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. 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, just “Sorry, your child most likely has Down Syndrome. We’ll be doing some tests & 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, & 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 & love him/her no matter what. But, I couldn’t help but feel like I was robbed of a chance to enjoy my pregnancy. My last pregnancy. For back story… I have anxiety. Pretty bad & 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 my baby wouldn’t be born with any health complications. Everyone wants their child to be safe & 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 & with help from adventures. I love trips. They are my vice. Wanderlust, you could say. I hate staying put. Trips helped so so much.
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 got to say, it saved my sanity. 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 okay. I’m a very big sentimental person & Disney is a place I went to as a kid- with my mom & dad. My dad passed away in 2015 from cancer & being able to go somewhere I have memories of us happy together- all together- just helps. It just does. He was a big Harry Potter fan too so going to see Hogwarts at Universal Studios was the cherry on top. It was here on out I decided to take back my control & not let anyone tell me about my child. What he would or wouldn’t do. And I started to try and truly educate myself.
I followed a couple mom’s who had children with Down Syndrome & 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 their 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. 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. The night before I was scheduled to be induced (they had found some fluid in his chest during one of my routine ultrasounds- so they wanted to deliver him early) I took Dayton to the Winter Garden AGlow here in Boise. It was a tradition we did, every year. Go see the botanical garden all decked out in Christmas lights, drink cocoa & visit with Santa. It was perfect. And Santa was amazing. He made me cry. Good tears though haha. He asked Dayton what he wanted for Christmas, of course. Then asked if Dayton would help him figure out what his baby brother would want. He goes behind his chair and pulls out a stethoscope. Santa has Dayton place the part on my stomach & then he says, ”Okay, now ask him what he’d like!” My heart. He let him listen even. 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 honestly. I wasn’t in labor very long. The midwife did prepare 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 okay.”
He was born that night (exactly one month early on December 6th), 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 very different emotions than I experienced while pregnant. I was so happy he was here. The fear of the unknown was gone at last. I spent everyday 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. 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 every day.
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 bubba, dada, Dayton, and bubble (still not mom consistently… wow kid. Wow. Haha.) He feeds himself even though he just barely started getting teeth in, he’s doing so well walking & 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 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 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. Change the pamphlet. Aspen is more alike than he is different. ‘Typical’ babies sometimes end up in the NICU, ‘typical’ babies sometimes have heart issues, 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 #TheLuckyFew or #NothingDownAboutIt 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.
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.