Today, March 18th, is National Trisomy 18 Awareness Day. The date is intentional — the 3rd month of the year, the 18th day — for 3 #18 chromosomes. A year ago, even 3 months ago, I had no idea this day or syndrome existed. Today, T18 has been on my mind all day long. It is most days, but today really really so. I found out in the beginning of March that this awareness day was coming up. So for the past 2 weeks I’ve been thinking about what I could do to increase awareness. Paint a bilboard on I-40 so everyone passing through Knoxville sees it? A little far fetched. Bake cupcakes and take them to Jack’s school? Great idea, except he’s not even 2. I’m pretty sure all the parents and teachers would hate me for that. Plus, not sure how it accomplishes awareness. T-shirts? Some kind of t-shirt design. And that probably would have been good, but there was no way I could get that together in a week and a half.
So as yesterday was winding down I was discouraged but accepting that I had no good ideas for spreading awareness. So I resolved to do only what I can this year. My scope may be small, but I decided to share with any I could around me. So I told the nurses and doctors at my perinatal office “happy trisomy 18 awareness day”. I spread the word on my social media accounts — sharing on facebook, twitter, and instagram about what today was and who I’m proud to speak up for today. And so now I share here. Today I am proud, so so proud to speak up for my son, my baby boy, Gabriel Patrick Morgan. I will spend all my days fighting for him, spreading awareness, sharing his story. Always.
And because today should be all about him, I want to share with you a little about our baby boy. Here’s what we know about him so far.
He is a fighter!
- When we found out about all of the issues he has when he was 20 weeks, the genetic counselor said she was surprised he’d made it that far. Today, I write this 30 weeks pregnant!
- He has a severe heart defect [one that the pediatric cardiologist ranked as an 8 out of 10 with a 10 being irreparable] yet his heartbeat is always strong and perfect.
- Despite a faulty heart and a brain that isn’t properly formed, he is so active! It’s hard to remember, but I think I can safely say that he is much more active than Jack was when I was pregnant with him, and Jack was active. At the last ultrasound we had, the tech said that he was the fastest baby she’d ever seen.
- He continues to be a miracle baby and defy the odds every day.
He is a cuddler
- The very first ultrasound we had of Jack [at about 8 weeks], he looked like a free-floating gummy bear. He was Mr. Independent. The very first ultrasound picture we have of Gabriel, he is nestled in so tightly that you can barely differentiate him from my body. We knew he’d be a snuggler from the get-go, and we’ve been very excited about that!
He responds to us
- When Tommy or I rub my belly, Gabriel moves in response to it. He knows it’s us, and he is interacting with us already.
He loves buffalo wings
- His favorite food. He goes crazy after I eat wings. Like turning flips, crazy, crazy. It’s fun.
He keeps late hours
- He is always moving around 10 – 11 pm. And he regularly wakes me up during the night with his movements. It’s the only time I actually like being woken up.
He always reassures me
- Whenever I get nervous that he isn’t doing well or when I’ve had a bad day, he seems to be most active. It’s amazing how it really does time out to when I need it most. He is going to be an encourager for our family, I know it. Actually, he already is.
He brings out the best in me and Tommy and makes us want to be better parents and people
- We are so proud of him. We’re proud to be his parents. We feel privileged to know him. I never really before understood how you could form such a deep bond with a baby who you hadn’t held or laid eyes on. Gabriel has changed that in me. I am crazy about him, he has my heart. Tommy and I talk often about how great Gabriel is and how we just feel so blessed to know him and be his parents. We’re crazy honored God chose us for him.
He is adorable — we know that but can also tell from the ultrasound pictures
No matter what genetic defects he has, he is still made perfectly in God’s image. Perfectly.
- For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. Psalm 139:13-16
So today, and every day, we honor our sweet baby Gaby.