As I sit here in Zekey’s bed, the place where he spent the last 6 months of his life, watching a lot of Daniel Tiger’s Neighborhood, CARS, and Thomas- Misty Island Rescue, I feel intense loss mixed with much relief for my sweet Zekey-boy.
As most of you know, Zekey wasn’t always showing his sickness. He was ‘healthy’ all the way up to his 2nd birthday, where he walked, ran, communicated with a few words, laughed, showed sympathy for others, etc. All the things he was supposed to do, he did. Soon after, though, he lost his speech and the first major red flag was at 2.5 on May 18th, 2012 when he had his first seizure.
Batten disease was a part of his make-up and we had no idea until that dreadful day, on July 30th, 2013, our hopes for his life to be returned to normal and freeing him from all that was taken from him through meds and extreme diet change and of course, prayer (always prayer!), were crushed.
Zeke was going to be healed, but it wouldn’t be on earth. This post I wrote, about a dream God gave me was revealed in a new light and wisdom – God gave me a timeline and in the end, Zekey would be healed. We found deep trust in our Father that words cannot begin to express. God had been walking with us up to that day and wasn’t going to stop. He was showing Himself strong and good, even in the midst of Zeke’s suffering.
Ezekiel means, “God strengthens,” and was it ever true for our sweet Zekey.
In the midst of losing his milestones and health ever so quickly, Zeke continued to shine so bright in these darkest of times. Batten disease, through seizures, tried to take Zekey but even on earth, in his hurting and broken body, Zeke continued to laugh, smile and show his love in the best of ways. He never stopped being goofy, enjoying the life he didn’t choose, enjoying the familiar sounds of me and his daddy, and of course, his sweet, hurting siblings who also begged for a miracle in their brother, even until death.
The verse Matthew 5:4 “Blessed are those who mourn, for they will be comforted,” isn’t just a sweet little saying that we say to those who mourn. It’s truth. We feel God near and He has never left us throughout this whole, difficult season. It’s been so, so dark but He’s been so, so good and true and faithful and strong. Christ’s redemptive work at the Cross has continued to shine so brightly through our sweet, sweet Zekey.
My sweet Zekey-zoo-zoo was by far the strongest person I have ever met. I’m not just saying this to make him sound good, I’m saying this because God put together a most beautiful boy who would hold out strength through the disease God knew he’d end up with, to shine the Hope of Jesus for all to see so that through his life, suffering and now death, eyes and hearts would be turned to Jesus again or for the very first time. What a calling he had and I know he was proud to carry for His heavenly Father, Yahweh.
Saying goodbye to my Zekey, reading scripture to him, telling him over and over how much I loved him, how much of a blessing he was to me and to his daddy and siblings and all who knew him and of him. I told Zekey how much I felt honored to be his mommy and I meant it with my everything. It was the hardest thing I may ever have to do. I begged God to take him from this earth and back Home to Jesus, as Zekey’s suffering became overbearing to see at the end.
I had to tell Zekey we’d be okay and I wanted him to go Home to see Jesus and all the people we read about in the Bible who lived their life for Jesus, too. With his daddy in the room, I knew I needed to walk away and let him go because he wanted to stay for me. His heart would beat more when I talked to him. I know he loved me and I know he felt the love of his family and all of the thousands and thousands who have shared Zekey’s amazing story and the beautiful, strong legacy he has left.
“Death, where is you sting?! Grave, where is your victory?!”
“But thanks be to God, who gives us the victory through our Lord, Jesus Christ.”
This is one of the countless gifts of the cross where Jesus bled and died for each and every one of us. Only those who accept His perfect gift and live for him and not for themselves, will reap the reward of heaven as my sweet Zekey did.
I look forward to the day when I can hug a tall, handsome man – not calling him my son but my brother, telling him how proud I am of him and how honored I was to be his mother, even for a short 4 years, 4 months and 4 days. I will be on my deathbed, anxiously awaiting to see my Savior Jesus, my loving God and my so very strong Ezekiel Todd. What a gift, I do not deserve, to be able to do all of these things and more when I, too, enter the gates of heaven. By Christ’s perfect life and death will I make it through, not anything that I have done on this earth. None of it is enough but Christ, He is enough.
A special and sincere, heartfelt thank you goes out to:
Dr. Carine in Upper Arlington who did everything she could to help our sweet boy.
Dr. Franz, his nurses and the genetic team at Cincinnati Children’s who brought much redemption to what had only been hardship at Zeke’s previous place of care. Cininnati had the best bedside manor and Dr. Franz was truly one of the kindest dr.’s I have ever met, who wept telling me Zeke’s diagnosis and was in it to help give Zeke the fullest life he could.
Dr. Robertson and nurses at UofM Mott’s Children’s hospital who took on Zeke’s case once we moved from Westerville, OH to Toledo, OH due to receiving Zeke’s diagnosis. She sincserely cared for Zekey and our family and spent a lot of time making sure Zekey was comfortable during his last months of life.
Thank you to my in-laws who have taken us into their home so that we could spend quality time with Zekey, as a family during his last 7 months of life.
Thank you to my parents who have helped with taking the other three and giving them a fun night at “Grammy and Poppy’s” while Andy and I cared for Zeke and tried to get in more sleep.
Thank you to the momma’s who reached out, knowing the pain of losing a child, especially to those have lost or are losing their children to Batten and who ‘get’ what it looks like to lose a once healthy child.
Thank you to those who stuck by me and our family, not understanding what we were going through but who were still willing to be in the mess with us, showing us compassion in its truest form.
Thank you ALL for your continued prayers for me and my family as we grieve the loss of our irreplaceable Zekey. I pray this post helps you understand just how precious and sweet this boy was. I pray you read this and know he was a gift, not a burden. He was a joy in the midst of sadness. He was a light in the midst of darkness. He was strong, even in his weakness. He was a beautiful reflection of Jesus.
Taken by Rachel from Greylakephotodesign.com
My other 3 children, Cyrus(7.5), Eisley (6) and Bexley (2.5) are all grieving the loss, too. I have mentioned a few times that we were accepted by Make-a-wish to go on an RV trip across the nation, to the west coast to visit beautiful landmarks God created. We chose this trip because Zekey always loved being outside and he loved traveling in the car. We wanted one last ‘hurrah’ with all of our family before the inevitable would happen.
Well, Zekey didn’t make it to the trip but we just have to go on this trip, still! Zekey’s siblings were so excited to have this as a beautiful memory with their brother and they still want to go to honor him. It was the “Zekey trip”, after all and we still want to take it.
How can you help bring healing to my other sweet babies and our family as we try to live on Zeke’s legacy? In lieu of flowers, you may donate money by clicking the “Donate” button on the right side of the screen (just below my picture), or if you have a Huntington Bank in your area, you may donate to the “Ezekiel Holt Memorial Fund” to help us pay for this “Zekey trip”. This is a trip that will bring healing and joy as we grieve the loss of our little man. Thank you for considering.
To read the beautiful, heartfelt blog post my husband, Zekey’s daddy wrote, please do so here.
I love you, Zekey-zoo-zoo. Momma will see you soon and we will sing and dance and be free together, forever, in the presence of our God and Lord, Jesus Christ. Amen.
Taken by Megan from GenieLeigh.com