorrow, I will be calling both the dermatologist and the pediatrician and hope to get in to see both and someone better do something!

Jack is scheduled to be put under general anesthesia for dental work in two weeks, but if his face isn't cleared up, I will probably reschedule because I don't want to risk having whatever is invading his face to invade his mouth, especially if they pull teeth and create a means for the infection to get into his mouth.

Add to all that, Jack is draining puss out of one of his ear. I'm really wondering if it's all related and he's got an infection that is manifesting itself in multiple places.

As I said, not serious stuff . . . yet. However, if I can't find a doctor willing to help, it could turn into something serious. It's times like this that I wish we still lived in St. Louis. I am so much more comfortable with the care Jack receives there. *sigh*

Speaking of St. Louis doctors ... I was looking through a bunch of Jack's medical records as I was looking for his MRI report to send to Dr. B at the NIH and I came across a bunch of "Referring Physician Letters" that had been sent from Jack's St. Louis pulmonologist to his St. Louis pediatrician. This was back when I was in complete denial that Jack had a neuromuscular disease and I was determined that he would get off the vent. I found this in one of the reports from October of 2000:

.... I became involved in his care last month, at which time he was having difficulties with end tidal CO2s that were in the 60-80 range. At my recommendation, we had gone to a cuffed trach. The mother has also determined that this is causing him problems, and has changed the cuffed trach to a Shiley 5.0 uncuffed trach. She has also weaned his ventilator settings and has him off the ventilator completely for two hours at a time. ... I have suggested that he be off the ventilator for not more than one hour on his trach collar. I would prefer that we not attempt trach collar trials at this time, but this is something that is not acceptable to his mother.

This totally cracked me up. You'd have to know this doctor. She is very much a take charge kind of person. In fact, I was told by several people when I decided to switch to her to follow Jack on his vent, that she and I would not get along because we were both very strong willed. Funny thing is, we got along very well. She clearly respected my opinion and my wishes - although never at Jack's expense. I read this report and realize how forthright I was! Thankfully, she put up with me. The day she told me she was leaving St. Louis Children's Hospital was a very sad day. She practices in Florida now -- a bit too far of a drive for Jack to still see her!

Not a very exciting or interesting update, but sometimes life is neither exciting nor interesting! I'm so looking forward to starting off my week dealing with doctors (not!)

Wishing you all a pleasant Monday!

San Diego

2011-03-28T20:13:00.007-07:00

Although it's not on my Bucket List, it's definitely at the top of Eric's:

We spent the weekend in San Diego and one of our stops was LegoLand. Eric thought he'd died and gone to heaven! Eric thoroughly enjoyed the day, but Jack wasn't quite as thrilled. There wasn't a single wheelchair accessible ride, so there was little Jack could do. Jack toughed it out though and tolerated the eight hours in his wheelchair and in the sun very well. Thankfully, the park closed at 5pm!

The other reason we went to San Diego was to attend a Cure CMD Information Day. I was mostly interested in having Jack see one of the doctors who was presenting at the event. He is one of the top neuromuscular doctors/researchers in the country - if not the world. He specializes in congenital muscular dystrophies and has worked at Children's Hospital of Boston and Children's Hospital of Philadelphia and is now at the NIH. Anne Rutkowski, the founder of Cure CMD asked me if I would be interested in having Jack participate in a study being conducted by Dr. B at the NIH to try and determine the subtype of Jack's CMD. Although I'm not that interested in knowing the exact genetic subtype of Jack's CMD, I know it's important to Cure CMD's mission and because I like and respect Anne, I want to do what I can to help. Because it's not an option to take Jack to the NIH, when I saw that Dr. B was going to be at the conference, it gave us an excuse to go to San Diego for the weekend. After a day of seeing patients in clinic, Dr. B and Anne came by the hotel and sat down with us to talk about Jack's history and to see Jack. We hung out in the hotel lobby and had a drink together. Dr. B made it clear that he doesn't usually conduct a consultation while drinking a beer! :) At this point, I need to get Jack's brain MRI taken back in 1999 sent to the NIH and see if I can get Jack tested for a specific genetic subtype that he hasn't been tested for next time we are in St. Louis. The conference itself was very interesting and informative. It was geared more towards medical professionals, but I could keep up for the most part.

It was a busy few days, but lots of fun. Traveling is so hard on Jack because of the time he has to spend in his chair and on his back-up vent (without humidity). He was definitely exhausted at the end of each day, but he is such a trooper. I wish he could enjoy the things that we do, but to be honest, he is happiest at home in his own room and his own bed. It makes me sad, but it is what it is.

Anne, Jack and me at dinner together

Back to the grind tomorrow. Spring Break is officially over and the kids are back to school tomorrow too. (Eric is not happy!)

My Bucket List

2011-03-23T22:07:00.003-07:00

As I near the half century mark, I've been thinking about my Bucket List. When I first sat down to write my Bucket List, it was pretty pathetic. I couldn't really think of anything I want to do before I depart this earth ... except sleep for an entire month - waking up only to eat chocolate and drink beer. :-)

Realizing that I'll have plenty of time to sleep after I'm dead (unless I'm spending my days fanning away the fires of hell), I decided that I really need to think about things I want to do in my life because I don't have a whole lot of time left (best case scenario) and I need to have something to look forward to besides spending my days drafting contracts and suctioning snot.

