So Much To Be Thankful For

As we close out the year, I have to say this has been Jack’s best year EVER! It’s the first year he hasn’t stepped foot (or wheelchair) inside a hospital. Part of the reason we avoided the hospital this year is because we chose not to return to St. Louis Children's Hospital for Jack’s annual checkups – which always involves multiple appointments at the hospital and at least one procedure in Same Day Surgery. Add to that the fact that Jack has been amazingly healthy and, the end result is a fantastic year for all of us. When Jack has a good year, we all have a good year.

This year I had the good fortune of spending a few days in Las Vegas with my fellow sorority sisters – women who “live the life” and who I count among my best friends. I also made my first trip to New Jersey/New York for my sister’s graduation from Columbia University. Lastly, we took our first family vacation together since before Eric was born and spent five wonderful days in San Diego. It was so refreshing to travel for fun this year instead of for doctors’ appointments. And what better way to finish the year than with Jack’s room makeover and the joy it has brought him. While the year was not completely without sadness due to my mom’s brain cancer diagnosis - my mom has thrown the statistics out the window and is still with us with no tumor recurrence. That is truly remarkable!

Last January, I shared with you the following:

So, I begin the New Year still somewhat lost, but with the resolve to let go of the need to always have a plan … to allow myself to simply enjoy the journey and not worry about the destination. I resolve to live life, not merely exist. I resolve to look at the view.

I end this year not lost, but refreshed and uplifted. I desperately needed a good year for Jack and I am so thankful to have received it. It’s amazing what good health and staying away from doctors will do for one’s mental well being. I didn’t merely get through this last year – I enjoyed it and I soaked in the view. I feel prepared to tackle whatever 2008 brings (not that I'm asking for any challenges).

I am thankful for so much this year – for Jack's good health, the opportunity to spend time with family and friends and the gift of some very special people who gave Jack the room of a lifetime. So ……… you know me and how much I love to create montages :-) If you can stand to watch another one, I share with you all that I have to be thankful for this last year:

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HAPPY NEW YEAR TO EACH AND EVERY ONE OF YOU AND THANK YOU FOR SHARING OUR JOURNEY AND SUPPORTING US ALONG THE WAY

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Your Dash

Today's Food for Thought:

Your Dash


I've posted this link before, but it's such a powerful message and a peaceful way to spend a reflective minute and a half.

Christmas "Fun"

We had a very nice Christmas and hope you did too. Christmas Eve didn't go as planned, however, because Jack's ventilator decided to stop working just as Mark was getting ready to bring him to my sister's house. The other kids and I went to Christmas Eve Mass and the plan was that Mark would meet us at my sister's house for dinner. Mark called me because the vent wasn't working right -- it wouldn't deliver any breaths when it was hooked up to Jack and it wouldn't turn off at all. Mark put Jack back on his other vent and then called Apria Healthcare and told them to bring out a replacement vent. Well, for my friends who also have to deal with Apria on a regular basis, does it not surprise you that Apria tried to get away with telling us they would bring a replacement vent the day after Christmas. Wrong! The RT told Mark "you do have one working ventilator sir". HELLO, we have a back-up vent for this very reason. We asked him what we were supposed to do if our back-up vent went out and we then had no back-up? We stressed the fact that we pay for two vents for a reason and he'd best get us a new vent now. We then got a call telling us that they didn't have any ventilators in their warehouse. Okay, so the only company that provides the entire Phoenix area with ventilators has NO back-ups in their warehouse? Mark's exact words to the guy were "that's B.S.!" Supposedly, they had a vent in another office, clear across town and he didn't have a key to get in the office. Let me get this straight ... the RT who is on call has no access to the only facility that allegedly has the only back-up vent in the entire valley. Are you believing any of this? Me neither. After multiple phone calls and our refusal to budge on the issue (and me already mentally composing my letter to the newspaper, the Department of Health, and every other conceivable person I could think of) ... the guy finally agreed to bring us out a back-up vent. (I'm not sure how one magically appeared.) Needless to say, he didn't have much of a Christmas spirit when he arrived at our house at 11pm on Christmas Eve! The really scary part is that it took over an hour for someone to return our phone call after reporting that we had a malfunctioning ventilator. If we were strictly Medicaid and didn't have private insurance, we wouldn't even get a back-up vent, so we would have been bagging Jack for over an hour before we even got a phone call and who knows for how long before they would have gotten us another vent. Apparently, Apria doesn't understand that a ventilator is LIFE SUPPORT and requires immediate action. Anyway, we survived our Christmas Eve crisis and everything worked out in the end, but Mark and Jack missed out on spending Christmas Eve with family.

Thankfully, Christmas Day was relaxing, fun and uneventful. Here are some pics:

Jack and his cousins and sister hanging out at the park after Christmas dinner

The cousins playing a little basketball


Christmas Eve -- hanging out in Jack's room wrapping all the gifts (and waiting for the Apria guy)

Eric leaving his Aunt Joan's house -- so happy about the size of his gift

Christmas Blessings

The light of the Christmas star to you
The warmth of home and hearth to you
The cheer and good will of friends to you
The hope of a childlike heart to you
The joy of a thousand angels to you
The love of the Son and God's peace to you.

