That is exactly how life has felt, lately. Everything has happened so quickly and is so fast paced. It really puts Psalm 39:4-6 into perspective.
4 “Show me, Lord, my life’s end
and the number of my days.
Let me know how fleeting my life is.
5 You have made my days a mere handbreadth;
the span of my years is as nothing before you.
Everyone is but a breath,
even those who seem secure.
6 Surely everyone goes around like a mere phantom;
in vain they rush about, heaping up wealth
without knowing whose it will finally be.”
Let me just preface this by saying, I don’t relate with other bloggers when it comes to the struggle of being real. We are all far from the way God originally intended us to be because of the fall. Imperfect. Effed up; so why not share (what’s appropriate, of course) with one another and allow God’s redemption on our lives to be revealed? His grace and mercy, and, of course, our obvious need for Him daily? It’s a no-brainer to me.
Has it been almost 3 weeks already? 3 weeks since we shut the doors at Ember Church. The church God gave my husband a vision for not once but 2 times in the last 10 years. Both times he followed God. Both times, in the world’s eyes, it failed. I’ll post on this more later.
It was another crazy day. Zeke’s future up in the air, continual seizures, little sleep (I’m talking 5 hours or less every night) yet again, no quality time in my marriage. The only thing coming out of our mouths were demands to help where needed. We were drowning. Our family seemed to be ripping at the seams. I couldn’t keep up with the house, Zeke and his seizures getting worse by the day, appointments, dr.’s that refused to believe me, 3 other healthy children that just needed positive attention instead of only getting it when they did something wrong.
It was Hell on earth. And I wasn’t sure we were going to make it. I cried out to God begging him to help us…I pictured a storm, chaos all around, fear gripping behind me as I looked up, holding on to God’s robe at his feet begging for Him to help.
His peace would wash over me until the next hour when I went to Him again. Crying out to God quite literally many times during the day…I had no control and as soon as I thought I did, God quickly reminded me that it was Him who ultimately had the control and I needed to trust him.
Then Andy said it, “We’re done. We can’t keep doing this. Ember is done.” I didn’t believe him. We weren’t on the best of terms for obvious reasons. Our lives ruled us and there truly was nothing we could do about it. I just thought he was being ridiculous and so I replied, “Okay.”
Andy stormed out the door and met with the man who had ordained him as a pastor almost a year ago exactly, told him what our lives looked like and he confirmed it. It was time to close Ember for the second time.
I was in disbelief and honestly, I selfishly didn’t want to add one more thing to my plate. A grieving husband.
I couldn’t talk to Andy much about Ember. He had to be all internal processor-like and figure it out on his own. So, I called my mom and as it came out of my mouth that Ember was closing, I bawled my eyes out. For me and all that God had done through Ember bringing me closer to who God created me, for my kids who LOVED Ember and looked forward to having “Embah fwiends ovah” after church every week. Of course, for my husband who is so gifted by God and had to again, turn away from a vision and dream that was clearly, or not so clearly at this point, from God. There were a million reasons to grieve about Ember…
It was devastating but honestly, I didn’t have much time after that phone call to grieve. I had to keep fighting for Zeke, which as I tell my kids often, “Fighting for Zeke is fighting for this family. I do it for him but also so we can have a less-chaotic life someday, through his healing.”
I fight for Zeke with every phone call, every test, every stay in the hospital, etc., etc, etc. It takes up all of my day. HE takes up all of my day.
During this time, Zeke was getting worse. Hope was slipping through our fingers, dr.’s weren’t listening to me when I told them he was having many, maybe even hundreds of seizures a day at this point. They told me he was tired and that’s why his eyes rolled into his head. I didn’t believe them. He was getting worse and I had to take matters into my own hands.
I told the dr.’s since they didn’t believe me that Zeke was having seizures all throughout the day, I was going to put him on the Ketogenic Diet myself because the meds were not working. His Dr. finally took me seriously and had another (2nd) Long Term Monitoring EEG on Zeke. Long story very short, I was right. They were wrong. And there wasn’t much time to save Zeke from regressing further into…I can’t even bare the thought…I am telling you, he couldn’t even say the words he was saying for the previous 6 months. He couldn’t say ‘momma’ or ‘dadda’ anymore…He could barely stand without falling from a seizure that made him go unconscious for a second. He couldn’t sip from his straw. It was the saddest thing ever.
I gave Andy a week to grieve Ember and then I told him he would have to hold off for awhile. We were losing our son and I honestly wasn’t sure how much time we’d have with him being somewhat aware of who were were or if he would have much of a life at all soon. This angered Andy but I didn’t care. It was a fact and I knew, in the end, if we lost Zeke (one way or another) that he’d regret not being emotionally present during the time we did have with him.
They wanted me to wait another month with the new meds before starting the diet. They were convinced the diet was too hard and it was a last resort. I wasn’t having it. I worked with a friend who is in the medical field and who saved her daughter through this diet and started Zeke on it the day he was released from the hospital.
We had a scheduled Neuro appointment 2 days later and when the neurologist found out I had Zeke on the diet, he was beyond livid, told me that I was going to have to feed him sticks of butter (false!) for dinner and that it was “extremely dangerous and he could die.”
Seriously? This diet is more dangerous than my son having hundred’s of seizures a day?! Oh, and “You are going to have to watch your son’s every move because he cannot eat ANYTHING that isn’t on the diet.” I replied, “Yes, I’d rather have to follow him all around to keep him from eating foods he shouldn’t than having to follow him to make sure he doesn’t fall from his tremors these meds are giving him which are only getting worse every.single.day.”
He walked out of the room and fast forward one hour and I was in the hospital with Zeke for a full work week to force him out of the diet I had him on which caused the seizures to come back full force. I wanted to die. The doctors were controlling and even called a social worker on me for starting the diet on my own. Then, threatened it again if I wasn’t compliant with their diet. Ludicrous!
When we got home, he still wasn’t doing well. He wasn’t doing as well as when I had him on the diet for those 3 days before they literally forced him out of the diet for protocol.
We watched Zeke get worse. Tantrums that lead to seizures every morning which required meds to get him out of them. Falling from tremors and just being unsteady…I sobbed to Andy saying, “We are losing our son right before our eyes! Why isn’t the diet working like it was?!” Hope was gone.
Then, I called my friend who helped me get Zeke on the diet in the first place and she helped me realize some of the things they were doing were actually keeping the diet from working properly. It made me sad for the hundreds of people that are being guided on this diet by them who are probably not seeing success b/c of some major things they are doing wrong. But! I was hopeful that it could again, work for Zekey!
Zeke is now on the ‘real’ ketogenic diet and it’s doing wonders. He is smiling again, no tantrums, laughing again, wanting to read books again, saying the words he lost from all those seizures and even saying MORE!!! He is being compliant and just all around doing so much better! This is all in just 2 days!!
I was losing my son one day and now we’re seeing new light, all because of diet change. I’m thankful to God for the wisdom he poured out on us, all the prayers for Zekey all those who have bent over backwards to help us…the list goes on and on and God, HE gets all the glory.
We have a long road ahead of us. Keeping up with the diet for 2 years while praying he becomes completely seizure free. Praying he has no permanent damage on his brain and that he can start developing again. Funding through the state to help him get the therapy he needs…
Thank you for reading this and for all of your prayers. They have and are helping so much. God is ever present, always working and He is sure showing me that the things of this world are so unimportant and fleeting. This time in life has brought much perspective.
Oh, and Andy and I are doing better Life brings trials. Don’t bother trying to do this life without God…it’s just too damn hard.