So, after ~~much~~ some thought, this is what I've come up with so far:

1. Travel to Ireland (can check this off my list after this summer)
2. Rent a beach house on Coronado Island and spend an entire month there ALL.BY.MYSELF
3. Write a book composed from the hundreds of emails between myself and Jack's doctors
4. Write a book about my personal journey as the parent of a medically fragile/special needs child with an incurable disease
5. Hike to the bottom of the Grand Canyon (and back out, of course) ***
6. Take a Caribbean Cruise that includes a stop in Puerto Rico (to visit a very special doctor who cared for Jack)
7. Travel the Pacific Coast Highway from Los Angeles to San Francisco in a convertible, staying in really nice hotels along the way
8. Visit New England in the Fall and stay at a B&B
9. Travel to the UK to meet my sorority sister and one of the most supportive cyber-friends I know - Julie W.
10. A photo shoot with me and my kids by the photographer who took Mary's senior pictures

That's all I've got for now. But, I'm working on expanding my List to include not only things that will take planning, time and money, but also some "little things" that I want to experience and/or accomplish.

So tell me .... what is on YOUR Bucket List?

__________________

*** Btw, I am looking for company on my hike of the Grand Canyon. You have to book lodging at the bottom of the canyon at least a year in advance, so if you are interested in hiking it with me - next year, two years from now, or whenever -- let me know!

Happy Birthday Mary!

2011-03-18T00:22:00.001-07:00

Writing about Mary is much harder than writing about my other kids because she is my only kid who actually reads my blog. Knowing that Mary will read this puts much more pressure on me to make sure I say all the right things and, more importantly, that I don’t say the wrong things. Because trust me, I will hear from her on this!

Where to begin?

I guess the beginning is a good place to start . . .

Mary has been an easy kid from the get go. I was in labor for maybe four hours (induced and epidural in place) and I think I got her out in about 2 pushes. I quite literally could have walked out of the hospital hours after giving birth to her because she was such an easy delivery.

In line with her easy entrance into this world, Mary has always had an easy going and HAPPY personality.

The thing I remember most about Mary when she was little is that she talked ... a lot! Keep in mind that her sister didn't talk at all, so what was typical for most kids seemed liked a big deal to us because we only had Hilary to compare her to. Mary was constantly chattering and constantly in motion. My Aunt used to call Mary "Tigger" because she bounced everywhere she went. My Aunt had been watching Hilary for me and she agreed to watch Mary too. However, that didn't last long because it became apparent early on that Mary is a very social kid and she needed to be around other kids. We put her in a church daycare/preschool when she was two and she loved it. To this day, Mary is my social kid - she enjoys (and needs) the companionship of many friends.

Mary will tell you that one of the worst events of her life was her parents decision to move from St. Louis back to Phoenix. We lived in a great neighborhood in St. Louis where all the kids were about the same age and they played together all the time. I will admit that St. Louis was a much friendlier place to raise kids than Phoenix is. It was so hard for Mary to leave behind her friends when we moved, especially her best friend Rebecca.

Mary has always been comfortable with Jack and all his equipment and she jumped right in to fill her role as the big sister.

Mary has a heart of gold and doesn't have a mean bone in her body. She once told me that she doesn't know how to respond to her cousins when they are sarcastic because to her sarcasm sounds mean and she doesn't know how to be mean (sarcastic) back.

Mary's caring heart and experience with Jack has given her a unique insight and maturity for someone her age and this is reflected in her compassion for other children with special needs. Mary always accompanied me to the trach conferences where she immediately bonded with the kids and came away from every conference with new best friends.

Mary is intelligent, patient, slow to anger, forgives easily, refuses to gossip, is kind, is compassionate, is a loyal friend, is selfless, is generous, is carefree, lives in the moment and is just an all around good kid and a joy to have around. I am so incredibly blessed to have this child in my life. She and I definitely clash at times because I want certainty and order and I need to have a plan in place, while Mary just goes with the flow and doesn't worry about what tomorrow may bring. In thinking about her future and what she wants to do with her life, Mary is not driven by what will bring her the biggest paycheck or the most prestige. Mary is driven by her heart and what she believes will bring her a life of happiness.

Mary hasn't had it easy being the middle child stuck between two siblings with special needs. She's always had to take a back seat to the needs of Hilary and the needs of Jack. Mary's ability to get involved in extra-curricular activities has been restricted because of our inability to "get up and go" with Jack. Mary also has two siblings who she doesn't really have a relationship with due to their inability to communicate with her. Fortunately, Mary has Eric - who is mostly an annoyance right now, but hopefully when they are older they will have a close relationship. Despite her less than typical childhood, Mary has her head on straight and she got there mostly on her own. I am extremely proud of Mary and the person she is. I know Mary is anxious to get out of the house and away from the stress that pervades a family caring for a medically fragile child. I just hope that Mary doesn't fly too far and that that she knows we did the best we could, we love her and we will always be here for her.

Happy 18th Birthday Mary!

It seems like just yesterday you were my sweet little girl

and now you're a beautiful young lady

You are on your way to accomplish great things ....

Godspeed.

