Two years into Down syndrome

You never know when it is going to hit you. A reminder that your child is different and not following a typical path of development. Harper turned two this week and since we had an at-birth diagnosis this also marks two years into our Down syndrome journey. As I reflect over the past two years with Harper, they are marked with joy and love. But it hasn’t been absent of sorrow and heartache. 

Most people welcome their babies into the world with no limitations on their future. Sure in the back of your mind you know that nothing is guaranteed, but you are free to dream up just about anything for your child. When a diagnosis accompanies your baby everything changes. In an instant future dreams are altered and snatched away. That’s what it felt like to receive Harper’s Down syndrome diagnosis. 

The future: from dreading to dreaming

The future still seems scary, even just a few years down the road. My mind can wander down a deep, dark rabbit hole. Will Harper be potty trained? What will school be like? Can I handle advocating for her needs? This spiraling makes it hard to imagine a bright future for her. I don’t know why my tendency is to go negative. Maybe it’s because it feels like the sky’s the limit for most parents when thinking about their two year olds future. The truth I already know is that Harper has to work harder to accomplish things that come easily to others. Just because she will have to work harder, doesn’t mean things are out of her reach. 

As time goes on, I’m learning that Harper’s future is bright. Down syndrome advocates are working hard to share the amazing things people with Down syndrome can accomplish. It restores a lot of hope and excitement for her future. 

The comparison trap

Harper is no longer a baby. Taking her around as a baby and seeing older kids walking, talking and playing was easy to see. Harper was an amazingly chill baby. We could take her anywhere. She actually often exceeded people’s expectations of how a baby should act. But now there is a whole set of little ones younger than her that are doing far more than she does right now. This is challenging. I find myself disappointed that Harper isn’t walking or talking like a typical two year old. 

We all know that comparison is a trap that steals away our joy, but it is so easy to get caught up in it. I have to remind myself that we are on Harper’s timeline and it works for her. Plus, she isn’t bothered one bit by her delays. She is a happy and adventurous little toddler! I’m so proud of Harper’s accomplishments because I know she has to work so much harder for it. It makes each milestone met that much sweeter. 

Living in the moment

When fears about the future or comparison creep in, I go back to what the wise nurse told me right after we received Harper’s diagnosis. “You just have to take it one day at a time.” There is so much truth in this statement. I’ve made it two years already by just taking it one day at a time. I have found that living in the moment there is abundant joy. I hope you too can take a moment to enjoy what is right in front of you. 

Photo credit: Laura E. Agaba