Being a single parent is challenging for anyone. Being the single parent of a child with a severe, costly chronic illness comes with its own set of issues. I remember the times that Max unable to attend events that were geared toward fathers and sons. I once called our chapter office when Max was around 6 or 7 years old and asked if a friend of mine could take him to a baseball game the chapter was sponsoring for fathers and sons. Because my friend would only be able to do it if he took his son too I was told no. I didn’t let being a single mom stop me from doing the things we could do but it made me feel like there was a big divide for us to cross to be a part of the community. This happened in other areas outside of hemophilia also, how awful it must have felt for Max. I know it did for me. I feel like times have changed for us in hemophilia but I do sometimes wonder, are there kids being left out? Is this a part of our population that’s being overlooked because the single mom or dad isn’t as pushy as I finally became?
When Max was very small I sometimes felt like I was alone on a strange planet. I watched other families splitting duties like treatments, HTC, and ER visits and I’ll admit I was full of envy for the “family unit.” When Max broke his arm at the age of 3 it required a trip to the HTC every Friday from the middle of December until the end of February. That hour and a half drive on early snowy mornings every week was challenging, but what was more challenging was not losing my job. Fortunately, the federal Family Medical Leave Act (FMLA) came along. Being able to use FMLA still saves me time and time again.
One of the biggest things that gave me the belief that I could raise Max alone was the first single mom I met who was also raising a son with hemophilia. It was at our chapter’s family camp and lo and behold, there was a woman that was comfortable being a single mom! Her son was a few years older than Max and she made it sound so easy that I was given the hope that I too could do it. We were able to infuse at home, his health was good, I got him involved whenever I could; and for his part there never seemed to be a time when he felt that he couldn’t count on me to be there for him. As so often happens in life I kept doing the next thing and the next thing and suddenly I become aware that I was pretty good at it.
I took Max camping for the first time when he was just 2 months old. We had many adventures, just the two of us, like the time I took him to Niagara Falls for a few days. Driving eight hours, staying a strange hotel, and acting the role of the perfect tourists alone with a young child with hemophilia was a little scary but I plowed ahead and we had an amazing time away from our comfort zone of New England! There were times when I was scolded and degraded for taking chances with “that sick little boy” or told that it was irresponsible to go all the places we did because “what if he gets hurt and you’re alone?” He did get hurt. We did go to a lot of different emergency rooms. And he became quite good at advocating for himself at a young age.
There were times when I was extremely aware of my inability to be “dad.” The Pinewood Derby is one example. What did I know about building the car? I had never been a scout, boy or girl! When it came time for the big race Max’s car barely made it down the track. I don’t believe there was another car that performed worse than his. This was a source of shame for me for a long time. Once again the saving grace was camp. There everyone’s cars were treated like architectural achievements. While there are still a few of those camp cars in the basement, I don’t what ever happened to the doomed Pinewood Derby car.
It became a sort of our standing joke about me being a lousy father. “Mom, you throw like a girl” was a pretty common phrase when it came time to toss a ball. I didn’t watch or play sorts so I couldn’t talk football or any of those guy things with him. It wasn’t too long ago that I was walking behind Max and I saw that his elbows were dry. I mentioned he should lotion them. He turned to me and said, “See, this is what I mean. Guys don’t care about dry skin.”
Max has never missed an HTC visit and I have even been able to keep him insured or at least covered without help. He has never gone without things he needs in spite of my single income. I learned very early how to find those magical organizations that help with funding so he could go places that otherwise wouldn’t have been available to him. Mostly I owe a huge debt of gratitude to the men in the hemophilia community that have stepped up and been a dad to Max. Whether it’s driving hours to see him get an award or dress him down when he’s not acting appropriately. He’s been treated like family, because that’s what we are here, no matter what form it takes.
Maryann and her adult 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 provider.