The Loss of the Perfect Child

I went to the monthly meeting at the Down Syndrome Association yesterday. I am rarely able to attend because I am working, so I took advantage of my broken foot and went to the meeting. They bring in speakers on various topics that are relevant to us and our families. Last fall I attended a meeting about estate planning which was wonderfully helpful. This month the subject was "The Loss of the Perfect Child". I think the title really sums up the message- dealing with the loss and grief when you discover your child isn't perfect. Of course, no one's child is truly perfect, but at birth we all think our child could be president one day. So when there is a problem, those dreams are dashed sometimes before a mother is even able to see her new baby.



Our group was very diverse: Some brand new to this adventure with babies less than a month old, others whose "children" are better labeled adults. One of the things we discussed was the poem by Emily Perl Kingsley entitled Welcome to Holland. We were given a copy from the genetics clinic when Justin was diagnosed. It is so perfectly applicable. I think it describes the experience so well. Some think the comparison would be better made with Mars than Holland, but I think Justin is so much more similar than different to other children. I get choked up every time I read that story, maybe even more so being a flight attendant myself. I have certainly had my share of unscheduled landings! I know what it's like to land in a place you didn't plan to, being totally unprepared and being throw into circumstances completely beyond your control. Some feelings are raw, making it difficult to get past the "DS" label, and others are at a place of complete acceptance, unable to imagine a world with their child any other way. Most are somewhere in between. And I think most of us vacillate widely any given day. It's not the life most of us would have chosen, but we love our children and will fight for them.

It was a really good meeting. I did more listening than talking as Justin was being very crabby. (He later developed a fever, which explains everything!) It was good to be able to relate to others and hear the feelings that seem too shocking to be spoken out loud not only admitted but also seconded. I wish I could have had more time for chatting afterwards, but now I think the most important thing I need to do is pray. I live my life encountering dozens of people every day and I have no understanding of the depth of pain they are feeling. That emotion can be so near the surface and no one knows and seemingly no one cares. I want to care, at least for the people God sends through my world. After all, ALL of our children are imperfect. Some are just faced with it sooner than others.