Monday, October 8, 2012

My First 5K and My Hemophilia Story

ok, not really my first, but the first 5K I attempted to run. 

 Last weekend, my husband and I - and the boys of course - did the Hemophilia 5K Walk. It was a sunny day, luckily not too hot, but I couldn't really keep up with my husband's pace so he took off with the stroller (and my water bottle. :-/ )And even though I got a little mixed up on the course and walked a lot of the way it was still enjoyable. Even more it was really neat to see so many people come out for a cause that is near and dear to me. 

 You see ever since I was young I've been very familiar with hemophilia. Hemophilia is a bleeding disorder in which the part of the blood that causes clots is low. So the person affected with the disorder takes longer to stop bleeding or bruises much easier than a person with normal factor levels. Hemophilia also varies in severity and one person can be very severe and need injections to stop bleeding, or a person may just need to avoid contact sports and take precautions if they ever need surgery.

In my family, my dad, an uncle, and several cousins are affected by this condition. For my dad, he has only gotten a handful of hematomas, or a pooling of blood in the tissue. It's like a HUGE bruise. I think I only remember him getting 3? in my lifetime. One time it was from a long day of physical work and then jumping on the trampoline with me and my cousin on his knees. The next day his knee was the size of a cantaloupe. He was down for a week or more while he healed. 

(not my dad- but this is a hemotoma on a man's leg 6 days after a fall)

We knew there was a limit for my dad; couldn't be too rough when wrestling and we had to be careful playing sports. Even though he hasn't had many bad injuries, I would always worry about the "what-if's". What if he got into an accident or what if he dropped the trailer tongue on his finger and sliced a part of his finger tip off....Oh wait, he did that last one! Luckily he was alright. 

But a bleeding disorder can be a scary thing - you need your blood! It's kinda one of those crucial things!

My parents told me that when I got older they would have me tested to see if I was a carrier of hemophilia. Well in 9th(?) grade Biology, I learned about genes, DNA, and chromosomes. All that fun stuff. Well from what I knew about hemophilia, it's carried on the X chromosome, I did the 'math' and knew I had to be a carrier. My dad had to give me his X chromosome for me to be a girl (XX). So from then on I knew I was a carrier and that my boys had a 50% chance of having hemophilia. 

Fast forward to 2009 when we had Andrew. We knew he had to be tested and after relocating, finding a pediatrician and getting health insurance from Curt's new job, we did finally have him tested. His results came back with normal levels. Phew. Then this year Ben was tested. Still good news; his levels came back at 20%, which means he does have hemophilia, but not as severe as my dad or cousins. 

So life these days is mostly normal. Ben has gotten a few bruises - one on his knee, one on his chin, and just the other night a bonk on his head that gave me a good scare, but nothing serious. I try to make sure he doesn't take any big spills or if he does, I check him out really well and try to put ice on it. (Have you ever tried putting ice on an infant-ha!)
(bumped his head on the table)

 Honestly, I've been somewhat hesitant to tell people because I feel like they would treat him differently and a few people do, gasping at every small stumble he takes. Mostly though he's just another kid, which I prefer. I'd rather be the one to worry, I just want him to be treated like any other kid. 

So long story short- I felt really uplifted doing this walk/run because of my history with it. Plus for most of my life, no one seemed to know anything about hemophilia so to see so many people there was humbling. I may or may not have almost cried when everyone was lining up. Shhh don't tell anyone ;-)

Thank you to all those who participated in the 5K and all those who support me and my family. I think about all the other families who are affected with much worse conditions and my heart goes out to them. May you have strength and courage to make it through and live a full and happy life! 

For us, we play it day by day. Most days hemophilia isn't an issue, but other days I worry about a bump or fall - especially now that Ben is starting to walk. I do my best not to let my nerves get the best of me and help my boys live and play like normal little boys, who love to wrestle, climb, and throw stuff. It is ironic to me though that the child with hemophilia is the rough and tumble kid and the one without the condition loves puzzles, reading books, and can sit still fairly well. lol. Oh well, there is a plan in place that's bigger than me, so I know everything will work out.


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