Three Heres, Three Nows
working with kids is also working with parents
What if the two sides are never the same?
I’m talking to the mother.
I already brought up how awkward I felt last time when I clammed up.
That was when she told me she was thinking about putting casts on his ankles, and it sounded like a bad idea to me, but instead of saying so I went silent.
Now she says, “I could tell you were having a reaction in that moment,” which is nice for me to hear because now I know she sees more than she says, and I’m more confident we can go deeper.
This time I’m trying to talk with her more as I work.
I want to dance around with my own awkwardness of maybe not aligning with her position, but I’m not sure what I’ll say until it starts coming out of my mouth, so I’m being careful:
“…if the two sides are never going to be the same, maybe another question is, How is he doing?
Is he growing, interested, learning?
If the two sides will never be the same, there’s still…
I guess I wonder, what’s the quality of his life process?”
I’m not outright saying it, but I’m thinking, maybe the outcome you think you want isn’t as important as his learning.
And it feel like I’m putting her on the spot.
She replies:
“It’s so complex because his leg length difference could be 6 inches.”
Oh, right.
I’d forgotten his genetic mutation means his two sides actually grow differently, so it’s not just the typical asymmetries we all have.
I’m glad she reminded me.
It’s good to check my limited view of the situation.
She continues:
”6 inches of leg length difference would be a big quality of life issue, and that’s why we’re trying that experimental drug to stop the overgrowth issue, which should help because of his young age.”
Without warning I change the subject to focus on the process we’re in.
“How is it talking about this?
I feel like I’m pressing you.
I don’t want…
I just want to know, is this annoying you?”
“No, it’s not annoying.”
“I just want to make sure I’m not talking out of turn.”
“No, not at all.
This is the kind of conversation my husband and I have all the time.
It’s so hard to weigh what’s right.
And that’s why we do everything.”
That’s when something shifts for me.
It’s like she has given me something.
When she says, It’s so hard to weigh what’s right, I recognize a pattern.
I’ve heard other parents talk about the decision making process, about what to do about their kids disabilities.
And what I sense here is an emotional undercurrent.
I don’t know exactly what it is, but if I had to guess I’d say a some mix of grief/fear/trauma.
In the moment though, my intuition simply says it’s important.
“…that’s why we do everything.”
I say, “Because you don’t want to miss a chance to help?”
She says, “Cause we don’t know what’s going to help.
There’s no one who really knows what his future looks like.
What the key is going to be.
What he’s capable of.”
Wistful.
I hear a mix of hope and despair.
“His geneticist is probably the closest…
His geneticist and the MCM doctor in Seattle are probably the ones who are closest to understanding what his life trajectory could look like.”
What will his life trajectory look like?
“Especially the doctor in Seattle cause she studies PIK3CA gene mutations.
That’s what she does.
And she makes medical interventions for those kids.
And she studied alongside the world's foremost and really only other PIK3CA doctor. And now she has taken up all of his work.
But she also is super busy and doesn't have time to just look in the crystal ball all the time.”
An expert looking in a crystal ball.
Telling the future.
As tho someone or something might someday put an end to the feelings of uncertainty underneath these awfully open ended sentences.
What will his life trajectory look like?
We don’t know what’s going to help.
At the same time, I’m connected with the boy through my hands.
He’s been calmly lying on the table while his mother and I have been talking, and in contrast to his usual restlessness, right now he’s still.
In relation to the emotional dance of our adult discussion [about him], right now he’s calm.
Is he listening to us talk about him?
Surely, he must be.
Which bands of the conversation is he tuning to?
When I start to listen to him through my hands, I feel surprised.
I tell his mother.
”He's so quiet right now.
Like nervous-system-wise.”
My focus has shifted from working in the mom’s register, which is an important here-and-now, to second here-and-now of the boy’s movement world.
And of course there’s my here-and-now, which makes three.
The three heres and three nows are linked up in this moment, with the three of us being more of less aware how.
I’m saying, “Look, it’s actually pretty nice in this movement world right now.”
I point it out because maybe her here-and-now will feel different if she connects with him in a moment of calm, openness and ability to learn.
Those are the things I’m hoping will grow and develop, in all three of us.