Portrait of a Killer . . .

STRESS

Sorry about the scary title! My trach board friends already heard about the recent National Geographic Special titled "Stress: Portrait of a Killer" (so, you might want to skip this post :-)

One of the studies they mentioned in this Special discussed the effects of chronic stress associated with caring for a child with special needs. The study found that those of us who care for children with special needs, age (at the cellular level) on average, six years for every one year we have been caring for our child. I'm feeling pretty good considering I'm 107 stress years old! The study did find that women who participated in support groups with other mothers of special needs children were less affected by chronic stress. In addition, they found that people who reached out to help others through acts of kindness and compassion were less affected by stress.

All things considered, I think I've weathered the storm fairly well. I can count on one hand the number of times I've been sick the last ten years. If I had to list the things that I think have helped me not feel 107, my list would include the following:

> having good insurance (for the most part)
>having home nursing and having nurses who I feel 110% comfortable leaving Jack with
> working outside the home and having bosses who are understanding and flexible
> having other kids who give me the opportunity to experience the "normal" and who keep me from being too consumed with all of Jack's issues
> a few very supportive physicians who have been with us from the beginning and who continue to offer their support, insight and knowledge even though most of them no longer care for Jack
> the support and friendships I've gained from the tracheostomy.com message board*
> my ability to help others in the same shoes through the Willow Tree Foundation, and

most importantly

> SENSE OF HUMOR!

*The only support group I've ever been interested in being part of is the Tracheostomy.com community. Shortly after attending our first MDA clinic visit with Jack's St. Louis neurologist, we were put on the MDA mailing list. After receiving my first Quest Magazine (the MDA magazine), I called and told them to take me off their mailing list - it was more information that I wanted to know. On the trach message board, our children have trachs for a variety of reasons and while some will be trached for life, most will eventually get rid of their trachs. I find the experience of seeing our kids make progress and rid themselves of medical equipment to be so much more uplifting than being around other children with muscular dystrophy. It's just too depressing for me to see what lies ahead. I'd rather live vicariously through my trach board friends and families than live in the reality of being the parent of a child with a degenerative disease.

And on that happy note . . .

I'm feeling extraordinarily stressed this week as I get ready for our road trip to St. Louis. If I only had Jack to worry about, I'd be okay. But, having to get everything ready for the girls to fly out after we are already on the road, along with trying to get things wrapped up at work to a point where I can leave for 10 days . . . I'm on stress overload right now. The tension in my neck is at an all time high. Nothing a few beers wouldn't fix, but then I'd be worthless for getting anything done. I'm currently making my list and checking it twice.

Thanks for checking in. I'll update before we leave and definitely keep the blog updated as we travel through the lovely states of Arizona, New Mexico, Texas, Oklahoma and Missouri.

It's All About Eric

My new camera arrived today (Canon Rebel Xsi). I'm hoping to be able to get crisper, clearer pictures and more action shots. I have a lot to learn to use it to its full potential, but I started tonight at Eric's soccer practice. It took me a while to figure out how to get action shots that aren't blurry. It probably would help if I took the time to read the manual that comes with the camera - you think?

Tonight, it's all about Eric:

After practice, working on homework.

A few Eric-isms I've jotted down over the last few weeks:

Mom, what happens if you take electricity and mix it with lava?

(Looks like we won't have to worry about ideas come science project time. And, no - I didn't have an answer to his question :-)

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Eric: Does bologna have fat it in?
Mom: Why?
Eric: Because I don't want to look like dad when I grow up.

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Mary trying to have a conversation with Eric:

Mary, leave me alone . . . I have a life!

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Tonight we had parent-teacher conferences. Eric's teacher told us that he needs to work on being more focused when working on in-class assignments. He's easily distracted and doesn't always finish his work. I think the problem is that he IS the distractor. Always the talker, always the entertainer!

When I mentioned this to Eric, his response:

I will not be rushed. I always take my time and follow my thoughts.

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Ta Ta for now -I've got a kid puking (love this time of the year); a kid who needs a bath (and who is zonked out on the couch) and a kid who needs a breathing treatment, vest, cough assist and lots of suctioning because he is getting sick too. (the timing of which scares me -- we are leaving for St. Louis in less than two weeks).

And the beat goes on ..........





I think that bath will have to wait until tomorrow morning.

The Most Wonderful Time of the Year

Open Enrollment.

