Today is the day. The day we’ve been counting down since the day we got an epilepsy diagnosis for Lucas. We started counting down sometime around February of 2016, after his brain surgery. We have had to restart our count several times over. Every time he had another seizure. Every time we had to increase his medication, we began our count again.
Hopeful, desperate, often disappointed, but always faithful.
We were counting the number of days that Lucas had been seizure-free. The criteria with our neurologist for weaning Lucas off of his seizure medicine is two years without a seizure and having a normal EEG.
Today is the day.
We have made it to two years. Two years of extra worry. Worry beyond the worries of typical parenting. But we have had so many victories, and so many joys as well.
When you have a child, people say things like your “heart beats and walks around outside of your body now.” In other words, the thing that has stirred up a deeper sense of love than any other human relationship has ever stirred up, is walking around in this world. And that makes us vulnerable.
Your emotions will go up and down with everything that possibly goes on to help or hurt your child. This little heart beating outside of your body depends on you to make the right choices for them. Choices that will result in them having love, protection, shelter, happiness, and health.
When your child has one or more medical diagnoses, the worry, the fear, and the things that you can and cannot control can be drastically intense at times.
The only way it’s possible for me to make it through these ups and downs is to remind myself of these truths.
God is good.
In the storm, He is good.
In the valley, He is good.
In the fearful moments in the middle of the night that keep you awake, He is good.
On the mountaintops, He is good.
In the sweetness of 2 years seizure free, He is good.
And in the unknown ahead, of whether or not we will have to restart our count, as we attempt to wean, He is good.
I will stand on His promises.
It’s how I made it through yesterday, how I face today, and how every tomorrow will be.
So, in my soul, when worry creeps back in, I will stand on His rock, and find rest.
And it is good.
In my fears, when I think all the what ifs, I will rest on His certainty and promise, that He is in better control than I could ever be, in every situation we face.
And it will be good.
And on the days it doesn’t look good, or feel good, I will be real.
I will get on my knees and cry out to Him. I will ask him the whys. I will yell out my frustrations. I will get on my knees. And I will choose to trust,He is still in control of the things I can’t see yet.
Beauty from ashes, is his specialty.
Making masterpieces from blank or messy canvases.
That’s His specialty.
We are His children, pieces of his heart beating outside of His body.
And I will trust that He loves me enough, to see me through all of my days, whether or not they feel good in the moment. He is working it out, through ways I can’t imagine.
I can’t help my kids up from murky ground if I’m not standing on solid ground while I reach my hand out to help them up.
So here we are.
A countdown begins today.
Day one of our leap of faith that we can remove and stay off of seizure medication safely, starts now.
I will cling to my Father’s hand through this journey, and trust that He is in control.