An Irish Christmas Blessing

Wishing you all a very Merry Christmas!

~~~~~~~~~~~~~~~~~

A funny version of the 12 days of Christmas

My little nerd

Eric discovered a new "toy" this weekend ... a calculator. He gets so excited when he adds two numbers together and gets an answer. He's been adding numbers all day. He was cracking me up, so I got my camera and took a short video clip of my little nerd:

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And here is what he thought about me sharing the video:

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(How can I NOT post that ... it's too cute!)

It's been a quiet weekend and I've been stuck at home for most of it. Mark is studying for his Series 7 license. He has to take the test on the 31st, so he's at work all the time and that leaves me stuck at home. I still have Christmas shopping to do and I'm running out of time! Kristi is coming this afternoon and staying until I get all my shopping done. Hopefully, I'll be done in a few hours. My brother and his four kids are in town from Columbus, Ohio. No one else is coming into town, so we don't have quite the crowd we had last year, which is a bummer because it was fun to have everyone together.

Good news for my mom ... she had her 2nd post radiation MRI (~ 6 months post surgery) and she is still "clean" (no tumor growth). This is really remarkable given the type of tumor my mom has. She is definitely defying the odds! We can now relax for another two months.

Hope you are all having a quiet and restful Sunday.

The List

Despite the fact that I said no lists this year, I was presented with Eric's list last night. Anyone know where I can find a "spider costume that lets me climb walls"? And, what about a "toy house that is a copy of our house"? Where does he come up with this stuff! No doubt, he'll be disappointed come Christmas morning.

This week isn't turning out to be as low key at work as I had hoped, so it looks like I'll be part of the insanity at the malls this weekend. Deep breaths ....

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Speaking of Jack's inability to talk, I received Jack's "Augmentative and Alternative Communication Evaluation" in the mail today. This report is what we hope convinces the insurance company that it needs to approve and pay for the eye gaze system. We should get the pre-authorization (or denial) fairly quickly. I'm really not too worried that it will be denied based on prior experiences with insurance paying for aug-com equipment.

The report states, in part, that "Jack's greatest communication strengths are his ability to indicate his understanding of what is spoken to him by facial expressions and eye gaze. The most significant weaknesses are his inability to use speech to express his needs, interests and wants due to severe dysarthria and his inability to independently communicate using his Augmentative Communication Device."

I now have a word to describe Jack's inability to speak -- "Dysarthria" -- which is "a motor speech disorder caused by paralysis, weakness, or inability to coordinate the muscles of the mouth."

This supports what I've believed all along, that it's not that Jack doesn't have anything to say, it's just that he can't get his mouth to say it. His muscle weakness is so severe that it even affects the muscles of his mouth and face. Well, at least he can still smile :-)

Today we had our every two month meeting at the house with the representatives from the vent dependent program, the nursing agency and the Department of Developmental Disabilities. Of course, everyone was blown away by Jack's room. You just have to picture Jack laying in his bamboo hut bed with its leopard spotted sheets and he has this big ol' grin on his face -- thinking he's the king of the jungle! One of the women who was at our meeting today made the comment that Jack is the "happiest sick kid she knows." Isn't that the truth!

Well, it's late and I need to catch a few hours of sleep before I face another day of demands. Have a great day my friends and stay warm.

Ciao.

Enjoying the Season

In the spirit of enjoying the Season ... the kids decorated cookies today with their cousins and friend Sara. We are down to the last week and I've yet to get my Christmas shopping done. I just can't force myself to go near a mall on the weekend. Work should be relatively low key this week, as most my big deadlines have come and gone. The plan is to get out of the office earlier and do some evening shopping. The mall should be less hectic, yes?

I have to give a short commentary on the Newspaper article. I wish they had elaborated a little more on Jack's medical condition. No where does it mention that he is ventilator dependent, which is the main reason he receives all his therapy and schooling at home and why it is difficult to get him out and about much. People who have read the article (and who don't know Jack) have asked why Jack doesn't talk or go to school since, as far as most people know, the majority of children with MD are much higher functioning than Jack. However, Jack has a very rare form of MD called "Muscle-Eye-Brain" congenital muscular dystrophy and it not only severely affects his muscles - he also has defects of his eyes and brain. I really have no idea why Jack can't talk, it makes no sense to me. I suspect it's a processing problem. There is a lot about Jack's disease that I don't have the answers to, mainly because I haven't asked the questions. Jack's neurologist has always been very good at taking her cues from me. She's never told me more about Jack's condition than I've asked. In the beginning, I didn't ask because I didn't want to hear it. Now, I don't ask because it doesn't really matter.

Anyway .... I veered a little off topic there! One more thing on the article, I had to chuckle at the statement that Jack's therapists have told me that Jack's brain is functioning. I'm not sure where they got that from since it's the other way around. I usually have to remind the therapists that Jack understands, even if he can't talk. Regardless, the article really wasn't about Jack (I'm just neurotic about details), it was about Room for Joy and the wonderful work they do and from that perspective, the article was well written.

Have a great week and enjoy the sights and sounds of the Season ... and for all my Midwest/East Coast friends and family, that would include all that wonderful ice, snow, sleet, and mud! Gotta love living in the Valley of the Sun this time of the year :-)

Christmas Spirit

Eric came up to me last night when I was sitting at my computer and asked me if I had the Christmas Spirit. I asked him what he meant. He told me "the parents in Polar Express didn’t have the Christmas Spirit so they couldn’t hear the bell ringing."

If Eric had asked me that question a couple of weeks ago, my answer would have been different than it is today. I really love Christmas time. I love the sights, the sounds and the smells of Christmas. Yet, anymore, Christmas seems to be more work than fun. Granted, it probably has something to do with the fact that I’m the parent now, not the kid. But, I’m really tired of lists and “I wants” and the running around so that I can check things off the list. I just want my kids (and everyone else) to be happy about the Season, not the presents under the tree. So, yes … I’ve been a bit of a Scrooge the last few weeks and really not much in the Christmas Spirit. I certainly wasn’t hearing any bells ringing.

