Infusing Love: Striking a Balance

Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.
One of the positive things about hemophilia is the different sports and hobbies it has reintroduced into our family life.
When Micah was three, we attended our first hemophilia fundraiser.  It was at a bowling alley.  He absolutely loved it and thought it was funny when the pins fell down and everyone clapped.  He loved it so much that he started asking to bowl on the weekends.  We loved his enthusiasm, but couldn’t help but worry. When our family first got the diagnosis of hemophilia, the emergency room doctors told us all these things Micah couldn’t do.  One thing they made clear, he would not be able to play like everyone else or participate in sports.  And now he wanted to bowl? We were concerned that he could have bleeds in his elbows or wrist from the weight of the ball.
We really didn’t think Micah would keep an interest in bowling, but when he was five, he asked for a bowling ball for Christmas.  We spoke with our hematologist to make sure he was strong enough to be lifting, swinging and releasing a six-pound ball.  Just like with other sports, if he was going to be doing this on a regular basis they suggested we infuse beforehand as a precaution.  We looked online for a small bowling ball and, lo and behold, found a Sponge Bob ball that had a screaming expression on one side and a smile on the other. When it rolled down the alley, it looked like he was screaming or laughing.  It was the perfect Christmas gift for him; he was ecstatic, and we became a family that started bowling on a regular basis!  As he got older, he participated in junior bowling leagues and to this day, has never had a bleed as a result of bowling.
Micah has even been able to help raise awareness for hemophilia through bowling events.  At six years old, he was in the hospital for hemophilia-related complications.  While he was there he met C.J. Wilson, who at the time was a relief pitcher for the Texas Rangers.  After many talks and meetings, C.J. decided to create C.J. Wilson’s Children’s Charities and Micah was the inspiration for that.  C.J. helps to raise awareness for hemophilia now and some of the fundraisers he has benefits hemophilia treatment centers and camps.
A few years ago, C.J. asked Micah what he thought they should do for a fundraiser and Micah suggested bowling. The foundation has held events for four years in both Texas and California, because C.J. is now a starter pitcher for the Los Angeles Angels of Anaheim.  Last year, C.J. presented Micah with a customized bowling ball for him to grow into. He encourages Micah to stay active and do what makes him happy and keeps him healthy.
Bowling is a great activity to do with the family.  A lot of bowling alleys have some unique specials to encourage interest in bowling and get families involved.  For instance, our local bowling alley has Retro Sundays where a family of four gets two hours of bowling and a pitcher of soda for $25!  Check your local bowling alley….you might be surprised at the deals and fun you can have!
Another hobby that Micah picked up over the last three years is archery, which he originally discovered while at hemophilia camp.  The gentleman that does the archery workshops at camp said that Micah is doing really well and I should encourage him to pursue archery as a sport.  It’s safe, fun, and requires good concentration.
The good news is that Micah started middle school this year and they have an archery team so I’m sure you’ll be seeing more posts with his progress and where it takes him next!  I hope you are able to get out and enjoy these activities with your child or family.  The extracurricular activities are a great escape from the everyday dealings of living with a bleeding disorder. Whether it is a sport, music or a club activity, get out and be involved — strike a balance of fun in your life!
Kelly lives in Mississippi with her son, Micah, 12.
*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.