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Sunday, July 31, 2011

Why WLS, part 2

This is the second part in an occasional series about why I chose weight loss surgery.  My reasons are right there in my short bio: my career, my daughter & myself.   My career was covered here and this post will be about my daughter.  This post has been brewing in me from the beginning but that won't make it any easier to write down.  Grab a box of tissues because I know I will.....

I think it takes a lot of strength to do what we do: willingly undergo surgery, have a foreign object implanted,  drain the bank account dry,  learn all new eating habits and risk it all to combat a lifetime of addiction.  To take this drastic step, I believe it takes a very powerful why.   Something compelling enough to keep us going to the gym, making good food choices, picking ourselves up when we stumble.  Day in, day out.  over & over & over.  For me, my most powerful why is my daughter.

This is a very timely post because my daughter turned 9 years old today.  Something the earliest doctors told us wouldn't happen.  My daughter is severely disabled - she is in a wheelchair, she does not speak, she is deaf/blind, she is in diapers, can not feed herself, she can not communicate, she has seizures.  Basically, there is something wrong with everything from head to toe: brain structural abnormalities, heart abnormalities, kidney issues, scoliosis and much, much more.  Developmentally, she is like a 4 month old but in a 42lb body.   I can give a long list of symptoms but I can't give a name to her disorder. We have no diagnosis and likely never will.  She has had 6 major surgeries and seen more doctors than I can count.  At 3 months old, her first doctors gave us a life expectancy of only 6 years.  Something like that definitely leaves a mark on your heart.  Just last year, the most recent doctors told us that she may be the first whatever she is in the world.  This also hurts.  My little family is completely off in uncharted territory.

The past nine years have not been easy.  I had a totally normal pregnancy - there was absolutely no hint of what was to come on that day she was born.  No time to prepare for the shock of it all.  It actually took several years to get a full picture of the breadth of her disabilities.  Even now, I don't think we know it all.  It always feels like there is yet one more crisis just around the corner.  I remember vividly when she was just a few weeks old and we went the Children's Hospital in Austin for the first appointment with a urologist.  I remember standing in the hospital lobby looking up at a list of all the doctors and specialists.  I was so scared.  I was so lost.  So many names on that board! A little over a year later, we were moving to Denver for my job.  We went back to the hospital to get a copy of all her medical records and I remember looking up at that same list of doctors.  However, a bare year later, we'd been to see every single specialty on that board except oncology.  And that was just her first year of life.

As I mentioned, I can provide a very long list of all the things that are wrong with my daughter and yet that list would completely fail to capture who she is.  She is the light of my life.  She laughs a lot. Even though she can't speak, she smiles and giggles often. She clearly communicates her joy.  She is very social & engaged.  She loves to be around people, she likes school, she likes to cuddle.  She loves Wendy's Frostys :)  Against all odds, she turned 9 today.

And this where it starts to get really tough.  She turned 9 today - she is strong, her health is stable, she continues to progress at her own pace.  Frankly, there is no reason that she shouldn't turn do I prepare for that future?  My daughter is the very definition of vulnerable.  There are a lot of bad people out there - people that could hurt her.  She can't fight back.  She can't speak up.  She can't say no and she could never identify anyone who harmed her.  And so this is my deepest, darkest fear: my daughter pregnant.  My husband and I are very clear that we want to keep her in our home and under our direct care.  I just don't think it would be possible for me to trust her welfare to institutionalized care.

A year ago, I could not envision my 69-year-old self capable of caring for a 39-year-old severely disabled daughter.  A year ago, I couldn't lift her out of the bathtub.  A year ago, I couldn't carry her to bed. A year ago, I couldn't walk more than ten steps with her in my arms. A year ago, it finally sunk in that I needed to take drastic steps in order to regain my health.

I need to be strong.  I need to live a long time so I am here to care for her always.  This is my most powerful why for choosing WLS.

what's your powerful why?

1 comment:

MandaPanda said...

I almost started crying reading this. I can't think of a more important reason to get be there to take care of your precious angel. My heart and prayers go out to you.

My powerful is also my daughters. While they do not face the same challenges, the thought of not being able to do all I can for them disheartens me.

Great post!