We received the open enrollment package from Mark's employer. I always look forward to finding out how much more we have to pay for fewer benefits. Found out that we have one option only -- a HSA (Health Savings Account). Probably do-able unless you have a kid who costs $10,000 a month and has Medicaid as Secondary.

Anyone else dread this time of year?

Just keep swimming . . . and breathing . . . and a little Xanax when all else fails.

Oh Happy Day!

My Point

If anyone is wondering why it would occur to me to document the changing of the water bag (which isn't nearly as entertaining as the changing of the guard) or even if you aren't wondering - let me explain.

A week or so ago, I read a post on a blog of a mom who's 4 year old son is on a ventilator due to a spinal chord injury as a result of a car accident. Here is a portion of what she had to say:

The other night I was so tired and I put Conner in bed, but after you put him to bed you have another 30 minutes of medical stuff you have to do for him. I was about in tears, because I was so tired and ready to go to bed. I just asked God if the day was going to come, where I could just lay my little boy down in bed and go climb in my bed and go to sleep without any worries.

These words really hit home with me as I thought to myself "I so completely understand how you feel". If I had to pick the one thing I miss the most, it's the ability to just go.to.bed. at the end of a long day. After everyone else in the house is down for the night, snuggled comfortably in their beds, my night-time routine begins. It's not so much that it's difficult, it's just time consuming (and critical to Jack's well being) and when you are tired and just want to go to bed . . . . sometimes you really do just want to cry.

The other night when I was finishing up with Jack's bedtime routine and encountered the "should I change the bag of water" that turned into having to change out the entire water chamber - it made me think of Conner's mom's post and how this was a perfect example of the "medical stuff" that will put you over the edge when you just want to go.to.bed. So, I grabbed my camera and told you my story.

It's these never ending night-time routines and the other relentless demands of caring for a child with a lot of medical needs that inspired me to establish The Willow Tree Foundation. It's my mission to reach out to parents of medically fragile children and let them know that I recognize and understand what they are going through. I understand the enormous stresses they face in caring for their children and I understand that some days it’s all they can do to get up and put one foot in front of the other. I realize that providing a couple hours or even a weekend away from the demands of caring for a medically complex child isn't going to make everything okay. However, I feel it's important to let these parents know that their efforts don’t go unnoticed and that they too are deserving of some time and attention. While all parents need time to unwind and re-energize, parents of medically involved children – those who perhaps need this time the most - are the least likely to take any time for themselves. If nothing else, I hope to ease the guilt and let my fellow sorority sisters know that it's okay to take some "me" time.

Speaking of The Willow Tree Foundation, I have a really neat project in the works that I'm hoping to share with all of you in about a month. It will be a fundraising opportunity as well as involve something that I think many of you will enjoy personally. Stay tuned.

Anyway ........... what WAS my point?

A Night In The Life

Tonight as I was telling Jack it was time for "lights out" I noticed that the bag of water for the vent heater was low. I asked myself the question, is there enough water in the bag to last until the morning, or will I (and Jack) be awakened at 3am by the heater alarm because the water chamber is empty. It's not really a monumental decision, except when you are exhausted and just want to go to bed and don't even feel like taking the 2 extra minutes to change the stupid bag of water. I decide I'm not risking it because tomorrow is Saturday and I just might actually get to sleep in if I can avert all unnecessary alarms. I go to pull the almost empty bag of water off the "pokey thing" (an actual medical equipment term) and the darn thing breaks.

Not a major equipment failure, the only problem is that the pokey-thing is connected to the water chamber for the heater and now I have to change the entire unit. What's the big deal, you ask? The big deal is all these important life sustaining tubes and wires are attached to the water chamber.


I can do this. I just pull the entire connected water chamber out and slide in the new one.

Quickly switch over the vent circuits and heater wires to the new water chamber and voila . . . good as new.

Hook up that bag of water that started the whole process.

(and yes, that's a broom handle with a nail in it holding the bag of water. I never did get an IV pole to hold the thing).

Lastly, cover up the circuits with blankets to prevent water from building up in the tubes over night. Water sloshing in the vent circuits is an annoyance and cause for me to have to get up in the middle of the night to drain the water (just one of the many annoyances that can wake me up in the middle of the night).

Now, it really is time for lights out Jack. Good night sweet boy.


. . . and, good night sweet friends. It's late and if I'm lucky, I just might get 8 hours of (interrupted) sleep tonight.

