Am I going to walk?

Backyard leaves

Rolling in the backyard leaves

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.”

Adri stander

Adri in her stander

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.

Adri standing

Therapy in the basement. Adri’s standing strength is improving.

“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?

Adri and mama

Adri loves to wear mama’s glasses.

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.

Zoo

At the Denver Zoo: measuring Adriana at the polar bear exhibit

The signs are there.

Gaining strength

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).

Soccer game

In the parking lot during one of Santi’s soccer games

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.

Dog park

October at the dog park

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.

Fletcher Miller

Event at Fletcher Miller (Adri’s school): with mom, racing around the track.

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.

Denver Zoo walk

Family time at the Denver Zoo

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.”

Adri's dress

Trying out her new dress

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.

Wilderness on Wheels

At Wilderness on Wheels: handicap-accessible trails in the mountains

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.

Fire truck

In the fire truck: firefighters visit Adri’s school

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.

Christ’s hands.

Chatfield dog park

Chatfield dog park: first visit back to the park in years!

Adri’s arms.

Christ’s hands.

Adri’s arms.

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.

Breakfast

Breakfast time on a Saturday morning

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?”

6 thoughts on “Am I going to walk?

  1. Thank you for sharing dear sweet Carlos. We pray along with you for Ari to walk. We know God is good and that he loves her (and us). We send you our love and blessings from our house to yours. May the Lord Jesus Christ comfort you mind and soul as you and your family make this journey. Love, Lucy

  2. I was incredibly moved by your story. What a testament of strength and courage! I pray your sweet Adri will walk someday soon. I can’t even imagine how frustrating it can be not knowing whether she is getting the drug in the trial. Seems almost unfair, doesn’t it? But that’s how trials work. Keep the faith. And keep praying. God does deliver miracles, even small ones like the increase in strength that you have already seen. May your life be filled with miracles…
    Michele at Angels Bark

    • Beautiful note, Michele. So kind of you to respond to our blog! Yes, we turn to God quite often for strength. And, we’re quicker to notice the small miracles, as you said. Thank you for the prayers! And all the best to you and yours this holiday season.

  3. What a beautiful little girl. Your words are so touching – please keep us all posted of her progress. No matter what the future holds she’s a wee star. Praying for you that all your dreams come true x

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