Monday, September 29, 2008

Portrait of a Killer . . .


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 message board*
> my ability to help others in the same shoes through the Willow Tree Foundation, and

most importantly


*The only support group I've ever been interested in being part of is the 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.


julie w said...

Hope all goes well with your trip Ann. I bet even the military don't have to plan their manouevres like you do! Hope you don't add any more stress years in the process.

Love Julie xx

Faith said...

I got teary eyed when I read that last part. I get really sad when I think of Faith coming off the vent someday and Jack never getting off. It’s only been a year and a half and the only thing that gets me through the day is thinking of the day when I don’t have to change water bags and silence alarms. Sometimes I don’t want her off because it isn’t fair that some people are always going to be on… If I could trade all ten of your years for only one more of mine I would.

I don’t know how you do it. Knowing that you will always have to have nurses in your house, have to fight with DME’s and insurance companies day in and day out. You are one incredible, strong woman and your children are very lucky to have you as their mom. I hope one day ALL of your children will read about this journey and they too will appreciate how strong their mother is.
Love always,

PS: On a lighter note we just watched a thing on PBS (not sure if it was the same thing you watched) on how animals relate to stress. Apparently Zebras don't get ulcers because they don't "get stressed" so my motto to you this week: Be the Zebra!

Anonymous said...

I love you my very dear friend. I can only imagine how stressed I would be if you didn't answer everytime I called to vent. Thank you! :-)
Safe travels to all of you and I hope this journey is an enjoyable one not a stressful one.
Talk to you soon

Ann said...

Thank you ladies, I'm teary-eyed reading your comments. Jen, I can't really remember when I had my "ah ha" moment of realizing this is NEVER going to end (and when it does, it won't be a happy day). How do I do it? I don't think too much beyond tomorrow. But trust me, there are many a morning on my way to work, listening to my iPod that I just cry all the way to work thinking about this life Jack and I live. A good cry now and again is very cleansing - and important - and after that, I just pick myself up and "keep on keeping on".

The positive side of this whole journey is the remarkable parents I've had the privilege of getting to know. So many of whom I've been able to meet in person and a few whom I call my very best friends. And some day Jen, I hope to meet you too!

Thanks again for all your kind words.

Ann said...

Love you too my friend.

Karen said...

Dear Ann,
A wonderful, affirming post. Some days feel harder than others. Reading your post helps remind me that we are not alone in this, despite the miles between those of us who know what its like to live this life. I am with you when it comes to looking ahead - some days I have a problem with this outlook of mine. For the most part, I realize worrying about the future will get me no where good. So we keep on keeping on. I wish you safe and uneventful travels. I look forward to hear how things go.


Faith said...

One of these day our paths will cross somewhere other than cyberspace. Actually, AZ is filled with Remings. Brian's entire extended family lives in Phoenix! They all moved from Buffalo to Arizona (hmm... I wonder why). One of these days we'll get the guts to travel with Faith (you are paving the way this weekend so don't tell us if something goes wrong...j/k).
Hope things are falling into place and your sanity is still in tacked (although it is perfectly OK if it isn't).
Lots of Love,

Susan said...

Oh Ann!I too had a good iPod cry today while painting my porch. I agree that it's cleansing. Music is great that way. It's really something how we make it through our days. Hugs. Hope your trip goes well and you can de-stress.

Melisande said...

Can't wait to see you and Jack again, even if only briefly!! Nice to lay eyes on my good friend once every few years!!