This is a hard post to write for many, many reasons. Not the least of which is that my feelings about DS have changed so dramatically over the last two and a half years.
When I first heard about our increased odds of DS based upon my 12 week labs I took comfort in the 95% chance that we would end with a typical baby. 95% chance is pretty good right?
If you had a 95% chance of getting a promotion or winning some money in the lottery you'd feel pretty confident about your chances, right? And our 20 week ultra sound looked great! No heart defects, no structural defects and a clear fetal echo 4 weeks later.
Life was good, my pregnancy was pretty easy and the best part was that we were getting a healthy baby.
I look back and wonder if it would have been easier to accept if I had skipped the 12 week blood work like I had planned to do. Or if Mike hadn't convinced me that our baby did not have DS and that I was just being ridiculous. Or if for one moment I had allowed it to be alright that MY child would have a serious life altering disability that would impact every facet of her being.
You wouldn't know, just by looking at this picture, that the thought of my precious, loved, wanted baby having Down syndrome destroyed me completely.
Although at this point I was still grasping to my final hope that the geneticists, pediatricians, and neonatologists were all wrong and that the karyotype was going to come back showing a perfect 46 chromosomes.
Because if my daughter did have Down syndrome it would mean that there was no hope at all.
I really believed this. And all the crying, begging, bargaining and denial in the world did not change my thinking.
However, the wonderful thing about caring for a baby is that it pulls you out of your head and drags you into the here and now. It was impossible for me to embrace my sadness while I was caring for Phoenix, because the act of mothering and the feeling of love causes sadness to disappear. The two feelings cannot co-exist in the same space.
For a while I was able to cope by teasing my feelings apart and separating them into corners. Down syndrome was in one corner and my love for my daughter was in the other. I hated DS. I love my daughter. Clear as mud, right?
Now, 2 and a half years into our diagnosis I can finally admit that I do not hate Down syndrome. I don't love it and I would probably still change it if I could - but I don't hate it any more. And incredibly, having fully embraced my sadness and grief for such a long time I have emerged on the other side of it with an amazing feeling of happiness and freedom. Like a heavy burden has been lifted. It is as if I have actually expanded my ability to accept and adapt. This alone is such a gift.
This is my other gift: