“I wouldn’t change one single chromosome. I only wish I could go back to the day I got the news and give myself a hug.”
When I was pregnant with my second baby, Aspen, the thought of having a child with Down syndrome honestly never crossed my mind. I was so excited to be pregnant and even more excited for the ultrasound so we could figure out if we were having a boy or a girl. When I went in to do the ultrasound, I was shocked and confused when the doctor told me there were “soft markers” for Trisomy 21. This was not the news I was expecting. Thoughts of blue or pink immediately left my mind. I froze. There was no “” from the doctor. Instead, just “Sorry, your child most likely has Down syndrome. We’ll be doing some tests and closely monitoring you.” I was then told what this “meant for my child’s future” and asked if I wanted to terminate my pregnancy. The worst part to me is that I was asked about termination at every single ultrasound appointment. EVERY SINGLE ONE.
I remember leaving the doctor’s office, devastated. I sat in my car crying, mourning the child I thought I’d have. The grief and guilt I felt were unimaginable. I was so scared of the unknown, if my child would be okay. The doctor had given me a long list of things my baby would ”most likely” not be able to do, possible health conditions, and told me to “think about it.” Think about if I was going to have my baby? It wasn’t even a question in my mind. This was my CHILD. Of course I was going to have this baby and love him/her no matter what. But, I couldn’t help but feel like I was robbed of the chance to enjoy my pregnancy. My last pregnancy. As a backstory, I have pretty bad anxiety, and thoughts of the unknown, fear, and stress just took over me. It’s something I still regret, feeling that way.
It took my heart some time to heal, but after educating myself (The narrative is so wrong, friends. And that list or pamphlet is garbage.), my only care in the world was that my baby wouldn’t be born with any health complications. Everyone wants their child to be safe and healthy. (I still pray for that same thing every night regarding my babies.) I didn’t care that he would have an extra chromosome. It was a tough season of motherhood. My toughest season yet. So many ultrasound appointments with those close-minded, high-risk doctors. Thank God for my midwife; she was my saving grace. She also has a son with Down syndrome and offered an insight that the other doctors could not. She told me stories, answered my questions, and made me join groups with other mothers who had children with Down syndrome. It helped, but that worry was still there. Deep in my gut.
I was able to let go of some of that anxiety with help from my family, and with help from adventures. I love trips; they are my vice. Other mothers in my shoes also helped me during this time (and afterwards) tremendously. I followed a couple moms who had children with Down syndrome and that was the best thing I ever did. It helped me see what they saw everyday. The day-in-day-out of raising a child with Down syndrome. Seeing the photos and videos of their children made me so, so happy. Dayton (my oldest) loved watching them, too. It was actually how I told him his brother would have Down syndrome, by showing him these beautiful photos and videos. Dayton was so excited. So happy. And I couldn’t help but radiate that same energy he had.
Aspen was born December 6, 2019. Exactly one month early. I remember seeing his face and feeling all the anxiety, worry, and grief just melt away. He was so beautiful. So perfect. He was in the NICU for 24 days following his birth, due to his lungs not being fully developed yet and some feeding issues. This was a difficult time as well, but I experienced very different emotions than I had while pregnant. I was so happy he was here. The fear of the unknown was gone at last. I spent every day in his little hospital room, drawing the curtains close to snuggle with him and watching the time tick by far too quickly. Leaving the hospital everyday without my baby was soul-crushing. Heart breaking. I spent so many countless hours there wishing he could come home with me and finally meet his brother. Any parent who has gone through having a baby in the NICU, I feel for you. My heart goes out to you. It’s such a foreign experience, leaving your helpless infant alone. I’d go back to the hospital every night just to sleep with him for a few hours. Then go back home and get his older brother ready for school before returning to the hospital again. The NICU nurses were wonderful, kind, and caring. This made it a bit easier to leave everyday.
But still, I was determined to get my baby home.
I tried to nurse him every feeding time I was there. Every time. I bought countless bottles just to find the one he liked so he would learn to eat without the NG-tube. I pumped every 3 hours so I wouldn’t lose my supply. The nights we snuggled, I would remove his nasal cannula and watch his oxygen levels remain steady while he lay on my chest, listening to my breathing. When they removed his nasal cannula the third week we were there, they were surprised when his oxygen levels were great. I was not. I put in so much love and time and education into getting him home. It is hard to compare the feelings I had when I found out Aspen would have Trisomy 21 compared to the feelings I had when I couldn’t take him home with me. You appreciate every little thing. A diaper change, breastfeeding, a bath you actually get to give your baby, buckling him in a car seat, snuggles, every little thing.
Now here we are today crushing milestones! He is saying some words like “bubba,” “dada,” “Dayton,” “more,” and “bubble” (though, still not “mom” consistently…wow kid. Wow. Haha.) He feeds himself and uses utensils now, He’s doing so well with walking and he is the best little dancer. While milestones are not everything, they are still exciting to see. Especially when you and your babe work so hard on them. I am proud to be Aspen’s momma, to be able to get a glimpse of Heaven’s magic. I wouldn’t change one single chromosome. I only wish I could go back to the day I got the news and give myself a hug. Cry tears of joy instead of sadness. I spent so much time worrying. Worrying about the unknown.
My hope is that I can help educate others on life with a child who has Down syndrome so they can spend more time enjoying and less time worrying. Aspen is more alike than he is different. “Typical” babies sometimes end up in the NICU, “typical” babies sometimes have heart or lung issues, or take longer to crawl or to walk. Why is it our children, because they have that extra chromosome, are treated differently by some because of these “potential risks”?
It all starts with education. If you have just found out you are going to have a baby with Down syndrome, do not turn to Google. I urge you to type in or into Instagram and see your feed light up. Those are the real stories you should be seeing. Not the scare tactics. Not the information in the outdated pamphlet they hand you at the genetic counselor. Look at those sweet faces, message a mom, join a Down syndrome group, and get your questions answered there. We have all been there. It’s okay to go through all the emotions. Give yourself time to process, just know we are here for you. It will be an amazing journey. It may sometimes be filled with sadness or fear of the unknown, but just know you will get so much joy at the end of it.
Aspen is the sweetest thing. His smile can brighten the darkest of days. He loves his big brother with all his heart, and their bond brings my momma heart so much happiness. He is determined, stubborn, strong, and I know he will move mountains one day.
Raising Aspen is not all that different than raising a “typical” child. My oldest son, Dayton, had to do speech therapy like Aspen does now. Dayton also took a little bit longer to walk than the milestone list they give you, too. But nobody “warned” me about him, now did they? Aspen loves to play, dance, watch Disney movies, go on walks, eat all the foods (He especially loves froyo and pop chips!). He loves Mickey Mouse, playing with his big brother and, sure, he may take a little longer to learn some things but when I describe Aspen, I could be describing any other kid, couldn’t I? That’s what was missing when I was given his diagnosis. I was told of all the things that would make him different, could make him different, and could go wrong. I was given all these negatives, but never any positives. What makes him alike? He is the same as you and me. He is human. He is worthy. And to me, he is perfect.
Motherhood is an amazing adventure and while I never quite expected for my journey to take me here, I am forever grateful it has. Aspen has brought me so much joy, he has given me perspective, and he has truly taught me to appreciate every little thing. That is why they call us “the lucky few.”
This story was written by Tailynn Brost for our Hello Parents series. Our mission is to create a community of extreme inclusivity. Appreciating what makes us different and what we all have in common. No judgment. Just a village of support.
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