When Anber was a toddler, I took her to the library almost every day.
Her baby sister goes to the hospital almost every day, it feels like.
For me, it is one of the griefs of having a medically fragile child. I wish we were going to the library instead. I miss those kinds of moments, and grieve the loss of them from our lives. But Kyrie doesn’t know she is missing the library.
For her, the hospital is home.
She knows the people by name.
She knows what elevator buttons to push.
She knows which wagon is hers.
She can drive herself to the lab, or to pulm, or to surgery admission. She knows where to go. This is where she has grown up.
The growing up piece is the miracle.
We never knew we would make it two.
She has been through so much, but still she is here, with good days and sick days, breathing days and purple days, play days and sleeping days.
But after a year of 19 pounds, we have suddenly jumped to 23 pounds.
And another inch taller.
Maybe because she had been sick, and on oxygen, and the child has only ever gained weight when she was on oxygen.
But after a handful of good days, and off air when she is awake and up and moving, the gtube has helped her maintain that weight for a whole week – which, for us, is a really big deal.
Because every ounce matters.
Every breath matters.
Every syringe full of nutrients matters.
Because that’s how we got a whole year of tomorrows we never thought would come.
Today was not a fun hospital day.
I mean, it was better than an ambulance ride, and better than a life flight, if that’s what we are comparing to in this little life.
But it was a poke and prod kind of day, a picture and scan kind of day, a hold you down on your back so you can’t breathe and suck out your blood kind of day.
Because that’s the thing about medicine: they can’t help if they don’t know what’s going on.
And to know what’s going on, they need pictures and levels and numbers.
It’s the ugly side of miracles, you guys.
We take the miracles where we can get them, like her finally being back on the growth chart at a whopping 3rd percentile.
Because everything else is so hard.
Getting food in her is hard.
Keeping food in her is hard.
Breathing is hard.
Playing is hard.
Development is hard.
Getting those numbers can be hard.
Numbers that tell us if and how much her body is still processing food. Numbers that tell us about her kidney function. Numbers that measure what her life is expected to be.
And now they say – they, who are specialists states away and looking at numbers instead of the girl we love – they say what we have fought to avoid is happening, that her heart is too big, and has been working so hard for so long that the tissues are getting tired and hard, and that her organ function is becoming the primary medical concern rather than airway structure.
They moved forward with genetic testing this morning, as a last chance at finding an underlying cause that can explain everything and offer some hope.
Except, they say, we are already treating her as we would.
So it’s an illusion, really, because these results probably won’t actually change anything.
That’s when we practice using our words.
I do not like to be sick.
It makes me angry if they hold me down.
It makes me sad they take my blood away.
I do not like surgery but I do like popsicles.
It’s more than courage.
Courage implies a choice.
This is different. This is violating. This is the assumption continuing this saga will give her more moments for other things, like going to the library again someday.
But again, that’s why palliative care is so important.
Because today, when they say her heart is too big, we can still go home to our own beds.
When they say her heart is working too hard because she can’t breathe, we can still go home to our own toys.
When they say her heart will wear out because of working so hard for so long, we can still go home to our family for our little life together.
Because at our house, someone is supposed to be around to steal all the hairbrushes. Someone needs to collect all the crayons out of everyone else’s school boxes. Someone needs to pinch the children when they are naughty.
Because that’s quality of life, when you are only two.
That’s our news today, that we didn’t have any good news.
There were no good numbers, no good scans, no good pictures.
Except for this one:
And that one is everything.