The Woman I've Become Because of My Child With Down Syndrome

When we received our baby’s diagnosis of Down syndrome, one of the first questions Ed and I had was, “What will our baby look like?” We decided to Google “biracial babies with Down syndrome.” Neither of us really knew anyone with Down syndrome and it wasn’t even on our radar, so we had no idea what to expect. There wasn’t much we could find.

I got on Instagram and searched the hashtag #downsyndrome and my view of this new world I faced changed. As I scrolled through the search feed, I found dozens and dozens of families who looked just like us and had a child with Down syndrome. I started sending them to Ed so he could see them, too. I immediately felt this unspoken connection to these families I had never met. I read caption after caption, describing their stories and their journey to the present photo. I clicked on one account after another and soon the number of accounts I was following skyrocketed.

Instagram has provided a place for me to “chat” with other mothers who have experienced the same medical conditions as us. I have grieved over little ones across the country who didn’t make it home after heart surgery. I have received praise and encouragement from strangers who are all too familiar with milestones when Kendall has made even the tiniest progression. And I have found myself reaching out to new mothers, with newly created accounts, to offer words of encouragement and assurance. Instagram has offered an amazing support group for the Down syndrome community.

I recently found myself in Austin, Texas, on a four-day retreat with 24 other moms of kids with Down syndrome. I had only met one of the 24 moms in “real life,” but I felt as though I already knew many of them thanks to the tiny squares of Instagram. We arrived in Austin from all over the country with one goal in common: to relax while celebrating how Down syndrome has brought us all together. This group of mothers was made up of stay at home moms, amazing bloggers and photographers, corporate employees, CEOs and even a super model. We came together from California, Utah, Iowa, Florida, Michigan, New York, Indiana, Texas, Georgia, Pennsylvania and me from North Carolina. We participated in equine therapy, swam in the Texas creek, ate far too many s’mores around the bonfire, created magazine collages (circa middle school), got massages, did yoga and meditation and participated in therapeutic writing. It was easily one of the most memorable trips of my life. The laughing, crying and all around bonding was like nothing else I had ever participated in. Most of us had never met each other, but you would have never known because we were instantly connected by that extra chromosome.

During the therapeutic writing session, we were led by Heather Avis, author of “The Lucky Few.” Heather encouraged us to dig deep and write down questions that we didn’t know the answer to when we received the diagnosis.

My list consisted of the following questions:

1. Will my child live with me forever?

2. Will my child die before me?

3. Will my child be picked on at school?

4. What will my child look like?

5. What will our friends think? Will they still want to be our friends?

These questions were hard to write without feeling guilt and shame for having these thoughts. Then Heather asked us to write down questions that we had and could answer when given the diagnosis. I didn’t have nearly as many questions that I knew the answers to. In fact, I could only come up with two:

1. Can I be a good parent to this child?

2. Will my husband love this child as much as he loves his others?

After developing our list of questions, we were given free time to write a letter to ourselves on the day of diagnosis. For some of us, that was during pregnancy. For others, it was after giving birth, and for the rest it was during the adoption process. I froze. I had a mental block. I had so much to say but I didn’t know how to say it.

I have told countless other “new moms” over the past two years that they will get through the despair. Their feelings of anger and sadness are justified and they will eventually subside. I have told them not to harbor disappointment in themselves for how they felt when they received the diagnosis. However, I don’t think I ever did that for myself. And here, on a ranch in Texas, I was being asked to imagine myself in a puddle of tears, on December 9, 2014, and tell myself that it was OK to have questions that I didn’t know the answer to.

For some reason, I couldn’t bring myself to do it. I was still pushing those feelings down and burying them. I went to sit by the creek with some other moms and stared at the questions I wrote down in my journal, trying to put the first word down on paper. But I didn’t. I allowed myself some time to just think about it. I decided I would write this letter one day soon, but not that day. I wanted to gather my thoughts, make notes and compile all my feelings into a concise letter that I would be proud to share with a new parent.

I am now ready to get it all out and let it go.

So here it is, my letter to my former self:

December 9, 2014
Dear Rachel,

Congratulations! You have been blessed to become the proud mother of a beautiful little boy with Down syndrome. He is going to look just like your first born and have the extraordinary personality of your husband. He will bring so much happiness to
your life and make you smile more than you ever thought was possible.

I know you are scared. I know you are sad. I know you are angry. And, I know you are wondering, “Why me?” Rest assured that your feelings are valid. They are normal and they are expected. I’m not sure you will ever have the answer to the “why me” question, but I can guarantee that you will soon be very thankful. You will experience many more days of “thank you for choosing me” instead.

You will be forced to stretch and grow as a mother, a wife and a friend. Your relationships with your family and friends will become more authentic and have a deeper meaning. You will make more friends than you could even imagine. You will meet plenty of families just like yours and the support that you will feel from your relationships will empower you to be the best mom, wife and friend that you could be.

You will work hard to put together a team of providers and therapists that truly love your son. You will learn to trust others and accept help to maintain your work/life balance, including your full-time job, your volunteer obligations, your family life and
a social life. Your life will change, but it will become what you make it and you are going to make it great.

Your husband will love this child with all his heart. You will melt into a pile of mush all over again when you see the way he looks at his new son. He will help you with diapers and feedings, just as he’s done before, and he will learn to be an advocate for your whole family.

Your first-born child will transform right before your eyes as he learns what Down syndrome means, and he will start to become the person you’ve always hoped he would be: strong, sensitive and always willing to lend a hand. He will be protective of his little
brother and proud of every milestone he achieves. He will teach his peers about being kind and respectful, no matter a person’s abilities. He will truly enjoy playing with his brother and lead him by example.

Yes, your life is about to be very different from the picture you painted in your head. However, you are going to learn how strong you really are. You are going to use your positivity and strength to help countless other new mothers get through their diagnosis. You will be a part of starting an amazing non-profit in your area, specifically for individuals with Down syndrome. You will speak to new parents contemplating termination to help them make informed decisions about their future. The impact your son will have on others will be profound.

Rachel, you and your child are going to change the world.

Although you are scared, angry and sad right now, these feelings will be short lived. You will get through this and you will soon find that you have been chosen to be a part of “The Lucky Few.” Trust me when I tell you, you are the fortunate one.

With never ending love and support,
Rachel
January 1, 2018