Love,

Mom

EOBs

2011-03-15T23:11:00.004-07:00

In my never-ending quest to get rid of the clutter and keep my life semi-organized, I sorted through several months of EOBs (Explanation of Benefits) last weekend. I typically don't pay much attention to the EOBs because 99% of them are for Jack and we have Medicaid as secondary, so I don't need to worry too much about what is or isn't covered or what is or isn't billed correctly. However, I took some time to read through the stack and I was absolutely floored with what doctors/DMEs/nursing agencies charge and what insurance companies pay. The numbers are astounding.

Here are a couple of examples that caught my attention:

Trach Tube
Submitted Charges: $3,448.00
Negotiated/Allowed: $56.38

I don't know which is more shocking, the amount billed or the amount paid. I'm thinking a trach is worth somewhat less than thirty-four hundred dollars and somewhat more than fifty-six.

Nursing Care in the Home
Submitted Charges: $562.50/day
Negotiated/Allowed: $486.70

I remember when I thought daycare for my typical kids was expensive. $2800/week - now, that's expensive!

Oximeter
Submitted Charges: $1,282.31
Negotiated/Allowed: $194.75

My DME company charges over a thousand dollars a month to RENT a pulse-ox machine. I'm okay with the amount actually allowed on this one.

Dr. W
Office Visit - submitted charges $258.48
X-ray of Knee - submitted charges $46.83
Treatment of fracture - submitted charges $1,286.40

These charges by Jack's orthopedic doctor make me mad. When Jack suffered his broken leg in January, we took him to the doctor's office rather than the ER. Not only did the doctor charge for an office visit, he charged for "treatment of fracture". Let me tell you what his "treatment" consisted of --- he took a knee immobilizer and bent it to accommodate Jack's contracted knee and then he handed it to me to put on Jack! For this, he billed insurance twelve hundred dollars. Unbelievable! I like this guy, but I'm extremely disappointed in him for this.

Dr. S
Office Visit - submitted charges $536.00
Negotiated/Allowed $219.47

This charge infuriates me! You may recall that I posted awhile back about how the State was requiring some kids who have Medicaid to switch to a different program (called Children's Rehabilitation Services). As part of this switch, your child had to be seen by the CRS doctor to officially get into the system. So, I jumped through the necessary hoops and made the appointment. This Medicaid doctor then proceeded to charge my private insurance over five hundred dollars for a visit Medicaid required. Total B.S. This charge pissed me off so much that I was going to call them on it. But, time got away and my anger subsided and I never got around to making the call. I also found out that we do not have to become part of the CRS program and can stay with the program we have been with all along because we have private insurance and Medicaid is our secondary. Good thing, because if I had to see that doctor again, I'd probably have a few words for her.

Finally, I offer this one because it's so ridiculous, it's almost funny:

St. Louis Children's Hospital
Ophthalmic Exam - General Anesthesia
Submitted charges $583.15
Negotiated/Allowed $4,198.90

So let me get this - they bill you five hundred and you pay them four thousand? Nothing like being paid more than seven times what you billed.

Insurance companies rank right up there with the government for being run with a complete lack of efficiency, accountability and responsibility!

_________________________

Stay tuned ... Mary's 18th birthday is later this week and I promise my "All About Mary" post I promised a year ago. I figure if I tell you I'm going to post it, I will have no choice but to write it!

Happy Birthday Eric

2011-03-12T22:59:00.001-07:00

Today is Eric's 9th Birthday! Shortly after Eric was born we moved back home (to Arizona) to be near my family. It's hard to believe that we've been home almost nine years. Sometimes it feels like we never lived in St. Louis. We moved to St. Louis with two kids and returned to Arizona with four!

Anyway .... back to Eric's birthday.

Eric's new favorite thing to do is roller skate. So today for his birthday, we hit the roller skating rink. And, you'll be happy to know that we brought Jack with us and he loved it!

I brought the wrong camera lens with me, so the pictures aren't very good. But, I thought I'd share a few anyway.

Eric is not exactly a star skater .... yet :)

I think there is a little acting going on here!

At the pizza place afterwards -

Jack isn't sure what to do with all those tickets!

The handsome (and sweaty) birthday boy!

Eric's Street-O-Life

2011-03-06T19:22:00.001-07:00

Last week the kids at Eric's school (and all across the country) celebrated Dr. Seuss. As a follow-up to that, Eric had an assignment this weekend to make a map of his life. The directions were to create a map that illustrates your life and dreams and to write a paragraph about the places you will go. Here is what Eric came up with:

(click to enlarge)

I thought he was very creative, but wonder whether it's time to hire a therapist given that there aren't too many happy places along the Street-O-Life! Seriously, this kid is too grown up for his own good.

Ryan House Run

2011-03-05T22:11:00.000-07:00

Today was a beautiful day in the Valley of the Sun (aka Phoenix) and we started it out participating in the Ryan House Run. The event featured a half marathon, 10K, 5K and 1 mile family fun run. Eric and I (and a group of our friends) participated in the 5K (some of us walked, some of us ran!) It was so much fun and for such a great cause.

Pre-race

At 6am in the morning - Eric is wondering why he agreed to do this!

A friendly leprechaun in the crowd

The kids

The scenery along the way -- stunning!

Almost to the finish!

These two ran and finished about 25 minutes ahead of the rest of us!

