I am new to this thing called Motherhood. I am only 8 months into our journey with our not so typical homie with an extra chromie.
This was not the journey we were expecting when we found out we were pregnant. This is not the journey we thought we would be on when we found out we were having a boy, and this is not the path we thought we would be on, even the first moment we held our son in our arms. A short 12 hours after birth we were given news that shocked us to our very core. Our chubby, perfect baby had Down Syndrome.
Now this was hard to hear, and hard to believe. It was unexpected and we didn’t know what we were dealing with. We didn’t know what to think, or what to do with this news. It took us a while to really process it, and to accept it, and move forward with a bright and positive outlook.We didn’t know anything about Down Syndrome, other than the physical characteristics that accompanied someone with DS.
All we knew was that we loved our son more than anything else in the world, and we couldn’t wait to watch him grow, his diagnosis didn’t change that.
So here we are navigating a new unexpected world of unknowns. It has been beautiful! Amazing! Wonderful! FULL OF LOVE! But it is not always easy.
I think most parents can admit that it is easy to love their baby. Even when they are fussy, sick, colic or inconsolable. We love them with all our hearts, and we would do anything to make them happy or take their pain away.
That is how we feel too. Cooper is a very happy baby, and the bright spot in our day. He gives us joy and our hearts swell every time we look at him. Even when he is hard to deal with, or we are having a bad day, our love for him is constant.
But that doesn’t mean we don’t get discouraged sometimes.
Every morning when he wakes up, I go to his crib to pick up my sweet baby and start our day. He always greets me with a happy smile, eager to see what type of adventures await him. Most days I look at Cooper, and I see a beautiful, happy, curious, energetic little boy. I don’t see Down Syndrome or even think about his diagnosis.
But some days I can't help but see the minor delays in his development, the physical features that make him different than other children, and the extra effort he must put into things that would be much easier if only he didn’t have that one extra chromosome.
Those days are the tough ones. Those are the ones where I feel guilty for getting discouraged, for doubting his ability to reach the milestones that I see his ‘typical’ peers reaching. Those are the ones where I feel like crying, but hold it together because I cannot allow myself to be sad. The days where I tell myself, “It’s okay. He will get it eventually. It doesn’t matter when. Be patient.”
But I would be lying if I said I didn’t worry, if I didn’t sometimes wish that things would be easier for him. For us.
I was one of those lucky moms, to have friends on maternity leave at the same time as me. One of my friends had her beautiful baby boy only 24 hours before Cooper was born. They were born at the same hospital, on the same floor.
Cooper had a built in best bud.
This was so exciting. It was awesome to have the support of other new moms. Friends to vent to, share with, and get advice from. My friends were amazingly supportive and kind when they heard about Coopers diagnosis, they loved him so much. However, they didn’t know how I was feeling because they couldn’t fully understand what having a child with special needs is like.
While we were all celebrating, and loving on our beautiful babies, and cherishing every moment, I couldn’t help feeling distant from them, and feeling like my son was going to get left behind. I wasn’t focusing on Coopers extra chromosome, but I could see it. I could see the small differences between Cooper and his friends.
My friends and I get together often, for some mom time and to let our babies socialize and play. Even before our babies came along, we would often get together and spend our time chatting away. I always enjoyed these times.
But since Cooper was born, I find myself feeling insecure and slightly dreading these visits. Not because my friends are unsupportive, and not because I don’t love them and their babies, or value their friendship… but because I often leave our visits feeling discouraged about my sons ability to keep up with his peers, and I hate feeling that way.
I love my son!
Just last night I got together with my friends for a charity fundraiser. It was so much fun, and nice to have a night out without my girls, child free. At the end of the night as we were saying goodbye, my friend showed us a couple quick videos of her son. This is my friend whose son is only 24 hours older than Cooper. The videos were of her son crawling for the 1st time, and learning how to say “DaDa.” She was such a proud momma! And I was genuinely happy for her. It was great to see her son doing so good. Such a cute baby, and so smart. But I couldn’t help feeling that twinge of … not jealousy, but worry.
Worry that my baby isn’t doing that yet. Worry that he is being left behind. I am happy for my friends, and want them to keep being proud of their kids, and I want them to continue to share with me. I just hope that one day, I will be completely content with where Cooper is at in his development, and not compare him to his peers.
I know he will do everything, in his time, at his pace. And that is okay. I have accepted this fact, and usually I believe it.
Parents love their children and can’t help but brag on them, and I think we are all guilty of comparing them to other kids. I have heard many conversations between parents, bragging about when their child started walking, or learned their ABC’s, feeling proud when their kid did it first.
It seems to be a race or a competition.
As a parent of a child diagnosed with Down Syndrome, those feelings don’t disappear. We all hope our child will be the best. We all hope our child crawls, talks, walks at an early age. We all want to brag on our kids, and bask in their accomplishments.
Even though I have these moments where I wonder when my son will reach milestones, or question his abilities, I have learned to make the small thing, the BIG things.
I celebrate the moments when he knows to smile at something funny, when he turns to see who is talking to him, or understands which toy is making the music he hears. I rejoice in his strengths. I get excited when I see him reach for his toys, bring his bottle to his mouth, or sit for an extended period of time.
My son is teaching me patience, and teaching me to appreciate EVERY moment. He is making me a better person.
He is showing me that the small things really are the big things. That each moment is precious, and to take a moment to smell the roses.
Life isn’t a race, it is meant for us to enjoy. We all need to slow down and take a moment to look at the bigger picture.
In 8 short months, he has taught me more than I thought possible. His ability to teach me these things is so much more than his disability.
Cooper has taught me to be thankful for every moment. I am so grateful for my son and the lessons I have learned from him.