Just short of nine months after I married my high school sweetheart, we were welcoming our first child into the world. I had just turned 25, we had been together since my freshman year of high school, and we had our whole lives ahead of us. My pregnancy was mostly uneventful. Everything was “normal” and I had declined all prenatal testing because it honestly wouldn’t have changed the outcome anyway. And I was 24. Why wouldn’t everything be OK?
We weren’t in recovery any longer than 10 minutes, when the doctor came in with a strange look on her face. All I can remember her saying was “we think your child might have Down syndrome” and then everything after that is honestly a blur. I remember crying. My husband was crying. My sister was crying. My mom tried to be strong for us all, but she was fighting back tears. Being so new to the world of Down syndrome, I immediately imagined an adult who wasn’t even remotely able to care for herself. I was so uneducated about the diagnosis that every imaginable worst-case scenario was in my head. I’m still embarrassed at myself for my thoughts in those first few hours after she was born, but as we are about to celebrate her 10th birthday, here is what I wish they would have told me:
Congratulations on the birth of your daughter. Regardless of the fact that she has a diagnosis of Down syndrome, she is a beautiful little girl. While it is understandable that her diagnosis is all you are going to think about for about the next three months, that will eventually fade and she will just become your daughter. I can promise you won’t feel this way forever.
You are going to hear everything in the entire universe that could be wrong with your child at birth. Her heart. Her ears. Her eyes. Her stomach. The whole nine yards. That is the job of your physician. The American Academy of Pediatrics has separate guidelines for babies with Down syndrome that they need to use and follow. It’s so incredibly hard to hear all of that right away, but it’s their job to tell you. Medical terminology will become your second language. You will become an expert in documenting it all and working with a team of people to ensure your child has the best possible outcomes.
You will have the opportunity to educate a lot of people. People will not know what to say when you tell them your child has Down syndrome. Professionals will sometimes use wording that causes you to cringe. Some things may come across insensitive or rude, but try to remember that most people have a kind heart and are trying in their own way to be supportive and helpful. If they say something that offends you, take the opportunity to educate them.. If you don’t, who will?
You are going to meet a tribe of people you didn’t even know existed. An amazing group of parents who have children with Down syndrome is out there waiting for you to reach out. People who have already been through the situation or battle you are facing who would be more than happy to provide advice and support.
Your entire view of the world is about to change. Life with Down syndrome happens at a slower pace and there is a little more unknown. Unknown how they will react to certain things or situations and you will become a master at managing in the moment. You will stop to enjoy things a little more and all those incredible milestones you will document in a baby book will be much more impactful when you know just how hard they worked to get there.
You will learn to live in the moment. Why? Because sometimes it’s too overwhelming to think about it all at once. I’m not suggesting to not have a plan, but know you don’t have to have it all figured out right now. Take deep breaths. Take one day at a time and trust in God’s timing.
You will become an amazing advocate. An advocate not only for your child, but other people who have a similar diagnosis or challenge. The way you raise your child will inspire hope for other new moms who have littles with Down syndrome. You will play an active role in redefining how the world views children with Down syndrome. You will naturally begin to find the positive in situations and no problem will be too big to try and solve.
Last, but not least, your child will accomplish anything he or she sets his or her mind to. You are going to be your child’s inner voice. There may be a time when you are also your child’s only voice. Make sure to set the bar high and challenge everyone else to do the same. As the late Robin Williams said, “No matter what people tell you, words and ideas can change the world.”
First published on Her View From Home.