Death in the age of the internet

Being part of a rare disease community in the age of the internet is a very strange thing. It allows you to connect with others you would probably never have a chance of meeting in the real world, to share pain and challenges, joys and sorrows. It makes you feel not so alone.

Unfortunately, with a disease as potentially serious as SLO, it also means an unending stream of notices of babies dying. In the past couple of months, it seems like there's been such an announcement every few days. 

My heart aches for each and every one of those families. Their stories bring back so many memories: the fearful pregnancy; the hopeful birth; the devastating diagnosis; the flood of information; the emotional tsunami; and the unimaginable loss. I feel incredibly sad to think about someone else going through all of it for the first time. Sometimes I think about disconnecting myself from the community; to avoid having to relive the heartache again and again and again.

But I can't do it. Those who walked this path before me were there to catch me when I was falling. And I want to be there to let the next mom or dad know that they're not alone.

Losing a child initiates you into this hidden club of mourning parents. People at all stages of grief. Some who suffer every minute of every day, and some who have gone on to the next joyful experience. You learn about miscarriages and stillbirth and SIDS and pediatric cancer. You think about whether it would be better or worse to lose a baby before you've had a chance to hold her, or to lose a child whose personality you've already gotten to know.

They're all bad. They're all unimaginable. Until they're you. 

Last night, Shea crept into my bed in the wee hours. Lou was traveling and Shea finally succumbed to the cold that has been plaguing our household, awakened by a hacking cough. I listened to his wheezing breath as it grew calmer and calmer, and we were lulled together into sleep.

But it was silence and panic that awoke me, as I suddenly thought, "wait, is his breathing too quiet?" and reached out a hand to reassure myself he was just fine. Still alive. Still breathing.

I think every parent has those moments. Especially when your little ones are new. Or very sick. I had them when we first brought Shea home, long before Harper ever existed. Long before I entered the club of mourning parents.

But the feeling is different when you know it's not entirely paranoia. When you learn, firsthand, that niggling symptoms aren't always just dismissable. That dying babies and lost children don't just happen to other people, people you read about in the news or in novels or see in movies. It happened to you.

More than the struggle not to give in to sadness every day is the struggle not to give in to fear. To enjoy every moment with Shea and with spawn and not let my thoughts turn to whether that time will be limited by events outside my control. To not worry that because a bad thing happened before, it could happen again.

Every news story of a baby born and dying of SLO makes it that much harder. Even though I know neither Shea nor spawn have anything to fear from that disease, it is hard to ignore that these stories are a microcosm of all the things you never dream could hurt your child until they do. And I don't want to think about that. I want my kids to experience everything their world has to offer, all the love I can give them, without thought to the dangers that might lurk around every corner. The coldly, calculating scientist in me doesn't want to allow my emotional mommy-ness outweigh the statistical odds of very bad things happening. Because really, the odds are on our side.

So I push those thoughts aside. Because it's the only way I know how to survive.

I like the idea of those SLO angels, like Harper, and the other kids lost too young, gathering together for a never ending playdate somewhere. A much happier vision to focus on.