When the CHD community loses another fighter, the wave of shock and sadness never recedes fast enough to take a good deep breath until the next wave.
When I hear about another loss, it’s just as devastating at the first loss I ever heard about when I entered this community 5 years ago. It never gets easier. In fact, it gets more difficult to bare. The weight of sadness on the heart is too heavy to hold. It really does pull you down. I want so badly to hug these parents who experience these losses and it sucks so much that I can’t.
In our journey we haven’t yet met too many families in Colorado affected by CHDs. A few, but not many. And in our journey I have yet to meet a family who is affected by the loss because of it. I’m sure in some Freudian way I’m doing that on purpose, to avoid the pain or something. Because it will boil down to something that every parent of a CHD survivor hates to confront…
their child’s own mortality. It is awful to feel that fear because first of all, the most recent losses and every past loss has zero to do with how I feel. There’s the guilt of even daring to “go there” with your thoughts. How dare I even think about my own crap when there’s a parent shedding tears and enduring such excruciating pain? I don’t have the right.
But I’m human. We’re all human and we’re all in this shit together. Despite our own fears, worries, guilt, tears, and anxiety, we pull together.
I don’t tell Natalie about the losses.
She sees the beautiful photos of warriors who are still with us and are not on this earth. I don’t decipher the 2 for her. So while so many of us mourn, show our support and shed tears for the fallen, the only thing I can do about it, once it hits home, is to hug my own warrior a little more and just keep appreciating every second with her. The smell of her hair, the dimples on her cheeks, and that wonderful belly laugh.