Makinley Hope: Waiting

Makinley Hope

We were fully prepared to learn after our week of testing at NYU, that the seizure activity was bilateral, and surgery wasn’t an option for our daughter Gabrielle.

Duke University had already told us that this appeared to be the case.

We entered the doors of  Langone Medical Center with guarded hope, knowing that without this surgery, daily seizures and suffering would become our new normal.

I honestly wasn’t sure I could accept that.

Please Lord, let this be the answer…her answer.


How do you swallow that look in your child’s eyes, when abnormal electrical activity takes over, leaving them completely vacant?

How do you swallow the adrenaline rushing through your blood, that’s screaming, “Help her!” ?

How do you swallow seizures knocking the life completely out of your baby, filling her days with a series of naps?

How do you swallow epilepsy robbing her of a normal appetite, stealing away chubby cheeks and leaving them sunken?

How do you swallow watching steady steps, she worked so hard to gain, become clumsy and uncoordinated?

How do you swallow the snatching of developmental milestones from tightly clenched fists, denying her any hope for independence?

How would I ever move forward if that was God’s plan for our daughter’s life?

Truly I didn’t know.

I didn’t believe I would ever be able to quiet the urgency it ignited inside me.

Testing was complete and we waited in North Carolina to receive a call.  The call.

Have I mentioned, I really stink at waiting?

A lump of nausea settled in my throat.  I tried to swallow but it wouldn’t go away.

Was it this new little being, just starting to grow inside, that sent the nausea…

or sickness over the despair that seizures had brought into my life?

I knew it was really both, all tangled into one big lump of fear.

How would I ever care for a baby, and Gabby, if her seizures did not stop?

What about my other children, who patiently waited for the craziness to end?

I worried this baby would have the same malformation or something else would be dreadfully wrong.

Because really, after you have one sick child, there is no more disillusionment that children are all born healthy…that they all thrive and outgrow their parents’ doting hands.

I was afraid to take a pregnancy test…it just seemed like too much.

I was convinced somehow that seeing concrete confirmation would make me less able to cope with the reality of all that was going on.  I wanted to put it on hold until I could simply be happy about this new life and not have its beginning intermixed with a generous helping of uncertainty.

But I realized this was stupid…. and deep in my heart I wanted so badly to have another child.

I just needed to set the fear aside.

The fear being my lack of trust…

Trust in God’s plan for my life.

Our life.

Why couldn’t I trust Him?

Why was I so afraid of what he might reveal?

Did I not trust that it was good?

I reminded myself once again that He had orchestrated all of this from the beginning… and I comforted myself recognizing that He alone is in control.

I took the test.  My small group insisted that it was the right thing to do…to know for sure.

And when it turned positive I was joy-filled.  I was relieved.  I wouldn’t have wanted it any other way.

And God gave me the most amazing peace.  I’ve got this, He seemed to say.

God had planted a little seed of hope within me, a hope that I would cling to through the most difficult days.  A hope for new beginnings, fresh starts, and a hope for days of happiness to come once again.

I scheduled an OB appointment, but it was never to be.

A little over a week, after we had returned home from Manhattan…the phone rang.

It was Dr. Weiner.

But really in my mind… he was just delivering the plan.

God’s plan for my little girl’s life.

The evidence strongly suggests that all seizures are coming from the right side of her brain, he reported.

The doctors unanimously agree that Gabrielle is a candidate for the multi-stage surgery, he shared.

My hope began to soar once again…

Oh to be lifted from the bottom of a pit of hopelessness through His everlasting mercy. Thank you, Lord.

I prayed for strength, endurance, and child-like faith as we prepared for this most extensive brain surgery.

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