‘If we were THAT ready to adopt, why not a different baby in need of a family?’: Mom details Down Syndrome adoption journey

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“My name is Bethany, and I live in Southern Wisconsin with my husband, Paul, and our six children, ranging in age from almost 12 years old to just over 7 months. Trying to get through the grocery store with six kiddos in tow already draws attention, with numerous, ‘Looks like you’ve got your hands full!’ comments. But our family is unique in more ways than may be obvious to the casual observer trying to do quick math as we squeeze past them on our way to the cereal aisle. My two youngest boys joined our family via adoption, and each of them has a disability. 

Troy, my almost-4-year-old, has Down syndrome, and Owen, my 7-month-old, has Koolen-de Vries syndrome. Before you dash off to do a quick Google search of ‘What the heck is Koolen-de Vries syndrome?’, allow me to describe it. In a nutshell, Koolen-de Vries syndrome is a partial deletion of the 17th chromosome. So, since Down syndrome is an extra copy of one chromosome, and Koolen-de Vries syndrome is a (partial) deletion of another, we are actually a chromosomally-neutral family. 

Although we have adopted twice now, and each experience was equally amazing, I’m going to focus on our first adoption in this story. We had so much to learn about ourselves, adoption, and special needs, and so much of that learning was done on our first adoption journey.

adoptive parents with their baby boy with Down Syndrome
Courtesy of Bethany M.

Our Path To Adoption

Paul and I came to the decision to pursue a special needs adoption via a series of baby steps. We met way back in 1999, when I was 9 years old. Our parents were friends and attended the same church, but I honestly thought he was super boring, and since he was a 14-year-old teen at the time, a 9-year-old little girl with huge glasses didn’t come close to being on his radar. It wasn’t till we were both much older and (hopefully) wiser, in the magical summer of 2009, that we saw each other in a whole new light. He asked me out in June, we got engaged in September, and were married that December. Looking back, that was a very fast relationship, but we knew what we wanted and didn’t see much sense in beating about the bush. 

Paul is a very logical being, and while he always considered adoption to be a ‘good thing,’ he never even considered it as something he would pursue. That probably had something to do with the fact he was originally determined to be a lifelong bachelor… but obviously that plan failed.

Dad sitting on couch with two sons reading a book
Courtesy of Bethany M.

I, on the other hand, can’t remember a time when I didn’t want to adopt. When I was quite young, my grandma gave me an American Girl catalog and told me I could pick out a Bitty Baby doll, and she would buy it for me. I chose a baby doll of a different ethnicity to myself, and would play ‘adoption’ as I rescued this poor baby from horrible 1920’s style orphanages, saved her from floating away, Moses-style, down a raging river, or found her abandoned on my doorstep. But, while I always hoped adoption would be in my future, I always thought about it in a vague, ‘maybe someday’ sense. 

The ‘triggering event’ that got us talking about adoption is actually rather random. I heard through the grapevine that a young woman I had known for a time when she and I were children was incarcerated, pregnant, and would be unable to parent her child once he was born. Picturing a tiny baby with factors making him potentially hard to place with family, to then be placed in the foster care system instead, I frantically called Paul and asked him if we could find out if we could be considered as this baby’s family.

He said yes, and I set out to find out more information. It turns out I never had to worry, and this baby boy already had a family joyfully waiting to adopt him. But that whole situation got us thinking… if we were THAT ready to adopt the baby of someone I hadn’t had any connection to since I was a child, why not a different baby, equally in need of a family? What made one baby more worthy than another? Our Christian faith has always been very important to us, and we both believe every human life is created by God and has intrinsic value. So what was stopping us from acting on that belief and giving a child in need of a family the love and stability we knew we had to offer? So, the seed of adoption was planted in our hearts and minds. 

Deciding On Special Needs Adoption

If anyone reading this has ever considered adoption, you know the sheer magnitude of options is overwhelming. Should we pursue the international adoption of a toddler? What about travel times, potential multiple trips, and what would that look like for our four young kids we would be leaving at home? Although the need for international adoptive families is great, that option never felt quite right for our family. 

siblings sitting with adopted baby brother
Courtesy of Bethany M.

Domestic infant? We could see there was no shortage of families willing to wait years for a ‘healthy baby,’ but what about the babies with a diagnosis? Could we be their family? Did we have what a baby with special needs would need? If so, what special needs could we handle? At first, and this is funny to me now, Down syndrome seemed ‘too scary.’ Surely only superhero parents would have what it takes to go down that road, right? But one day, while on a special needs adoption website, I decided to check the little box that said ‘Down syndrome,’ and I started reading. The more I read, the more I could see I’d had many false assumptions about Down syndrome, and the amazing people who have it. 