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Have a fun filled weekend and, as always . . .

ENJOY THE MOMENT

Yikes!

Mary got her driver's permit today. She is exactly 15 years and 6 months today and she wasn't going to wait one extra day for that permit. Hilary has her permit too, but she never wants to go out driving. Mary, on the other hand can't wait to get behind the wheel. I'll actually be glad when Mary can drive on her own. One of the toughest things about having a child like Jack is that it's very difficult to get your other kids to extra-curricular activities. I've had to rely mostly on my sister and niece to get Mary to most of her activities. It will be nice when Mary can get herself to where she needs to be.

It's been a quiet and uneventful week. Someone asked me today if I'm ready for our trip to St. Louis. For some reason, I can't seem to get myself motivated. I have such mixed emotions about the whole thing. I dread the two days of driving (each way) and I'm so not looking forward to the overnight stay in the hospital for the sleep study. But, I'm really looking forward to seeing a couple of Jack's doctors and seeing all of our St. Louis friends. We've decided to stay an extra day so we can get some more visiting time in. The way it was looking, we'd spend more time on the road and in the hospital than relaxing and visiting with friends. I'm also looking forward to enjoying some cool, Fall weather. It's perfect Starbucks Pumpkin Spice Latte time of the year!

Fall is in the air . . .

Just In Case You Didn't Know . . .

Yes, his glasses are crooked. They fell off his face on the playground and he stepped on them! (they've since been fixed)

Brain Freeze

I'm a thinker. Thoughts, ideas and things I'd like to share just pop in my head and sometimes I can sit down at my computer and the words just flow. Then there are those times when the thoughts are there but the words won't come. It's such a struggle for me because I can't get the thoughts out of my head, but I also can't come up with the words to adequately convey what I want to say. I'm currently suffering from brain freeze. Or, perhaps dementia. Whatever it is, the words aren't coming right now. Hopefully, it's only temporary (which would rule out dementia).

Speaking of brain freeze. Right as we finished dinner tonight, I grabbed Jack (who was already in his wheelchair) and we hurried out the door for a walk before the sun went down. I was about a half a mile down the road when I realized I didn't have Jack's suction machine, his backpack with his ambu-bag, nor did I have my cell phone with me. You think I turned around and headed back home after I figured out I forgot everything . . . nope. I've definitely come a long way from that first walk in the neighborhood oh so many years ago. No panic, just a comfortable awareness. Sometimes, I scare myself!

Happy Monday friends.

Score Another One for the Little Guy

Based on our review of the above information, we are reversing our previous benefit decision and will now allow coverage for 56 hours of registered nursing services per week, and 60 hours of licensed practical nursing services per month supervised by an RN.*

Love, your friends at Aetna
(well, I added this part :-)

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I just love it when David beats Goliath. Lesson learned: never give up and never give in. If you are entitled to it and if it's important to you - fight for it. Sometimes the little guy really does win.

*We are actually only getting 10 hrs/week of RN nursing and the balance of the hours are covered by an LPN (Kristi).

**Update: Of course, the wording in the letter from Aetna is causing heartburn for the nursing agency because our primary nurse is not an RN. So,while nursing has been approved, issues remain. I'll tackle them Monday.

Melisande - thanks for sending me all your information. It got the job done!

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When the world says, "Give up",

Hope whispers, "Try it one more time"
~Author Unknown

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"With ordinary talent and extraordinary perseverance,
all things are attainable"

~Thomas Foxwell Buxton

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More of the Eyes

Not my best video production to date, but it gives you an idea of some of the new games/books that have been uploaded to Jack's eye gaze system. It's a bit juvenile to me, but at least it's a start. The red button at the bottom of the screen is similar to what Jack used to have to try and push with his hands to make things happen, now he need only look at it with his eyes. On the last video clip, Jack is supposed to pick the letter that the word "cat" starts with.

Pretty cool stuff!

Make video montages at www.OneTrueMedia.com

More to Come ...

I've got two things I'm working on to share with you. One is a blog thought to follow up on my post in support of Jen and the other is a video of Jack doing some new things with his eye gaze system. Both of these are taking more time than I've got if I want to get to bed before 2am. Because I'd rather not start the work week off tired, I'll share some pictures from this weekend instead. Hopefully, I'll have more to share later this week.




