Family dynamics are always complicated, and it seems that everyone’s family has their problems, but the weird thing about our own families is that we as people tend to think that our family’s problems are isolated and specific to us. As we grow and connect with people, we find out that many people have gone through similar things that we have, and that nobody’s family is perfect. But throwing in a monkey wrench like a disability or illness, especially one that has the potential to worsen in any way over time, complicates family dynamics even more.
In my experience, my disability has changed a lot over the years and somewhat conveniently at various stages of my life. I can’t speak for my infancy stages — I can’t image what my diagnosis did to my parents at the time being that whenever anybody gets diagnosed with anything. It seems to be in our culture to expect and prepare for the worse. I know that my parents (as I think typical for most parents who get a Cerebral Palsy diagnosis) were told that I would never walk, talk, that I may be blind, and that I may never know who my parents are. I might just be here, which means constant full-time care throughout my life. This was not the case for me.
But my illness has changed significantly in my opinion. As a child, I remember walking with a walker from the ages of 3 to 10. I don’t remember having much pain aside from growing pains, it certainly was not constant the way it is now. I was treated like every other child in my life at the time and it wasn’t apparent to me that I even had a disability or any type of problem. When I was 10 my physical therapists decided I would be okay without my walker, a lifelong dream of mine for the time and I walked independently.
However, by the time I was 16 I experienced my first significant health-related event. I had been sick before of course numerous times by that point in my life, but nothing that could be tied to my disability until then. It began with hip pain, a dull pain, the doctors had a hard time pinpointing where the pain was coming from and why it was happening. By the time I was 17, the pain was unbearable and I was fitted with my first wheelchair before my first semester of college at the age of 18. All of this was devastating to me as the person going through it, my mom remained the strongest.
However, the rest of my family seemed to step back — the “call if you need anything” coos became whispers. The family events grew smaller. Any sort of illness expected or otherwise adds stress to anybody, people get scared, they worry and everybody deals with it in their own way. But the thing about Cerebral Palsy that makes the changes so confusing is that CP does not get worse. The initial brain damage remains a constant, but the physical symptoms that the CP may cause do change over time.
In my case, being that I was mobile from the ages of 3 to 10 with a walker, and then from 10-15 walked unaided, the wear and tear on my body from the years of walking with a limp made doing distances harder, has left me with chronic pain, and forced me to use a wheelchair for long distance walking situations. I still walk independently or with help depending on the circumstances today. My family has come around, it’s taken some time for everyone to adjust understandably.
I learned one thing during all of this that I think is so important to anyone battling a disability. The family that stays? Pull them close. The family that distances? Give them space to adjust. The physical therapists, the doctors, all the people involved in your care including the people you talk to in the waiting room — they are your family, they are your allies. They care about you and your struggles and want to see you thrive, you’re important to them. Don’t forget that.
Sometimes a changing illness doesn’t change your family, it changes the definition of family.