In the early weeks of Harper’s Down syndrome diagnosis, it was as if the rug was pulled out from under my feet. There I was laying on the ground shocked at how I got there. As I started to regain my footing, my mind was numb and preferred to just focus on caring for my baby girl. There were moments that I felt just like any other mom as I fed, changed and held her in my arms. But there was a lurking feeling that I needed to confront the reality of our situation.
I was so hesitant at first to learn about Down syndrome because I wasn’t ready for the world to know that I was a special needs mom. But slowly I would be introduced to the joys of Down syndrome mainly through other families’ antidotes. And it felt better.
Navigating motherhood & Down syndrome
As I became more at peace with the fact that we had a special needs child, I started to envy the families that had typical children first and then had a child with Down syndrome. For some reason I thought that it would have been easier if this diagnosis didn’t accompany my first child. It felt unfair to adjust to motherhood and Down syndrome all in one go.
But now three years later, I can see the unexpected gifts of having Harper join our family first. I’m thankful that this is our story.
From negative to positive
Down syndrome comes with developmental delays, which on the surface seems like a negative thing. And it certainly can be if you only think about the down sides that accompany a developmental delay. But recently as I’ve reflected over the past three years. I’ve realized what a huge gift Harper’s delay in mobility gave us.
Harper didn’t crawl till she was a year old. So for a whole year, I could put Harper down and she would play contently. Which means I could work full time without the need of full time childcare. I got the benefits of both worlds – staying home and working. But I also got the challenges of both, a story for another day. And then it was another year before she started walking. So she was still relatively easy to watch and contain for the first two years.
I didn’t realize how much a blessing this was until her little brother came along. He became mobile on a more typical developmental timeline.
Preparing for the future
My entry into motherhood was anything but typical. An emergency C-section, surprise Down syndrome diagnosis and short NICU stay were quite a lot for this first time mama. But little did I know the craziness that would surround the birth of my second child. But the lessons I quickly learned from being a special needs mom prepared me for what we faced when my son arrived 8 weeks early, required emergency intestinal surgery and stayed in the NICU for 66 days.
The surprising beginning of our parenthood journey taught me that I was not in control and my best path forward was to trust God with my kiddos. I didn’t always understand why all these hard trials happened. But I can confidently say the peace and strength I needed to endure those early motherhood experiences was supernatural.
I can see how God shifted and changed my heart to rely more on Him through Harper’s birth and diagnosis made my son’s entry into this world easier.
A change of perspective
One of the most beautiful things Harper’s diagnosis gave me was a wonderful perspective change. In this world we get caught up so much about what we do and what we accomplish. Having a child that doesn’t meet the world’s standards is at first really devastating. But what I’ve learned is that the world’s standards are what is devastating. Tying our worth to what we accomplish is actually very limiting. I’ve learned to be more concerned with who my children become than what they do. And this perspective is so freeing.
Working through the challenges
Now all of these lessons have been such a gift. But it doesn’t change that having a child with special needs comes with many challenges and difficulties. We have extra doctor appointments and therapies that crowd our schedule. I’ve already had to start navigating the public school system and my child is only 3 years old. Let’s not even talk about potty training. But when facing these challenges, I recall the best advice I got from a sweet nurse who told me I just needed to take it one day at a time. That has been my saving grace when navigating the challenges. A deep breath and staying in the present moment. Because when Harper gently caresses my hand as we snuggle and watch TV together it helps me remember the true gift her presence brings to my life.
