As life resumed post-amnio, a test result was plunked into my patient portal. As I opened it and scanned the notes it read:
"RESULT: MALE WITH THREE CHROMOSOME 21 SIGNALS"
"INTERPRETATION: TRISOMY 21"
Down syndrome.
We expected the result to be exactly this. It wasn't a shock. My NIPT had a very high value for Trisomy 21. The NIPT is rarely wrong as it looks at actual placenta DNA. But... but but but.... reading the result, with my eyes, in writing, worded clinically, was a whole different entity. It was jarring. Factful. Real.
My baby has Down syndrome.
I am expecting a baby boy with Down syndrome.
However, I felt a pause and a peace settle. I didn't grieve or mourn as I had read so much about. Speaking frankly, after walking through as many miscarriages as I have... I know loss, brokenness, and mourning. This is not that. This is not the death of anything. The news of these test results was simply verification and a glimpse into my baby's world ahead of time. I felt an overwhelming competency and calm with this little life entering mine. I guess the mourning could come from welcoming a child who is different than you pictured, but I've had 6 children and if there is one thing that having a plethora of children shows you, it's that each child is unique and different from the get-go. I've seen their temperaments and personalities from birth. They are all vastly different and seem to come already programmed with their personalities, temperaments, and natural abilities. Same story with this little guy. He is who he is. This diagnosis didn't change anything about him. I felt ready to dig deeper into the world of Down syndrome and what I needed to learn, and know, and do. Game on.
While I was feeling all this peace, Jim wasn't sure what to think. I think his processing looked a lot more human and real than mine did. It involved more grappling and uncertainty, I think. The day we got the amnio results back, he stayed quiet. Later that day he asked me if I could find a book about Down syndrome. I hopped on my Down syndrome pregnancy board and scouted out a book for him. It arrived 2 days later. The book sat for a few days and I wondered where he was at in his processing or if he would pick it up. On a Saturday afternoon, he read it in one swoop. The book seemed to hold the answers Jim sought.
Two weeks ago roles reversed.
While Jim read the book about Down syndrome and digested its contents, I began the deep dive into Down syndrome. My dive was, well, not the most graceful. I read too much and began preparing for things that I had no place preparing for yet.
My mind WHIRLED.
I felt I had to capitalize on that blessing that I was given by these test restults: time. I had a Down syndrome diagnosis during pregnancy. Early in pregnancy. I needed to learn everything. I needed things in place. I began jotting notes as I read:
Get a new pediatrician who specializes in Down syndrome
Set up a consultation with said pediatrician (or maybe interview more than one?)
Find a lactation consultant who is familiar with Down syndrome
Set up a prenatal meeting with her to make an action plan for breastfeeding
Get "in" with the local Down syndrome center and figure out what their "New Parent Program" does and offers.
In first six months of life, see an ophthalmologist
Secondary insurance? How and when? What does it cover?
When to set up services like speech, PT, or OT?
Let me tell you, my brain can be a beautiful tool when making big life decisions. It leaves no rock unturned and it steadily thinks through all possibilities, finding the best choices, actions, and decisions.
However.
It also can be a complete fault when it hyper-fixates on things that it shouldn't. I suddenly found myself in a dark and consuming place. This diagnosis felt like too much. Too much to do. Too much unknown. To much TO know.
I may have spiraled a bit.
Or a lot.
I also felt alone because Jim, while he had read the book, was still quiet. You know, because life was still trucking along and we have a busy one. Work, kids, commitments... all of that was still happening amid these weeks of my mental pause. He was smart though: he wasn't halting life to stare at this diagnosis.
Finally (after pretty much completely unraveling), I opened up to him and my brain spilled out its contents. It was too much. My brain had consumed so much information that I thought it might pop. It felt entirely overwhelming and I felt completely alone (not because I was alone, but because that's what my brain was telling me. Nobody else was deep diving with me. I must be alone. False.) Thankfully, Jim felt assured and calm regarding what was ahead. His book gave him just enough information. As I shared my concerns, Jim talked me off my ledge. I put my to-do list away and my mind was able to recenter again. This is just a baby... a regular baby with some unique challenges. And more than that, he's my baby. Woo, thank you Jim.
We reached a beautiful place of acceptance for both our baby boy and his diagnosis. My brain stopped spiraling, Jim's mind understood and we turned to walk through his pregnancy just like each of our other babies. It was a pretty beautiful thing after the mess that I made in my mind earlier that week.
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