Then there was last weekend. A weekend together as a family, all of us, with no worries about what housework needed to be done (because we couldn’t go home) and no worries about work (because going into the office wasn’t an option) and no worries about how much money we were spending (because the weekend was paid for). Last weekend was all about enjoying the Season. And, enjoy we did! But, the grand finale … Jack’s new room, was the greatest gift of all. It was a gift from complete strangers who gave of their time, their talents and their hearts to make a difference in the life of a little boy. Room for Joy exemplifies the Christmas Spirit and, because of them, my Christmas Spirit has been renewed. In fact, I dare say that every time I walk into Jack’s room . . . I hear the ringing of a bell!

The Reveal

WOW! What a fun weekend with an amazing finale. Jack's new room is incredible and pictures cannot begin to do it justice. The "Reveal" was overwhelming to say the least. I can't tell you how many cameras were flashing when we walked into the house. I didn't even get a chance to properly thank the people who gave up their weekend and gave of their hearts to give Jack a room of a lifetime. The room has a surround sound system that plays the continuous sounds of birds and every so often a thunderstorm plays with the sounds of lightening, thunder and rain (just like the Rain Forest Cafe). There is also a water fountain and lights and the ceiling ... it's beautiful with tree branches, leaves and vines with birds and snakes hanging on the branches. It's just AMAZING! In addition to doing Jack's room, they found time to put up and decorate a 9 foot Noble Fir Christmas tree for our living room. My head is still spinning with the excitement of the evening and I'm sure I'm missing something. But, for now ... here is a montage showing the before room, our weekend activities and the finished room. Enjoy!

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THANK YOU ROOM FOR JOY!

Room for Joy Weekend

This weekend is THE weekend for Jack's room makeover by Room for Joy . We're excited, they're excited, everyone is excited!! We will be out of the house by 10am tomorrow (Friday) and we return at 4pm on Sunday for the reveal. We are being put up in a nice hotel and all our entertainment and meals have been arranged. We'll be busy with Zoo Lights, IMAX, Rain Forest Cafe, A Christmas Celebration and restaurant hopping. I really could get used to this!

There will be several newspapers covering the story, along with their camera men. Very cool! While I'm not one for the limelight ... this is going to be so awesome for Jack and both he and the wonderful Room for Joy organization deserve as much media attention as they can get. (I'll just hide in the background.)

Of course I'll have my camera with me documenting the entire weekend. Check back on Sunday (Monday for you East coast people) for the "reveal". Until then . . . have a happy weekend my friends and remember to enjoy the moment.

It's the most wonderful time of the year

I'm sitting here listening to Christmas music, Mark is baking cookies (yes, Mark is doing the baking) and Eric and Jack are watching "Elf". It's been raining all day, which is very unusual for us, but adds to the "Christmasy" atmosphere. We've got our outdoor lights and decorations up (but not our tree yet -- we get a real tree, and it's too early yet). I just LOVE this time of year!

We have no plans this weekend ... I just want to sleep in, lounge around and do nothing for at least one day. Think that will happen? Me neither.

Eric and school are like water and oil and it's just not working out. Eric morphs into this kid I don't recognize when he is at school and I can't take anymore phone calls and emails. So ........ we will be moving him after Christmas break to the self-contained gifted Kindergarten class. If his behavior continues to be an issue ... well, I'll start investigating military schools.

My sweet Jack had a wonderful week. We are rounding the corner on closing out the year without having to step one foot inside a hospital and not having to be on antibiotics once for a respiratory infection. It doesn't get any better than that! (Hopefully, I haven't spoken too soon).

Wishing you all a great weekend filled with holiday cheer.

Peace.

Jack Update

Note to Jen in Texas - we moved from Phoenix to St. Louis in 1996 so Hilary could attend CID/The Moog School. We moved back to Phoenix in 2002. If private insurance doesn't pay for the device, our Department of Developmental Disabilities will - however, then they own the system - not us, which I don't like. Our private insurance is typically very good and should cover this device. Thanks for your input though, it's much appreciated.

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Jack tried out the eye response system from Eye Tech today. This system is so much easier than the other system to calibrate Jack's eyes and you only have to calibrate it once, not every time you use it (unlike the other system). Hopefully our insurance company won't "choke" at the $12,000 price tag! Here is a video clip of him using the system. His eyes are moving the cursor and, as you can see, he is all over the place. It will take awhile for him to learn to stay focused long enough to make a choice - but everyone feels confident that Jack will figure it out and do great things with the system. What was so awesome was hearing how excited Jack was to make something work with his eyes . . . you can hear his gleeful voice in the video.

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We are two weeks post radiation and the results so far have been negligible. I emailed Jack's neurologist asking how radiation that is powerful enough to kill cancer can't stop the saliva from flowing. He told me not to give up yet, that he has seen it take between 4 and 6 weeks for maximum results. So we wait and hope for tangible results. Just another lesson in patience . . .

If things go well, the remainder of this week should be uneventful and quiet. May you all have a peaceful week.

Ciao

Happy Thanksgiving

Thank you to all our friends who follow Jack's journey (and then some). Your friendship, words of support, care and concern mean more to us than you will ever know. May you all have a happy and healthy Thanksgiving surrounded by the love of family and friends.

and . . .

Remember that a little love goes a long way.
Remember that a lot... goes forever.
Remember that friendship is a wise investment.
Life's treasures are people... together.
Realize that it's never too late.
Do ordinary things in an extraordinary way.
Have health and hope and happiness.
Take the time to wish upon a star.
And don't ever forget... for even a day...
How very special you are.

~Douglas Pagels Collection

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Kids' table

Jack's Thanksgiving Dinner
(not exactly turkey and mash potatoes)

Jack enjoying Christmas music on the iPod

