The morning after Willow was born, I woke up with that feeling everyone tells you about after you have your baby- complete endless love and euphoric happiness. She survived the delivery, she was off of oxygen and breathing on her own, she had a feeding tube in- but was doing really well, my surgery went well, my parents had arrived- all was right in the world! So much so, that I got up and walked to the NICU… with my catheter in one hand and IV pole in the other (I was only about 12 hours post-op, and my nurse was less than pleased, but I couldn’t stay away from my girl- sorry if you’re reading this Jamie!)
P.S. The look on my husbands face when he answered my knock on the NICU door that morning was priceless- any time I need a laugh, I go back to that moment.
That first morning together as a family was happiness like I had never experienced: we snuggled our sweet baby girl, cried, laughed, and took in every single ounce of goodness that she was- and still is. After a while, the nurses asked me to head back to my hospital room so I could be examined by the surgeon, Steve went with me. Dr Q. came by, all was well, and the three of us reveled in that contagious happiness together… then Dr. B (the on-call pediatrician) came in.
This is where it starts to get hard for me to share: I’m not particularly happy about the way I felt after that initial conversation with the pediatrician.
The minute I heard the words, “I suspect she has Down Syndrome”- that euphoric happiness that I woke up with vanished- and was replaced with fear and disbelief. After that, every single time I looked at my baby girls face I tried to see if I could recognize the slant in her eyes, the way the doctor did- or the ‘fatness’ to her very tiny hands that the nurse so kindly referred to as ‘clubbed’. The majority of my time during those days was spent convincing myself that she didn’t have Down Syndrome- I honestly didn’t even entertain the thought of, ‘well, maybe she does’… she couldn’t- she was perfect (turns out, She does have Down Syndrome- and She IS perfect). I wish I would’ve just enjoyed those first few days of life with her- without the worry and ‘what if’s’.
After the pediatrician left the room, my heart sank when I realized, I had to go tell my parents this, who were waiting in the lobby to meet their grand daughter for the first time. I felt like I did something terribly wrong- you know that feeling when you’re a kid and you have to go tell your mom you broke her favorite vase?
We had her blood drawn and waited 7 days for the results- and each day that passed, someone new in the hospital found out that we were waiting on genetic results. We heard things like, ‘no way, she does not look like she has down syndrome, it would be very obvious’ and, ‘oh, I know someone with Down Syndrome- he is so sweet, but it’s not like he’ll ever go to college’. And my favorite was, ‘well she probably has low muscle tone so nursing will be a problem’.
… thank you random medical professional/stranger who has never met my daughter, for deciding what her physical challenges may be- I believe we refer to that as prejudice.
It felt like everyone had something to say about the appearance of my baby girl- the features on her face that were ‘wrong’, her small size that was ‘abnormal’, her tongue that was a bit larger than the baby next to her in the NICU. I remember weeping every night- just being so sad that my brand new infant had so much judgement cast on her. It quite literally broke my heart over, and over, and over again.
I had been counting down the days until we would receive the genetic results, and woke up on January 15, 2018, feeling like it was Judgement Day- the day was finally here. The hospital had rotating on-call pediatricians, and today, of course: there was a new pediatrician who we had not met before. Dr. F was older, stoic, and much less empathetic- but gentle and kind at the same time. He wore a tie and nice loafers, and he spoke with an accent that I found comforting.
I had asked every nurse I saw that morning for her test results- but we had to wait for Dr. F to access her records. He did rounds on the floor first that morning, so I sat holding my sleeping baby, waiting for him to come into the NICU. I was so nervous. Steve and I didn’t speak much that morning, but held each others hand tighter than we ever had before. The moment Dr. F entered the NICU chills went down my spine, I put Willow down in her bassinet so I could fix my shirt and look presentable for the doctor. I remember feeling like I had to look put together when we received the news- weird, right?
Dr. F went into a small office inside the NICU and I could over hear him speaking with the Nurse. I heard him mutter, ‘that’s not me- they will have to see a genetic specialist’- I immediately turned my head toward Steve and said- ‘She has Down Syndrome’. Steve wasn’t convinced just yet, and reminded me to ‘just wait until we speak with the doctor’. Dr. F came over to our little corner of the NICU with a white piece of paper in his hand- I nervously smiled and clenched Steve’s hand. Then, Dr. F said, ‘have you seen this?’ “No, Doctor”… ‘Well, It’s Down Syndrome- I am surprised, but blood tests don’t lie”. I don’t remember much of what he said after, I just remember Steve putting his arm around me as I felt tears streaming down my face, effortlessly.
I remember some pieces of that conversation: Dr. F told me it wasn’t my fault- there was nothing I did, or could have done that would’ve made any difference. He told me, that there wasn’t anything he could do either- there was no cure- and, we should see a genetic specialist. I looked at Steve, and he wasn’t upset, rather he just looked concerned for our girl. My strong, steady husband- love of my life. I excused myself and went back to the room we were using as a second home during our NICU stay- and I fell apart. Steve went with me, and after a while I remember him saying, ‘I just want to go be with her’- which is what we did. We spent the day taking turns holding our girl, crying tears into her sweet head that was full of fuzzy hair, and we continued to clench each others hand tighter than ever before.
The days following her diagnosis- I went into full hibernation mode. I did a couple of quick google searches, and found articles written with negative tone and pessimistic outcomes. Nope- I was not going down that rabbit hole. And, I didn’t particularly want to talk about it with anyone either. For a while after we received her diagnosis Down Syndrome was all I saw. I didn’t know what it meant or what I was supposed to do- what did it mean for her today, for tomorrow, in five years- in ten years? I felt like Down Syndrome stole Willow away from me- and instead of enjoying her and getting to know her, I spent hours on the phone with doctors, meeting therapists, explaining that it wasn’t her fault we weren’t breastfeeding- it’s just that her mouth was very small and she’s pretty sleepy (she was still supposed to be cooking at this point- give a girl a break!), I spent endless hours pumping and sorting through these emotions that I was so ashamed to even have.
I just wanted that euphoric happiness back. I would’ve done anything to go back to that morning with Steve and Willow before Dr. B came in and suggested genetic testing.
A few days later, my husband and I went across the street to Stars (awesome hamburgers) for lunch, and he slid the phone over my way with an Article titled, ‘The best things about having a Child with Down Syndrome’. And, again I found myself weeping. Public weeping became a thing for me for a while there. One of the parents commented on the article, “I never knew I wanted a Child with Down Syndrome, until I was given one”- I liked that. Maybe this all was going to be OK after-all?
If I ever saw Dr. F again, I would thank him- he had the privilege of sharing some pretty big news with us, and he nailed it. The most memorable part, was something he didn’t say- he didn’t say ‘I am sorry’. I like to think, he didn’t say “I’m sorry” before delivering the diagnosis, simply because he wasn’t sorry. Just like, I’m not sorry.
Well- there you have it, our Birth and Diagnosis Story. (P.s. these photos are from the day we received our diagnosis). I’m really excited to share more about my sweet girl, and the challenges that she’s overcome in these last 9 months- spoiler alert: she is super duper rad and completely kicking the stereotypes to the curb.
Thanks for reading.
-Ashley
