It’s Down Syndrome Awareness month. A time of year that has landed on me differently each of the seventeen years it’s mattered in my life. Currently my social media feed is flooding with posts of perspective, gratitude, education and the most adorable kids with Down Syndrome and their families. As it should be.
There are also a multitude of stories I now have access to that I didn’t when I become a first-time mom to my oldest daughter who was diagnosed at birth with Down Syndrome. There was no Instagram. I didn’t know anyone in the special needs community and I most certainly was not even aware there was a month dedicated to my newborn daughter’s diagnosis. All I knew was this was not what I expected and I had no idea what I was supposed to do with her.
The stories flooding my feed today are from the heart. Each individual shares a piece of their experience as a parent of a child with Down Syndrome. The origin story is somewhat familiar with variations of adoption, pre-natal or birth diagnosis. The sentiments ring similar with feelings of appreciation, awakening and transformation. But in recent posts and videos, even comments shared on my photos, I have seen sentences that read like this, “I cried the day my baby was born, and I wish I wouldn’t have.”
I think I understand the heart behind this statement. Most of us parenting a child with Down Syndrome did not realize the positive impact they would have on our lives and the lives around us. Many of us did not plan for this and were unprepared for the incredible journey of joy that lay ahead. But it’s okay to cry. It’s okay to be afraid. It’s okay, dare I say, to be sad and perhaps disappointed.
I would describe my own emotions on that day as devastation. It’s a strong word. And one most moms don’t experience or express on the day their first-born baby arrives. Yet it’s a big part of my story and I should not be ashamed.
There is no right or wrong way to feel the day you experience unexpected news. Especially the kind of announcement that altars the trajectory of your life. Addie changed everything. Yes, for the good. And that was always God’s plan. But in the moment, it was not mine. That kind of re-routing, redirecting, re-establishing requires some expression of grief. And it came with pain. She was not pain. But the loss of expectation, the deep fear of rejection, the knowledge of unavoidable differences in her ability that would lead to life-long challenges hurt my heart for my baby girl. And some days, they hurt my heart for me.
It’s okay to cry.
I have held the heartache from other moms in my DS community. The shame they’re covered with for not knowing better. But how would they? I have actually been shamed from mom’s in this same circle. A mom who struggled with infertility and was finally able to have a child. A mom who chose her baby through adoption. And a mom who had experienced the miracle of someone in their life with Down Syndrome prior to their child’s diagnosis. Their experience was different. Their story is valid. But so is mine.
It’s okay to cry.
I heard it said that people don’t cry because their weak, but because they’ve been strong for too long. Crying sad tears was an important part of my story as Addie’s mom. In the moment it was honest. Allowing myself the space to not hold it all together started my journey of vulnerability. That enabled authentic connection with God. And to be honest, authentic connection with her. I don’t believe God always give us what we can handle. An unwanted loss, an unexpected announcement, an unknown diagnosis are often beyond our capacities to carry all alone. The bible actually describes a life of joy is one that sows in tears. A life that’s won is a life that’s lost. A life that’s strong is one that confesses it is weak first.
No matter what you’re going through. What decision, doubt or despair you face today. It doesn’t matter what someone else might do or how the other handled the same thing you were handed. This is your journey, it’s your story, it’s your path to walk and future to create.
It’s okay to cry.