“Stay with us.”
You surprised me, a total stranger inviting me to fly across the country and stay with your family.
We were both only weeks into our families’ journeys with Hunter Syndrome, still holding on to the perception of “normal,” still struggling to gain our footing.
Your children’s hospital was holding a symposium – my first step into this unknown world. I told myself I was going for knowledge, but maybe what I needed most was a friend.
Those first days facing this diagnosis were devastating. The first months were lonely. The first years re-shaped who we were as people, mothers, wives, and friends.
In the world of rare disease, we so often depend on social media for information, connection, and support. We are so geographically distant from other families, much less families with whom we really connect with on a deep level, that social media is a necessary, but often inadequate, support system.
You opened the door to real friendship.
I tried to keep my “real” friends and my Hunter Syndrome friends separate at first. It takes time to realize that this is forever. That our lives are unavoidably changed. That they are now inextricably intertwined with others who share our journey.
We were so green back then. Is it cynical to say we’re jaded now? Or just wiser and worn?
Sometimes, I worried we’d lose ourselves as well.
We were going to save our kids together. We were on a mission. If love and determination were the only factors, we would succeed.
We are Dragon Moms after all.
But even dragons have a soft spot.
I would give anything to save Jack. Eight years ago, and still today. All along the way. Not only because of my love for Jack, but because of my love for you, my friend.
I imagine this is what it’s like to have a sister.
We are different in many ways. But we are tied by something that is beyond personality or circumstance. Marriage or career. And as far as we venture down our own unique paths, I can never forget the beginning.
We sat in the pit.
Before there was hope. Clinical trials. Gene therapy being funded. I sat on my kitchen floor with you as we sobbed into our phones, anticipating the loss of children we loved. Sharing a grief that many keep hidden in closets or under covers.
A grief so deep
It feels like falling, bouncing off a rock bottom with shattered bones. Like never dying, but wondering if it might be better if you did.
It feels like a kite string slipping through your fingers, like watching it fly away, and then realizing that your child was riding on it.
It feels like crying in the shower, like redoing your makeup for the third time, then never making it out the door.
It feels like watching through the window as your child runs into the street, like helplessness, like death knocking at the door you forgot to lock, like hoping he doesn’t turn the handle, but knowing he eventually will.
It feels like guilt, like the child you forgot at home.
It feels like a muddy pit in the dark of night that is caving in all around us.
If feels like motherhood on some days and nursing on others. Like love and anger. Like inhaling the smell of newborn skin and breathing out fire.
It feels like entering a cocoon and emerging a dragon.
I know and don’t know the future. I know it will be hard. I know there will be joy. I know we will stand beside one another on days we wish our kids were playing in the yard, like they did at two years old.
But they won’t be playing in the yard.
And when you’re tempted to run, to hide, to give up, my friend, if I could say just one thing.
Stay with us.
To learn more about Jack’s journey, read Jamie’s blog at Here’s Jack!
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Postscript: I recently read a beautiful post by Emily P. Freeman entitled, “What It Feels Like When Your Kids Are Growing Up.” I was absolutely wrecked by her description of that feeling, not only because I get it (I have two typical children), but because I fear it (“growing up” in the world of Hunter Syndrome means dying). My mind went to all of the places that haunted me when we learned of our son Case’s diagnosis. And I remembered. I sat in that devastation with my husband, and with my friend. And as we each now live as parents to typical children and also to boys with Hunter Syndrome, both our lives walk the tightrope between Emily’s post and mine.
Related Post: Notes from a Dragon Mom by Emily Rapp (NY Times Oct. 15, 2011)
Last modified: April 12, 2017