Weekend of Dance

Update: by the time we left Sunday evening, Eric was on maximum dance/music overload (as was I) and he just kept saying "I'm outta here" and at one point he left the Ballroom and said he was going to find the elevator and go back to our room ... and off he went. After a few minutes I went out into the lobby and saw him wandering around trying to find the elevators. I'm not sure what he thought he was going to do once he got to our room since he didn't have a room key to get in. The event ran over and we made it home by 4am ... got a few hours of sleep and I was out the door for work. I let Mary and Eric stay home from school. Oh... to be a kid again!

Mary, Eric and I are in Los Angeles for the "Oireachtas", the regional Irish dance competition that Mary and my niece, Shannon are participating in. Mary finished up yesterday and her Ceile team did well, placing 11th out of 40+ teams. Shannon dances today and we hope to get on the road by 7pm. We should roll into Phoenix around 2am (with the time change) and hopefully, I'll get a few hours of sleep before it's time to get up and start another busy week! Jack, Hilary and Mark are enjoying the peace and quiet of not having Eric buzzing around all weekend. Eric is doing great considering he's been stuck in a room for two days listening to the same music play over and over again and watching dance after dance after dance.

Here is a video clip of Mary's team dancing (it stops before the dance is finished because my memory card was full).

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and a few pictures ..........

Radiation Completed

After (1) trying every medication known to help decrease saliva production; (2) ligating (tying off) the lower salivary glands; and (3) completing a year and a half of botox injections with limited results, and almost two years after we first met with a radiation oncologist to discuss radiating Jack's salivary glands ... Jack finally had the radiation treatment today. Radiation is a treatment of last resort other than surgically removing the glands (which is a heck of a lot more painful than radiation). Jack was a trooper through the whole thing. He had to be in the room alone for about a half hour. They had a camera in the room and we could see him on a monitor, but I wasn't comfortable with him being in there by himself and not being able to see his face - so I requested a pulse-ox, which they quickly provided. Being able to see his numbers throughout the treatment made me feel better. Everyone treated Jack well and they even gave me a little gift when we finished (I guess they felt bad for the scheduling snafu a couple weeks ago). We should see maximum results within two weeks. Wish us luck!

Here are some pictures post treatment (after the radiation mask was removed):

Happy to have the mask off!

Tomorrow morning Eric has a well-check with the pediatrician. Eric hasn't had a well check since he was a year old (who's got time for well-checks?) I'm only taking him in because he needs vaccinations for school. There are several vaccines I won't agree to give him -- a couple of the newer ones. However, I'm okay with the ones that have been around since I was a kid. When we explained to Eric what vaccines he needed and why, he - naturally - wanted all the details about the diseases that he could get if he didn't get the vaccine. I suppose he wanted to weigh the pros and cons before he agreed to this! Tomorrow should be interesting .........

Week Over

TGIF ... I'm tired and ready for the weekend.

Jack had his just because appointment with the pulmonologist on Wednesday and that went fine. He wants to see Jack again next June just because. I really do like this pulmonologist. He's the third one we've had since moving home and he is definitely the best in town, especially as far as being responsive to phone calls and seeing Jack when he is sick. The pulmonology group we saw before our current doc would always tell me to take Jack to the ER whenever I'd call to get an appointment when he was sick -- they never even tried to fit him into the schedule. Obviously, they didn't understand that I don't do ERs.

Eric had another rough week at school. His teacher emailed me a very detailed report of Eric's behavior on Monday. To be honest, I don't really need all the details of Eric's bad day. I understand she wants us to be aware of what Eric's issues are, but I really wish she'd just take Eric by the ear and haul him down the Principal's office, if that's what it takes to put some fear in him! Seriously though, I think she needs to be a little tougher on him. Monday night, Mark was talking to Eric about his behavior and after several minutes of responding with "I don't know" to every question Mark asked, Eric apparently had had enough as he looked at Mark and said: "I'm just about ready to call 9-1-1" He definitely has a knack for making you laugh when you really shouldn't (of course, Mark and I only laughed about it out of Eric's sight).

Next week will be a busy one with more dr's appointments, Eric's school play, and we head to Los Angeles on Friday (or Thursday night, not sure yet) for an Irish Dance competition for Mary. I'm just going to hang out this weekend and rest (yeah, right!)

Enjoy your weekend and savor the moments.

Postscript

For reasons some may understand and most may not ... Jack's birthday is a very difficult day for me. But, I got through it and I think Jack enjoyed his birthday weekend and that's what really matters. We went out to dinner both Saturday and Sunday and he always enjoys getting out of the house. Since I didn't send out my usual birthday email this year, I didn't hear from many of the people who typically send the obligatory response wishing Jack a happy birthday. However, one very special doctor did remember Jack's birthday even without a reminder. Dr. Garcia was a PICU fellow who managed Jack and his vent for the first two years of Jack's life. After finishing his training, Dr. Garcia returned home to Puerto Rico, but has kept in touch with us through the years. We love Dr. Garcia and he gave me a much needed lift in my spirits by remembering Jack's birthday.

Dr. Garcia and Jack:



No less meaningful were the e-cards, the gifts and all your well wishes on Jack's blog. Jack and I are very lucky to have so many people in our lives who care - thank you all!

I rescheduled Jack's radiation appointment for next week. He sees the pulmonologist on Wednesday and I need to somehow fit in a time for the company representatives for another eye-response communication system to come out to the house and try it out on Jack. We aren't sure we want to go with the ERICA system because several of Jack's therapists think this other system might be better for Jack. We've got a busy couple of weeks coming up and before we know it, it will be Thanksgiving. Where did this year go?

I'll close with a picture of Jack enjoying "Happy Birthday" sung by the waiters at the restaurant we went to on Saturday.



Have a great week my friends.

Happy Birthday Jack

Happy 9th Birthday to my son ...
My inspiration ...
My compass ...
My teacher ...
My sunshine ...
My everything ...

Love you buddy!

Prelude to the Birthday

