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One Year Diagnosis Anniversary

I once would have defined heartbreak as when someone you love, a boyfriend, spouse or significant other, breaks your heart. Maybe you were cheated, ghosted, shocked out of the blue or came to discover the person you loved wasn’t who they said they are. That was my definition of heartbreak.

It wasn’t until December 15, 2017 that the definition completely gained a new meaning for me. To recap- at the 20 weeks anatomy scan of our baby girl, Emberly, we found out a then devastating diagnosis of Spina Bifida. I can’t speak for my husband, but I believe my feelings regarding Spina Bifida would have changed drastically if the bedside manner of the sonographer and nurse on-call was a little more hopeful or optimistic. But it wasn’t, and we left the office that snowy Friday evening devastated, broken hearted and filled with complete sadness.

As the first year anniversary of Emberly’s diagnosis approached, I was drowning in anxiety. My husband was out of town for a month on a work related schooling and I was home, alone, with my two young children. I was swamped with appointments for Emberly and asking favors from family and friends to help watch Lincoln so I could tend to her PT and medical appointment needs. And the whole time, Emberly’s “anniversary” was quickly approaching and I had no one to really talk to about it.

It does seem odd. Before having ever been in this situation, I would have never thought a day of diagnosis could be so life-altering or traumatizing. But that is truly what it was in one word – traumatic. It traumatized me in so many ways. I will never be able to step foot inside the doctor’s office in which I first had a miscarriage, followed by a healthy pregnancy with Lincoln and then a painful diagnosis with Emberly. That changed the mood over that office from hopeful and elated to tragic and angry. I feel a sting of resentment to friends who have medically “normal” babies. Not because I would change a single thing about Emberly, but because I have such a small group of people who understand the challenges that Emberly does and will continue to face physically and medically. I find myself feeling frustrated when someone is thrilled to find out if their baby is a boy or girl at their gender scan, just how I was, now knowing that happy moment could be ripped from your hands in a second leaving you to care less about the gender.

Through all of this, I found my heart completely broken. It was broken for that baby I “should have had.” It was broken for the family I thought I wanted. It was broken for my baby and broken for Lincoln because I knew tons of medical interventions were in my future which meant less mommy time for him. It was broken for my husband because I already know the weight he carries for our family. I was completely broken. I felt less of a woman, less of a mother and just less of.

But that was then. Here I am, here WE are, one year later. And how wrong was I? So, so very wrong about so many things. The family I had wanted before IS the family I have now. The mother I am now is better than the one I wanted to be. The brother I wanted Lincoln to become then surpasses my expectations now. The stress I thought I would add to Darius hasn’t slighted him or thrown him off his game in the least bit. The baby I should have had then is exactly what I have now. She’s phenomenal, she’s perfect, she’s the most beautiful, kind soul I have ever laid eyes on.

So, as I head into the second year of her Spina Bifida diagnosis, I hope I can begin to relive December 15th as a day in which I was changed and molded into a better woman, wife, mother and friend. Was it a devastating day? Absolutely. But it is a part of my story – a huge part – and one that I would never even begin to regret or change.

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