As we get off to the start of a new school year if you are a parent like me you are busy with school schedules and trying to navigate all the different school activities. Then again, we are in the middle of Covid so things might be a little different wherever you are. It’s an exciting year for me as I watch my oldest daughter go through Gr.12 and graduate. It’s hard to believe that seventeen years ago all the fun began. As a parent with a rare disease, you face so many extra challenges as you try to raise these kids to adulthood. So it’s a proud moment when you can say you were able to overcome all the fears and challenges you faced when you started raising them! As any parent will tell you it’s challenging at the best of times raising children. Let alone raising them with a disability or illness of any kind.
When all of this began I was already knee-deep in diapers and baby bottles! Raising a family was already in progress so it wasn’t like there was any turning back. I had to adapt and adjust to everything as things unfolded and that made for ten times the fear in lots of ways. There was this ever-present “what if factor” I’ll call it that I had to live with. I call it that because I was constantly questioning how I was going to do the basic things that a parent does. Things like changing diapers or strapping your child into a car seat were just a few of the basic challenges I faced. With the use of only one hand and having to deal with numerous other symptoms, I had to find a way to navigate around all the different obstacles I came up against.
I know most people would say that all those adjustments are just a part of parenting, and that finding ways to adapt are all part of the norm. However, I would say that under my circumstances things are a little bit different! Those things you are constantly making adjustments for can become very frustrating. As I mentioned they often have to be made on the fly and no manual shows a person just how to make them. This just sort of becomes a way of life! You do your best to do things the way they’re supposed to be done, and if you can’t then you adapt or get someone’s help to figure out a different way. Sure sometimes it’s going to drive you crazy and frustrate you to the ends of the earth. You can’t let it stop you though because there is always going to be away.
This was a huge stumbling block for me to get past because as much as I never wanted to admit that I was letting those frustrations affect me they really were. What I’m getting at is that there were a lot of times when I would tell myself “it just isn’t possible” when it really was. Somehow I’d get all inside my head and almost defeat myself before I even tried the task I was setting out to do. You can only do that for so long! At some point like a child who’s learning to swim you just have to take the plunge and jump in. In other words, I just had to move ahead and if I failed at something, or had difficulty with it then I had to find a way to work around it. In moving forward though what that really meant was working on myself.
Being diagnosed with a rare disease and starting a family at the same is like being hit with a double whammy! It’s bad enough that your trying to figure out how to manage your illness let alone how to adapt to parenting children. So when I said before that there is a tremendous amount of fear I wasn’t kidding. It really wasn’t until I started building confidence within myself that I started to understand that I could do this parenting thing! Between an extremely supportive spouse and myself, we figured out a way to work around my CRPS. Something extremely hard to do when from one day to the next you don’t know what those days are going to look like. I really meant it when I mentioned earlier that it was working out how to adapt on the fly.
Although I faced lots of adversity at first I set out writing a new playbook on how I was going to parent based on the limitations that CRPS presented. I had to allow myself to fail at certain tasks because there were things that I just couldn’t do based on certain physical limitations. There were days where the frustrations grew so bad that I felt like a failure yet something deep within told me to keep going. That inner voice kept telling me that I had something to prove to myself. Little did I know that the real voice I was hearing was God. One obstacle at a time I proved to myself that I could do whatever it was that I needed to do. Just in a different way! Slowly the fear and the doubt started to fade away as I gained confidence in myself as I started to find ways to do the things that are required of a parent.
What I really want to stress with what I’m telling you is that it was very much a day-by-day process! There were lots of good days mixed with bad ones, and if I could give you one piece of advice it would be this. Be kind to yourself and allow yourself to fail occasionally. We’ve all heard that old saying “if at first, you don’t succeed, try, try again”. I had to live these words over and over again! Don’t give up because your persistence will eventually pay off. I know my situation may be very different from yours but the way we approach any given situation is a choice. I had to make the choice not to get frustrated and figure out different ways to do the same things everyone else does. Including giving up control of the things that I just couldn’t do! Meaning that there were just certain situations that I just couldn’t adapt to or control. So I needed to realize in those times that I had to rely on the help of others.
I had to have the grace to allow myself to fail at certain things if I wanted to be able to find a way forward. A big piece in doing that was being able to push aside my pride. After receiving a diagnosis you struggle with being able to find pieces of your identity that you’ve lost. A person’s independence is a big part of that! So in everything, you do your constantly trying to gain that back and there’s this constant internal fight that’s going on. In parenting, I had to rely heavily on my wife to do so much when all I wanted to do were these simplest of tasks. I felt guilt for the longest time because I couldn’t do the things that should have been so easy for me to do. It seemed as though that battle to be independent grew even stronger in the caring of my kids and I was really letting my pride stand in the way.
This only fueled guilt that I was feeling on the inside! I was feeling so inadequate at times in my ability when parenting my kids and I was often letting my pride stand in the way. It wasn’t until I got to break down what was going on inside of me that I realized that I needed to make some changes. One thing for certain was that I needed to deal with my pride and start accepting the help that I needed. Not only when it came to parenting my kids but at all times.
I tell people that it’s a process and that at times it’s really going to challenge and test you. For me, it was a matter of taking things day by day. Allowing myself to grow and change as I worked through some of those things that needed to be changed within me. What I really needed was to find my self-esteem again! I was so caught up in the diagnosis itself that I hadn’t looked at the obvious, which was that my identity and self-esteem had suffered a huge loss. In living with an illness like CRPS a person has to go through a grieving process. What I didn’t fully understand at the time was that I hadn’t dealt with any of this at all. We spend so much time living and managing conditions like these, that we push aside the things that keep us mentally healthy.
Once I did some work on myself I was able to get past my roadblock and build up confidence. This changed how I viewed myself as a parent living with a rare disease. I started to accept that my contributions were going to be different but every bit as valuable in how we raise this family together. In failing at something that I was trying to do when raising my kids, I finally understood that it was the by-product of living with a disease that places physical limitations on me. I stopped doubting my abilities and started embracing the fact that how I was going to parent my children were just going to be a bit different. It made it so much easier to accept the things that I couldn’t do and to ask for the help that I clearly needed. What I also saw through all of this was that there was an opportunity to turn those weaknesses or failures into positives.
This is really one of two posts because there is so much about raising my family that I look back on now and all I see is that I was able to overcome any of those doubts and fears that may have been lurking in the back of my mind. My next post will speak more about the things we had to change about how and what I had to change to raise my kids. I hope you’ll drop in on my site for part two! Remember! Having a rare disease or a chronic illness doesn’t have to define who you are or what you can do with your life!