I started following celebrities with Down syndrome online, as well as normal families with a child with Down syndrome, and basically learned everything I could to then burst into whatever room Paul was in and share whatever I had just discovered with him. I remember how unreasonably excited I got when I learned people with Down syndrome have a higher chance of having Celiac disease. My dad and sister both have that, and I grew up learning how to cook gluten-free my whole life! I could DO this! …but how? 

I will never forget stumbling on the National Down Syndrome Adoption Network’s website during one of my research sessions. I believe I may have squealed with joy. It felt like coming home! A network of real people who walk through the entire adoption process with you? Who value and support mothers who have received a diagnosis of Down syndrome for their child while they decide if they want to parent or make an adoption plan, and offer real support and help either way? Yes, please! I got into contact with the director of the NDSAN, Stephanie, and it was through many emails and phone conversations with her that we gained the confidence we needed to finally take the steps to complete a home study and get on the NDSAN’s registry. 

toddler with down syndrome sits holding teddy bear
Courtesy of Bethany M.

The Adoption Process

Now, all this time, I had thought the home study part of adoption would be the hard part. After all, there’s mountains of paperwork to work through, seminars to attend, educational materials to read, and a stranger comes into your house and pokes around, judging your closet organization and how you fold your fitted sheets while asking you deeply personal questions, right? I was so very wrong. Almost as soon as our social worker walked through our door, I felt a wave of relief, like a weight lifted. She wasn’t there to judge us or bully us; she was really and truly on our side, there to help us prepare for a new chapter in our life, and help us think realistically through what life as adoptive parents of a child with disabilities would look like. 

three brothers sitting together looking happy
Courtesy of Bethany M.

Finally, the day came. We had crossed every ‘t,’ dotted every ‘i,’ and child-proofed harder than I ever had for any of our four existing children. Our profile was officially ‘live’ on the NDSAN registry, ready to be shown to a birthmother as an option as she made an adoption plan. Sounds easy, right? Again, I was so wrong. 

Being a hopeful adoptive family, waiting to be chosen by a stranger to be given the immense privilege of being her child’s family, is a feeling hard to put into words. The self-talk in my head was something along the lines of, ‘What makes you think you will ever be chosen? You think you’re so special? You think someone who doesn’t even know you will choose YOU to be their baby’s mother? Pathetic.’ 

The weeks stretched on. Our profile was presented twice. One time, the baby sadly passed away before a family was chosen, and the second time, another family was picked. During these months, my emotions were very near the surface. I felt raw and vulnerable, like I had exposed the deepest wish of my heart, and complete strangers were going to judge if I was worthy. I would be going about my day, washing dishes or folding my laundry, and I would feel a stabbing pain in my chest, like a deep grief over missing a loved one. It truly felt like I was losing my mind. How could I miss a baby I had never met, and who might not even exist? But I felt like my baby was out there, and I had no idea where they were, or if they were safe, and there was nothing I could do about it. I vividly remember sitting in church one Sunday, and looking up to see a mother holding her baby in the seat in front of me. I started crying as I was overwhelmed with jealousy, not that she had a baby and I didn’t, but that she knew right where her baby was. 

Those were the longest months of my life. But now, looking back, I wouldn’t spare myself that hardship. There are growing pains when a baby is growing in your womb, and there are growing pains when a child is growing in your heart as well. In those months, in the suffering of waiting for my baby, my faith was deepened in a way only ‘trial by fire’ can accomplish, and the negative self-talk in my head was stifled by my longing for my baby and my readiness to be his or her mommy. 

adoptive parents holding their baby boy with Down Syndrome
Courtesy of Bethany M.

On July 5th, 2018, I was driving the kids home from the park when my phone rang. We had submitted our profile again, this time for a baby boy due in October, but over a week had passed, and I had other things on my mind. My heart jumped into my throat when I saw Stephanie’s name on my caller ID, and I pulled over. It couldn’t be real, she had to be calling for some other reason, to update our profile or clarify something… but her voice on the other end was saying, ‘Congratulations, Mama!’ I truly cannot remember another word of that life-changing conversation. My head was buzzing. I remember being very loud and saying, ‘OK! OH MY GOODNESS! OK!’ on a loop, but that’s about it. 

Going To Meet Our Baby

The next few months were filled to the brim with preparations and fundraising, but I knew where my baby was, and I knew he was safe. We had started to get to know his birth mother via phone calls and texts, and decided to travel a week before the due date to have a chance to meet in person before it was ‘go time.’ So, on October 14th, our whole family departed to Florida, but only after my 4-year-old daughter informed everyone in the airport we were, ‘Goin’ to FLORIDA to ‘dopt a BABY!’ 

siblings gather around adopted brother with Down Syndrome
Courtesy of Bethany M.

