I was watching Ninja Warrior last night and one of the contestants was talking about his inspiration, his sister who has facioscapulohumeral muscular dystrophy, a rare from of muscular dystrophy. He didn’t make it through, but was successful in sharing awareness and saying a phrase that struck me.
In his talking head, they were asking about his sister (who he literally carries on his back during races) and how he feels and he said, “my heart is heavy. My heart is heavy”. And that just felt so accurate. My heart truly feels heavy in my chest. Its just a constant weight. Whether its the tightness of holding back tears or just the everyday feeling of anxiety. That something isn’t right.
Matt and I are not alone with tragedy. Though I can’t decide if its better to be in company, knowing that it means we’re not safe from future tragedy. That it can happen again and again. Or if it were easier if it were just us, we’re the weird one-offs, and we’re saved from future disaster. In so many blogs and groups, they say over and over, you’re not alone.
It’s 1 in 4 pregnancies that end in a loss, and 1 in 160 pregnancies in a stillbirth. 1 in 160 is less than 1% of pregnancies but it seems pretty high to me. I’ve been in touch with a woman who lives on the other side of the city. We were in different hospitals just a few days apart, but both going home without our baby. I’m sure even in the three short days we were at the NICU, we weren’t alone in our tragedy.
When I look for support on many facebook groups, I’m seeing that many women are suffering from multiple losses. Often they have other children as well, but its hard to focus on the children they do have, rather than how many occurrences of loss they have faced. Could we do this again? Would we be able to survive the trauma?
And if we do, we’re not safe. Last year my best friend’s family suffered from losing her nephew to SIDs. My step-sister died in a car accident weeks after her 21st birthday. There is no ‘make it to this point’ and we’ll be ok. So as we go through genetic counseling and try to decide our next steps, I just hope my heart gets lighter and I can see small odds as just that. Small odds. Not a guarantee that we are the ones that will be chosen.