When Your Child With a Disability Isn't 'Proving Them Wrong'

This is one of those posts where I am sharing vulnerably. I’m opening myself up and letting people know about some of those less than spectacular feelings that hide deep down. Because we need to be real. As a mom of a child with Down syndrome, I need to shout loud about the joy and miracle it is to raise Ivy, but I also need to hold space for the times it is hard. Be gentle with me!

When you have a child with a disability, the majority of medical professionals tend to focus on the negative. Many parents get handed a diagnosis immediately followed by a list of things their child “may never do” or that will be “very delayed.” That is part of why there are so many awesome parent advocates out there in social media land sharing the truth about parenting a child with a disability. We want doctors to share accurate information and all of the positive aspects of having a child with a specific diagnosis.

My daughter Ivy was diagnosed with trisomy 21 or Down syndrome prenatally. We found out when I was about 26 weeks pregnant. After the initial shock and grieving period were over, I dove in headfirst. I devoured blogs written by moms of kiddos with Ds, I joined Facebook groups, I read books, I followed families on Instagram — I wanted to know as much as I could to be prepared. What I found was love, joy and celebration. Yes, there were hard parts, but those seemed so overshadowed by the good.

Something I saw often enough that it stuck with me was the phrase “prove them wrong.” It usually went something like this: “My sweet baby just rolled over for the first time at 3 months, right on track with his typical peers. He is really proving them wrong!” or “Look at this girl sitting up like a champ, meeting her milestones right on time. And they told me she would be so delayed. Look at her proving them wrong!”

I clung to those posts. I looked at them and thought “Yes! Ivy is going to be just like this. We are going to prove everybody wrong about her delays or things she can’t do.”

Fast forward to Ivy’s birth. One of the most amazing organizations I found in the months leading up to July was the Down Syndrome Diagnosis Network (DSDN). They have a mission to connect parents with either a prenatal or birth diagnosis to other parents walking the same journey, and spread accurate information to medical professionals. They have Facebook birth groups for babies born in six month chunks. For example, I am part of the 2018 July-December birth group. This has been beyond helpful as a place to share feelings and experiences others understand. It is also a place to ask questions of moms who may have already experienced a particular doctor’s appointment or test you are about to go through. I loved connecting with other moms going through the same things at the same time as me!

It seemed like the first six months of Ivy’s life were jam packed with appointments, therapies, health struggles and finally surgery. I didn’t have much time to do anything besides survive! Moving into 2019, it seemed like there was finally some time to breathe. Ivy’s health was steady, her feeding tube was helping her gain weight appropriately, and it was time to focus on helping her grow and develop!

Here’s the thing. I knew it was most likely going to take Ivy more time to meet her milestones than her typical peers. That didn’t make it easier when babies who were her age or even younger than her started smiling weeks before we ever got a tiny smile from our girl. But I expected those feelings. It may have taken longer to get that first smile, but when we did, it was incredible. I cried tears of joy and celebrated that moment more than I ever had with Zoe or Eli. It was a trade off — the struggle of waiting longer for something for the incredible moment when it finally came. It was worth it. I made my peace with it and even came to appreciate it.

What I didn’t expect were the feelings I had when other babies Ivy’s age or younger than her with Down syndrome started to meet milestones before her. I’m not proud to share that. But those first times I saw posts from excited moms sharing that their kiddo rocking an extra chromosome had met a certain milestone Ivy still hadn’t, or wasn’t even close to, were like a gut punch. But I feel like it’s important to say that. Because I know I’m not alone. I know there are other mamas who have felt or feel this way.

Something I’ve learned so deeply in this season of life is that there is space for joy and sorrow, happiness and hurt to live side by side. And so while part of me feels the hard part of having a child who is delayed (not only from her typical peers, but also some of her peers with an extra chromosome) it’s OK for that to live beside the much larger part of me that absolutely loves to cheer on the amazing kiddos and mamas I’m connected with. Because it truly is not a competition. Do I wish that right now I could post about how Ivy was “proving them wrong” by meeting milestones on time? Yes. Do I think Ivy is completely perfect exactly the way she is? Also yes. Would I change anything about her or this life we have together? No.

I am realizing that “proving them wrong” isn’t only about milestones. It’s also about the sheer joy these beautiful people bring to our lives, and the fact that their lives are worth living and they are perfect just the way they are! So for every doctor or person who says a life with Down syndrome should be ended before it begins, Ivy is in fact “proving them wrong!”

We are all on our own journey. Our individual paths have so much to teach us if we are willing to learn. I’m learning to slow down and enjoy every moment with my sweet girl and celebrate each small inch stone as she meets them. I know she will get there in her own time, and that is OK. Will the wait be hard? Sometimes, and that is OK. Will I celebrate with exuberance and cry hysterically when she meets those milestones? You can bet on it!