Jack’s 9th birthday is this weekend. Every year since Jack’s 5th birthday, I’ve sent out a birthday email letter to friends and family sharing my thoughts about Jack, about myself and about this journey we are on. I’ve shared my thoughts through words, through pictures and through videos. The weeks leading up to Jack’s birthdays are always a time of great retrospection, soul searching and emotion and each year’s birthday letter has its own unique tone, largely a reflection of the events of the prior year. So, I share with you my birthday letters of past, as well as my thoughts and reflections as Jack prepares to celebrate his 9th birthday.

Jack's 5th Birthday

Hi Everyone:

I just want to share with you that Jack celebrates his 5th birthday today. If you had told me five years ago that Jack wouldn't walk, talk, eat or breathe on his own at the age of five, I think I would have crawled into the nearest hole and died. In the beginning of this journey, we all had so much hope. I, along with Jack's doctors, nurses and therapists worked so hard to achieve independence for Jack. Independence from the wheelchair, the feeding tube and most of all, independence from that damn ventilator. But, despite all our hard work . . . it's not to be.

Today, I have new hopes for Jack. 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.

As for me, my idea of happiness has changed considerably. I'm happy to only have to suction Jack 10 times a day, rather than 100. I'm happy if he only pukes once a week, instead of every day. I'm happy when the DME company gets my supply order right the first time. I'm happy to never see the inside of a PICU again. I'm happy to see his contagious, beautiful smile. I'm happy to hear him laugh. I'm happy if he's happy.

It has taken many years, a lot of tears (and an occasional Xanax), but I have finally come to accept that Jack will always be who he is today - wheelchair, feeding tube, vent and all. With this acceptance, comes freedom. Freedom from always pushing him to do what he isn't physically capable of doing (he's so thankful for that). Freedom from always having to be in control (well, most of the time). Freedom from wanting to have an answer to everything and, most importantly, freedom from having to know Why? With freedom, comes peace.

Well, this is getting entirely too profound. On a lighter note, it has been said:

"Life may not be the party we hoped for,
but while we are here we might as well dance"

So, Jack and I are going to dance the day away ~

The last five years have not been easy for sure, yet, I consider myself lucky because I've met so many remarkable people along the way. I feel truly honored to be the mom of such an amazing and inspiring little boy. Thanks to each of you for being part of our journey these last five years.

Love,
Ann


Jack's 6th Birthday
(after he suffered an anoxic event – see Jack’s Story for details)

Hi Everyone;

Jack celebrates his 6th birthday today. As you may remember, last year on Jack’s birthday I shared with you that I had finally achieved acceptance with regard to Jack’s limitations and challenges. What a difference a year can make. A year ago, Jack was chasing his little brother around the park in his wheelchair. Today, it takes all he can give just to get his hand to the controls of his wheelchair. I am renewed in my struggle to understand and accept why Jack must now work harder to achieve even less than he could accomplish a year ago. Yet, despite his new challenges, Jack still manages to face each day with his trademark smile. I suppose it’s not fair to ask for anything more. I want to thank each of you for helping Jack, and for helping me, get through this most difficult year. Jack and I are forever indebted to you for your continued and unwavering support and encouragement. Together, Jack and I will tackle another year of challenges and, hopefully, manage a few successes along the way. Thank you for allowing me to share with you my little hero’s very special day.

Love,
Ann


Jack's 7th Birthday

Dear Friends,

Today is Jack’s 7th birthday . . . simply, amazing to me. Jack’s birthday is always a time of reflection for me. I think to myself . . . another year of “THIS” . . . we’ve actually made it through another year. There was a time when I hoped that each passing year meant we were that much closer to the end of “THIS” and we could then get on with living the life we had planned for Jack. Obviously, “THIS” is here to stay and, over the years, I’ve learned to appreciate and enjoy this life with Jack. Jack is such a gift. He defines what is important in life – patience, persistence, contentment, simplicity and unconditional love. He challenges me on so many levels, he keeps me grounded and he gives my life such purpose and direction. A little boy who can speak no words, speaks volumes by the way he lives each day. So, on his special day, I share with you the one thing that defines Jack, the one thing that has remained consistent through all of “THIS” . . . . . . . . “THAT SMILE”!



Jack's 8th Birthday

Dear Friends,

Jack is celebrating his 8th birthday. What a ride this last year has been. It has been a rough year for Jack from a health standpoint – with many respiratory illnesses and a difficult recovery from his spinal fusion surgery. Yet, Jack managed to get through it all with his amazing spirit and incredible resilience. This year on Jack’s birthday, rather than share with you my words, I share the words written by a dear friend regarding her reflections on Jack – as someone from the outside looking in:

Jack's existence has meaning and opportunity for every person who meets him. Jack is no genetic mistake, his life on earth gives multitudes the chance to be awed by their own good fortune, to be humbled by Jack's patience and strength, and the opportunity to really matter, by being there for him and his family.

I thank each one of you for embracing the opportunity to share in Jack’s life and for being there for Jack and his family - you matter more than you’ll ever know.

I also share with you a short video I put together which includes pictures of Jack’s journey over the last 8 years. Click on the link and make sure you have your speakers on. Enjoy the ride . . .

8 years of Jack’s journey

Ann


Jack's 9th Birthday

Several weeks ago, I told a friend of mine that this year on Jack’s birthday, I won’t be sending out a birthday letter – there will be no profound words or entertaining video because I’m just not up for it. While it’s true that I haven’t prepared the traditional birthday letter and I won’t be sending out a email on Jack’s birthday . . . you’ve got to know me well enough by now, to know that I couldn’t let Jack’s birthday pass without saying something.

This year, I don’t feel particularly happy or optimistic, nor do I feel sad or disappointed. I do feel like there should be something more in life for Jack – I just don’t know what it is. I don’t know if that something more requires me to take some affirmative action or whether it is as simple as me recognizing and accepting that this is as good as it gets for Jack. This passage I recently came across in my favorite book really hit home with me:

It is true that we must experience some successes if we are going to keep on trying things for our children. Sooner or later we have got to get a hit or, yes, we will quit batting. But we might not get one right away. We might not get one for quite a while. We are going to miss. We are going to strike out. We are going to have slumps, but we will never get a hit if we don’t get up to bat.

The first few years of Jack’s life, I got up each day ready to go to bat. I took a swing at anything and everything I could reach to help Jack achieve success. The problem was that I defined success to mean no vent, no trach, no feeding tube and no wheelchair. I struck out on all accounts. With each passing year, it is exceedingly more difficult to get up to bat because the hits are few and far between. I no longer approach each new year with a set of pre-determined goals to help Jack work towards. I can’t define Jack’s successes in terms of measurable progress because then there would be none. It has come to the point where I have to measure Jack’s success on a very primitive level. Is he happy? Does he feel safe? Loved? Without pain? Yet, isn’t feeling happy, safe, loved and without pain success enough . . . for any of us?

So, as I reflect on this last year, I find successes in Jack’s smile and his laughter, in a year without surgery or pain and a year of good health. I find success in the knowledge that Jack is loved and feels the love of many. Yet, I still wonder … is there more out there? Is there something else I should be going to bat for? Nine years into this journey, I recognize that it’s unlikely I will ever accept that this is as good as it gets for Jack. I suppose it’s my struggle with the reality that is and the reality I want that forces me to step up to the plate and take another swing. I don’t always know what I’m swinging at, but I have to keep on trying.

Pumpkin Time

Jack's teacher and OT did some pumpkin carving with him today. Kristi took these pictures (I'm not sure what Jack was "eating" that gave him a green tongue!)

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Happy Halloween

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No Go

Jack's radiation procedure was a no go today. After scrambling and getting all of Jack's morning care, including a shower, done so we could get there by 10am - we were told that we were supposed to be there tomorrow -- which is absolutely not true. I have a full day of appointments at work tomorrow and I would not have scheduled the appointment for Tuesday. When they called last week and told me I could come on Friday, I told them I could not, so we scheduled for Monday instead. After I told them I would never have scheduled the appointment for Tuesday because of my work schedule, they then told me "well, the machine is down anyway". I was angry to the point of tears. I missed a half day of work and accomplished nothing. Work is out of control busy and I really didn't have a half a day to waste. It just infuriates me. I told them I'd call and reschedule once I got back to work and could look at my schedule. It will take me several days to cool off enough to call them. It won't be this week and probably not next week either. Jack has an appointment with his pulmonologist next week just because. He's not sick and there is no reason he needs to be seen. But, if I don't take him in, the guy won't refill his prescriptions. So, I'll miss yet another half day of work just because! One of the most stressful parts of being the parent of a kid with a plethora of medical issues is all the appointments and missed work. The hours I am not at work have to be made up somewhere and it's usually late nights and weekends. Eric has a well-check with the pediatrician on Thursday that I'm now going to reschedule ... for the second time. I just can't seem to get a handle on the whole full-time working mom of four children one of whom is medically involved thing! Tomorrow is bound to be a better day ..........

I'll leave you with a picture of Eric's idea of home decorating



(please disregard all the dust on the wall and ledge -- dust is another one of those things I can't get a handle on!)

Fun News

Several months ago I read a story in our local paper about an organization - Room for Joy - that is "dedicated to enhancing the healing process of chronically ill children by providing imaginative bedroom environments for them". I thought with as much time as Jack spends in his room it would be so cool if he could get a room makeover -- something really extreme and interactive for him. I emailed the organization and received a phone call from the founder/director. She said that they had one other child they had already committed to help, but she would put Jack next on the list - but, at the time she didn't have funding for another room. Well, she called me yesterday and told me the other project fell through and that she would love to do a room for Jack! We met with them tonight and talked about a theme and what Jack would like in his room. I'm not going to tell you what we decided ....... you'll have to wait until the reveal! It's like a mini-extreme home maker. They even kick us out of our house for three days, put us up in a hotel and provide all our meals and entertainment for the weekend. They will be doing his room the first weekend in December. How exciting is that?!

The other "fun" news is an Eric "funny". Right before Fall break I received a letter from our school district telling me that since Eric qualified for the gifted program (and since we didn't place him the self-contained program which is at a different school), that he is eligible for placement in the "consultative gifted program" at our school and his teacher will be contacting me to discuss his "special needs". Just goes to show that "special needs" doesn't always equate to having a disability. I received an email yesterday from Eric's teacher letting me know how much he has improved in his listening and following direction skills and other good stuff like that. Then, in an effort to meet Eric's "special needs", she goes on to tell me that she "went to the library tonight and got a book on leeches - a topic Eric said he would like to learn more about. He will be reading the book in class and then writing and drawing about what he learned." Yes, she said LEECHES! Should I be worried that my five year old wants to learn about leeches? I asked Mark where on earth did he come up with this. Mark's response "well, he likes parasites". He does? Sometimes this kid really scares me. I can just picture his teacher's face when she asked him what he wanted to learn about. I'm guessing she hasn't checked out a book on leeches before. The kid sure keeps us laughing.

This week flew by for me with all of Jack's appointments for the radiation, I missed quite a bit of work. Jack is scheduled to have the procedure done on Monday. It will be without sedation and it will not painful for him -- although I'm sure he'll be a little scared because he has to wear a radiation mask they made especially for him on Wednesday. I'll just be glad to have this behind us.

That's the update from here. Wishing you all a fun-filled weekend.

Appointment