Our "team" of Ryan House (and

Jack) supporters

The kids showing off their "medals"

(made of foam, much to their dismay)

Two of the four kids in our group are former trach kids, both of whom have less than perfect airways and, yet, they walked the entire 5K (3 miles) and kept up with the best of them. Good job Sara and Ellie! (and Eric and Orla too!)

Today was a fun day .... looking forward to the Ryan House Run again next year.

Happy Birthday Peg!

2011-03-01T01:00:00.001-07:00

Today is our dear friend Peggy's 60th birthday. 60!! Seriously, how can she be 60? (same way I'm almost 50, I suppose!) Peggy was in her 40s when we first met her .... on a warm June day back in 1999. My long time blog followers have already heard the story of Peggy and how she almost didn't come to be one of Jack's nurses and, as a result, one of my very best friends. For those who don't know the story, I'll share it again:

Peggy came into our lives about a week after Jack was discharged from the hospital as a baby - trached and vented - back in June, 1999. Peggy walked into our home to a scene she will always remember. Jack's night nurse and I were standing over Jack's crib, which was located in our living room, bagging him through a period of respiratory distress. What I didn't know at the time was that Peggy had made it very clear to the nursing agency she was working for that she didn't take care of kids on vents. Trachs, yes ... vents, no! Not a problem they told her, Jack was only on the vent at night (not exactly true). When she left that day, Peggy told me that although Jack was a really sweet baby, she probably wouldn't be back because she didn't take care of kids on vents. Well, Peggy couldn't stay away. She fell head over heels in love with Jack, and he with her and she never looked back. Peggy has been a significant part of Jack's and our lives ever since that day back in June, 1999.

Peggy took on the challenge of caring for medically fragile children in their homes not because she had to work, but because she has a special place in her heart for kids like ours. Peggy didn't just come into your home and provide nursing care for your child, she embraced and cared for the entire family. She would often take "her" kids into her home for the weekend so that mom and dad can have some respite time. When we lived in St. Louis, she always included our family in holiday celebrations with her own family because we didn't have extended family in St. Louis. She attended my kids' First Communions, graduations and special events in lieu of my own family, who lived out of state. And, as difficult as it was for her to say good-bye to "her" Jack when we moved back to Arizona, Peggy made the trek across country with us when we moved back home. Peggy and her husband have always graciously opened their home to us when we come back to St. Louis for Jack's doctors' appointments and surgeries. Peggy is like a sister to me and it is such a privilege and a blessing to have her in my life. If there is one thing that makes the difficulty of this life with Jack worth it -- it is the fact that we gained a friend named Peggy!

Some pictures of Peggy and Jack over the years:

Happy Birthday Peg ~ We Love you!

Busy Week

2011-02-27T20:56:00.001-07:00

Okay, sorry for the delay in finishing my book reviews (See post below this one for reviews). Last week was insanely busy. Jack has had a stye on his eye for a couple of weeks that wouldn't drain and was looking infected and, because I wasn't going to drive 1500 miles to St. Louis for an eye infection, I had to break down and make an appointment with a local ophthalmologist. We hadn't seen this particular doc in years, but he was very nice and seemed genuinely interested in helping Jack. He noted that there is some nerve damage in Jack's left eye and the need for surgery due to high pressures may be sooner rather than later and may end up happening here instead of St. Louis. If Jack's eye isn't better in two weeks, the opthalmologist will put him under to lance the stye and then he'll do an EUA at the same time. If the stye heals, then he scheduled an EUA for June. It's the first time any eye doctor in this City has scheduled an EUA on Jack. They do them routinely in St. Louis. Time will tell where we are headed on this one.

The day of Jack's doctor's appointment, I went outside to discover this on our van:

This is the second time the windows in the van have been smashed by some punk teenagers walking around the neighborhood at night (I'm guessing). The original hole was small - like a rock was thrown through the window. This picture is after driving on the highway to the doctor's office - the glass caved in and barely avoided getting all over Jack and his nurse. We can't park the van in the garage because it has a raised roof. I think it's time to get video cameras on the house with a big sign that says "You are under surveillance" to deter the punks!

Oh, and here is my do-it-yourself repair job to my car following the hit-and-run last month when we were in Flagstaff:

Nice, huh? I'm sure our neighbors like living next door to the Beverly Hillbillies!

Topped off the week by spending five hours in the emergency room with this kid:

She had been having pretty severe pain in her lower back for a couple of days and we thought she might have kidney stones again. They didn't find any kidney stones, but they did find a stone in the tip of her appendix. Because the appendix didn't look inflamed, they sent us home with instructions to return if the pain became worse or she started vomiting or running a fever. From what I read online after I got home, it's possible that the stone could eventually lead to an appendicitis. So, I guess we'll be on the alert for any signs of appendicitis.

While not a week filled with earth-shattering events, it still was a busy one. I missed a lot of work, which means I have a lot of work to make up because deadlines don't go away just because I'm not there to get the work done. Looks like I'll be working weekends for awhile!

Hoping this next week is a quiet and productive one!

Peace my friends.

More Book Reviews

2011-02-27T20:55:00.005-07:00

More book reviews as promised.

I just finished reading this book:

The Essence of Happiness by His Holiness the Dalai Lama and Howard C. Cutler, M.D.

A short, simple, easy to read “reflections on overcoming suffering and obstacles to create a life of happiness”. It's one of those books you can pick up and read over and over again when you need to re-focus and reflect on finding your “happy place” in life.

