When Your Kid Has Down Syndrome

March 26, 2018


Unlike many other parents who have a child with Down Syndrome (or other special needs), we were never shocked by the news. We always knew our son had Down Syndrome. Because we adopted Mikha--chose Mikha--there was no processing after an "abnormal" ultrasound. There was no surprise. At least not before Mikha arrived. 


To say we didn’t understand what parenting a child with special needs would be like is a huge understatement. Don’t get me wrong. We knew adopting Mikha was part of our calling in life, a part of our family’s story waiting to be written. We just had zero clue what was going to fill the pages of that story. I had grown up around individuals with special needs, as my mom worked in special education. I had even worked a couple summers as a special education assistant myself. Down syndrome didn’t scare me. So when Shea and I felt the calling to adopt a child with Down Syndrome, I wasn’t afraid. I would be lying, however, if I told you that my confidence continued for long. In fact, the very first time I met Mikha in person, the first time I held him (despite the sweet, outwardly peaceful video footage of that moment), I was terrified inside. He was so small. So pale. He’d already had 2 heart surgeries. And he had Down Syndrome. Even though I knew that when we started the adoption process, it really hadn’t sunk in until that moment. I had no idea how I was going to care for him. He was just 4 months younger than our Lauryn (who was about to turn two at that time), yet he looked and acted like a 2 month old baby. After just 5 weeks of “knowing” our son, which meant seeing him twice a day for a couple hours at the orphanage where he had lived since birth, we were legally his parents and got to take him “home.”


Because of the adoption process, this meant taking him to the apartment where we were living in in Ukraine. The first day of being “home” with Mikha was even scarier than that first meeting. I was now officially responsible for him, for his health and wellbeing, for his life. And then, just as we were about to leave Ukraine and make our way back to the U.S., we had an appointment that I’ll never forget. It was Mikha’s medical exam that needed to be completed prior to our exit interview at the US Consulate in Kiev. Shea and I met with the physician and she informed us that we were very foolish to adopt such a sick child. He had a bad heart, a bad liver, bad lungs and Down Syndrome. She said this with a look of disgust spread across her face; that look then turned to seriousness as she continued to inform us that he would certainly die very soon. I was a mix between shocked, petrified and angry. Sure we understood he needed to see a cardiologist when we got back to the U.S. Sure we knew that he had some other health challenges due to his living situation in institutional care. Of course we knew he had Down Syndrome. But, death? That had never crossed my mind before she said it.


During the days, weeks and months that followed, I couldn’t erase the words she had spoken about Mikha, about our son. I found myself constantly checking him to make sure he was breathing, putting my ear to his chest to be sure his heart was beating. I lived moment by moment in prayer, begging God to help me know what to do for Mikha, to help me keep him alive. Then, just four months after arriving back in Iowa, I was forced to face that fear head-on as I handed my child over to an anesthesiologist who was going to put Mikha under for his third open heart surgery. We were at one of the best hospitals in the world, and the surgeon was ranked in the top 10 in the country for pediatric cardiology. I knew Mikha was in good hands. Yet, every minute that ticked by as we waited for word from the surgeon was excruciating. When someone finally came out to talk to us my stomach dropped, until I saw his face light up. It was good news. The surgery had gone well. The repairs were all done flawlessly. Mikha was being woken up. However, my heart wasn’t prepared for what it feels like to see your child after he’s had his chest cut open. Wires everywhere, an IV, a breathing tube, machines beeping, lights flashing. Even now remembering what that looked like—what it felt like—I can’t help but weep. It is such a horrible feeling to watch your child in pain and know you can’t fix it. Mikha was mad at me for weeks after surgery, which was even more heartbreaking. He wouldn’t even look at me. It was as if he thought I caused the pain, as if I decided to make him endure that.


Thankfully Mikha recovered incredibly well from the surgery. To be honest, I felt like we had made it. We were over the hump as far as challenges. Little did I know the heart surgery was just the beginning. Now I know every parent has challenges with their children, and I certainly know our challenges have been nothing like what so many others have lived through. However, I’m learning that being mom to a kiddo with special needs is not the same experience as being mom to “typically functioning” children. Early on in our parenting journey with Mikha, a wise person told us to prepare our hearts because oftentimes when parenting a special needs child you take one step forward, followed by three steps back. Milestones tend to be reached at a much slower pace, if ever. Communication can be a challenge. Finding appropriate ways to discipline an even bigger challenge. Emotional and social skills often develop quite differently. Medical appointments and needs can quickly consume your days. There are special diets, medications and/or supplements, and therapies that need to fit into life.


