One thing so intriguing with Zeke's disease is that so many people have been healed through diet change. So. Many. And so, as passionate about nutrition as I am for my kids (Remember, I am a hypocrite as I put so much effort into their meals, I have little time or energy for myself...someday!) I read up and study and try and stress and fail and try again and read so more and...
Then my panties get in a wad and I find myself angry at God because 'He's left it up to me to heal Zeke' (hahaha. haha. ha..) and my kids are getting whatever is left after putting in all of this effort towards 'Zeke's healing', the adults in my life are looking at me going, "Really?! Chill out." and I sense it and I just want to scream in their face and say, "This works for A LOT of people! Diet change has brought autistic children back to life (as in, they start communicating, eye-contact, and even epileptics stop seizing)!!! Excuse me while I am trying to save my son's life!!!!!"
You can then picture me putting my book back to my face, knees up and eyebrows furrowed. The world around me-my family, my growing children, are left to find their own things to do other than feed themselves because, "I'm busy trying to save my son."
This is why I haven't blogged in awhile. I haven't anything good to say. We took Zeke to Cincinatti Children's because of a silly meal change in his ketogenic diet that caused him to start seizing worse than ever. It's not like we did something bad. We added veggies and meat and although it was still "ketogenic", his body reacted terribly.
The dr.'s are not big on the idea that food could do such a thing, unless I slipped up and gave him something outside of his ketogenic diet which was NOT the case. So, there's that.
It was a truly exhausting and hopeless visit. No answers, no sleep and tons of tests. It had not felt so good to get home in a long time, and I LOVE my home!
One night, I gathered some paint and, well, started painting. I used my arm as a palette. I didn't care about it looking good. I just had to get it out.
"It" being the little bit of truth I could still hold on to while watching my son get worse?
"Love Came Down"
My Tweet: " Pondering how thankful I am that Love (Jesus) came down. This broken world will one day collide with heaven and all with be made right.
But, sadly, my struggle continued. I've only had a few words to say to God because asking for something He continues not to give is exhausting. So, I decided to take it into my own hands. And what I was so sure of failed me. It failed Zeke. Diet has continued to not work for my boy.
Then I got more angry at God. It wasn't until I could only sit next to Andy last night as he prayed and I just listened did I feel even a sense of anything from God. First time in a long time, so it feels. It was annoyingly refreshing.
God was getting my attention.
The next day, I had a conversation with my mom basically explaining why I'm doing what I am doing and making a point only to lead to the same conclusion.
His voice was getting really loud at this point.
Then dang it! My mom basically said it to me.
Tears. Sobs. "What am I supposed to just keep waiting on God's timing and let my son keep falling behind and get him a wheelchair when 5 months ago he could walk?! 1 year ago he was 'going to be fine. He'll catch up.' and was talking and as happy as can be?!'
As I write this, I still feel the struggle. This tension of being content with today as I look at the very sad facts that my son's loosing all that he had but really wanting to run ahead of God and figure it out all by myself.
But, the original dream I had, the day or two before Zeke had his first seizure was a clear picture of me as a mom, holding far too tightly to my children. Wanting to protect them but realizing my need to give them over to Jesus.
And this lesson needs re-learned as Zeke continues to get worse.
To top this all off, I met with Zeke's new social-worker. She's amazing and in our meeting as I had to explain Zeke's history, I cried. I didn't expect to but I also couldn't hold it back. It's a difficult story to tell.
She was so sweet. Zeke has a case that is more than likely going to go under an "emergency wavier". As in, he needs help now. He cannot wait any longer. This was such difficult news to hear, although expected.
Last night, my husband prayed something like this, "...God, you know what we want for our son. We know you are fully capable of healing Ezekiel. And we ask that you would. And if this wasn't a part of your plan, we ask that you would reconsider and change your mind. We ask that you'd bring healing down. And if still, you have a different plan, we ask that you would give us the grace and perseverance to get through this."
I totally understood his prayer but I had a love/hate feeling toward it. I feel like I'm giving up when I give God an "out" in my heart not to heal him. Obviously, God will do what he wants to do, but I want to do my part and pray believing. But honestly, that's where we are.
Andy also said, "100 years from now, this will not matter. We'll all be whole and happy and complete in heaven."
'But 100 years is a long time, babe!'
We are at a place that we feel Zeke's health is so fragile, anything could happen. I cry often. The burden of feeding him the perfect meals, keeping him content all day and of course the other children is a lot.
So I turn back to The Lord's Prayer and I'm comforted.
Pray then like this:
g“Our Father in heaven,
10 jYour kingdom come,
lon earth as it is in heaven.
12 and forgive us our debts,
as we also have forgiven our debtors.
13 And olead us not into temptation,
I will continue to ask for God's kingdom, His will to come down on earth, in Ezekiel's body, as it is/will be in heaven. Because Jesus tells me to and it's comforting. It brings me hope.
I will continue to ask for daily bread and focus on today and not try to figure out the future. That burden is not mine to carry.
I"m definitely wrestling God right now. I'm wrestling with trusting my son over to Him for fear He will not take care of him the way I want him to. But, as we go through this, I really, really want God to keep on using us, the faith He has blessed us with during this time, the highs and lows and the whatevers to share with all of you. I hope you can see that I share in this journey because I want to be a vessel of the power and goodness of God-no matter what.
For a child who is His, heaven is the richest blessing they could receive. The world is so broken and tainted. It lacks fulfillment.Heaven is like nothing we've ever known. It will be so, so good!
May Your kingdom come! Amen?