We met with the radiation oncologist today. I rescheduled Friday's appointment because they scheduled us for 2pm and I couldn't force myself to face Friday afternoon traffic from downtown Phoenix back home. You can see where my priorities are. My sanity versus Jack's well-being. However, I'd like to believe that Jack's well-being is directly related to my sanity :-)

We saw one of the younger doctors in the group and he came in with his PubMed articles in hand and told me that I forced him to do his research. He briefly went over what the research said and the pros/cons and alternative treatments. When it was all said and done, there wasn't anything he told me that I didn't already know or we hadn't already tried. He was totally on the same page as me and agreed that this was an appropriate option for Jack. He had even called an ENT to discuss this with and to get his opinion. I really appreciated the fact that this guy did his research. Jack has a CT scan scheduled for Wednesday and then the one-time radiation to the upper and lower salivary glands on one side will probably be done next week. Since this is the procedure of last resort, I just hope it gets the job done.

Things have been quiet around here and that is a good thing. Not much happening, except for a certain little boy's recent loss:

of a tooth!

Have a great week.

Back to school

The kids started back to school today after two weeks and two days off for Fall break ... entirely too long to be off. Mark is out of town for work -- lucky guy gets a few nights of sleep without interruption. I was supposed to go to Las Vegas next week for a seminar, but I decided not to go because the mom in me (or is it the control freak in me?) didn't feel right leaving Mark on his own with the kids for three days. I was really looking forward to a few good nights of sleep though.

We have a consult with a radiation oncologist this Friday to discuss radiating Jack's salivary gland. We've met with a different radiation oncologist in the past, but he just kept trying to talk me out of doing it. We've tried an entire year of botox injections to the salivary glands and it's just not helping. I'd say that at least 75% of what we suction from Jack's mouth and trach is saliva --- so, it's not a small issue. I'm also really tired of the constant wiping of drool from Jack's face. I am really looking forward to getting this issue resolved. I just hope that knocking out one salivary gland will do the job. Jack's two lower (mandibular) salivary glands were ligated several years ago and that didn't help. We can't eliminate saliva completely because it's necessary for healthy teeth. He'll be left with one major gland after radiating one gland. Anyway, probably way more than you wanted to know about salivary glands and saliva, eh?

In other news -- we have a new nurse who starts tomorrow and will be working one day a week to give Kristi a day off. The most remarkable thing about our new nurse is that her daughter used to have a trach. I first met Angie at a conference for families of children with trachs that was held in St. Louis back in 2004. Angie lived in Minnesota at the time. She moved to Arizona two summers ago. Angie actually contacted me and asked if she could help out with Jack because she knew how much trouble we were having getting additional nursing help. How cool is it to have someone I know and someone whose own daughter had a trach offer to take care of Jack. It doesn't get any better than that.

The update on my mom is that she had her first post chemo/radiation MRI a few weeks ago and it was "clean" -- no signs of the tumor recurring. More great news.

Thanks so much for all your nice comments about my kids' pictures.

Ciao my friends.

We are home

It feels like we were gone for several weeks instead of several days. We had a wonderful time together as a family and while I don't want to diminish the great experience, I will tell you that it's just not the same when you can't say "come on kids, let's get in the car and go ..." Not when it takes two hours to get Jack up, ready, and in the car to go anywhere. The last time we went on a family vacation, Jack was still in a stroller and I could hold him on my hip! Now, I can't even lift him. Anyway, it was a once in a lifetime experience and was good for all of us, on many levels. I downloaded a few ... okay, more than a few ... pictures from our trip. Click on "Visit This Album" (and then on the first picture) to see the pictures close up. Please let me know if you have any trouble viewing the pictures - this is my first time using this host site.



I had to laugh at Eric in the shark exhibit at Sea World. He is not shy about telling us (and anyone else who will listen) what he knows about the particular subject at hand. However, I think he met his match in this little girl -- she was not only able to keep up with Eric, I think she even had a thing or two to tell him. It was too cute.



Have a great week.

Family Photo Shoot

I had the kids up and down to the beach early this morning for my photo shoot. I'm happy with the pictures. Yesterday wore Jack out, so he, Mary and I stayed around the hotel today while Mark, Eric and Hilary went to the zoo for a few hours. Tomorrow is Sea World. I think vacations are a lot more fun when you are a kid -- I'm exhausted!

I took over 50 pictures this morning, here is a sample (I'll share more once I get home and get them uploaded to an online photo album.)

San Diego Fun

Free internet at the Del ..... (yay!)

Today we took a ferry ride from Coronado to the mainland and then walked around Seaport Village. After we got back to the hotel -- while Jack rested, Mary, Eric and I went down to the ocean. We plan on taking Jack down to the ocean tomorrow. There are a lot of logistics involved with getting him down there -- we are borrowing a special wheelchair from the lifeguard station that works on sand. We have a full day planned tomorrow. It's a lot of work and takes twice as long to do everything with Jack -- but, it's so worth it and we are all having fun. Thanks for checking in. I took a ton of pictures today, here are a few.

"Mary Ann and Gilligan"

After being wiped out by a wave - clothes wet and full of sand!

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We had a really neat "encounter" yesterday. As we were walking past the main entrance to the hotel on our way to find a place to eat, this older gentleman stopped us and asked if he could say "hi" to Jack. He looked Jack in the eyes and talked to him for a few seconds -- telling him what a special kid he was. It was so refreshing to encounter a person who took the time to acknowledge Jack as a person, rather than look away -- which is what most people do. How cool is that?

San Diego Bound

Tomorrow we are heading to San Diego for a few days. It will be our first vacation together as an entire family since before Eric was born. We are staying at the wonderful "Del" on Coronado Island. It's just a hop, skip and a jump to the beach. You'd think it was almost Christmas around here -- the kids are so excited. We can no longer all fit in the van with all of Jack's equipment, so we have to take two cars - which is a bit of a bummer. The five hour drive will seem like a cake walk compared to the usual two-day, 26 hour drive to St. Louis. I'm so happy to be heading West instead of East!