Parenting is exhausting across the board. By far the hardest job ever. Yet (as a mom with “typically functioning” children and a special needs child) I can say that special needs parenting is an entirely different kind of exhausting—imagine having a newborn stay a newborn for 12 months or 24 months, a toddler stay in the “terrible twos” for 4 years, or (in some cases) having a child who will never develop past that newborn phase or toddler phase. For Mikha, his developmental peak remains an unknown. Mikha does great in school. He’s active, happy, healthy, bright and social. He truly is doing amazing. Yet, despite his incredible progress this year, it has been a year of mixed emotions for me as I have watched his younger sister (3 years younger than him) pass him in gross motor skills, fine motor skills, communication skills, social skills and now in most academic areas. I often wonder if he knows. I wonder if this frustrates him. If he has started to notice that he is different than his peers? It is so hard as his mom not to attempt to push him beyond what he’s capable of. We all want our children to reach their highest potential. We want to see them thriving. One of the unique challenges of special needs parenting is having to figure out what that potential is without being able to communicate with your child about it, and without being able to use the milestone charts created for “typically functioning” children.


Having a kiddo with Down Syndrome (and some additional special needs, including Celiac Disease) has been one of my greatest honors in life, but also one of my greatest challenges. My pride has been wrecked more times than I can count. I’ve reacted in ways I wish I hadn’t over and over again. Uncomfortable and/or embarrassing incidents in public have become just part of life. In fact (in case you need a laugh) Mikha gave his rendition of “Thunder from Down Under” (google it if you don’t know what I’m talking about) last week during the 2nd Grade Musical Dress Rehearsal at Clear Creek. (Don’t worry we safety pinned his pants to his undershirt using 8 pins for the real performance.) I’ve had to learn how to be flexible. I’ve had to relinquish control. I’ve had to learn to breathe and just laugh. I’ve had to learn how to create safe spaces and healthy boundaries. I’ve had to accept that my house needs to have its windows boarded shut (if you don’t know why, ask me sometime about what Mikha likes to do with 2nd story windows). I’ve had to learn that my nice dishes will get broken, and my couch, walls, floors, clothes and pretty much anything exposed to Mikha, will likely be written on, peed on, or ripped. I’ve had to pay more library fees than I’m comfortable admitting to. I’ve had to completely change the way our family eats. I’ve washed more loads of laundry than I ever imagined was possible. I’ve been bitten, slapped, scratched, and had my hair pulled out by my child because he was overstimulated, frustrated or scared and was unable to find a different way to communicate with me. I’ve had to attempt to help my other children make sense of why there are things we can’t do and places we can’t go because it just won’t work for everyone in the family. I’ve had to get comfortable saying no. I’ve had to learn how to be an advocate for my child. Most of all I’ve had to learn not to care what others think of me, my family, my parenting. I’ve had to truly rely on God to provide enough love for me to give, to depend on God for my joy, for peace in storms, for patience that has no end, for kind words, for goodness, for faithfulness, for gentleness and for self control. I remind myself often that the joy of the Lord is my strength. This has become a mantra of sorts for me. I meditate on it throughout my day (and often by night).


I don’t share any of this to evoke sympathy or concern from anyone. I share because the reality for special needs parents is likely not the same as your reality (unless of course you’re parenting a child with special needs/medical needs yourself). I share to encourage us all to be more compassionate and less judgmental in our daily lives. When the child in the grocery checkout throws a tantrum or hits his mom, when the second grader standing next to your child during the school program won’t stop touching your kid's hair, when you waitress for a family with a whole list of allergy needs, when you are attending a play and a child nearby is moaning or clapping excessively loud—show compassion, not pity or annoyance or anger. Most likely that child in the grocery line is overstimulated. That child touching your kid’s hair doesn’t understand appropriate stage behavior and is curious about the blue spikes. That child you’re waiting on would get violently ill if care isn’t taken with his food order. That family at the play just might be trying for the first time in 7 years to spend a special evening out all together. 


This past week, March 21st, marked World Down Syndrome Day. Each year around this day I take time to reflect on my experience as Mikha’s mom—the joys, the challenges, the unknowns. What I know this year is that Down Syndrome, although it defines part of Mikha’s genetics, no longer defines who Mikha is to me. To me, Mikha is a strong (soon to be stronger than me, so watch out 😊), funny, loving, intelligent 8 year old boy who loves trains, Poppy from Trolls, Minion Rush on iPad, his Maui shirt (from the Moana movie), Boss Baby, reading books (especially The Little Engine that Could), playing Mousetrap with grandpa, eating dairy free ice cream, dumping sand out from the sandbox with dump trucks, riding in the tractor with Grandpa Coleman, eating chicken wings clean to the bone, spinning in circles as fast as he can, giving hugs, and entertaining his sisters with his famous eyebrow raise, just to name a few.


I truly am a better person because I am Mikha’s mom, and I can’t imagine my life without him, extra chromosome and all.


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