Apr 12, 2007

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.


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…


  1. Anonymous9:18 PM

    You are a brave, strong, and honest man. Being honest with yourself and accepting it is a beautiful thing.

    I'm so sorry for the loss for your friends. A loss is a loss. Period. What would have been is a loss. What could be is a loss. Letting go of the past and moving forward means dealing with loss - no matter how 'good' the forward look may be. In my mind, survival is moving forward - however you can get there.

    Some of us look to the future to deal with our pain (my personal choice), some of us stay with the pain a little longer. The saddest thing is when someone ignores it all and stuffs it away.

    I've often wondered what makes each of us choose our approach. I've had theories, but haven't figured that one out.

    Best wishes to you and your family.

  2. I'm at a loss for words, SD. Thanks for a wonderful post.

  3. I too am at a loss for words. I can only offer a hug of understanding.

  4. You are a pretty brave man for admitting a hard truth.

    Sometimes it's all worth it, and sometimes it so ain't, and it's a good thing to admit that, because then we all get to be human, instead of merely failures.

  5. My Dear Brother,
    You are the most brave, couragous, and giving person that I know. Never in a million years could I have done the surperb job you have done as Skyler's Dad. You and Kathy have made Skyler your life's mission. We all have our "What ifs" What is I still had Jen? Would I be the same person I am now? Would I have gone after Rich with a big stick? Only God knows. I'm not a very religious person despite Mom's attempts at being voted in Pope, but I do believe we do the best we can and it goes how it goes. You clearly have done the very best you can. I love you very much

  6. Anonymous3:29 PM

    Wow. Just, wow.

  7. Thank you all for your support, it means more than you can imagine.

  8. SkyDad - I once told you how much I admire you for how well you take care of Skyler, a very draining job with some hard reality, and yet you smile and laugh so much. You told me then that anyone would do it for their kid, you "just do it." I'm still not sure if I believe that, I think it takes someone very special like you.

  9. Wow. That is one of the most heartfelt, profound and honest things I've ever read.

    Raising kids without medical problems is challenging enough. Reading your blog, it's clear that your son has thrived. He's benefitted from having strong parents.

  10. GKL: Nobody does it alone. I have special friends, thank you!

    JY: You know quite a bit about kids and what it takes yourself.

  11. Coming from you, that's just about the highest praise I've ever recieved. Thank you.