I've been having Jack watch his movies on the portable DVD player because I really don't think he can see what's on his TV very well because it's so far away when he is in bed. Hopefully, we'll figure out exactly how far he can see after our visit with the eye doctor in St. Louis. This was late in the evening and Eric was tired and ready to fall asleep any minute.



We celebrated family birthdays this weekend. My niece Bridget turned 21 so she is now legal to drink. (Being the good Irish Catholic girl she is, I'm sure no alcoholic beverages passed her lips prior to her 21st birthday! :-) (the other two people in the picture would be my sister Joan and my nephew Joey.)

Mary and her cousin Kelsey - who also celebrated a birthday.



And lastly, I'm posting this picture just because .....

my sister told me not to! The next picture (if there was a next one) would be of her yelling at me "you'd better not put that on the blog!" She's trying to figure out how to get her new TV/cable/DVR/DVD/Etc. to work. The thing comes with at least 17 remotes, I'm not sure how anyone can figure it out.

Not only do my kids give me grief for always having my camera out, the rest of my family does too. For the record, I was the family photographer well before I started blogging -- since I was in grade school. The majority of family photos we have from our childhood through adulthood were taken by me. My grandpa was a camera buff and I acquired his love of photography very early on.

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Have a grand week my friends.

On a Lighter Note

This pretty much sums it up . . .

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There is no defense against adverse fortune which is so effectual as a habitual sense of humor.
~Thomas W. Higginson

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Wishing you all at least one good laugh today.

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Thank you for all your supportive comments on my last post. Jen & Brian - I got your back! :-) (many hugs and I hope you are having a better week.)

Weekend of Wii

I should be embarrassed to admit that my family spent the majority of the weekend in front of one TV or another playing Wii and various other video games. But because I don't claim to be Super Mom, I have no shame. It was a relaxing weekend spent with family and friends. I almost went into the office today. It was a bit of a mental tug-o-war deciding "should I go", "No, I don't want to go". My sensible self prevailed and I spent the day with my kids and visiting with my sister.

Weekend in pictures

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On a completely different note, I've been extremely bothered since reading the blog of my cyber-friend Jen, mom of Faith - who is vent dependent. I hope Jen doesn't mind me sharing my thoughts on this subject.

Faith spent the first year of her life, and then some, in the hospital and she finally made it home in April. Jen and her husband are school teachers and to earn some extra money, Jen recently posted that she has been babysitting two little kids in the evenings while their parents work. Caring for two "typical" little kids, it was only natural for Jen to notice the difference developmentally between her daughter and the kids she was babysitting. Jen wrote about how difficult it was to see how delayed Faith was and how sad it was for her to realize how Faith (and she and her husband) have been cheated from experiencing the "normal" baby/toddler experiences. Apparently Jen's post offended some people. In Jen's words:

I feel as though I offended some people with my last post. My apologies if I came across pessimistic and self-absorbed. It was never my intention to make those of you who do not have a sick child feel bad. It is only human to think about the grass on the other side of the fence from time to time.

The fact that Jen felt that she needed to apologize for expressing her feelings of loss and sadness really upset me. Here is what I shared with Jen and I share here with all of you:

Jen -
I too have been told, in essence, to"Cowboy up" because it's not that bad, or it could be worse. As if we don't know that. As if we haven't spent enough time in a NICU/PICU, around sick and dying children. Yes, we are fully aware it could be worse and that there are many other families in this world who are facing their own challenges. However, that does not negate our right to be sad, to be mad and to wish 'til our dying day that it was better. We are not selfish, self-centered, ungrateful people. We love our children more than life itself and we will go to the ends of the earth to do right by them. But we are entitled to acknowledge our loss. I have three healthy children, but that doesn't make the fact that Jack is not healthy okay. I'm just as entitled to four healthy, typical kids as any other mom. It really makes me mad that someone would make you feel guilty for feeling sad, for feeling a loss and for articulating it.

Yes, we all have our hardships and burdens to bear in this world. However, when someone shares that they are having a rough time of it, please don't remind them of how much worse it could be or tell them how "lucky" they are. It's so important for people to realize that in spite of the facade of being strong and handling things well, parents of kids with special/medical needs occasionally need validation, a pat on the back, an ear to bend, and a shoulder to lean on. These special parents need friends and family who will simply listen with an open heart and without judgment.

As you can tell, I feel very protective of my fellow sorority sisters. Thank you for listening to my rant.

And on a final note .... I just realized I've been blogging for over 2 years. Holy Canoli. Who knew I had so much to say!