My absolute favorite reflection found in the book:

If you want others to be happy, practice compassion; and if you want yourself to be happy, practice compassion.

_____________________________

Along similar lines as “The Essence of Happiness” - but with more content are two of my favorite books written by Rachel Naomi Remen, M.D.:

My Grandfather’s Blessings – Stories of Strength, Refuge and Belonging

Kitchen Table Wisdom – Stories That Heal

Dr. Remen, “whose unique perspective on healing comes from her background as a physician, a professor of medicine, a therapist and a long-term survivor of chronic illness” shares a collection of true stories in both of these books. The stories are short, easy to read and offer many uplifting, insightful and worthwhile messages. What drew me to this author was reading in her bio that she has trained many thousands of physicians to practice medicine from the heart and her groundbreaking curriculum “The Healer’s Art” is taught in nearly half of American’s medical schools. Dr. Remen was a pediatrician (at Stanford University) who gave up pediatrics to counsel people suffering from terminal and chronic conditions.

I’ve read both of Dr. Remen’s books over and over again because the stories are short and enjoyable and I learn (or am reminded) of something new each time I read them.

______________________________

How Doctors Think by Jerome Groopman, M.D.

This book was recommended to me by one of Jack’s doctors who made the book required reading for the interns and residents rotating through the PICU. I loved this book and think it is a must read for anyone who deals with the medical profession on a regular basis.

From the inside cover of the book:

On average, a physician will interrupt a patient describing her symptoms within eighteen seconds. In that short time, many doctors decide the likely diagnosis and best treatment. Often decisions made this way are correct, but at crucial moments they can also be wrong – with catastrophic consequences. In this myth-shattering book, Jerome Groopman pinpoints the forces and thought processes behind the decisions doctors make. Groopman explores why doctors err and shows when and how they can – with our help – avoid snap judgments, embrace uncertainty, communicate effectively and deploy other skills that can profoundly impact our health. This book is the first to describe in detail the warning signs of erroneous medical thinking and reveal how new technologies may actually hinder accurate diagnoses. How Doctors Think offers direct, intelligent questions patients can ask their doctors to help them get back on track.

It’s been several years since I’ve read this book and I could definitely stand to read it again. I highlighted things in the book that stood out to me or that I wanted to remember. A few of the things I highlighted:

Does acknowledging uncertainty undermine a patient’s sense of hope and confidence in his physician and the proposed therapy? Paradoxically, taking uncertainty into account can enhance a physician’s therapeutic effectiveness, because it demonstrates his honesty, his willingness to be more engaged with his patients, his commitment to the reality of the situation rather than resorting to evasion, half-truth and even lies.

(I couldn’t agree more!)

There is nothing in biology or medicine that is so complicated that, if explained in clear and simple language, cannot be understood by any layperson.

Laymen should understand the inherent limits and potential biases in the beholder’s eye, so that when there are important decisions to make, they can ask for another set of expert eyes.

(On why getting a second opinion is a good thing.)

This last one that I highlighted makes me laugh now. I got the book shortly after Jack had his spinal fusion surgery in 2006. Jack’s spine surgeon was an arrogant ass, to put it bluntly (but a good surgeon nevertheless). I absolutely drove him up a wall with all my questions (which I know because of comments he made to other people that got back to me). In any event, it didn’t surprise me that of the physicians interviewed for this book, the spine surgeons refused to reveal their identity:

The spine surgeons I spoke with were reluctant to be identified by name out of concern that candid answers would damage their standing in the medical community and reduce patient referrals.

______________________________

Finally, for the perfectionists like myself out there (and I can think of a few) -

The Pursuit of Perfect – How to Stop Chasing Perfection and Start Living a Richer, Happier Life by Tal Ben-Shahar, Ph.D.

For the true perfectionists out there, this book really hits home as the author talks about the behavior of the perfectionist. The author discusses the difference between the Perfectionist and the Optimalist.

The Perfectionist views life’s journey as a straight line. The Optimalist sees it as an irregular spiral.

The Perfectionist is afraid of failure. The Optimalist uses failure as feedback.

The Perfectionist is rigid, critical and defensive. The Optimalist is adaptable, forgiving and open to suggestions.

The Perfectionist focuses on the “destination”, setting goals that are overly ambitious or unobtainable. The Optimalist focuses on the journey and the destination.

According to the author, by rejecting the all-or-nothing thinking of the Perfectionist and embracing the more nuanced, complex mind-set of the Optimalist, we can learn to accept our failures along with our successes and lead much happier lives.

The book has a lot of good exercises. One that I found to be particularly useful – and one that I try to use when I get irritated with myself because I did or said something stupid or less than "perfect" - is the PRP Process. The PRP Process involves giving yourself permission to be human, reconstructing the situation and gaining a wider perspective. When applying the PRP Process to a particular event:

1. Give yourself permission to be human: acknowledge what happened as well as the emotion that you are feeling as a result.

2. Reconstruct the situation. Ask yourself what positive outcomes the situation can have. This does not mean you are happy about it, but simply that there are benefits that can be derived from it. Can you lean something new? Can you gain a new insight in yourself or others? Can you become more empathetic or more appreciative of what you have in life?

3. Finally, take a step back and gain a wider perspective on the situation. Can you see the situation in the larger scheme of things? How will you see the situation a year form now? Are you sweating the small stuff?

