March 21: World Down Syndrome Day

October 21, 2022 is a day I will always remember. I was about 16.5 weeks pregnant and I had taken our youngest to the zoo one last time before the cold really set in. It was a beautiful overcast day and we had such a nice time together, just the two of us.

We were getting in the car when I got a phone call from my midwife, Mari Stuart. I had done a genetics pre-screening test a few weeks prior and was waiting on the results. So her call wasn’t completely unexpected, but her news was…or at least part of it.

First, she told me that we were having a boy (that was actually the part that surprised me…we had really thought we were going to have a girl), and then she said that we tested positive for Trisomy 21. She was quick to explain that that didn’t mean he for sure had it but that there was a higher chance that he did…about 79%.

The next few weeks were a bit overwhelming as we processed, did research, made plans, and waited for our first anatomy scan. To be honest, though, I never grieved Matthew’s probable diagnosis. For reasons that are difficult to explain, it wasn’t a surprise to me. I had felt for years that we would have a child with some kind of special need, and I felt particularly strong that it would be Down Syndrome. Of course, we were sad that his life would be more challenging than that of other children, and it was also a little overwhelming thinking of the lifelong responsibility we now had for him. 

And even though l had experienced personally the special light, love, and joy that people with Down Syndrome have (I’m talking about you, Ben 🥰) and had a special place in my heart for them; I was still a little concerned how Matthew’s disability would affect our other children.

We are certainly not ones to shy away from giving our kids challenges, but we also wanted to make sure they had a chance to reach their full individual potentials.

We read countless personal stories online and spoke to people we know personally and we could not find a single person whose life wasn’t made better by a sibling (or child) with a disability, particularly Down Syndrome. There was no hint of bitterness, regret, burden, or even wondering what their life would have been like otherwise. They all expressed without hesitation how they wouldn’t have wished their life to be any different.

We knew without a doubt that this little boy was a gift and would be a great blessing to our family.

So I didn’t grieve for Matthew. I knew he would be perfect the way he is. I did grieve for what, at the time, felt like a loss of the little girl that we had expected to join our family. From the time our sweet Ella started talking, she would tell us about her sister who lived in a purple house. And as soon as she learned her first math concepts, she told me that our family had 4 people, but that one day we would have 6 because she was going to have 2 more siblings.

Well, she was right. But it broke my heart that we weren’t able to give our sweet Ella Bella the sister who had been such a part of our family for so long.

And when we told our kids that we were having a boy, there were a few tears (not from Dustin-he was thrilled to have another brother).

But then we told them about his uniqueness and how he would need them and all of us even more than other babies. We explained how things that seemed easy to them would likely be very difficult for him; how he would especially need our love, support, and encouragement; and how we would want to cheer him on and celebrate even the tiniest of accomplishments.

In that moment, the tears were gone. It’s as if she had found a new purpose and she was ready for it. She hasn’t looked back once since.

Ella is the best sister in the world. She takes care of William as if she were his mom, and we know she will be amazing with Matthew, too.

And we are thrilled for William to have a little brother to grow up with and for Dustin to have another little friend to wrestle and explore with.

(I have a feeling that these three boys are going to keep things pretty lively around the house…no doubt with some help from their dad and even their sister . 😆)

So today, we celebrate you, Matthew Lucas- your extra chromosome, and all the extra light, love, and joy you already bring and will continue to bring to our family. We know that you have a lot to teach us, and we are so excited to see all that you will do and be. ⭐️

It’s going to be an adventure, and we cannot wait.
We love you so much! ❤️

The picture below is of the parent information board right inside the NICU. Jana, the parent support coordinator, was so sweet and asked if they could include a picture of Matthew. 🥰

We certainly think he’s pretty perfect. 💙💛

For anyone who wants more information on Down syndrome, here is a great resource.

I love this sweet music video, too.

This is also one of my favorite stories about a little boy with DS.

And this is one of the first videos we showed our kids about two brothers, one with DS.