The Red, White & Blue Of Hemophilia Independence
As we celebrate America’s Independence Day, nothing says it more than the wearing of red, white and blue, a parade and a night of fireworks.
Self- infusion is Independence Day for kids with bleeding disorders. They wear their medical alert bracelets, they go to camps, they practice – and sometimes struggle – with veins that will not cooperate. Eventually they get “fireworks”: a celebration of accomplishing something that they will need to do forever; something that can pull them further from their protective cocoons of home and parents and move forward into the big world that awaits everyone.
My son, Liam, went to Camp Bold Eagle in Michigan three times. After the first two times he came home with the coveted “eagle” award, meaning he had mastered self-infusion. The freedom from the weight of feeling like we always needed to be close to one another in case he needed an infusion was independence for both of us. Unfortunately, it didn’t last.
Shortly after returning from camp he “forgot” how to infuse like he had done at camp. He was scared because all the people that he had worked with and who had encouraged him were no longer sitting at his kitchen table. So we regressed – our parade of independence had dispersed and we were left with the red blood that needed clotting factor, the white knuckles that couldn’t manage to push past the fear of trying home infusion and feeling blue that he had not gained the independence we wished for him.
The summer before seventh grade we sent him to the same camp for the third time. I called ahead, and spoke to someone who undoubtedly labeled me “mentally questionable” because I said to them, “DO NOT SEND HIM HOME UNLESS HE CAN REALLY DO SELF-INFUSION. If it means doing it everyday instead of his regular scheduled days then by all means do it!”
He left that morning not speaking to me, insulted to be sent away for a third time and feeling too old to be at a camp. A week later we picked him up, and though he was still a bit broody he smiled and said the words all hemo moms long to hear, “I can do it all by myself mom!” It was Independence Day and one of the best days ever. It meant I wouldn’t have to go to college with him and sleep on his dorm room floor as I had often joked when he was resistant to self-infusion.
A few weeks after he got home from camp he was asked to go to a friend’s cabin about four hours from home. That moment defined his true independence; he said yes and he packed his clotting factor and supplies and left.
The following year he went with his 8th grade class to Washington D.C. and I didn’t need to be a chaperone because he had it all covered.
Liam recently left for a 16-day trip in Europe. The world is his to explore. He has a converter for plugs, a poncho for rain, sandals for the beaches and a bag of clotting factor with all his supplies. He has his passport to be stamped at all the amazing countries he will visit and his medical alert bracelet to make certain he is identified if he has any problems.
Interestingly, he will be traveling over Independence Day. But I cannot think of a better way to celebrate Independence Day than him being somewhere far away and knowing he is strong and capable to take care of the life he has been given.
As parents we all hope to safely launch our kids into the world and that the lessons we teach them will help them to master all the things that come their way. It is no different with a child with a bleeding disorder — you want them strong and independent and ready to take on the world.
Megan King, her husband, Rich, and six children reside in Wisconsin.
*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.
Assisting and Advocating for the Bleeding Disorders Community