Writing about Sebastien and the Setins for One Day without Starbucks for Sebastien and Mitochondrial Disorders, made me think about how difficult it can be to talk about your child’s very serious medical issues, even with good friends.
I have many dear friends who have children that are currently living with or have had life threatening issues. Every single one of those kids and their families, make it look easy. So easy, in fact, that some people don’t realize how hard it can be for many kids – going to a million doctors appointments, the surgeries, not feeling well.
Often, it’s hard to talk about your child’s condition, because the thought of anything happening to any one of your children, is unbearable. Somehow hearing the words come out of your own mouth makes it all seem much too real.
When H was very young, when the complexity of his medical issues were much more intense, we always downplayed whatever was happening. I remember hearing that a friend had said we’d almost lost Henry twice when he was in the hospital after his first surgery at 28 days old, and being upset with her, thinking she was being overly dramatic. But, he did stop breathing repeatedly, so she may have been the one with the more realistic take.
The fear of breaking down and just losing it when talking about anything so emotional is pretty hard to overcome. We’re trying so hard to keep it together for everyone else that it’s hard to put yourself in a position where you might not be able to.
As parents, we want our children to grow up in a happy home. When one of your children lives with a life threatening condition, or very complex medical issues, when you’re worried about their survival, you become cognizant of wanting every day to be special, meaningful. Happy.
You try to take the drama out of their day to day lives . You try to, while knowing that life doesn’t always work that way. Some days are wonderfully mundane and drama free and some days you are praying in a hospital that your child will have another day. Some days are happy, some days aren’t.
As parents, we spend so much time (especially when the kids are younger) trying to de-emphasize the gravity of life threatening issues, like MELAS, surgeries, seizures, trips to the emergency room, both for our families and for friends . We do it, because if you live every day with your autonomic system in full gear, it’s too challenging for everyone. We do it for our child living with medical issues to reassure them, keep them feeling safe and strong. Our attitude about whatever challenges (visible or invisible, because we all have them) our children will deal with is the most influential attitude they will have. It’s so important they feel competent, valued and loved. Kids are always listening. Always.
We do it for our other children, because it’s hard for a three year old to feel that their skinned knee is any less significant than their brother’s biopsy.
But, we also minimize things in our lives for our friends that don’t live in a world where hospital visits, surgeries, and trips to the specialist aren’t as commonplace as trips to the book store. We don’t want anyone treating our kids or our family any differently than anyone else, and we sure don’t want anyone feeling sorry for us.
There’s a very fine balance between someone appreciating and understanding what our lives are like and someone feeling pity. There’s a fine line between someone seeing your child as a hero who “inspires” simply because they have a medical condition, and someone seeing them as a kid who’s a rock star because they’re brave, an amazing artist, and can handle things most people couldn’t, or better yet, just seeing them as a kid being a kid.
* I wrote this last week, ironically, a couple of days before H was in the emergency room and PICU. He has only been to the emergency room twice, once at a month old and another time when he was about five after an out-patient tonsillectomy and adnoidectomy (which, by the way, insist on staying overnight for that if your child has a history of obstructive apnea).