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Why I'm One of the 'Lucky Few' as the Mother of a Child With Down Syndrome

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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 to go do 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 — or Down syndrome. This was not the news I was expecting.

Thoughts of “blue or pink” immediately left my mind. I froze. There were no congratulations from the doctor. Instead, the doctor just said, “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 was 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 was unimaginable. I was so scared of the unknown — if my child would be “OK.” The doctor had given me a long list of things my baby would most likely not be able to do, ran through my child’s other possible health conditions, and told me to think about termination. 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 or her no matter what. But I couldn’t help but feel like I was robbed of a chance to enjoy my last pregnancy. I have anxiety and worry about the unknown, so fear and stress just took over me. I still regret feeling that way.

It took my heart some time to heal, but after educating myself — the narrative you’re told is often so wrong, friends, and that list or pamphlet is usually garbage — my only care in the world was that my baby wouldn’t be born with any health complications. I didn’t care that my baby would have an extra chromosome.

But it was a tough season of motherhood — my toughest season yet. I had so many ultrasound appointments with those closed-minded high-risk pregnancy doctors. Thank God for my midwife, though — she was my saving grace. She also has a son with Down syndrome and offered insight that the other doctors could not. She told me stories, answered my questions, and encouraged me to join groups with other mothers who had children with Down syndrome. It helped, but my 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 some adventures. I hate staying put, so trips helped so so much.

They were distraction. Fun. Exploring. Family time. And even a little magic.

My husband and mother made a Disney trip happen for our last big vacay before Aspen was born. And I have to say that it saved my mental health. Being in the happiest place with my little family made my heart so happy. It was amazing to finally let go, breathe, and realize everything was going to be OK.

I’m a sentimental person, and Disney is a place I went to as a kid with my mom and dad. My dad passed away from cancer in 2015, and being able to go somewhere I have memories of us happy together — all together — just helps. My father was a big Harry Potter fan too, so going to see Hogwarts at Universal Studios was the cherry on top of the sundae. It was here on out that I decided to take back control and not let anyone tell me anything about my child, like what he would or wouldn’t do. I started to try to truly educate myself.

I followed a couple of moms who had children with Down syndrome, and that was the best thing I’ve ever done. It helped me see what they saw every day. I saw the day-in and day-out of raising a child with Down syndrome. Seeing their photos and videos of their children made me so, so happy. My oldest child loved watching them too, and that’s how I told him that his brother would have Down syndrome. Dayton was so excited and happy to have a little brother, and I couldn’t help but radiate that same energy he had.

The night before I was scheduled to be induced, I took Dayton to “Winter Garden AGlow” here in Boise. It was a tradition we did every year — seeing the botanical garden all decked out in Christmas lights, drinking cocoa, and visiting with Santa. It was perfect. And Santa was amazing. He made me cry happy tears. He asked Dayton what he wanted for Christmas, of course. Then he asked if Dayton would help him figure out what his baby brother would want. Santa went behind his chair and pulled out a stethoscope. Santa had Dayton place the stethoscope on my stomach and said, ”OK, now ask him what he’d like!” He let him listen to his brother’s heartbeat. It was the best night — and just what I needed before the next morning.

The next morning, we made our way to the hospital, and everything went pretty smoothly. I wasn’t in labor very long. The midwife did tell me that Aspen would be rushed to the NICU right away, but I think I was still in denial a bit. I thought, “Nope, not my baby. He will be here, and everything will be OK.”

My baby was born that night — exactly one month early on December 6. I remember seeing his face and feeling all of my anxiety, worry, and grief just melt away. He was so beautiful and so perfect. He was in the NICU for 24 days following his birth because his lungs weren’t fully developed yet, and he had some feeding struggles.

This was a difficult time as well, but I had very different emotions than I experienced when I was pregnant. I was so happy my little boy was here. My fear of the unknown was gone at last. I spent every day in his little hospital room. I drew the curtains closed to snuggle with him and watched the time tick by far too quickly. Leaving the hospital every day without my baby was soul-crushing and heart-breaking. I spent countless hours there wishing my baby could come home with me and meet his brother. I feel for any parent who has had a baby in the NICU. My heart goes out to you. It’s such a hard experience to leave your helpless infant alone. I’d go back to the hospital every night just to sleep with him for a few hours. Then I’d 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 the hospital every day.

Still, I was determined to get my baby home.

I tried to nurse him every feeding time when I was there. I bought countless bottles just to find the one he liked so he would learn to eat without his nasogastric (NG) tube. I pumped every three hours so that I wouldn’t lose my supply. The nights when we snuggled, I would remove my baby’s 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 — but I was not. I put so much love and time and education into getting my baby home. It is hard to compare the feelings I had when I found out Aspen would have Trisomy 21 to the feelings I had when I couldn’t take him home with me. I appreciated every little thing — a diaper change, a breastfeed, a bath I could give my baby, buckling him in a car seat, and baby snuggles.

Now, though, my son is crushing milestones! He is saying “bubba,” “da-da,” “Dayton,” and “yay” (Though he still doesn’t say “mom” consistently — wow, kid.) He feeds himself with a spoon, he’s doing so well with walking, and he is the best little dancer. I am proud to be Aspen’s momma, to be able to get a glimpse of Heaven’s magic. I wouldn’t change a single chromosome.

I only wish I could go back to the day when I got the news about my child’s  Down syndrome and give myself a hug. I wish I could cry tears of joy instead of sadness. I spent so much time worrying about the unknown then. My hope is 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 like other babies than he is “different.” Able-bodied babies sometimes end up in the NICU, have heart or lung conditions at first, or take longer to crawl or to walk. Why is it that our children are treated differently by some because of their extra chromosomes?

That’s something I wasn’t expecting because of what I was told about Down syndrome — taking care of Aspen and taking care of my firstborn, Dayton, hasn’t been all that different. There are a few differences, but different is beautiful. We’re all different, and that’s what makes us unique. I wouldn’t change a single chromosome in my son’s body.

It all starts with education. If you have just found out you are going to have a baby with Down syndrome, I urge you to type in #TheLuckyFew or #NothingDownAboutIt into Instagram and look at your feed. Those are the real stories I think you need to see. Not the scare tactics. Not the information in the outdated pamphlets they may hand you at the genetic counselor’s office. Look at those sweet faces, message a mom of a child with Down syndrome, join a Down syndrome group, and get your questions answered there. We have probably all been there.

It’s OK to go through all of the emotions. Give yourself time to process your feelings, but know other moms are here for you. It will likely be an amazing journey. The journey 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, and strong, and I know he will move mountains one day.

Motherhood is an amazing adventure, and while I never quite expected 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 originally appeared on Seeker of Adventure.
Image via contributor.

Originally published: April 11, 2022
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