Here at the Playhouse we LOVE to hear your stories. They are all important. When you share your reality you make is ok for other moms and dads to feel what they are feeling without guilt. We could all use a little less of that, right? Today we have a pretty amazing story from a new friend Alyssa. Her families story is like so many here but with one pretty amazing twist….read on.
I remember during both my pregnancies the Dr asking me if we wanted to do the nuechal translucency screening for genetic markers. Did we? Once I was told there were extra ultrasounds involved, I was in! Solely for the purpose of seeing that little bean wiggling around on the screen and that fluttering heartbeat. I mean, obviously I wasn’t going to have a child with Down syndrome, or the like.
Everything with my pregnancy with Brennan was so different than with Ellie. I remember being told all pregnancies were different, this was the opposite. I knew from conception he was a boy, and while his sister always measured right on track, he was consistently a peanut measuring a couple weeks behind. I’ll never forget the morning of my c-section sitting there before the surgery and talking with the staff. “Oh it’s a boy?” “And it’s your 2nd?” “I bet he’s big, at least 8lbs”. Really? I was shocked, I just figured he’d be small. I was right, all 6 lbs & 13 oz of squishiness! And cute, too boot!
The first 9 months were filled with so much love, lots of snuggles, smiles, lots of squishy rolls & fun. He was hitting all of his milestones, nursing like a champ, and was the happiest child ever. At his 9 month well check the pediatrician mentioned some concern on his low muscle tone. I heard early intervention and started to tear up. Did I hold him too much? Was this my fault? I knew I should have let him be more independent. Typical parent guilt. So EI came, and he barely qualified for the once a week PT.
The next 3 months were interesting watching his core build and building a wonderful relationship with his therapist. We had an awesome 1st birthday party that July, whale themed, he loved his cupcake! 2 days later my sister, who was visiting from Maine for the special birthday, pulled me outside my parents home to talk to me about something. Immediately, I knew this was not going to go well. She explained that a family friend, a nurse, had casually asked my aunt if we had ever done genetic testing on Brennan. This friend had spent some time snuggling my baby a month or so prior, and saw some significant markers for Down syndrome. What?! This is my child, obviously I’d know if he had this. I was angry, and hurt. My sister cried, and told me repeatedly that she loved me and she was sorry. I went straight to the pediatrician, she ordered the test, and I took him Tuesday afternoon. Monday, July 22nd, 7 years to the day that Mark asked me to be his wife, we got our T21 diagnosis. I just remember hearing the pediatricians voice shaking, and her telling me to sit down. She asked if I had someone with me. I said “are you kidding me? Nooooooo.” We talked for at least 20 minutes, and I have zero clue what was said. There were millions of tears, and a million more questions. But, there was a lesson, it would take me some time to find it, but it was there. It was the universes way of telling me to take a deep breath, slow down & savor the moments.
It’s been 7 months since I got that phone call. I remember that day so well, I thought it was the worst day of my life. I was so mad this was happening to me, to us, to my sweet Brennan. That awful ‘r’ word was racing around my mind, he was going to get picked on, his sister would get picked on, how do people say this is a positive thing?! I hated hearing that I was lucky. They’re only saying this, I thought, because they weren’t dealt this hand. Then I calmed down. I let people in, listened to stories, met some new people.
I don’t remember the day when I realized that I no longer was upset about this. Was it a week later? A month? I couldn’t tell you, because I stopped caring about timelines and specifics, and enjoyed life. Watching my children become best friends, seeing my husband be an even more amazing father/partner, and accepting the incredible support and love we have.
Having a child with Down syndrome is not a positive thing, it is an awesome gift! I feel honored that we were chosen for this, and we are now part of a super exclusive club, that not just anyone can join.
Thank you so much Alyssa for sharing with us today! We look forward to having you here in this space in the near future.