Death of a Severely Impaired Child

Since September two children on my caseload have died. Many of the children I work with are medically fragile and their life expectancy is short. The most recent child to pass was a girl, we'll call her Mia.

Mia's mom and I spoke a week before Mia died. Mia was having health issues, we were discussing the possibilities of surgeries etc. At one point in the conversation Mia's mom and I discussed what it was like being the parent of a severely impaired child. Mia's mom said she would often look at other children who were running or playing and think, 'Mia will never do that. Why does Mia have to miss out on running and playing. Why does Mia have to deal with all of these health issues and a failing body? Why is it my child?'

I don't know.

I watch the parents of the severely impaired children with complex health issues. I'm not sure how they make it through all of the hospitalizations, medications, physicians, and equipment. I am often very impressed by their knowledge of their child, tone issues, feeding, and positioning. I learn from these parents not only what it means to be an awesome mom or dad but also medical procedures, feeding tips, how to find a good doctor and much more.

One thing I learned from a parent of a severely impaired child when my own daughter was being hospitalized frequently was don't waste time with an MD if your child is having severe medical problems go to the specialists. Going to a specialist ended repeated hospitalizations for my daughter, thank you Barb S.

I guess my point is, I miss the kids that have passed, but I feel their quality of life is better now without their defunct bodies. I admire the dedication of the parents and the incredible amounts of knowledge these parents acquired and shared with me.

I don't know why they had to lose their children, I just hope that what they learned doesn't go to waste. Maybe their child was in their life to lead them in a new direction and help them to help others, or just show them a new way of living and looking at the world, at least that's what these kids have done for me.