The PRP Process really does help by putting things into perspective.

This book is a very good read for the perfectionist personality.

_____________________________

That concludes my reviews for the books I've read recently, as well as my favorite books to date. As you can see, I'm not really into reading novels or fiction. Although, I do like a good Nora Roberts book on occasion. I mostly read to learn and to try and improve myself, not so much to escape. Maybe that's my problem. I should read to escape more, eh?

Visitors

2011-02-22T21:51:00.003-07:00

Sorry, I didn't have time to write my next book review, as we had visitors tonight.

Holly - one of Jack's former St. Louis nurses - and her family are in town for the week and they stopped by for a visit. Holly was Jack's primary nurse for the first year and a half of his life. She was an awesome nurse and taught me so much in those early days. These days, Holly keeps busy with her very busy household of boys! We love Holly and her family and appreciate that they always take the time to stop by when they come to Phoenix.

Thanks for staying with me on my previous book reviews. You guys are the best!

Book Reviews

2011-02-22T00:06:00.014-07:00

Book Reviews (simply my opinion).

Four Walls of My Freedom by Donna Thomson

This book is written by a mother who recounts life raising her son who has cerebral palsy and requires 24/7 care. Her son is now 22 years old and he spends the majority of his time in bed because it is where he is most pain-free. When I bought the book, I thought it would be more about how the author’s son finds happiness and value in his life despite being bedridden. While the author does touch on her son’s present life, she talks mainly about her son’s life growing up – his schooling, social interactions, his many hospitalizations and surgeries and the challenges faced to get him the services and care he deserves. The author and her family currently live in the UK, but have also lived in Canada – so her perspective of the services her son received and services she believes he should receive as an adult are looked at from a national healthcare system perspective – which I don't have experience with.

Several points in the book that I flagged as noteworthy:

Something called the “Capability Approach” which focuses on the kind of life that people manage to lead and whether that life has value to the individual, from their perspective, not ours. For example, some people (including myself) may ask how can Jack be happy when all he does is lay in bed all day. But, from his perspective, he is loved, pain-free, well cared for and entertained every day and that is all he needs to be happy and have a life of value. (Of course, I’m just surmising this, as Jack has never actually told me how he feels – I can only base it on what I observe.)

When talking about mothers of children with severe disabilities, the author states:

“It is a paradox that in order to be free, the mother of a child with severe disabilities has to relinquish the choosing self. I can remember thinking more than once, Okay, I give up. I give up on imagining that I have a life.” … “It is ironic and paradoxical that the key to surviving the experience of caring for someone as dependent as my son means giving up on freedom of choice. The capabilities of my family cannot be measured on the same scale as others – it‘s part of our job as people who love someone who is very dependent to redefine happiness and achievement.”

“Mothering a child with medical needs is a very public but lonely endeavor. Public, because a myriad of professionals weigh in with opinions on how Nicholas should eat, breathe, talk, sit and even be held, but also lonely because all these prescribed therapies are carried out with your child alone at home. There are no neighborhood mother-toddler groups for young children with severe disabilities.”

What I found most interesting was the author’s belief that she has a moral right to the freedom to grow old without being her son’s caregiver 24/7. “A retirement of sorts, a hope of not changing my son’s diapers when he is forty-five and I am past eighty is a moral ‘right' in my view.” In this regard, she believes that the community, the government and the families have to come together to find a way to care for people with disabilities (as well as the elderly).

I’m not sure I agree that we are "entitled" to be released from the burdens of caring for our children. Perhaps when our “children” are forty-five and we are eighty, it may be necessary, but I'm not sure it's our right. I can't even imagine having to put Jack’s care totally in the hands of someone else. I suppose when he’s twenty, I will think differently, but right now, I can’t even “go there”.

Okay, so this book review is way longer than I intended. You still with me?

In summary, I will say that the book was an interesting read, but it had more of a political slant to it rather than being a human interest story. I prefer the latter. The book definitely gave you pause and food for thought, so it was worth the read.

When Bad Things Happen to Good People by Harold S. Kushner

This book was written by a Rabbi whose son was diagnosed with a degenerative disease when he was three years old. His son died when he was in his teens. The book primarily focuses on God and prayer and the relationship between the two. Interestingly, the author believes as I do, that God doesn’t answer specific prayer requests. (See, “The Tough Question” under Blog Thoughts on my sidebar). The author discusses how prayer does serve a purpose, but not in the way that many people believe it does. I’m in agreement with the Rabbi for the most part in this book, except for his belief that God doesn’t answer our prayers because some things are too big for even God to handle. I think God can handle whatever he chooses to handle, but he’s decided some things are best left for us to handle without his intervention -but with his support and guidance.

An excerpt that is good food for thought:

“Everyone is our brother or sister in suffering. No one comes to us from a home which has never known sorrow. They come to help us because they too know what it feels like to be hurt by life.

I don’t think we should confront one another with our troubles. (You think you’ve got problems? Let me tell you my problems, and you’ll realize how well off you are.”) That sort of competitiveness accomplishes nothing. It is as bad as the competitiveness that spawns sibling rivalry and jealousy in the first place. The afflicted person is not looking for an invitation to join the Suffering Olympics. But it would help if we remembered this: Anguish and heartbreak may not be distributed evenly throughout the world, but they are distributed widely. Everyone gets his share. If we knew the facts, we would very rarely find someone whose life was to be envied.”

