When you have a child with special healthcare needs, you will hear a lot of people talking about the importance of self-care. You often hear things like, “You can’t take care of your child if you are sick yourself.”
It’s true. Self-care is important. But it’s not always easy.
I recently talked to someone about the stress families feel when a child is in the hospital.
For us, we had help from nurses when we were at home. We spent a lot of time teaching them how to care for Casey. But when Casey would be admitted to the hospital, our nurses could not come with us. In the hospital it was on me and my husband to provide the round-the-clock care for our daughter. The nurses in the unit would offer help, but they did not know how to suction her the way that we did. And they could not sit at her bedside 24/7. We needed eyes on Casey at all times.
My husband and I would tag team. One of us was bedside, wide-awake, the entire time. My husband usually had to work during the day so I would typically be up all night and then tag out to him for a few hours in the morning. He would then go home to work and come back in the evening where we would tag out again. I would lay down on the oh-so-comfortable sofa in the room for a few hours and then get back up for the bedside shift all night.
It was just what we had to do.
Once, after doing this for days on end and being beyond sleep deprived, I had to wake Tim in a panic in the early morning hours. I was watching Casey and suddenly the entire room went black. I seriously lost my eyesight. Tim woke up and took over Casey’s care and told me to lay down and try to calm down.
After about 30 minutes, my vision came back, but that was a really scary event. Over the years, we were able to get our home setup in a way that admits were shorter and less frequent. But when they would happen they were just as stressful.
Later we started to train close friends on Casey’s needs so that they could come up and give us little breaks. That was a really big deal. They would often come with coffee or snacks, too - always helpful.
If you are in the same boat and see your health and stress go wild during admits, try to find a way to get some friends and family to help in any way that you would find beneficial. Self-care is one of the best things you can do for you and your family.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.