Hi everyone! You didn’t expect to see me back so soon, did you? Well, it’s part of my effort to get back into a writing groove. I wanted to follow up with part two of Parenting with Rare quickly while things are still fresh in my head. We know that with a condition like CRPS most of us in one way or another deal with some form of brain fog. So I’m trying to get out ahead of it. If there’s one thing I’ve learnt with CRPS it’s that you take the opportunity to do things when they present themselves.
In part two I want to dive into some of the issues I faced, and how we got around or adapted them to our family. Like I had mentioned to you there were a host of things that I had to do differently when it came to raising my kids. One of the biggest adjustments was to being a stay-at-home parent. Not being able to work meant that my wife had to go back to work and this wasn’t our original plan. She was planning on being a stay-at-home mom and so when the roles were reversed it was a hard adjustment. All of a sudden I was “Mr. Mom” if you want to call it that. As much as being at home was great, I also knew that it was going to present a host of different challenges.
With my wife being at work this meant that I was on no matter what my pain levels were. Do you think a 6-month-old and a 1 1/2yr old understand pain? So we had to figure out ways to work around those days where my pain wasn’t good. This meant trying to find ways to interact and take care of my kids all the while working within the physical limitations that were placed on me by CRPS. This is where in my previous post I had mentioned that so much of the adapting that we had to do was on the fly. It took a lot of experimenting to figure out just what my limitations were going to be. Everything from how I played with the kids to how I put them to bed at night was a little bit different. What I always tried to keep at the top of my mind was that what mattered the most was spending time with them.
So, if it meant that I was sitting on a couch letting my child dress me up adding jewelry and makeup then that’s what I did. Now I know lots of you would say this is the norm with parenting but how many of you can say that your limbs that were affected by my CRPS were bedazzled as well. On the days when my pain was bad that I had to spend a lot of time laying down. In that instance, something as simple as laying on the floor beside my daughter playing with a balloon was what I had to do. I know this isn’t overly exciting but she loved it. I’d hit the balloon up into the air wait for it to come down then she’d hit it up into the air. The reality is that when I wasn’t doing well then we had to stick pretty close to home. Going out took a greater effort and had to be reserved for the good days.
When it came to going on outings with the girls, it often involved a park or somewhere that they could play as I watched over them. With my physical limitations being what they were, a park or indoor play structure of some kind was of great help to me and provided hours of entertainment. I want you to understand that when I was doing things with the kids they had to be the type of activities that required less help from me. Being so restricted in the type of things I could do with the girls, however, naturally meant that choices were going to be more limited.
Activities like riding a bike, ice skating, tobogganing, or even playing catch weren’t within my abilities. It didn’t mean they had to miss out on them but it did mean having to do them with my wife or other family and friends. It was a matter of finding different ways to give them the things they needed from us. As they’ve grown older and I’ve started to find ways to better manage my pain, it has become so much easier to do more and more with them. Although at 14yrs and 17yrs they’ve become largely independent, so finding things to do these days within my limitations isn’t very difficult. My point is that in order to make things work we had to get a little creative in how we did things. It didn’t change the memories we created or the time we spent with one another. All that was different was how we did things.
Modifying things in the way we did was able to create special memories in of itself. With my mobility issues, it was more difficult for me to put the kids to sleep than it was for my wife. So I would often sit on the couch and my wife would nestle our six-month-old in my arms where she would drift off to sleep. Once asleep my wife would come and take her out of my arms and put her down for the night. Sure there were nights that I’d put her down but we would often tag team things in this way. Whether it be so that my wife got a much-needed break, or that it afforded her the time to do something else she needed to do. What I’m saying is that we didn’t give in to the roadblocks that weren’t easy because of my CRPS. Instead, we saw them for what they were and tried to work with them the best we could.
Another trigger at the beginning of my diagnosis was noise. This wasn’t easy to get past because kids just need to be kids! Being a trigger that makes my pain worse, however, meant trying to find a way to minimize the noise I was around. I didn’t want them feeling bad so I’d often have to remove myself from those situations so that I could cope. We wanted everything to be as normal as possible. If their friends were coming over and they were going to be noisy, then my wife would usually be the one that was looking after them. This was one of the small adjustments we had to make to make things work with my chronic pain. Of course, it was still challenging and at times the girls did have to be quiet around dad. We did the best we could to find a balance in our home and I’m not going to lie it wasn’t easy. I didn’t always handle it well!
The things I’ve done in adjusting to raising our kids with CRPS aren’t necessarily going to be the same for everyone. The best piece of advice I can give you is to be prepared to make changes in everything you do in being a parent with a disability. Have an open mind in having to adapt and don’t be afraid to say “I can’t do this” or “I need help”. Communicate! Communicate! Communicate! We tend to forget that communication is such a huge component in all of this. We tend to get stuck in our heads when it comes to the illnesses we’re diagnosed with. This often causes us to crawl into our shells and the result is that we stop talking. Our spouse is our biggest supporter! I’m constantly reminded of my wedding vows and what it says in those vows. We need to think about the “in sickness and in health” part of those vows!
To those of you that might be thinking about raising a family, I say this. You might be sick but in no way does that mean that you can’t follow through with your hopes and dreams of having a family! Getting sick is just a bump in the middle of the road. Those around you are there to help you figure out how to navigate around it. Is it going to be hard and test your strength at times? Yes! However, this has been the most rewarding experience of my life and I wouldn’t give it up for anything!