By: Maryann May
I’ve been thinking a lot about Max and how he gained his hemophilia independence. He was 6 the first time he self-infused. He did it at our chapter’s family camp with the guidance of some amazing older mentors. In those days things weren’t nearly as organized as they are now; no gaggle of nurses around and often the child’s first time was in an office with whichever guy was there encouraging them.
Our camp was rustic to say the least as it was up in the woods of northern Maine. We had a couple of guys in their late twenties that served as counselors and role models. The kids adored them. They had both survived the hemophilia holocaust but lived with multiple viral infections. Despite their own joint issues and chronic problems, they knew the importance of being there for the young kids.
At the time, Max was the youngest kid to do his own infusion at our camp. They had been sitting in one of the offices and he just did it. I snapped the picture with tears in my eyes. I will never forget how his mentor came running out of the lodge jumping and yelling, “Max just self-infused, Max just self-infused!” Of course it was on and off for a couple of years, but every year at camp he never hesitated. That could have been because there was always a prize at the end at camp!
When Max was very young, the concept of prophylaxis was still new and not every Hemophilia Treatment Center (HTC) encouraged it. When Max was 5 years old and already had a few bleeds into one ankle, the HTC asked me what I thought about the idea of prophy. I did some research and found that it had been used in Europe for a while and was very successful in preventing bleeds. Max’s schedule for the first few years was three times a week which meant me treating him at 5 o’clock in the morning before I left for work. By the time he was 9 years old, he decided he’d had enough of that. Knowing he was capable of doing it himself, he took over. By the age of 12 he was on an every other day regimen, so being able to do it himself gave him a lot of freedom.
Our HTC also encouraged independence in other ways. When Max turned 12 he began going to most of his clinic appointments without me. I would sit in the waiting room and read. The nurse, physical therapist, and doctors would come out and chat to fill me in. Sometimes it meant a sneaky call after the visit, but he was made responsible. He began ordering supplies — again with a sneaky phone call from me to the HTC — and making some of his own judgment calls when there was a bleed. Max was often given the choice to make the decision if he needed extra treatments.
This isn’t to say it always went perfectly. There still were occasional misses and sometimes he just wanted mom to do it. I learned to keep a few batches of factor on hand in case he forgot to place an order. I would pack supplies on the sly for our trips, but he hardly ever needed them. Of course there was the one time he called me from Block Island, which is four hours away, and he’d forgotten to bring needles.
“Well, you’re on an island, honey. You won’t be getting them for at least a day or two!” He hasn’t ever made that mistake again!
Some people said I pushed him too fast or that they didn’t want their kids to have to deal with such a level of responsibility that early. I was a single mom; we traveled, camped and were pretty active. I knew he needed to be that much more independent, not having a back-up parent. I also knew that for me to be able to have some freedom, he needed to be able to care of himself. His visits to his dad were rare and Max felt that he needed to be responsible, because dad wasn’t always reliable.
Max never missed school outings or sleepovers because of treatments. For a long time, I have felt confident in his ability to manage his condition, whether it’s flying across the country or driving across the state. We have been in emergency rooms all over the country, and Max is often the teacher to some of the doctors we see. He has the confidence and grace to explain what he needs and what hemophilia is by being assertive, not aggressive. It’s an amazing gift for both of us to have freedom from what could have been a prison sentence.
Maryann and her 21 year old son, Max, live in New Hampshire.
*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.