It was 5 years ago today that I got the call. Jason was putting the boys down for their afternoon naps when the social worker called.
"Kendra, we got the results back from the amnio and there are 3 copies of the 21st chromosome indicating that the baby does have Down syndrome." I was 18 weeks into my pregnancy.
I hung up the phone and stood in shock. Jason came downstairs and I was able to tell him the news. He went off to process the news in his own quiet way. Oh let's be honest. He heard the news, responded with, "really," and went to bed. The man is one of a kind. I made three very difficult phone calls to family. I couldn't make it through any of those calls without breaking down. I was struggling to get past this vision of Down syndrome I had in my head. I was going to have a daughter who had special needs. The vision in my head of the perfect family just died in the flash of a phone call. I worked with people with special needs. I wasn't supposed to have a child with special needs.
As a person who likes to have a plan, I sat on my couch for the next couple of hours crying, processing, and (because I'm a multitasker) making a plan. Step 1: I would give myself two days to grieve and cry and feel sorry for myself. I was drained pretty dry of tears after a single day and, while still really struggling, ready to get off the couch. Step 2: Read up. Reading all the medical things that might go along with D/s will scare the crap out of you. So I cancelled step 2. Step 3: Ditch the plan and just go with the flow. One day at a time. And we did.
The next months were a whirlwind of doctors appointments, a diagnosis of duodenal atresia, meetings with doctors and surgeons, and realizing that Alexis's first several weeks would be in the ICU. My doctor also put me on medication for high blood pressure.
It's so cliche, but if only I'd known then what I know now. I wish I'd known 5 years ago how I would marvel daily at Alexis and all she can do. I wish I'd realized how proud I would be of her, and how every little accomplishment warrants a dance party and ice cream. (She dances while I eat ice cream.) All I thought of 5 years ago was how her appearance would be different, how sick she might be, and what delays she could have. If only I'd known then that while there are frustrations and stresses over things like therapies and IEP's, our day to day struggles are that of any 4 year old: limiting her time watching tv, making her stop stealing her brother's toys, and getting her to stop pulling all the toilet paper off the roll. I wish I had known then how perfectly "normal" she would be.
A little over a year ago I was invited to join a group of local moms that have kids with Down syndrome. Primarily it's a group where we can go to vent, brag, or ask questions related to our kids and to Down syndrome. The group has gotten so big that we've started a spin off group which has also quickly grown. There have been a handful of moms recently who are either due to have or have recently had a child with Down syndrome and duodenal atresia as Alexis did. It's one of the most therapeutic thing I've ever done. I get the privilege of telling a young scared mom that Alexis has many of the same things that her baby has, and that Alexis is now a healthy, happy, social, and sassy 4 year old. Hopefully those moms think I'm helping them. They have no idea how much they're helping me.
My blood pressure is perfect now, thank you very much.
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