There are some nights, after we’ve signed the nurses out from their shifts, that I like to sit in the room with the kids. We live in a small two bedroom condo, so everyone is pretty cozy in our house. Sitting in that room, listening to the rhythmic whir of the ventilator, and the whoosh of the oxygen concentrator, life is calm.
I can hear Caleb tossing in his bed, with his face firmly planted against his fan (some kids sleep with a special blanket, Caleb sleeps with a special fan). I can hear Charlotte whispering in her sleep, barely audible over her vent. (She’s demanding even in her sleep. Even now and then, she lets out a “Caleb, come here now!” and I fear for her teenage years.)
In those moments, I pause and think about how we’ve gotten here. How CPT treatments and inhalers have become a part of our routine. How planning for a day away from home includes diapers and wipes and feeding pumps and ventilators. How our diaper bag has been replaced by a suction machine, and how it all seems so completely normal to us.
Charlotte adapts to life so quickly. A couple of days of riding the bus, and she’s totally fine with it. She lives by her routines, but adjusts her life easily when things change.
But I don’t.
It’s taken me a long time to feel like this is normal. It’s taken a lot of crying on friends’ shoulders and hashing out my thoughts to come to a place where I can accept my new normal. And accept it, I do. I’d even go as far as saying I’ve embraced our new normal. I don’t think twice about ordering Charlotte’s food from a DME company, and I don’t really worry about her Physical Therapy appointments instead of ballet classes. I love the quirky things Charlotte says, “I no hungry. I a tubie!” and I love watching her move throughout life with reckless abandon.
{I’m not always there, of course. There are days when I watch a two year old do things that Charlotte cannot, or when I hold a newborn baby, or when I attend a baby shower, and everything falls apart. I still mourn.}
But I’m surprised at how often the difficulties of the day, or the added chaos that comes with Charlotte’s medical fragility, don’t cross my mind. I’m surprised at how often I forget that there’s something different going on in our home.
Which is sad, in a way, because there is something different. There’s a little girl who fights everyday to thrive, regardless of the uphill battle. There’s a little boy who loves and accepts his sister, regardless of the personal sacrifice it requires from him. There’s a dad, who tickles his daughter endlessly, and is rightfully wrapped around her tiny pinky finger. He sees her as his daughter, not his patient, which is a hard thing to do when you are a doctor.
This home has seen a lot of different and it’s not all bad.
As the parent of a child with special needs, we often try so hard to tell our children that nothing can define them. Nothing can tell them what they can or cannot do. Nothing about them says they are different from the “typical” kids they see on the playground. But too often, I think, in our effort to erase differences (a righteous effort, I might add), we forget the mountains we have scaled to get where we are.
Those efforts should never be erased, forgotten or glossed over.
So here’s to “normal” days that celebrate all you have accomplished. Here’s to ignoring the trivial medical diagnoses, and accepting the accomplishments. Here’s a big hug for all the vacations you missed, all the Girls’ Nights Out you couldn’t attend, and all the Man-dates you had to turn down.
Here’s a high-five for the extra years of changing diapers, the long nights of wondering when a milestone will be reached, and the lifetime you’ve wasted in waiting rooms for medical specialists. Here’s to days filled with laugher (even when you are only laughing at yourself!), to friends to lean on when there are tears, and for a never ending supply of your own personal vice.
Here’s a moment of recognition– for doing what every decent parent would do, but has never had to. Here’s to all you do, without even thinking about it.
You deserve it.
