The 5th & final Stage - Acceptance

I knew when we got the diagnosis of Down Syndrome that I was thrown into immediate and all encompassing grief. Grief for the life I thought my son would have. Having learned what grief meant to the clinical world did nothing for me at that moment. Well, that's not entirely true. I taught me what to look for in the stages of grief. And I certainly went through all of those stages. The only problem was that there is no set standard for how long those stages last. And.... unfortunately no one tells you that you can experience any combination of those stages all at once.

I found myself at the 5th & final stage today at the GI dr's office, I completely forgot my son has down syndrome. It never even occurred to me to tell the nurse he had it. I don't know why it didn't occur to me. Possibly because it's just normal to me to me now. I don't think of the many medically issues that can be associated with it. I don't worry about them (yet). It's what he has. Not who he is. I live with the who every single day. I play with the who. I don't play with the what. I don't sing to the what.

I have entered a stage all its own. It's called mommy to an infant. Part of this stage is making sure that everyone else realizes Sean is a who and not a what. He is a person who thinks, feels, cares, loves, cries, laughs (yes he does that now), smiles when you make funny faces and wraps his arms around you when he's tired, snuzzles his face against my chest & settles in for a good nap.

In my younger years I took an abnormal psych class and the professor was quite controversial. It was one of the few classes I took that I loved to hate. My professor gave me much to think about. He didn't argue whether mental illness was in fact true. He argued that the labels & their connotations were untrue. He wanted someone to tell him what those labels meant and why there were labels. Many people failed his class and many people complained that he was unfair. I happened to take his class and passed. Actually I got an "A" in that class. I didn't get an "A" because I was so gifted or agreed with him. I got an "A" because I argued a good point. My point was that labels gave people something to look for. When someone said schizophrenia, you knew to look for classic symptoms. When someone said the flu, there were classic symptoms to look for. Someone came together saw that more than one person had a particular group of symptoms & decided to give it a name. Dr. John Langdon Down was that person for "down" syndrome.

It is only now that I understand his hatred for labels. When you hear Down Syndrome you expect certain things. For me it was a flat face (think persian cat)  & mental retardation. It has a lot of connotations for a lot of people. I have since learned that the typical features or markers are numerous and can have many combinations and severities. I hate that label. I hate that people immediately think negatively about my baby and look for things they associate with it. Mind you.... I do the same thing to other people & their kids.

When I remembered to tell the nurse about Sean's down's diagnosis, she came in to write it down and then looked at him & said sympathetically with her head cocked to the side, "he's doesn't look like he has it. Maybe a little in the eyes." And it was at that moment that I realized I had reached acceptance. It didn't matter what he looked like. It didn't matter who could see what in him. It bothered me that she felt it necessary to give me sympathy. I wanted to kick her ass. Obviously I just said "eh. It is what it is. I think he's gorgeous." And I smiled.

Does my acceptance mean I'm over it? Not at all. I still have my days when I'm very upset about it. But those days are less & less. I have decided to not think of my son as genetically abnormal. He does not have a defect aside from the heart defect. I am instead, preferring to think of my son as genetically enhanced. He has more chromosomes than most of us. And isn't more usually better?