What lies below the surface

I got word a couple of days ago about one of my friend’s son passing away. This is a couple I have never met, but have known online for about 10 years or so. These parents belong to the Our-Kids group that I have belonged to since about 1994, and they have a son who is so much like Skyler that it is scary.

Both of our sons were born about the same time, both very premature (Skyler was 3 months early and 1 pound 15 ounces) and both have Cerebral Palsy to about the same extent. We have compared our sons through the years a lot, compared surgeries, medications, seizures, school systems, and life in general. There are conversations that I wouldn’t begin to bring up with my friends who don’t have special needs kids, like how to get a kid to crap when they spend their life in a chair… Stuff that just doesn’t come up in “normal” conversations.

I have experienced the death of way too many children since I started down this road with Skyler, from my online family to the families that I have come to know and love close by. Unfortunately, it is nature’s way with bodies that are not born correctly, broken, significantly boogered up, (take your pick of expression). I think I stopped counting sometime after a dozen or so funerals or notices of death I can remember.

Parents take the death of their children in different ways, just like other parents with typical kids. The only real difference is that most parents don’t expect to bury their children, instead of the other way around. I have seen a lot of anguish, tears, some acceptance of Gods will, and some indifference. But I saw something different with my friends that I had not seen yet, or I guess I didn’t want to admit was hiding there under the surface.

Relief.

Yeah, they didn’t say the words, but you could pick up on it pretty dang easy. They were so worn down by their life of full care of their son, that you could just feel the weight lifting off of them. Not to say that they didn’t love him to death, just like we love and would do anything for Skyler. But you just knew that they were already considering a future without their son at home forever, all the medical issues, what would happen when they pass away before him if it happened…

It was all unfolding before them, and it brought me back 14 or so years to when Skyler was about 2. I attended a session with a therapist named Robert that was having a group of new dads with special needs kids. It happened that I was the only one to show up that evening, so he and I just sat and chatted for about 3 hours. His son was 16 at the time, had MS, and he asked me how I felt about having Skyler. I was pretty new at this, and said it’s OK, we will be fine, no problems, same old life… Blah blah blah. He listened patiently to me being gungho, and shocked me with his response.

He said, I wish my son would have died.

My first experience with somebody being completely honest with me about what was coming. And now, 14 years later, another completely honest reaction to hit me in face.

I’ll keep trying as hard as I can, but some days you have to be honest with yourself and wonder what would have been.

My apologies to those who might be put off by this, it’s been a week…