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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

By Sonji Wilkes

Several summers ago, I signed the kids up for swim lessons to help keep them busy during summer break. A couple of years later, after once-a-week, year-round lessons, they had progressed to a point where I was brave enough to sign them up for a local swim team.  I was thrilled; they were not.  Much grumbling ensued, but I kept up the “it’s going to be great” mantra.

At their very first swim meet, the kids put up respectable times.  In fact, Thomas proved to have quite a competitive streak in him.  We also noticed it was easier to infuse peripherally as swimming daily boosted his veins.  Here was a sport that my severe Hemophilia A kid with an inhibitor could do — even thrive in — and it was good for him.

This year marked our third summer swimming, and the kids have swam on USA Swimming sanctioned teams over the last two winters. Thomas’s face absolutely lights up when the chlorinated water hits his skin. It’s been a rewarding experience – when he is healthy enough to swim. But due to an unrelenting cycle of bleeds and recovery times, Thomas often has to sit on the pool deck, watching and waiting for his sisters to finish their practice. You can tell that he is itching to get in the water.

Click the below video to see Thomas win his first race after an injury and bleed! 

He’s fought at least three major bleeds (honestly, there’s probably been more and I’ve just blocked them out.)  Those bleeds required extensive rehab and left him unable to walk or raise his arms over his shoulders for weeks and months.  He had a port infection, a wound issue, and a new port surgery that kept him from the pool for five months.  Last summer, he adhered to our physical therapist’s recommendations of a reduced practice and swim meet schedule.  He still made the League All Stars team, but was carried out of the end of season championship meet because another bleed started.  At our team banquet, even with a reduced schedule, he was awarded “Most Valuable Swimmer,” meaning he had accumulated the most points for his team in his age group.

At a recent swim meet, he dove in for an event and his goggles fell off his eyes and were left dangling around his neck.  It’s a moment of sheer panic for a swimmer; his coaches have told him to close his eyes and just keep swimming when this happens.  Most kids can’t help themselves and reach up to adjust the goggles.  Thomas didn’t seem to even flinch when it happened to him.  His swim cadence didn’t falter or change – head down, eyes closed, strong stroke, and solid form.  I stood on the pool deck, screaming encouragement, “It doesn’t matter T; you are a fighter!  Just keep swimming!”  I was struck by how my kid who has faced far too many obstacles in his 10 years, faced another.  He did what he does best…he may not come in first place, but he fights to finish the race.  He fought the challenge and didn’t let it beat him.

So, bring it on hemophilia.  Bring it on.  Good luck, because you’ve got fighters on your hands in these kids with hemophilia and other bleeding disorders.  It’s not only my kid that fights, but also so many more.  While their physical limitations may prevent them from doing things they love, in the end, they learn valuable life lessons and they fight to overcome all the challenges and obstacles that stand in their way.

Click the below video to see Thomas rally for a another swim event after he lost his goggles in the previous race. 

Sonji lives with her husband, Nathan, and three children Nora (11), Thomas, (9), & Natalie (7) in Colorado.


*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

 

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