We are getting ready to go to the beach for a couple of days. The problem is that we can’t actually go to the beach. SNC is in a wheelchair, and if you have dealt with one before, you know that wheelchairs and sand dunes don’t mix well.
This is a common problem we face and to be honest it weighs heavily on me. I think I have mentioned before that we cannot go and do some things as an entire family. Our choice is to split up while one parent stays at home, or we get respite care which is a problem (see previous post).
The guilt I feel runs on so many levels. One one hand, I struggle with wanting to include SNC but I don’t know how much she will benefit from the activity. Not only that, we never know when a meltdown will occur and we have to abandon the activity, or at least remove SNC from the situation so that the other children can maybe continue.
I feel guilt because if we do exclude SNC from an activity, she is conspicuously absent from any photos taken during an event. Sure, I put on a smile for the camera with my other children, but it is for show. Always in the back of my mind is the thought that we can’t be a normal, typical family able to laugh and have fun all together.
I feel guilt because my other children aren’t able to include SNC in a lot of their activities because of physical dis/inability.
I feel bad because there are things that I want to do with my other children, but I can’t because it is my turn to stay at home with SNC. I wish I could with all of them together, but neither is an option at this point.
Back to the beach trip, at some point, the kids are going to want to get in the pool. I’d love to get in and play with them, but I have to sit out with SNC, and even that can’t be long because of the chance of rapid sunburn due to sensitive skin. The wife has some business to attend to while we are there, so it will be just the kids and me at the pool, in case you were wondering.
While I am grateful that my children get to learn compassion for someone with special needs and be comfortable around them, I also find it extremely unfair to them that they are unable to do some things just because of our family situation.