I’m not sure the book ever really answered the question “WHY" bad things happen to good people. I wasn’t overly impressed with the book, but it was an easy read and if I took away one positive point from the book (which I think I did), it was worth the read.

________________________________

It’s late, so I’ll have to give you my review of “The Essence of Happiness” tomorrow. I’ll also share a list of books that I’ve read over the years that I really like. No more long book reviews though, I promise!

Seriously, are you still with me?!

Final Resting Place

2011-02-20T23:10:00.003-07:00

A few weeks ago, my sister called to tell me my mom's headstone came in and was placed at her gravesite. I've only been out to the cemetery once since my mom died and it wasn't too difficult because her grave wasn't marked, so who knew if I was even looking at right spot in the ground. Today was a little harder because it was all right there in black in white ...

It sort of takes your breath away. My dad jokes and says that we are good to go now, all we have to do is throw him in there with my mom. Let's just hope it's not anytime in the near future! Did I mention that my sisters and I are going to Ireland this summer with my dad? We are taking a couple of our kids with us and we'll be there for about ten days. After my sisters and I head home, the grandkids and their grandfather will spend an extra week traveling Ireland together. Should be a memorable summer for all of us.

I am working on a book review post for the three books I've read over the last two weeks. I had hoped to have it finished for tonight's post, but I went to my sister's tonight for dinner and after a few sangrias, my brain isn't in any condition to compose a meaningful post. But tomorrow .... I promise!

The three books I've read are:

-The Four Walls of my Freedom by Donna Thomson
-When Bad Things Happen to Good People by Harold S. Kushner
- The Essence of Happiness by the Dalai Lama and Howard C. Cutler, M.D.

Stay tuned and thanks for checking in!

I Feel Like I Need to Post Something

2011-02-14T20:22:00.003-07:00

I returned today from spending a few days in Ohio with my friend Anne. It was so nice to sleep in a comfortable bed with peace and quiet all around. No baby monitor, no swooshing of the vent, no suction machine, no demands. Something all of us moms need every once in awhile. I didn't take my computer and I didn't take my camera. So, I've got nothing to share.

Everyone survived in my absence (not that I was worried).

It's back to reality ~~tomorrow~~ ~~tonight~~ the second I walk in the door.

Unfortunately, I've got nothing new, nothing exciting and not even any pictures to share.

But, I really do appreciate all of you who check in on us.

We are all well.

Except for Mary. She has an eye infection (in addition to the flu that won't seem to go away), so Mark took her to the pediatrician today. The last time our pediatrician saw her was in 1995*.

Okay, so, I don't do well-checks. Is that so wrong?

(*she's been to the doctor since 1995, just hasn't seen our primary pediatrician since before we moved to St. Louis).

I've been doing a lot of reading lately. I'll have to share some of the books I've read and give you my take on them. Some good stuff! (Thanks Caty!)

More later ... thanks for checking in.

Checking In

2011-02-06T22:50:00.011-07:00

It's been a while. Not much going on ....

Except ...

The flu is back. Underneath that blanket is a sick Eric. It's been a cyclic flu season. Seems Eric gets better for a week or so and then he gets sick again. Eric is not happy that his sick times have coincided with Christmas break and weekends. So far, he's not missed much school.

Woody has a broken leg and ....

. . . so does Jack!

(casted Woody courtesy of Jack's nurse, Kristi)

As I've mentioned in the past, Jack's bones are very fragile and it doesn't take much to cause a break. We took Jack directly to his orthopedic doc instead of going through the ER and, initially, I wasn't happy when he didn't cast him. He was just going to send us home without anything until I mentioned that Jack needed some support when he is transferred from his bed to chair. He gave us an ill-fitting splint, but it seems to be doing the job. I emailed Jack's neurologist and asked her if it was common to not cast breaks for non-weight bearing kids. She reassured me that fractures are common in kids like Jack and that it's typical to only splint - not cast. Jack is on the mend and isn't in any pain (provided we are very careful with his leg). Unfortunately, breaks are a big concern with Jack and, no doubt, there will be more in the future.

We closed out this weekend watching a great Super Bowl game. I'm not necessarily a fan of the Packers, but I'm definitely not a fan of the Steelers, so I was happy with the outcome. :)

a birds-eye view of everyone watching the game

(my dad had his hand on Jack the entire time he was sitting next to him -- very sweet)

I'm heading to Columbus, Ohio next weekend to visit my friend Anne. I'm not so sure about the timing, Columbus in February = snow. Hopefully there won't be any weather delays.

That's the update from here. Thanks for checking in!

________________________________

This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap; the being a force of nature instead of a feverish selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy.

(George Bernard Shaw)

You've Got A Friend In Me

2011-01-29T21:59:00.002-07:00

Kristi got Jack a Woody doll for Christmas. He totally LOVES this thing. Who knew? I can tell Jack loves his new friend because when he sees Woody, he gets the biggest smile. It just never occurred to me that Jack would ever be attached to a doll. I thought it would be appropriate if Jack and his friend had something in common, so Woody got a trach. Jack, again, loves it!

Eric ... not so much so. His comment when he saw the new and improved Woody ~

"Ewwww, I don't like neck injuries. Take that thing off, it creeps me out!"

