community and loss.

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.


One response to “community and loss.

  1. I hear you! I definitely remember the first loss our family encountered with CHD. A beautiful little boy named Nicholas. I never laid eyes on him, but I met his parents and older siblings. His mother reached out to us in the hospital just before Eli’s first surgery. These amazing parents had two older children, both of whom had various medical conditions including some heart issues. Nicholas was adopted. They knew about him, his special heart, and his other medical problems before he was born and they still chose HIM. That warmed my heart and they were immediately on a higher pedastal in my mind! We were discharged before they were and we hadn’t shared information to keep in touch. As luck would have it, I ran into them a few months later as Eli & I were leaving his GI office. All four of them exclaimed over Eli and asked many questions about him. I finally got to ask about Nicholas and they told me he didn’t make it. I was so unprepared to hear that. All I could do was hug them and let them know that they were stil in my prayers. After they got on the elevator I just sat in the middle of that lobby and sobbed for a few minutes as I held Eli, who had defied the odds. I’ve never forgotten them and never will. Since we never exchanged information, I just felt that telling about him here would be a good tribute to the blessed little angel I never met.

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