Meet Simon. A handsome little fellow who is changing the face of beauty. (And OH MY GOODNESS. . . can you even handle that little outfit he’s wearing??)

Words from Simon’s mom-

We had Simon via c-section after planning on a VBAC the entire pregnancy. It’s ironic how in the end how he got out didn’t matter one bit. I didn’t notice the extra checks of his hips or whispering. We were excitedly enjoying our first hours together, introducing him to his sister and family. Toward the end of the day he had an oxygen dip and looked blue, that caused concerns and we let them keep him in the nursery in the night between feeds. I was concerned but not even that worried, I thought it was like they said, he was a c-section baby with extra gunk in his lungs, he’d be fine. It was 4am when the head pediatrician came in and told us they suspected his continued dips were due to his having Down Syndrome, and that they might be caused by a heart defect. She then looked at us and said “that seems like a surprise to you” It was one of those moments where all the air leaves the room, leaves your lungs, and time stops. It’s hard to describe the thoughts that swirl inside your mind but not one of them was positive. While our minds didn’t go to thoughts of institutions, with our limited experience, our fears didn’t fall much short of that. We honestly had no idea what was in store for our life but his diagnosis fell to the side as we focused on what we needed to do to get him home. After 10 days in the NICU where he passed every test, no heart defect he just seemed to like to let his O2 drop two points lower than acceptable. We finally brought him home where we began to fall madly in love. At my weaker moments in those early days I just had to watch my daughter with him. This was all she knew about having a brother and she adored him, she watched him with such wonder, purely without judgment, he was everything she anticipated and more. I found solace in the fact that for her Down Syndrome would never mean what it meant for us on that first day.

Slowly and all at once everything changed for me. I had always felt I had good priorities, values and goals in life. That I was an open and friendly individual, but having Simon has changed so much and has given me a more beautiful perspective on life. I’ll be honest, before him I’d most likely avoid an individual who made me uncomfortable, I’d pity a mother with a medically difficult or disabled child, how do they do it? Through my experiences I realized we never know what to say in the beginning, no one does, but it doesn’t mean you have to stay silent, or avoid eye contact. You can give a smile and a wave and an acknowledgment that you see that person, that family and their contribution to our society. That tiny gesture is often enough. Now, I don’t pity other parents and think “I don’t know how they do that” or “I could never do that”, I know that you can do absolutely anything when you love your child. Now I smile and wave, now I look and it’s like I can actually see this beautiful tangible love float between them.  

This is only part of how Simon has enriched my life. He is pure joy in chubby human form, his smile is infectious and only pales in comparison to his laugh. His development is delayed as we expected but it feels differently than I thought it would. When you read your child might not walk until 3 you think how awful. But when you watch them meticulously building skills, growing stronger, more coordination you swell with incredible pride, he has farther to go and he’ll get there. He is meticulously building a masterpiece, and those take time. 

The joys and celebrations are almost constant, but so is the nagging worry, about his health, his development and his future. We actively work hard on all fronts but the most difficult to cope with is his future. Will he be loved and appreciated as the beautiful soul that he is? Will he be bullied, discriminated against and only be seen by his limitations, by his differences? It doesn’t surprise me that it’s his future that scares me the most, it’s the least in my control! I am learning to let that go. It’s something I’ve always had to work on, and now having him I wonder if that lesson will finally stick, it’s another way he’s molding me into a better person and mother. 

While I can accept that I won’t always be able to protect him, I cannot let go of the desire to shape society into a more accepting and friendly version of itself. Not just for Simon and others who live on the fringes of mainstream society but for all of us. When you create more space in your life for the imperfect, the unexpected, you find there is this incredible layer to life that you merely glimpsed before.

It was a pleasure to do a special photo session with some local kids who have Down syndrome. I am hoping to spread awareness locally in addition to adding my own flair to the campaign, Changing the Face of Beauty.