Special Children – Fear, Joy, Pain

A very dear writer friend sent me a piece he had written as the final part to essays he wrote about the loss of his child, a child who had many physical and mental problems from birth, yet who led a fulfilling life and brought his parents and siblings endless joy.

It has been three months now since the lights went out of my son’s beautiful brown eyes. For the most part, the agonizing pain is behind me – in its place is a persistent emptiness that can only be filled by staying busy or by immersing myself in family affairs. At times like right now, alone and working at the computer, the emptiness is displaced by vivid memories of him, his sweet disposition and his ever-present and luminous smile. Rather than being comforted by the memories, I ache from them. Inexorably, they lead me straight to that awful moment when I realized that he was slipping away from me, that I was powerless to prevent it and that I would never be able to hold him and cuddle him again.

I don’t remember this level of grief over the deaths of my dad, mom, and two older brothers. Those deaths were hard, but the memories are mostly happy ones. Thoughts of my dad, for example, rarely lead me to my angry 3-mile run from the hospital to my home after being told by the doctor he had died before we got there. Instead, I think of the times we played catch, or seeing him smiling and cheering on the sidelines during a ball game – and those thoughts metamorphose into a warm, sentimental feeling. I have thought about this a lot over the past months and the conclusions I have reached aren’t personally comforting, but may be instructive for others who lose a child – particularly a special child, or anticipate the birth of a special child.

I am extremely bitter about the hardships that my son had to face in his life. Don’t get me wrong, however. I have often been asked if we would have had Billy if we had known how severe his problems were going to be. The answer is still an emphatic YES. Despite the hardships, I believe that he had a good quality of life – at least as he knew it. He was unaware (As far as we know) that he was missing out on any thing. Hugs, smiles, music, television – those kept him happy. Sports, bikes, high school proms – those had no meaning for him and were, therefore, not missed. We, the parents, are the ones who missed out, and are bitter. We are bitter because he was ill so often and suffered so much more than most. He didn’t know the difference. He didn’t know that he shouldn’t smile and be happy with a tube rammed down his throat. We knew because we stood so many nights by his hospital bed and witnessed his struggles while most children, including his brothers, could not imagine being so desperately ill.

Conclusion number one is that any life is precious. No matter that his life was hard when measured by the yardstick of normalcy. He was a happy child and deserved his time in the sun. As parents, we owe them the chance to be as much as they can be – no matter what the hardships. In case you haven’t noticed, this is a shameless plug for the pro-life position.

Conclusion number two is that just as parents are willing to risk their lives for their children, so must they be prepared for infinite hurt by their loss. It is not in the natural order for a child to precede his parents in death. The happy memories of other loved ones will in time, be just that – happy memories. The happy memories of your children will be forever bittersweet. That is a price that parents must pay for their joy.

This was an extremely painful loss for my friend, as any loss of a child would be to any parent. I have to imagine that the writing process, as he explains, was extremely cathartic and helped conjure the memories, images and feelings that one holds so dear when a loved one departs.

This process of reading and comprehending the entire matter has brought me to tears innumerable times, and compounding my feelings of sympathy, empathy and plain old selfish concern is a letter I received from another writer who wished not to be named: he too lost a special child.

Both of these men were able to put their experiences into such vivid and captivating detail that I was overwhelmed with a desire to crawl out of my skin and slip away to a place where nothing horrible happens, no one feels pain and children never die – an imaginary world that does not exist.

As I move into my seventh month of pregnancy I am gripped with the knowledge that there are no promises or guarantees of health for our new baby. I do my best to take care of myself and hope that God’s grace and the genetic role of the dice fall in my favor. All tests so far lead to “yes.” But again, there are NO guarantees in these matters. Add the discomfort of pregnancy itself and the hormones that control your moods every second of the day and it’s amazing that pregnant women don’t lose it, and by “it,” I mean my already fragile mind.

When I read stories about special needs children it is often with a disconnected mind, not because I don’t care, but because I don’t want to, or can’t imagine the amount of pain, time, patience, care and, above all, love that goes into having a child who isn’t “normal”. I find parenting my perfectly healthy child to be an enormous challenge much of the time, so I think my limitations for what I can handle have already been set.

I am sure all parents think that until they are faced with the necessity of drawing upon reserves that they didn’t know they had. I am sure some fail, but most succeed, and for that, they are special too.

I still pray for the health and well-being of my unborn child with the same fervor as I pray for the strength each day to bring me one step closer to being a better mother. Some days God’s with me, some days he’s busy. But every day it’s up to me, and when I am not consumed with self-pity I count myself lucky for being given a child who is easy to love.

So do these two fathers. All children should be so lucky.