When we were in the NICU, we were bombarded with all sorts of people: nurses, neonatalogists, socials workers, etc. In the first days, while I was still in the hospital as well, many would come to my room and delicately dance around the fact that E had DS, not realizing that we already knew it. While I appreciated their delicacy--one probably learned because many parents receive the diagnosis at birth and may be having a difficult time with it--it also alternately amused and frustrated me (postpartum hormones are fun!). I'm not sure they expected our joy and equanimity in the face of the diagnosis.
What they didn't know was that after the 30 or so hours of devastation that we felt in August upon learning about E's Trisomy 21, we read all that we could on Down Syndrome and what to expect. After a while, the reading became too much because it tells you absolutely everything that could be wrong with your child. By mid-November/early December, we reached our limit. Enough with what could be wrong, let's find out what's right. She stopped being our DS baby and became just our daughter.
When I met with our doula (highly recommend having one if you're going to give birth), she shared with me that she has a daughter with cerebral palsy and what it was like being a mother to a special needs kid. It only confirmed what we had suspected but hadn't yet known for sure: that we get to be changed for the better and that our lives would be infinitely enriched. The doula also said that it would probably be a harder birth emotionally than physically. And it was, but not because we were sad or scared or worried. It was emotional because she was so wanted at that moment. During labor and delivery, we just wanted to see her and the tears were of joy and relief that she was finally here.
One question, though, that we had from one of the social workers keeps reverberating in my mind. She asked, "Does she look like what you thought?" My immediate answer was, "Heck no, she's blond!" which is true. I never expected a blond baby, but I had also worried when it was difficult to read the books and look at the pictures of kids, especially infants, with DS that I may not love her physical appearance. I had worried that it might take time to bond with her as I did with M. I had worried that, even though so many parents of special needs children explain how their lives are better, it would take days, weeks, or years to get there. Finally, I had worried that my greatest failure as a mother - considering terminating E's life based on the amnio results - would be compounded by not being as much E's mom from the start as I was M's.
As I wrote earlier, though, I was so happy (and T was too) when she finally arrived and we could hold her and see her. From the moment she left my body, all I wanted was for her to be back in my arms. I can say, too, that E doesn't look like I thought she would, and not just because she's blond. She's more beautiful to me than any other baby out there - other than the first one T & I made. She has some physical features of DS, but after the first few days, they just become part of her beloved face. It's not that love is blind to the DS, but rather, E is more than the DS features and focusing solely on what is DS will make us blind to what is uniquely E.
1 comment:
What a beautifully written birth story.
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