October is Down Syndrome Awareness Month. I hardly knew a thing about Down Syndrome before my daughter came along. I’m sure many people who receive this diagnosis for their child don’t know much about it either.
When we received the news 22 weeks into my pregnancy, just days after Christmas, that our daughter had Down Syndrome, I thought my world was imploding. I had no idea what to expect, or what was in store for us.
I was almost 40 and we wanted a baby so very, very much. There was no way we were going to do anything other than keep her – we decided that the day we found out I was pregnant. This baby was who we were supposed to have, and that’s just how it was meant to be.
But… I. Was. Terrified.
So this is what I would like to say to any woman who has just been told her precious child has Down Syndrome…
Dearest mama, with that sweet baby in your belly…
I can’t pretend I know exactly how you feel. But I understand a lot of it.
Yesterday you found out that your baby has Down Syndrome.
I know this morning is so hard for you. It may even be harder than yesterday.
I remember clearly the first morning after we found out.
I woke up after finally falling asleep for a few hours and had about 2 seconds of consciousness before the news I had received the day before hit me all over again, almost like for the first time.
I felt like I had been kicked in the stomach.
Like the walls were closing in.
Like someone was squeezing my heart in a vice.
And I’m not going to sugarcoat it: I had the same feeling for many mornings after.
But I want to share this with you, for what it is worth:
Each day it hurt a little bit less.
Yes, there were spikes of pain when some incident triggered it. Lots of them.
But overall, it got less and less and less.
On the day of our diagnosis, I said to my husband “What are we going to do?!”
He simply said,
“We are going to LOVE her.
Above all else, she is a BABY. She will eat, sleep, poop, pee, smile, giggle, laugh, and cry – hopefully not too much!
And we will deal with whatever else comes along, as it comes along.
But let’s not guess, or imagine bad things for her. Let’s wait and see.”
And that’s what we did.
And as the days then weeks then months passed I found that,
my pain, which had been overwhelming and consuming and I thought would never ever go away decreased,
while my love and hopes and excitement to meet my Vallyn increased until I simply felt like I could not wait another single moment to hold her in my arms!!!
After Vallyn was born, they laid her on my chest and my first thought was “yes, she does have Down Syndrome – I can see it a little bit”.
But almost before that thought processed in my head another voice inside shouted
“YES! This is MY DAUGHTER and I finally get to see her and hold her and tell her how I love her so much! Thank you, thank you, thank you!”
And she turned her head and looked straight into my eyes and I couldn’t believe the wave of love and peace that washed over me.
And now I find that every single morning since she was born, without fail,
no matter how tired I am,
instead of feeling that awful pain of those first few months after diagnosis,
I look down into that crib and I see her looking up at me, smiling, and
it feels like the best Christmas morning ever.
And I can’t believe that on the day the doctor told me my daughter has Down Syndrome, I thought my life was over and would never be good again.
I was so, so very wrong.
Now, sweet mama, I’m not saying everything will be perfect. (Remember, no sugar coating.)
It won’t be – not with ANY kid – Down Syndrome or no Down Syndrome.
I’m saying honestly to you that there will be times that are scary and hard and frustrating.
But there will also be times when you feel you can take on the world.
There will be tears of both joy and sorrow.
There will be ups and downs.
There will be so much laughter, and SO MUCH LOVE.
Please don’t feel like you have to give up having dreams for your child.
Because you don’t – you may just have to change them a little.
And they may or may not come true. So what?! Make some new ones.
I never could have dreamed that Vallyn would be as truly amazing as she is.
But she conquered a heart surgery at five weeks old.
And it took a while, but she’s walking, practically running now.
She has hiked on her own two feet almost a mile around a lake at 9,400 feet.
She has been in four Scottish Highland Festival parades and brought joy and smiles to those along the way, waving and blowing kisses and causing people to run into the street with their cameras to get her picture as she rides by.
She got through having the flu, RSV, and pneumonia all at once, and with a smile on her face!
She has ridden ponies.
She has been a flowergirl in a wedding.
She has been to the Grand Canyon.
She has splashed with unadulterated joy in alpine lakes.
She has spread her infectious smile to so many people; at the grocery store, doctors offices, and pretty much everywhere we go.
She goes to preschool, plays with her cousins and friends, has been to both coasts, had multiple photos in a book on physical therapy for children with Down Syndrome, has met Miss Colorado (twice!), met government figures and important researchers, and had the most liked photo ever on the Rocky Mountain National Park Facebook page.
She has fought so hard her entire life – to be strong, to learn, to overcome. Her strength and determination and stubbornness blow me away on a daily basis.
SHE IS MY HERO.
And she is a wonderful, caring, fun, silly, LOVING big sister.
And she’s not even three and a half!
I had no idea that day so long ago that she would do all these things.
And I can’t WAIT to see what else she can do!!!
So…dear mama, I don’t know your exact circumstances, thoughts, beliefs, or feelings.
Or exactly what challenges you and your sweet baby will face.
Or what your baby may or may not eventually be able to do.
What I do know is that this is scary and it hurts and it is not what you expected.
And you are allowed to feel all the emotions you are feeling – please don’t believe otherwise and don’t stuff those feelings in.
Get them out of you, as much as you can, so that when that baby gets here, all that’s left is
LOVE and HOPE.
I can tell you that ‘it gets easier’ and you may feel like punching me – I might if I were you.
But please, please don’t give up on this baby. Or yourself. Ever.
I beg you – don’t place limitations on this child you haven’t gotten to meet yet.
Instead, choose to picture this child doing wonderful and amazing things.
Being healthy. Brave. And fighting hard.
And being so full of life, and joy, and LOVE that you will be utterly floored.
Please celebrate the little victories as well as the big ones.
(Often those that seem ‘little’ to others are GIGANTIC to us.)
Know that while your family may not fit into the “typical” or “normal”, what you have will become your normal, and it will just be what it is. (Plus, after Vallyn’s diagnosis a friend said to me “Well, normal is boring anyway!”)
When you feel ready, please reach out to other mamas who are going through what you are.
(I cannot emphasize this enough!)
They will be a source of strength, knowledge, laughter, tears and support.
Please also contact your local Down Syndrome organization. They can help connect you with resources and with other families. (That’s how I found my other mamas!)
I have not forgotten all the times along this path that have been so hard. And I’m sure there will be more hard times for us in the future.
But I do know where I am now and I am so thankful.
Brave mama, you are so strong.
You can do this.
It may not feel like that now and you may feel beat up, but I know you will survive.
And please know that you are being trusted with, and gifted with, a very special child.
So give that little baby in your tummy a love pat, think good thoughts, and don’t stop dreaming!
Because dreams can come true. Even dreams we didn’t know we had.
With much love and MANY CONGRATULATIONS on your baby,
A mama with a beautiful girl that has Down Syndrome, and who I wouldn’t trade for the world
Resources on Down Syndrome:
Down Syndrome Pregnancy
Support for Parents Preparing for the Birth of Child with Down Syndrome
National Down Syndrome Society
National Down Syndrome Congress
Global Down Syndrome Foundation
Rocky Mountain Down Syndrome Association
You can find more of Cassie’s writing at Expectant…