For many of us, surgery, medications, or illness can impact our ability to care for our child. Lifting restrictions mean we can no longer get our child in and out of their wheelchair. We cannot get them to their appointments, or in and out of the bath. We are not able to put them to bed or get them up in the morning.
When we cannot provide our child with the basics needed on a daily basis, that’s simply not an option for us.
However, if our mental state is impaired due to medications, we may not wake up when our child needs help. We may not notice when they start to show symptoms of something that needs a quick response. There are so many risks that we simply cannot take.
We all have friends, family, and doctors who remind us (more than we want to hear) that we need to take care of ourselves. That if we go down, we will be of no use to our kids. These reminders are meant in the best way possible. But often they come from people who don’t understand how much risk may come with taking care of ourselves.
There are times that a doctor will be creative and help us come up with ways to minimize risks. That’s great. But a lot of times these creative methods are not supported by the insurance companies. There are times when we really don’t have the option. We must take care of ourselves. These are scary scenarios.
When Casey was just a little older than 1, I had a horrible pain in my stomach. It continued to worsen to the point that I felt I needed to go to the ER. I left Casey home with her dad and went to get checked out, thinking that I would be right back.
It turned out that my appendix was about to burst, and I had to have emergency surgery. We had no help at home. No nurses, no nearby family. It was just us. I called and told Tim what was happening.
I seriously considered leaving the hospital and waiting for someone to be able to come stay and help Tim before getting the surgery. He talked me out of leaving.
After surgery, the hospital said I needed to stay over for observations. Nope, that was not going to happen. Before surgery and as soon as I woke up, I was calling to check in on Tim & Casey every 30 minutes. I had to get home as soon as possible. The nurses told me the different things I had to do to get a discharge and I powered through and made them happen.
Throughout Casey’s life, I put off many things that could have really backfired. We have to make these decisions for ourselves all the time and we never know for sure if we made the right choice. Of course, I agree that if you can you should absolutely take care of yourself.
Maybe try to train friends and family to help out in the event that you need them. Maybe have home health lined up. Whatever you can do to help better position yourself for health is a good idea.
Holidays often bring family stresses and pressures. Understanding, patience, and flexibility can make things easier, but that does not always happen. Here is one mom’s story of the guilt a parent of a child with a disability can feel during the holidays.
Categories: Family Support