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There Is No Finish Line

April 8, 2010

Last night, I sat down to work on this site for a bit – trying to finish all the odd pages that just have “Under Construction” written on them. While I was working, I decided to do something I hadn’t done in a long time: I just plugged Katy’s karyotype into Google and let it rip. Imagine my surprise when a medical article I had never seen popped up.

For months, I’ve had Google alerts for all sorts of variations on “chromosome 6 deletions,” “chromosome deletion research,” “6del” and the like; but for some reason I had never entered an alert for “46,XX,del(6)(q13q14.2).” So, here I am, stunned to see this possible new information. Now, it’s not perfect. the deletion in the journal is actually 6q13-q14.1 – not 14.2. But that’s close enough to catch my eye.

(WARNING: BORING MEDICAL TERMINOLOGY EXPLAINED NEXT. “q” stands for the long arm of the chromosome; “p” would be the short arm. Specifically, what Katy’s karyotype shows is that she has a normal, complete set of chromosomes: “46”; she’s a girl: “XX” – a boy would be XY; that she has a deletion: “del”; it’s located on chromosome 6 – “(6)”; and that deletion is located on the long arm of the chromosome -“q” – from genetic markers 13 to 14.2, both on the long arm: the second “q”.)

After I pony up $40 for access to the medical journal for 24 hours, I realize that many of the articles being referenced in this new one are articles I was never able to find on-line before. So, I give ’em a shot. Low and behold, we’re in business! After about $150 more in access fees (God, you have to love medical research), I’ve got a few more pages of research than I had at the start of the day.

The only problem? There’s nothing new here.

There’s nothing here that I can bring to our insurance company and say: “See, this has had a proven affect on kids with chromosome 6 deletions. Please pay for this therapy!” I’m basically paying out a lot of money to confirm things I already knew. Such is the pattern, unfortunately, with my little girl.

This morning, Katy’s Nana – my Mom – underwent knee replacement surgery. So Papa, who usually takes Katy to school every day, was at the hospital and I took my little sunshine to class. Oh boy.

Do you remember the movie Mr. Mom? And the scene where he’s taking his kids to school for the first time and they keep telling him “You’re doing it wrong!” Katy didn’t use the words, but she let me know I was “doing it wrong” all the same. First mistake: I carried her into her classroom. See, Papa pushes her in a stroller. Didn’t seem like a big deal at the time. Someone should check my head. Second mistake: I didn’t just drop her off and leave. I tried to calm her down. You know, silly me, trying to comfort my daughter! Katy’s assistant, one of her therapists and her teacher finally – mercifully – just told me to leave. She was fine within seconds evidently. We, then, repeated this again at dismissal three hours later. Nana is no longer allowed to have surgeries or issues of any kind that involve a change in Katy’s daily schedules. 😉

Thankfully, on a serious note, Nana is doing fine. Visited her in the hospital later on in the evening and she looked great. She had just been given another dose of pain meds which may have had something to do with that. Nevertheless.

I feel like I’ve written a whole lot about absolutely nothing at all tonight. Sometimes I need to remember that we don’t have instruction manuals for the other kids, either. That sometimes there just aren’t any answers. It’s funny, my senior quote from high school was a tagline for a “Nike” commercial that said simply “There is no finish line.” Looking back now, that quote has even more meaning for me. Every fresh start is the end of whatever came before it. Every finish is just the beginning of something new. And we take one step to get to the next one to get to the next one. We can never stop trying to find answers for Katy. Every answer just brings more questions. But somewhere down the line, I’ll be able to look back and see not starts and finishes – not questions and answers – but simply an incredible life.

Trust in hope.

{ 6 comments… read them below or add one }

Lisa Hollenbeck April 8, 2010 at 11:15 pm

Todd, what a beautiful entry. Your children are so lucky that you’re in their lives.

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Todd April 12, 2010 at 1:43 pm

Lisa- Nope. Other way around.

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Susan Stephens April 9, 2010 at 12:29 pm

You are an inspiration.. and a great dad!!

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Todd April 12, 2010 at 1:42 pm

Thanks, Susan. Just trying my best. Look forward to seeing everybody in a couple of weeks!

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Lucy Gladstone May 13, 2010 at 9:21 pm

Hi! I’m Sam’s mom from the 6q group and we are the ones who live in O’Fallon, MO. Just wanted to tell you that Katy’s site is beautiful and I look forward to reading more. God bless!

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Todd May 14, 2010 at 8:20 am

Thanks, Lucy! We need to get our families together this summer!

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