When Alice was born, the doctor told me that “unfortunately” she has Down syndrome and that she was “so sorry.” She told me that Alice wouldn’t do much in life. She told me that her features were very heavily Down syndrome and she didn’t look like us.
What if, instead of saying all of that, she told me the truth? What if she told me that things would be OK, and that this would become our biggest blessing? What if she told me that she had big blue eyes like Tim and Lucy? What if she told me about all of the opportunities available for people with Down syndrome today? What if she showed me these pictures of a happy, normal family living a happy, normal life with their child with Down syndrome?
That’s my goal. I wrote this letter to new parents of a child with Down syndrome. I would have done anything to receive this when Alice was born. My next step is to send this to Down syndrome associations, hospitals and ob-gyn offices across the country to give to the family at the time of diagnosis. This letter is hopeful, positive and true; a far cry from what I heard that day Alice was born.
If you ever receive a Down syndrome diagnosis for your child, please read this. If you ever know someone who does, please send this to them. With an at-birth diagnosis, this has the power to shape a family’s entire feeling about their new (unexpected) life. With a prenatal diagnosis, reading these words could truly mean the difference between life and death.
Here’s my letter…
Dear New Mom and Dad,
I understand that you have a beautiful new baby. This is such exciting news and I am so happy for you.
I also understand that your new baby arrived with an extra 21st chromosome, aka Down syndrome. I know you aren’t there yet, but it’s going to be OK. It’s going to be awesome.
I was just in your shoes one short year ago. At the time, my husband Tim and I had a 2-year-old daughter named Lucy. And we were so excited that we were about to welcome our second child. It was a girl! We named her Alice. She was beautiful. Just a few hours after Alice was born, a doctor told us that she had a few markers for Down syndrome. My heart stopped. I felt like the doctor told me that my entire family had just died. I broke down in tears and sobbed. My husband did the same. We were devastated. Heartbroken. Lost. Completely and totally devastated.
The doctor began pointing out a few of Alice’s traits that were markers for Down syndrome — flat face, small ears, no nasal bone, etc. The entire time, I cried uncontrollably. My mind was racing. I was only 32. I thought Down syndrome only happened to “older moms” or if it “ran in your family” (I was very wrong). I could barely breathe as I realized I didn’t know one thing about Down syndrome. Everything I had ever heard about it was negative. I had never met anyone with Down syndrome, and I thought it was incredibly rare.
In one moment, I had gone from the total bliss of a new baby to the shock and devastation that my new baby had Down syndrome. We were lost.
A few days later, blood work confirmed what we already suspected —Alice had Down syndrome. We were crushed. Scared. Devastated. All over again. I felt so weak. As the tears streamed down my face, I had so many thoughts racing through my head…
“How could this happen? Did I cause this? How can I be expected to take care of this little girl who needs so much? What about Lucy? Poor Lucy. I failed at giving her the sister she deserves. What about my marriage? Poor Tim. This is going to be so stressful on us. What about the big family we planned to have? Surely we won’t be able to have more children because Alice will take up so much of our time, money and energy.”
I had never known anyone with Down syndrome. I didn’t even know that Down syndrome really existed. I had heard about it vaguely a handful of times (usually in a negative way) and I didn’t know anything about it.
I do not play the victim. But for the first time in my life… yes, the first time in my life… I asked, “Why me?”
I did not think I had what it took to raise this child. I had always seen families with children who have special needs, and I thought, “They have what it takes. They know what to do. They’re prepared.” I wasn’t prepared. How was I supposed to take care of this little girl who has a condition I know nothing about? And it’s not a temporary thing…she will have this for the rest of her life. My life will be spent taking care of her because she will have so many additional needs. How much money is this going to cost? We aren’t rich by any means. How can I be the right person for this? I don’t have what it takes. I’m just not equipped.
The first week of Alice’s life is such a blur. Doctors and nurses were in and out of my hospital room, telling me things I had no idea about. I felt so lost. I felt like I would never learn everything I needed to know to give Alice the life she deserved.
I didn’t know how to tell people that Alice had Down syndrome. \Would they realize it from her photos? Did I need to say anything? How would people react? I didn’t want sympathy. I only wanted positivity.
Alice ended up being jaundice and having to stay in the hospital for a week under the blue lights. Our first daughter, Lucy, had done the same thing so we were used to that. When we finally brought Alice home after a week, the fear began to subside a little bit.
With each passing day, I began to realize that Alice was just a baby, just like Lucy had been. She ate every three hours, slept a lot and loved cuddling. She looked adorable in all of Lucy’s old clothes. She had the same big blue eyes that Tim and Lucy have. Lucy adored her.
As time went by, the enormity of the situation seemed less and less. Alice was just like any other baby, but with this extra chromosome that I was frantically trying to learn about. But the more I learned, the more I realized that Down syndrome isn’t a big deal.
Sometimes Down syndrome can come along with health concerns. These can include issues with the heart, thyroid or more. Sometimes — like with Alice — there are no health concerns.
A lot of babies with Down syndrome also have low muscle tone, which can require a little bit of physical therapy when they’re young. Alice is in physical therapy twice a month, and it has helped her reach all of her milestones right on time. Sometimes kids with Down syndrome hit their milestones later than typical kids, and sometimes they don’t. Either way, they will always get there. I was worried that Alice wouldn’t look like us. She does. And your baby will look a lot like you too.
I was worried that we wouldn’t be able to afford everything Alice needs. Because of tons of free programs out there just for kids with Down syndrome, it’s been no problem at all. It won’t be a problem for you either.
I was worried that I wouldn’t be able to learn everything I need to know to take care of Alice. I did. You will too.
There is a lot to learn about Down syndrome when your child surprises you with this extra chromosome. I know it can seem overwhelming. But don’t worry. Take it one day at a time, and trust that you are right where you’re meant to be.
After about a month with Alice, I realized that there’s nothing to be scared of. And little by little, Alice was showing me a world I didn’t know existed before. The world of differences between all of us. She showed me that we’re all created differently, and she opened my eyes to things that I had “seen” my whole life…but never really seen. You’ll know what I mean soon.
Every city has a local Down syndrome association. It’s packed full of moms (just like us!) who also have a child with Down syndrome. There are about 600 moms in every city in the United States who have a child with Down syndrome. I suggest contacting your local Down syndrome association as soon as possible and seeing what meet-ups they have going on. This was a lifesaver for me when Alice was born! It’s a group of the kindest ladies you will ever meet.
If you want to find people like us (Down syndrome mamas), there are tons of us on social media too. On Instagram, search the hashtag #theluckyfew. Yes, “the lucky few” is the name of the moms all over the world who have kids with Down syndrome. Yes, it sounds like crazy talk right now. I get it. But don’t worry…it’ll make sense soon.
In the meantime, here are some great accounts to follow:
@wonderlandmommyblog (that’s me!)
Through these accounts, you’ll see the reality of life as you raise a child with Down syndrome. You’ll see kids with Down syndrome doing anything they want. Because they can. It’s not the helpless life you’re probably envisioning. Nowadays, people with Down syndrome are holding down full-time jobs, living independently, getting married and more. Down syndrome is a far cry from the limiting condition it once was. Your little one with the extra chromosome is going to do big things in this world. And you’re so lucky because you have a front row seat to the show.
Life raising a child with Down syndrome is not a burden. It’s not extra time-consuming or money-consuming. It’s not a sad life or a depressing life. It’s a beautiful life. I promise.
We are lucky to be part of this amazing club. Yes, lucky. I promise you that your tears will fade…and one day (soon), you will look back and wonder why you were crying.
When Alice was born, I asked, “Why me?” I still ask myself that every day, but for a different reason now. I ask, “How in the hell I got so damn lucky to get this beautiful gift?” So why me? I don’t know. Maybe so I could share the reality of life with a child with Down syndrome with you.
Let yourself feel every emotion you’re feeling right now. This is a shock. I get it. But please know that life, although a little different than you envisioned, will be just as good. Just as fulfilling. And a whole lot more rewarding.
Because of your child with Down syndrome, you will see the world with new eyes and you (and those around you) will be forever changed for the better. You will discover strength and perseverance that you didn’t know you had. I promise.
Please reach out any time you need anything. You can email me (email@example.com) or contact me on Instagram (@wonderlandmommyblog).
Welcome to the lucky few! Things are going to be just fine. They’re going to be amazing.