Troy’s birth mother had looked at a number of family profiles, and one of the reasons she chose ours was because she wanted her baby to have brothers and sisters. Because this was such a huge factor in why she chose us to be his family, and also because we weren’t sure how long we would need to stay in FL, we chose to take the whole family. At the time, they were 8, 6, 4, and 2. Adults can pass themselves off as whatever they want in phone calls or when writing a profile, but children are honest. We wanted her to have a chance to see the abundance of love we had to offer as a family, and who better to demonstrate that than our kids? 

We landed, and had a chance to settle in and meet both of his birth parents. I felt an instant connection to his birth mother. We were, and are, the two women on earth who love him the most, so how could we not also care about each other? And when Troy was finally born via emergency C-section on October 24th, I was holding her hand as we welcomed our beautiful boy into the world. 

adoptive dad holding baby boy with Down Syndrome in the hospital
Courtesy of Bethany M.
adoptive mom holds baby boy with Down Syndrome
Courtesy of Bethany M.

It was breathtaking, it was amazing, and it was a blessing I will forever be thankful for, but it wasn’t remotely like my days of playing adoption with my Bitty Baby doll. Troy did not need rescuing. His birth mother loved, and loves, him with her whole being. The decision she made, to place him with us, was made entirely because of her love for him. 

Troy was whisked down to the NICU shortly after being born, and I followed. He was very pale and was breathing very slowly. A swarm of medical staff surrounded him, speaking medical-speak, attaching wires, putting an IV in the top of his perfect little head, and connecting a blood transfusion. When he was stable, during a quiet moment, I took a picture. I was afraid he was going to die, and Paul hadn’t even seen him yet. If Paul wasn’t going to get to meet him, I at least wanted to have a picture of him alive. But taking that picture, and knowing that was the reason I was taking it, was so hard. It took me a long time to be able to look at it without crying. 

baby boy with Down Syndrome in the NICU
Courtesy of Bethany M.

Thankfully, however, even though that was a terrifying situation for a NICU newbie like me, as soon as he got the treatment he needed, he was looking and breathing much better. He did end up needing a 10 day NICU stay because he was having trouble keeping his oxygen levels up on his own, which wasn’t fun, but also wasn’t nearly as long as many families have had to endure. 

Once Troy was moved to a private NICU room, at about three days old, I stayed in his room with him. His birth mother was pumping breastmilk for him, and visited almost every day. Paul and the kids visited when they could, but I spent a lot of time alone, wondering if I would miss rounds if I dashed out to find food, and wishing coffee was allowed in the NICU. (Spoiler alert: it wasn’t.) However, I had plenty of time to bond with my son, to hold him, learn his cues, and just stare at him. I was in awe I got to be his mother. It didn’t seem like it could be real, yet here he was. 

family gathered in hospital room with baby boy
Courtesy of Bethany M.

Bringing Him Home

When we finally got approved to fly home on oxygen, and worked out the difficulties with getting medical equipment across state lines, and learned how to operate everything, we were finally ready to go HOME! And let me tell you, flying home with 5 kids aged 8 and under with an infant fresh out of the NICU on oxygen was CRAZY. Between that trip home and the whole NICU experience, I came away with a higher regard for what I am capable of. There’s a lot of areas I may not be the best at, but darnit, I can do hard things!

Baby with Down Syndrome on flight with oxygen
Courtesy of Bethany M.

This October, Troy will be 4 years old. He’s sweet, silly, and expressive, and he gives the BEST hugs. He loves his family, music, and ice cream. He doesn’t say many words yet, but that doesn’t stop him from communicating, and his smile when his daddy comes home lights up a room. He works so hard at milestones that typically-developing kids breeze through. So, when he finally masters a skill he’s been working on for weeks, I am amazed. And then, when my typically-developing niece accomplishes the same skill in a matter of days, I am also amazed.

big sister playing with her younger brother with Down Syndrome
Courtesy of Bethany M.

I see the beauty of personhood and humanity in a way that I never really saw before. What makes someone valuable as a person? I’ll give you a hint: having the socially acceptable number of chromosomes isn’t the answer. We have learned so much from this little boy, and it was because of him and how he’s reshaped our view on what the word ‘disability’ means and doesn’t mean, that we were able to say yes when presented with the option to adopt again, this time a baby with a disability we’d never even heard of… but that’s a whole other story.”

six siblings lie next to each other on bed laughing
Courtesy of Bethany M.
Family of eight sitting together on bench
Courtesy of Bethany M.

This story was submitted to Love What Matters by Bethany M. Check out the amazing work NDSAN does here.  Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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‘Could I be his family?’ I couldn’t stand how he was still waiting. Sometimes I’d just cry for him. He needed a family.’: Single woman pursues special needs adoption

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