Chooo Chooooooo

Laura and I just had a chat after a very full day and I came up with yet another analogy about what it's like to parent a kid with a life-threatening illness.

A friend and I threw a baby shower for another friend who is due in late October. It was very fun for me AND it was also very hard for Laura to have me spending so much time cooking, going early to prep at the location, etc. Laura was clearly very sad and having a hard time at the beginning and I knew it wasn't just that we'd been grinding gears but I wasn't sure what was up. Tonight she explained that she was struggling with her memories of us at *our* incredibly joyful baby shower. We were so full of hope and joy and expectations. She said, "If I could tell those expectant parents (us) what I know now...I would have told them to just get rid of those ideas and hopes and dreams they have about a typical new parent experience". Looking back it's part cynicism and part sadness for those parents (us).

At the party, a woman with a 9-week old baby was talking to my expectant friends about how babies are so incredible because they are just pure emotion- they look at you so completely joyful and then the next moment are screaming their heads off. It was the "looking at you with such joy and contentment" comment that got me.

I felt such a deep, deep pang of sadness that I almost teared up. My memories of Simon's first 4 months are of a very grumpy, irritated, rarely content little baby that never stayed happy for very long. I don't have memories of him looking at us contentedly, peaceful and snuggled up happy and awake. I remember him as either asleep or just not very happy. We, of course, now know that he was probably very uncomfortable most of the time due to his undiagnosed heart failure and that makes me so sad. We didn't get to have the progression from grumpy newborn to gradually happier and happier baby in the same way other people did. Ours stayed grumpy longer and then KA-BAM we got derailed.

Here's the analogy: It's like we are now on another train from all our friends and most other parents. We might be riding right next to them, on two separate tracks, waving and smiling and chatting through our window, but we have a different journey. Our car goes through really scary dark tunnels with sharp, unexpected drops. We have bumps and screeches and rocking that our friends don't have. And the poor souls that might actually be riding in the same car with us terrify me.

I almost can't handle the idea of getting close to parents with other kids who have life threatening illnesses because their tragedies feel like too much when we're just holding on by our fingernails. Sometimes I can't stand to read the listserv of other parents with kids like Simon because it feels like if they go off the rails, our car might be the next one to fall off the tracks with them. It's all so precarious.

I was just really feeling the loss of the relatively carefree mindset I had setting out on this journey. It's not just worrying about funny poops or sniffles. It's rat poison and feeding pumps. I don't wonder if Simon is going to learn things as fast as his peers. I wonder if he's going to learn things at all. It was such a mix to be so excited for our friends and at the same time try not to hold my breath, cross my fingers and pray with everything I have, that they will never, ever know the pain and sadness and loss that we feel as parents of a baby with special needs.

Laura says plainly, "I'm jealous". Our friends will more than likely get to have that typical new parent experience that we will never get to have. And we will never get that back. Even if we ever had another kid, which is highly unlikely, we are forever changed. I've lost my innocence around what it means to be a parent. I will never parent without worry. I can try every day to keep it manageable but I also know it's that little bit of extra worry that makes us vigilant enough to do what is needed to keep Simon stable.

Sometimes I feel really sad for what we lost and are still losing. And lonely. We can be part of the party going on in the train on the track next to us, but at any moment we might end up getting derailed again or lose steam and slow down and then we're all by ourselves again, watching while everyone passes us by.