The change of having a healthy child into a less healthy one (in this post I don’t speak of diseases that could be fatal by themselves) is tough. A lot of changes will come to you and you might feel like you failed as a parent. Your child is sick/disabled and this will probably be forever. This doesn’t mean that there’s no improvement possible. Especially in the beginning you can get a lot out of changing things. It’s important that your child can use help, so he/she can still do things and enjoy life.
I write this blogpost from my own experiences. This doesn’t mean that it has to be the same for everyone. People deal with things differently. These are just a few tips that I wish my parents would have had. There isn’t one right way to do something.
You and your child will both enter a state of grief and even when you already passed that station, it might return sometimes. That’s normal. You have to say goodbye to a part of your child. You don’t only grieve when someone dies, but also if your body becomes chronically ill or disabled. First, I though this was nonsense, but I have to admit that it is true since I did experience it myself. I just didn’t accept it back then as grief. Emotions will come and you might feel devastated for a while. Those emotions are allowed and that is very important. It’s ok and it’s allowed, you don’t have to hide those emotions all the time. Of course, you don’t want to bring more negativity to your child, who also has to deal with a lot right now and find a way to still have a bright future. But ignoring your feelings, will also bring negativity eventually. Especially sadness can be shared, since you don’t want to be angry at your child for having a body that doesn’t function normally. It depends on the age of your child, but you can cry with your child sometimes, talk about it, make plans etc.
My parents have always been convinced that emotions, especially crying, is weak. They wouldn’t share anything and this went on for a couple years. Eventually this made me confused. I was sad and they loved me, so why weren’t they sad too? Didn’t they care about it, about me, at all? Once my father cried, while we were in the car together. Immediately he said he was sorry, he shouldn’t be weak and he shouldn’t bother me with it. I told him I appreciated it that he shared is emotions, that crying isn’t weak and that it was very confusing for me that he didn’t share it before. I couldn’t see what was going on in their heads and they just lived their lifes like before. I couldn’t know that they did care, did grief, when they were doing their ultimate bests to hide it. I told him I preferred to just be open about it, talk about it. It would have prevented a lot of fights and tension if we did this from the beginning.
[Photo of a woman, father and little boy hugging each other and smiling.]
Keeping up appearances
You probably won’t immediately think about this, when you’re dealing with this topic. However, it happens a lot. Children who are forced to ‘act normal’ by their parents. Because they are afraid of what other people might say or because they can’t handle seeing their child like that, like how their bodies really are right now. First of all, don’t be afraid of what other people might say. Yes, you will hear a lot of things and probably a lot of it will be negative. That’s how our society still deals with these topics. Don’t let this get to you. You and your child already have to fight more to live a nice life. You need to fight for help and adaptations. Generally, we shouldn’t care about what other people think about you. Especially people who don’t really know you or the situation. Let them think, you know the truth. Don’t let them tell you that your child is faking. I’ve almost never met a child who would fake something this severe (yes, it’s very sad but I did meet a few who wanted to benefit from the system without actually needing it. I’ll tell about that some other time). It’s important that it almost never happens and you would probably notice signs if it does happen. You should always believe your child at first. When you’re chonically ill or disabled you already have to deal with so many people who don’t believe you and you have to fight for your rights. A family who treats you the same can be absolutely demolishing.
So, that was the first topic, keeping up appearances for other people. Don’t do that please. Then the other one. I can understand that it must be incredibly tough to see your child, for example, in a wheelchair. I’ve been through this with my parents and I saw them struggling. However, there are better and worse ways to deal with it. I’m not saying you’re doing it wrong, but my parents would actually force me to not use a wheelchair. They couldn’t handle me seeing it and if I wouldn’t use it, it would seem if I was fine. However, it made my pain and my disease worse. Denial doesn’t work when dealing with these issues (although I wonder if denial ever works). Instead of seeing, in this case the wheelchair, as a bad thing, it can also be a good thing. Of course you wish your child wouldn’t need it, but that is the case right now. And I loved the things I could do again, because I could use the wheelchair. If possible I would walk a little, using the wheelchair as a rollator. Then, I would sit in it. This way I could go to places, I wasn’t able to go to anymore. I could do a little shopping, go to a zoo etc. It made my life so much better! So, indirectly the wheelchair gave me a lot of joy. I couldn’t live without it, because it would make my life so much harder. Eventually, my parents started to see this and luckily I’m now always allowed to use the wheelchair, if I feel it’s necessary. They still don’t like me seeing in it of course, but it’s less awful. They can also see how much positive things it gives me and that it makes my life better. And who wouldn’t want that for their child?