Some of you know, we took Ezekiel to University of Michigan on Thursday due to increased seizure activity. His demeanor changed so drastically since we had started the NG tube and was declining and quickly.
I still blame it on the formula but then there’s this other thing. The prayer for Mercy. Ya see, this disease, Batten’s form NLC2 that Zeke owns is a form that allows a child to live anywhere from 8-12 years old. A sad, sad diagnosis for any parent or loved one to hear.
But, how would a life slowly or I guess quickly being taken away be a good thing if they could make it to 8 years, 12 years?! From what we had seen in Zeke, the suffering prolonged sounded like a curse, not a blessing.
For Andy and I, through prayer and wisdom sought out to our Heavenly Father, we realized that comfort was our highest priority. Quality, not quantity in the time we have with Zekey. Why prolong suffering? Why let him breathe through a ventilator while he is brain dead? It seemed selfish.
With this new peace we had, we started praying differently.
“Yes, Lord, please heal him. We know you can. May Your will in heaven come down to earth in Ezekiel’s body. But, have mercy. Please don’t let this disease drag out. Please make our boy comforted. Heal him + have mercy.”
Do you see? When we do not fear death, we have freedom to pray in a way that gives in to trusting more to One who can and should be trusted. God himself.
We will pray like David, asking for his precious boy to be healed until his dieing days. For our sweet boy, Ezekiel to be healed because we are called to and God can.
But we want God’s mercy poured out. We cannot tell the future but we can be obedient and give God space in our hearts and our words to do BIG things.
Asking for mercy has brought a quick decline. As in, the latest picture you have seen of Zekey in Cincinnati, smiling in a wheelchair is no longer the boy you would see in a picture of Zekey now. He can barely smile, cry out and he is dead weight. No longer able to hold himself up in anyway. No longer able to jump on his knees sloppily to show you his joy. He chokes on his flem and hospice is coming soon. Very soon.
Now, we are thankful for a smile.
His body is literally overcome by involuntary movements causing his arms to be thrown up in the air and then his feet follow. It’s as if you are watching a moving where someone is being controlled by one who holds their voodoo and their body responds in ridiculous ways. True story.
He is exhausted. He knows that his body moves this way because when given a split second to be free to think, he thinks it’s annoying and cries out.
He’s suffering. He’s exhausted. He needs healed. He needs mercy.
I don’t know what his healing will look like. I do not know how mercy will continue to unfold but I do know these will come to pass one way or another. What Jesus did at the cross was so big that this disease will be wiped away completely either here or there. God is merciful and may show it through taking Zekey home sooner than later…
I just do not know. But details matter less and less. I feel as though I am snuggling deeper into my Heavenly Father’s arms as I hold my sweet boy. I have peace where there is chaos all around. I rest in His goodness and the truths of who He is. And I am still + know He is God.
And I cry and I hold and cuddle. I look as deep into Zeke’s lost eyes as I can to try and get that split second to be able to steal a smile.
University of Michigan’s Children’s Hospital (Motts) kinda blew everyone else out of the water.
Columbus neurology was a terrible experience for us. I cringe at the thought of that season even though Zeke was much healthier than he is now.
Cincinnati was our saving grace and I honestly believe God intervened and brought us to Dr. Franz who came along side us, took Zeke’s “case” and did some really great things for him and our family.
After moving from 1.5 hours from Cinci to 3.5 hours (our moving close to family), we mentioned we’d like to try and work with a neuro closer, suggesting UofM. His eyes lit up as said he knew 2 really good neuros there and would be happy to work with them. It was perfect!
But when Zekey started this downward decline, we knew we had to get him in somewhere. Toledo hospital just doesn’t have the professionalism (to be nice) or the resources to take care of Zeke’s case. So, we took him up to Ann Arbor….”That place up north!” say the buckeyes.
I didn’t expect it to be better than Cinci. Once we were actually admitted, I couldn’t believe the beauty and space in the room. The view was breathtaking and our care was top notch. The bedside manor was better than anything we have experienced. And again, I have only good things to say about Cinci so to be even better says something.
The same Dr. that Dr. Franz had mentioned he knew and really liked for us was the same Dr. on that night in Ann Arbor. Dr. Robertson. Interesting….
She was lovely and was so excited to know we came from good hands, Dr. Franz. She took her time talking with me, loved on Zekey, cried with me, hugged me and did everything she could to make him comfortable. She also let me make the decisions that didn’t need to come from a dr. because she believed in me. She believed my goal was to make Zekey safe and comfortable.
One of the residents in Ann Arbor (Michigan for you people not familiar with that team up North) asked for me to go into more detail as to why it was such a difficult stay in Columbus (every wolverine wants to hear why a buckeye sucks…ha!) and I basically summed it up saying, “At least in neurology, because I have seen friends get fantastic care in other specialties, they were extremely egotistical and wouldn’t hear me out. My opinions or concerns for my son were often shrugged off. They didn’t speak to me as a human but as one who doesn’t have a doctorate. It was terrible. If I had any wisdom to give to you, I would just remind you that you have worked hard to earn your degree and that’s something to be proud of, but the families you come in contact with are suffering and I can’t speak for everyone, but a lot of us are here because we deeply love our child and want what is best for them.”
She smiled and was also one who told me she was praying for Zekey and some other really nice things.
It’s clear God’s doing big things in the hospitals he takes us to as we use every opportunity to share the peace and hope we have because of Jesus. We cry, yes. The peace and hope is still something we have in a world not yet made right. So there are tears, there is brokenness, there is death.
But Jesus already won and so we cling to that more than anything else we see going on here. We share this beautiful hope with others and we ask for God’s kingdom to be ushered in.
And there is beauty in so many of you who are begging to help in some way. Today, a surprise blessing from Kristin, over @ LilyandLight, who was supposed to be my roomie at the Influence Conference I missed due to Zekey’s sickness. She came and visited me (and little Bexley) at the hospital!! Just her presence and willingness to come into my chaos blessed my heart so very much.
Kristin, thank you for my Influence Necklace and journal! I felt like I got a small piece of the weekend so many woman were blessed by through these little gifts. You’re as lovely as they come!
To my readers: Your words of encouragement and prayers are so appreciated and felt. I cannot respond to all the love you share but I see it and I’m so, so thankful. Our family will forever remember the love of Jesus poured out through so many of you.
Thank you. From the bottom of my heart…thank you.