There are times as a hemophilia parent where hemophilia is not at the forefront of your mind. Times where you can just live and enjoy every moment without worry. It’s almost as if hemophilia is a distant memory. You run on autopilot – not thinking, just doing. Â At these times hemophilia has absolutely no impact on day to day life.
Then, out of nowhere, you are yanked back into reality. It could be something simple as a minor bump on the knee or call from the school nurse that brings you back. We have had one of those moments recently.
It was a beautiful late summer morning. School had only been in session for a few weeks. It was an easy Monday morning in comparison to what our Monday’s are usually like. Typically, I have to stand on my head or make it spin around to get my children to move faster than a snail. I feel as though I am constantly having to have an exorcism to get them to listen and just get dressed!
Nicholas was ready fairly early that morning. Not like our usual last-minute dash around to actually get out the door on time. It was an infusion day. I prepped everything, again on autopilot. Factor was mixed, Huber needle primed and sterile field set. I prepped his port with the chloraprep by cleaning it until I was done singing the ABCs. Everything very normal. Then I accessed. That’s when the world came down around me. I felt as though I was in an alternate universe. This amazingly beautiful port was not being cooperative. I couldn’t get even a glimmer of a blood return. I tried and tried; I turned that Huber needle to all sides. Upside down and around… nothing. Not a speck of blood. I removed the needle, prepped another one needle, prepped another sterile field… bam. Nothing!
At that moment I realized, nothing is ever as it seems. It was a simple moment where things weren’t normal. Just a blip in the big picture of hemophilia but an important reality check. This kid isn’t ready for self-infusion. I, being complacent, have been comfortable with status quo. In that tiny moment I remembered that I have to prep him for independence. I have to continue to have discussions with him about peripheral sticks or “arm medicine” as we refer to it. I have to encourage Nicholas to mix his own meds, organize his supplies, and practice more independent activities. Independence does not happen overnight but, I know that hemophilia can turn on a dime. I know that our status quo can change rapidly, and I need to be prepared for that change while relishing in a quiet hemophilia life.
Carrie lives with her husband Mark, and son, Nicholas, and daughter, Aleesia, in Maryland.
*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.