Hopefully, he's doesn't feel the same way about his brother!

That Time of Year Again

2011-01-26T22:11:00.000-07:00

The running club at Eric's school is off and "running". Today was Eric's first race of the season (they only have three or four races total, so it's not much of a season). He did well, kept a good pace and finished with a positive attitude! There were hundreds of kids participating in the race and at least that many parents cheering their kids on, so it was hard to get pictures of Eric, but I was able to snap a few with my telephoto lens. The weather was perfect for race day - sunny and in the mid-70s (that's for all my friends suffering with snow right now :)

pre-race

and he is off ...

about half way to the finish line

Hi-ya mom

after crossing the finish line

enough already mom!

team shirt

Thanks for checking in. All is well at the Ranch .... wishing the same for all of you.

An Unburdener

2011-01-23T23:59:00.003-07:00

The other day, I pulled off my bookshelf one of the many "parents of kids with special needs" books that I purchased years ago but never read. The forward to the book was written by a pediatric geneticist. He talked about how the role he has come to play for many of his parents is that of an "Unburdener" - someone who is there for the parent "to talk to, or, more accurately, to talk at, someone who won't criticize, or answer back or feel guilty."

I like that term -- an "Unburdener". I understand exactly what he means and how important it is as the parent of a child with a chronic medical condition that can't be fixed, to have someone in your life who is willing to act as an Unburdener. I've been fortunate to have several of Jack's doctors act as an Unburdener and I can say, without a doubt, that my sanity the first few years of this journey was saved because of these doctors. I needed to know that there were doctors out there who truly cared about Jack and this crappy hand we had been dealt. I talked "at" these doctors relentlessly. They were - and continue to be - accessible, patient, compassionate and responsive, without judgment or the need to come up with an answer. They simply listen. Twelve years into this journey, my need to be "unburdened" isn't nearly as great as it was in the beginning of this journey. However, there are still those times when I just need to talk "at" someone.

After reading about the physician's role as an Unburdener, I sent an email to the one doctor of Jack's who has been my primary Unburdener over the years, to thank him for all he's done and to remind him to never underestimate the profound difference he makes in the lives of parents like myself who he so unselfishly serves as an Unburdener. His response says it all:

You are proof positive that physicians should not be afraid to allow families to contact them by email or phone - it is such a small 'sacrifice' compared to what the families are going through. You have never ever been a 'burden' and it's only been a delight to play a small part in your journey.

We need more Unburdeners - and doctors -- like him in the world.

Who has been an Unburdener for you?

Snow Day

2011-01-17T22:30:00.005-07:00

The kids very much enjoyed their day in the snow. Mary took a private snowboard lesson, which gave her the opportunity to learn how to use a snowboard (which she has no experience with), as well as got her to the front of the lift line (which was very long). She had a blast, but was exhausted at the end of her two hour lesson. Eric wasn't quite as adventurous and was happy to just play in the snow and throw snowballs! The weather was perfect - it was sunny and not too cold.

We are so thankful for Ryan House and its wonderful staff who gave us this opportunity to get away for the weekend. Jack did well, but I think he was happy to see the familiar faces of both his nurses who stopped by to visit!

Renting the gear

all geared up and ready to go

playing in the snow

all smiles after a couple of hours on the slopes

let the snowball fight begin

I love this shot!

Unfortunately, the weekend did not end on a good note. This is how we found our car Sunday morning as we were getting ready to leave

Needless to say, no note was left and there were no security cameras to catch the creep who hit my car and ran. Fortunately, the damage is all cosmetic and the car is still drivable. As of now, the fender is being held up by duct tape. I'm not in a hurry to get the car fixed because I'm not in a hurry to spend the thousand dollar deductible! Grrrr!

Back to the grind tomorrow. Have a great rest of the week my friends.

Taking the Leap

2011-01-14T00:05:00.009-07:00

This weekend I'm finally taking the Leap and will deliver Jack to the wonderful staff at Ryan House and I will NOT be staying with him. Can I do this? It's so incredibly hard just to think about it, let alone do it. The fact is, when I stay with Jack at Ryan House, I'm not giving myself any respite. The issue is not my confidence in the staff at Ryan House, it's my inability to "let go". But, I must do this. I've been given an incredible resource and opportunity that not too many parents of medically fragile children get and I have to take advantage of it.

Right?

The rest of us are heading to Flagstaff to enjoy a weekend in the pines and snow, and a little sledding and snowboarding. Personally, my butt will be parked in the lodge by the fireplace with a drink in my hand! Although, I may venture out for a picture or two.

It's a little strange to be getting away as a family of four.

Both of Jack's nurses plan to stop by Ryan House to check on Jack, which makes me feel better. I know everything will be fine, but it's nice to know that there are people in town who can help out if needed.

Wish me luck .....

and wishing all of you a wonderful weekend.

The Good Times

2011-01-09T19:21:00.024-07:00

Lest I gave the impression that being a SN parent "sucks" all the time, I thought I'd share some of the good times. The wonderful doctors, nurses and therapists who have shared this journey, the amazing friendships I've made with my fellow trach moms and the good times celebrating birthdays and family. There is much good, as I so clearly reminded myself in putting together this montage.

Thank you for all your supportive comments to my last post. This is definitely a road that must be traveled together - with friends who truly understand.

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