Be Still My Soul

Since my last post, I've been still. Still in the sense that I'm not being super proactive in trying to figure out what God's doing, saying or figuring out what's wrong with Zeke (other than the obvious; intractable epilepsy).

I've felt this sense of peace. The same peace a mother has after pushing during a long contraction and getting the few moments to be still, gather her thoughts and focus and prepare for the next one. The contraction is comparable to the fighting to be in constant communion with God through prayer and reading The Word as to not let lies or fear enter into my mind. It's compared to fighting to believe just how big God is and what He wants to do with our son, Zeke.

Or, for the guys, yeah...I got nothing. Just know it's really, really hard to push a baby out of ya. I'll stop there.

At first I was feeling guilty. I wanted to know why there was this overwhelming feeling of exhaustion. I felt a fight up against me and by god there is one! I felt like I had just swam from one side of the lake to the middle and wanted to just lay atop of the water, breath, rest and take it all in. Of course to not stay there forever, but wait until I was ready to swim to the other side.

I pondered it, talked it out with God in the littler amount of energy I could muster up and came to a beautiful realization. This wasn't a bad thing. I needed time to just be still. To not wonder what God was trying to say because, He was silent. I needed to not try and pray the best way I could in order to bring unity between Zeke and the Father as to see His healing hand come upon Zeke, His time wasn't now. I just needed to be still and know that He is God.

This peace that passeth all understanding came to me when I realized The Holy Spirit was interceding for me. I wasn't without communion with The Father. I was just resting...in Him. The covet of His wing, if you will.

This peace has been perfect preparation for today's dr. visit at Cincinnati Children's. Today we were supposed to find out if Zeke has Dravet Syndrome. Ever since a month ago at his last visit where we found out about Dravet, I just prayed to God that He'd prepare me no matter what the results were.

I truly believe this overwhelming sense of peace is God's gift to me for such a time as this. Because today we didn't find out whether Zeke has Dravet Syndrom or not but the dr. talked like he is quite certain Zeke does have it.

The symptoms are all there. And he also said that catching it and controlling the seizures early enough would allow for Zeke to catch up to his peers. There is this new medication from France that has done wonders for those with Dravet. He said these words exactly, "I know it's hard to believe but it has, in most cases, completely stopped the seizures."

This is coming from a man who knows all too well just how many seizures Zeke is having. He's seen his EEG. Thousands a day.

I replied, "Okay but what you say doesn't align with anything I have read on Dravet including the pamphlet you had me take home last time."

He nonchalantly said, "Oh, yeah that's because these new treatments are only 1-2  years old."

Oh.Right.Gotcha. That simple, eh?

The downside is that there are some kids who do not respond to these treatments and continue having uncontrolled seizures and in his words, "It's bad. It gets very, very bad."

Zeke also had an MRI. This was to check many things but specifically if there was inflammation due to autoimmune disease which would lead him to be treated with the IVIG. Read here for more information.

The MRI was also to point out if there is any are of the brain that has damage due to the amount of seizure activity.

Here's what I take from all of this. There is earthly hope. God may use this medicine from France or the IVIG to get Zeke's seizures to stop. To give my boy a chance to live life again and be the boy God has made him to be. These treatments will be life-long though and they do not come without a cost.

So, I remain still. I refuse to grab hold of this information and run with it. I've been there and I've done that. If I've learned ANYTHING through all of this it is not to hold on to what is capable of change or can fail me (or Zeke in this case). I must always look up and hold on to God for He is the same yesterday, today and forever. This disease changes, the options for seizure control changes, the dr.'s change. I just can't do it anymore. They keep failing me.

C.S. Lewis puts it so well:
"Do not let your happiness depend on something you may lose, only upon the Beloved who will never pass away."

I'll know when God's hand is in Zeke's healing. It may be through medicine. It may be through a simple prayer and God's timing and healing hand comes down. I just do not know.

But, I told Andy I can't just accept the fact that Zeke may have to take meds for the rest of his life due to this disease. I will rejoice with every step towards complete healing but I won't settle.

I have to work through this thought. I want to be grateful and not foolish but also not settle for meds or the IVIG when God's fully capable in healing him completely. Where meds are not needed anymore!

*You don't need to help me think through this...I have this thing with God. I am honest with him, I wrestle with Him in my heart and He's faithful to bring me peace.

So, for now, we wait. We keep on doing what we're doing. Feeding him the right foods, giving him the right meds and changing them when needed. Pursue new treatments but above all, keep looking to God and wait for His hand to bring our boy back to us. Fully. Whatever that looks like. To pray and continue giving this to God who is fully capable to carry such a load and bring beautiful redemption. And of course, to lift up my sweet boy to his Maker.

Thanks for praying with us! You bless us!!!