I’m not sure what we’re going to do on Adriana’s fifth birthday.
We’ll have the cake and presents, of course.
The get together with friends.
But, I don’t know what we’ll do if she asks the question again.
“Am I going to walk when I’m 5?”
She doesn’t ask us every day.
But she’s been asking more often.
She asks Gaby more than she asks me.
Gaby holds up well when she tries to respond — as best she can.
“That’s why we pray to God every night,” she tells Adri. “So one day you’ll walk.”
And we do.
We ask for God’s healing power over her body.
Ask Him to create the motor neurons in her spine that would allow her to gain strength and someday walk.
Adriana asked us the question this past week.
Gaby had bought Adri a new winter pajama.
A size 5.
And so she asked.
“Will I walk when I turn 5?”
A size 5 pajama made her think of turning 5.
We want to say “yes.”
We want to give Adri what she’s asking for.
But this is beyond buying her pajamas.
This is complete powerlessness!
Something beyond our reach.
We want to assure her that one day she’ll walk.
But if we tell her “yes,” and she doesn’t roll out of bed on February 21, 2016 and walk over to our bedroom………what then?
Will she then ask if she’s going to walk at 6?
Or will she call us liars and try — with all her power — to roll over and cry?
“You can go wherever you want to in your wheelchair,” Gaby tried to comfort her.
“No, I don’t want my wheelchair!”
In my head, I ask Adri to be patient.
I know telling her out loud won’t help.
One day she will walk.
God’s given us so much, and I believe He’ll give us that.
The signs are there.
This past May, Adriana was accepted into the ISIS Pharmaceuticals SMN-Rx phase 3 clinical trial. It’s one of the more promising treatments for spinal muscular atrophy (SMA).
ISIS has created a drug — SMN-Rx — that acts to replace the survival motor neuron (SMN) protein that’s missing in SMA patients.
In Phase 3 of the trial, some children receive the drug. Others don’t.
We don’t know if Adri’s receiving it. Few people do.
Her doctors will observe her over the next year and measure her strength.
If it improves, we can probably assume she’s getting the drug.
After the trial, Adri may be allowed to participate in the “open-label” phase of the trial, if she qualifies. Open-label means she would receive the drug.
It’s hard not knowing if she’s getting the medicine, but that’s how the trial works.
I remember the day of her first treatment.
I prayed that we would wake up the next morning to the sound of her footsteps, as she walked into our room.
But it didn’t happen.
In God’s hands, yes, something like that could happen.
But not in human hands.
“It takes time for the nerve cells to generate and heal,” the doctors tell us.
We have to be patient.
With the same patience I want to ask of Adri.
But, the signs are there.
Signs of greater strength.
I want to kneel down
A few months ago, when we would gather in the kids’ room to pray, Adri began to ask me to place her by the side of the bed — so she could kneel.
“Quiero estar de rodillas,” she’d say.
“I want to kneel.”
Every night, she still asks me.
So, I position her carefully.
And, if her arms, her body, her legs are positioned just right, she can kneel by herself.
She really couldn’t do that before.
If she moves too far in one direction or the other, she loses balance and can’t hold herself up.
But nonetheless, we see a strength that wasn’t there before.
She does the same thing in church…..says she wants to kneel when the congregation kneels.
I position her in front of me so she can kneel on the floor or on the kneeler.
Once I position her correctly, she can balance herself.
Then the order comes from her mouth: “Saca tu mano!”
“Take your hand away!” she demands.
And so I do.
And she balances for a little while.
After her latest treatment, we were in mass, and I positioned her to kneel.
I sat behind her, ready to catch her if I had to.
I looked down and saw the two bruises.
The dark purple blotches on each bicep where the IVs were placed to draw blood and deliver fluids.
I don’t know exactly how the thought entered my mind, but it did.
I looked at Christ on the cross – behind where Father Sean sits – placed up high for all to see.
I looked at the nails in Christ’s hands.
I looked at the bruises on Adri’s arms.
Back and forth.
Now, I wasn’t comparing Adri to Christ.
But another thought crossed my mind.
How the innocent do suffer.
Christ did it on the cross, when he suffered death to save us.
Adri, too, is experiencing her own suffering.
It’s hard for me to understand the reason, though.
Perhaps to teach others a lesson in strength.
Perhaps to help doctors find a cure for SMA.
Whatever the case, we’ll continue to pray she’ll walk.
We’ll continue to pray she’ll walk soon.
On her fifth birthday, or two weeks after her fifth birthday.
So she’ll never again have to ask.
“Mama, am I going to walk?”