I’m pretty sure every year as October approaches and I attempt to prepare for Down syndrome Awareness Month on the blog, I struggle to find the right words to share with you.
This year is no different.
Perhaps it’s even harder now, as the boy who made Down syndrome Awareness Month so relevant in my life is no longer physically present in my life.
In a recent interview with Sam on The Annoyed Thyroid blog, I was asked to identify something that has changed my life. In all fairness, it was kinda hard to narrow it down to one, but I settled on the pivotal moment we discovered that our third baby had Down syndrome.
Knowing that the child growing within me had Down syndrome changed me.
Knowing Nicholas changed me. In all the best kind of ways.
Going through prenatal testing and diagnois was an incredibly difficult time. We had to come to terms with the fact our baby was considered ‘imperfect’ by society’s standards before we even had him in our arms and could get to know him. And yet Nicholas ended up being the absolute light of our lives. The experience taught me that I can do hard things, and that sometimes things work out even better than we could ever anticipate, despite our fears.
We were welcomed into the amazing ‘family’ that is the international Down syndrome community and my eyes were opened to the beauty in diversity. I listened to the stories of other families who received a Trisomy 21 diagnosis, either prenatally or at birth, and many of them recounted how medical professionals had said “I’m sorry” as they shared the news. And yet, despite the apologies for the presence of this child, I witnessed those parents falling deeply in love with their child and striving to offer their son or daughter every possible opportunity. I also witnessed these same children flourish with nurturing and guidance.
In this world, we are often sold a fantasy about what perfection looks like. We are encouraged to avoid pain and challenge, to take the easiest road possible. But in taking the path of least resistance, we often miss out on the most amazing experiences and the real beauty that life has to offer.
Despite my broken heart, I cannot imagine having missed out on even one moment of knowing Nicholas.
Now that Nicholas isn’t with us, I almost feel like a bit of a fraud talking about Down syndrome. But, although he may not be in our arms, I know that I will always be his mother, I will always be part of the DS community and I will always be an advocate for people who have Down syndrome.
And so, as October begins, I want to continue sharing stories from the Down syndrome community during Down syndrome awareness month in 2016. Because if by sharing I can help one family see that their child is worth fighting for, one medical professional to see that one child is worth saving, one person to see the beauty and value in all human beings, then it is worth every word shared.
Happy Down syndrome awareness month. Let’s bring on October in all its beauty.
I love this so much 🙂 So glad you’re doing this Annie, it’s really truly appreciated by so many of us.
I’ve never commented online for anything before but feel I must. Reading you say you feel like a fraud talking about Down syndrome stung. Your posts are powerful, your love and strength palpable and your grief unimaginable.
I found your blog a few months ago as we waited on a diagnosis for our then 6 month old son. He has T21, and we couldn’t love him more. He is a perfect delight and the light of our lives. I’ve learned much from your posts and hope to continue learning from your strength and wisdom. Never discount yourself or your family. Bless you all, especially Nicholas.