Unfortunately, today didn't go as well as I had planned. Zeke had an overnight EEG monitoring at home two weeks ago through his new neurologist, the one we met with today. While I was sitting in the airport waiting to board my plane to Charlotte last week, I received the results.
"So I have Ezekiel's results. They are pretty significant. Zeke is having a seizure last anywhere from 2-4 seconds every 15-18 seconds...."
Just let that sink in. My boy. My sweet, loving, curios boy is being robbed of all God has created him to be every 15-18 seconds of his life.
A few days before we received Zekey's results, I had this epiphany. Seizures are a glimps of Hell itself. Hell, to me, isn't just a place. It's defined as chaos, or lack of order. I see Hell when Zeke's trying to say something and a piece of Hell takes it from him. Or when he's laughing and stops mid-laugh to seize for a few seconds coming out of it so frustrated.
And I would be, too. I am, actually, very, very frustrated. I know God gave me that dream not that long ago and the good Lord knows, with as many seizures Zeke is having in a day, his body could shut down at anytime and we could loose Zeke. It's a fact BUT....
I have faith in a God who holds us in His hands. Nothing happens without Him knowing it. I truly believe, with all Zeke is going through, God is really the one sustaining him. God is the one allowing us to get glimpses of who Zekey really is...smiling and joyful. The Zeke we once knew so well.
The neurologist wants to get his seizures to stop with more meds and then we can move forward in other options. It wasn't what I wanted to hear but I respect him and am thankful for his insight. He also said that blood tests showed his liver numbers are double what they should be. This is from the meds. They use his liver as a punching bag. Thankfully, he doesn't show signs of jaundice. So more meds makes me a little anxious but then I just remember yet again, God's got this. I don't have to take it all on my shoulders. It's too much, so I can give the anxiety to Him because He cares for me. Such a peace.
So tonight, in my exhaustion, I prayed again for new hope. I apologized and repented that I even had to ask again but when I ask God, He seems to graciously give it to me. He isn't up there going, "Again, Breena?! Seriously! Get over yourself and believe!" No, that's what I am saying to myself. He's understanding and with me through every ounce of faith or lack thereof throughout this journey. Of course He wants me to believe but He isn't ready to crack the whip when I am lacking in faith.
And I'm weary. I feel like his healing is so close but in anything that's almost finished, it's the hardest time for me to keep waiting or pushing through. I'm annoyed that I feel it's close. I think, "Who are you to determine this?!'
But, the hope of Zekey being all healed up, a walking miracle (even more so than he already is) is such a beautiful thing to paint a picture of. Believing in a time where Zeke will be talking to people, sharing his faith saying how his life didn't look so good at one point...how he almost didn't make it.
My hope shouldn't lie in a new dr., a new treatment but in God alone because none of this is going to work unless He is in it. He has His timing, plan and way of Zeke's story giving Him glory and I need to rest in that.
God is so good. He's so sweet to deal with a gal like me. One that can be up and praising Him in the storm and down and doubtful begging to be lifted from a trial.
Thank you God for letting me be where I am but pushing me in my walk with You. You are kind and gentle but firm and strong. You get me as I keep trying to get You.
Know that God loves you right where you are but He wants more from you because His love for you is so great and He knows experiencing Him more is only going to make you stronger not just as a person, but as a child of His in HIM. Also, leaning more into Him makes you more of who He created you to be. How cool is that?!
Blessings. Please continue to pray and THANK YOU for doing so! It means more than you'll ever know!
That hoped I asked for, feeling a bit guilty. Check out this that I watched last night...God is so, so good!