We are planning a day at Sea World and a boat ride around the bay, courtesy of my brother's in-laws. Mostly, we just want to hang out on the beach and relax. I can't wait to see Jack's face when he sees the ocean for the first time. I am bringing my computer - however, I'm guessing the internet in the hotel room will be ridiculously expensive, but - if I can find a nearby Starbucks and free internet, you'll be hearing from me. If not --- you'll hear from me when we get back.

I'll leave you with this cute face -- he's bound to make this a memorable trip! (I'll try and take note of all the Eric-isms along the way.)

The Eyes Can Talk

Jack had his eye-response communication evaluation yesterday at the Speech and Hearing Clinic at Arizona State University. He can do it! There was some concern at first that the computer might not be able to calibrate his eyes because he has artificial lenses due to congenital cataracts - but, it worked. It took awhile to get everything set up and going and Jack was tiring by the end, but he was able to move his eyes to different places on the computer screen and activate it. They didn't try anything too complicated like letters, so Jack wasn't able to compose his first novel -- yet! This system will allow him to do with his eyes what he used to be able to do with his hands. We know there is information in his head that he can't get out, because he was able to get it out several years ago and now his hands/arms are just too weak. Everyone agreed that he is a candidate for the system (called ERICA) and we are going to get the ball rolling to get insurance to approve it. Our private insurance paid for Jack's first communication board and they should pay for this system as well. I stressed the need to get going on this asap because we are nearing year end and I don't want this ordered after the first of the year when I have to worry about deductibles and co-pays. I'm hoping I don't have to get Medicaid involved in this because it will cause nothing but delays. I'm so happy for Jack and excited about the possibilities. The sky is the limit!

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Have a wonderful and peaceful Fall weekend.

Happy Birthday Hilary

Today is Hilary's 17th birthday. Needless to say, it's been an interesting ride. All the worries, fears and sadness I felt the day I found out she was deaf have been replaced with pride and optimism (and a little frustration along the way). Hilary has accomplished much and overcome many challenges. One day when I figure out how to convert VHS to a video I can share online, you can all see how far she has come. Hilary is the reason we ended up in St. Louis -- where we needed to be, not only for Hilary, but for Jack. Life has a funny way of working out for the best, even if it doesn't feel like it at the time.

(Hilary wearing her first set of hearing aids)

(graduation day from The Moog Center for Deaf Education -
with her favorite teacher, Lisa)

(first day of school in a "regular" school after spending
six and 1/2 years at a school for the deaf)

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I've always found it interesting that Hilary has always seen Jack as someone with a disability, but never herself. I guess it's all a matter of perspective. Here is a short story Hilary wrote about Jack several years ago:

Once upon a time, there was a kangaroo called Jack. He was very sad because he was very different from other kangaroos. He had poor eyesight so he had to wear glasses all the time and he couldn’t exactly jump well, not common in kangaroos. Plus, he was tawny-yellow, while most kangaroos are gray, red or brown. No matter what, Jack was never allowed in kangaroo games and always spent most of his time alone, reading a book or with his family including Daddy Kangaroo, Mommy Kangaroo, Mary Kangaroo and Eric Kangaroo, all red or brown colored, unlike Jack.

However, one day Jack’s life would change forever. A cat couple were walking by when they spotted Jack sitting under a tree, quietly reading a book while other kangaroos played off in the distance.

Bert, a strange green tiger, walked over to him, followed by Missy, an extraordinary white lioness.

“Little yellow one” growled Bert in a calm tone, “Why are you sitting here by your lonesome self?”

“Because I’m different from other kangaroos,” replied Jack sadly. “No one ever wants to play with me.”

“Oh, but you’re wrong!” said the large tiger. “You’re not different, you’re just special! The kangaroos just don’t realize it.”

“Really?” said Jack, brightening up.

“You bet!” replied Bert. “I’m also special because I’m a green tiger and a very gentle one unlike the ferocious orange tigers.”

“And me” added Missy, “I’m special because I’m a white lioness! You don’t see one of those everyday, and I’m artistic as well.”

“And that’s not all” said Bert. “Everyone is special in some ways, never different.”

“That’s right,” nodded Missy. “it’s true.”

“Some animals just have to learn to not judge books by their covers” added Bert.

“You’re right!” agreed Jack. “While I might not look or act like real kangaroos, I’m much more than that! I’m smart, friendly and fun to be around.”

“That’s the spirit!” meowed Missy happily. “Now, why don’t we go and show the other kangaroos that, ok?”

“Let’s go” said Jack, hopping slightly and clumsily to where the young kangaroos were playing, followed by Bert and Missy.

Eventually, they reached their destination and when the kangaroos saw Jack with two enormous felines behind him, they jumped away in flee, hiding behind nearby bushes.

‘Hey everyone!” yelled Jack. “It’s alright, they are not bad.”

“Really?” said a meek voice from the bushes.

“Yep!” nodded Jack and all of the young kangaroos left their hiding places and stood in front of the yellow kangaroos. “And that’s not all, I learned something really important today.”

“What?” asked a small dark-grey kangaroo.

“I learned that everyone is special, no matter what,” replied Jack, patting the kangaroo on the head. “And we should never judge others just because that “special” thing may look different to us. There is more than meets the eyes.”

“You know what?” said a rather tall, rust-brown kangaroo. “It’s true, while I may be the biggest kangaroo around, I’m nice and I like to have fun!”

“Yeah!” nodded another kangaroo, pale brown with large dark chocolate-brown feet. “I might have the largest feet around, but other than that, I’m pretty good.”

“We’re sorry Jack” apologized the kangaroos in unison. “We didn’t mean to be rude to you, we just didn’t know.”

“Oh, that’s alright”, replied Jack. “I didn’t know either.”

“Really?” gasped the kangaroos in surprise. “Well, then, do you want to play with us? We mean it!”

“Sure” nodded Jack. “Just be a little slower, ok?”

“Yay!” cheered the youngsters. “We can play hopscotch and jump rope, and you can go first.”

“That will be fun” laughed Jack, hopping after the kangaroos, but before he went any farther, he turned around and waved good-bye to the cats. “Bye and thank you.”

Then he bounded away with surprising agility and had fun with his new friends and lived happily ever after.