The drive gave me time to think, to question if this was a good idea.
I was nervous. Six women meeting up. And the only thing we had in common was the brain injury our children experienced at birth.
My husband joked that I was walking into a murder movie plot. That didn’t scare me. My emotions did.
The real question: Was the commonality of HIE enough to make a real connection with virtual strangers?
The answer: a resounding yes.
That weekend was filled with the best mix of laughter and tears. We shared stories and fears. We laughed constantly. We didn’t sleep much because we packed that weekend full. We immediately bonded in a way I never imagined.
More than a year and a half later, the women I met at that cozy Michigan chalet are my lifeline.
They’re the people I turn to when I feel overwhelmed with therapies and diagnoses and the never ending what ifs. They get my life. Best of all, they get me.
Our lives are not the same. We have different backgrounds. Different family structures. Different ideologies.
And our kids are different. Some can walk. Some can’t. Some can eat. Some can’t.
But when it comes down to it. It doesn’t matter.
We’re the support each of us was looking for when we entered this crazy world of HIE and special needs parenting.
I love my friends I had before HIE. They’ve supported me and been there for me.
But there are times I feel like an outsider.
When they talk about milestones and typical parent problems — potty training, getting their kids to eat their veggies, having alone time — I don’t have a lot to say. They can’t understand HIE, and I don’t want them to.
That’s why I need my fellow HIE moms.
When one of our kids is getting ready for a medical procedure or their yearly IEP, these moms the ones who say: “You got this.”
When I’m feeling down about the “what if” and “why me,” they build me back up.
They know what it feels like to love your child with all your heart but wish that life could be different.
So when Drew sits for six seconds with minimal support, I cheer! Even though my daughter hasn’t yet.
Or when Max takes his first steps, my eyes well with tears, and I proudly watch that video five times in a row. Even though my daughter can’t.
When Kaden’s mom worries about his progress at school, I listen and encourage her. It doesn’t matter where Emma measures against his progress. I’m there for my friend because I care about her.
And when Alex has a hospital stay due to a bug my daughter can more easily fight off, I know his mother sees my “get well” wishes for what they really are — love and support. She doesn’t push them aside because I have a child who isn’t as medically fragile.
HIE affects every child differently. But we’re all in this together.
We crave support and understanding. The feeling I get when I see, talk to or text with these women is my comfort.
Since our first meeting, we’ve gotten together three more times — once with our kids, once with about 20 other awesome moms and once to celebrate a new baby soon to enter our families.
Each meetup is filled with laughter.
We talk. We get loud. We eat. We drink.
And I come away feeling refreshed and ready to take on whatever HIE throws my way because I know I’m never facing it alone.
They’re my normal.
And everyone should get to have that feeling.
For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
And sign up for what we hope will be your favorite thing to read at night.