Zekey Is Finally Home

Zeke-Holt

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.

Holt Family

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.

Saying goodbye, hours before they lost their beloved brother.

Saying goodbye, hours before they lost their beloved brother.

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.

 HoltFamily-134Taken by Megan from GenieLeigh.com

41 Comments

  • Reply March 24, 2014

    Brenda

    Praying for all of you- I see God through you.

    BLESSED ARE THOSE WHO MOURN from “Lament for a son”

    “Who then are the mourners? The mourners are those who have caught a glimpse of God’s new day, who ache with all their being for that day’s coming, and who break out into tears when confronted with its absence.
    They are the ones who realize that in God’s realm of peace there is no one blind and who ache whenever they see someone unseeing. They are the ones who realize that in God’s realm there is no one hungry and who ache whenever they see someone starving. They are the ones who realize that in God’s realm there is no one falsely accused and who ache whenever they see someone imprisoned unjustly. They are the ones who realize that in God’s realm there is no one who fails to see God and who ache whenever they see someone unbelieving. They are the ones who realize that in God’s realm there is no one who suffers oppression and who ache whenever they see someone beat down. They are the ones who realize that in God’s realm there is no one without dignity and who ache whenever they see someone treated with indignity.
    They are the ones who realize that in God’s realm of peace there is neither death nor tears and who ache whenever they see someone crying tears over death. The mourners are aching visionaries.” (Nicholas Wolterstorff, Lament for a Son, p.85)

    • Reply March 28, 2014

      hill

      hi bree,
      you are on my heart and more importantly, in my prayers. when i heard the devastating news about your zekey, i thought that you should listen to this sermon from our parent church. his daughter died of cancer at 8 and his words are so raw and real and points directly the Jesus.
      http://www.realitysb.com/santa-barbara/sermons/when-sparrows-fall/
      xoxo,
      hill

  • Reply March 24, 2014

    Janice

    This little light of mine…I’m gonna let it shine…your sweet little Zeke”s light will forever shine. Thinking of you and your family and praying along with you.

  • Reply March 24, 2014

    Ellie Benroth

    Your blog is beautiful and your son is precious. You and your family are in our prayers. Praising God for your son and his healing and praying for peace, strength and comfort for you and your family. Our daughter also has Batten disease and we are in Ohio. (((hug)))

  • Reply March 24, 2014

    Jessi

    Girl you’ve been on my heart for hours and hours. The Lord is mighty within you. The Lord is mighty in front of Jesus. I cannot wait to hug you on this earth and him in heaven. I believe the Lord more today because of your family and that is not worth his life or all that you’ve been through. But I want you to know – He shines brighter in you. So much brighter.

    Love you sister.
    Jess

  • Reply March 24, 2014

    Lin Jones

    My heart fell & is broken for what you are going through. Praying for you, your husband and kids during this difficult time.

  • Reply March 24, 2014

    Autry Talley

    Peace be with you and your family.

  • Reply March 25, 2014

    Latoya Jenkins

    I just lost my three and a half year son in a car crash this month. We we’re hit by a drunk driver. He was my only child. I do believe he is in heaven, but my heart aches because I really miss him. Thank you for this blog. I know my comfort is in Christ. I long to see my son and hold him again. May God keep you and your family as I know He will.

  • Reply March 25, 2014

    Jennifer VanHoutan

    Beautiful reminder of our journey continuing. Our prayers are with your family for comfort.

    We have 2 children with Batten and live in Chicago…we have another unaffected child. My mom is from Steubenville. Let us know if you need anything.

  • Reply March 25, 2014

    Abby

    Your story and the way you have written about your sweet boy’s struggle has touched my heart so much. I feel so heartbroken for your family and at the same time so inspired to make sure my boys know how very much their Heavenly Father loves them. You’ve reminded me of what is most important in this life. Thank you for sharing.

  • Reply March 25, 2014

    Kara

    I randomly came across your IG tonight. I dont think I have cried that hard over anyone I have never met before. I am truly touched & inspired by your testimony. You have to be filled with the Holy Spirit to be able to come to your blog the way you have & write the way you did. I’m feeling so many emotions for you, for me, for my son. You have changed the way I look at my own son now. To know he is God’s son first before mine. I pray from today on in my prayers for your family. For your strong soul & for the blessing of coming across your IG. You’ve touched me.

  • Reply March 25, 2014

    Kim Fighter

    Zekey’s story is beautiful – I didn’t get to meet him but can see that he was such a beautiful light here on earth. My daughter Katelyn is in class with Eisley – she has been praying for Zekey and Eisley over the last few months. We will continue to pray for peace, comfort and healing for your entire family.

    “The Lord is close to the brokenhearted and saves those who are crushed in spirit” (Psalm 34:18)

  • Reply March 25, 2014

    Zoe Hafner

    Your Zekey will continue to be a blessed gift as God uses his precious life to speak to you of His faithfulness and love in the journey that unfolds ahead.
    Your words are tender and true, your heart are priceless, Breena!
    ~ beauty for the display of His splendor

  • Reply March 25, 2014

    Kylee

    I am overcome by your words. I’m humbled by the grace you’re showing, even in a time of the gravest, most piercing loss.

    Thank you for sharing. My heart aches for you.

  • Reply March 25, 2014

    Emily Mowery

    God is using Zeke’s story through you to touch so many lives already, and I know He will continue to do so. Prayers from my family for yours as you are walking this difficult path, you are an inspiration, Breena.

  • Reply March 25, 2014

    Dagmar - Dagmar's Home

    I’m so sorry for your loss! I’m crying reading this because I can’t imagine losing my son, my precious little boy who is the light of his dad’s and my life. I’m glad that you have your faith to get through this difficult time. No mom should ever have to go through losing a child.

  • Reply March 25, 2014

    Gretchen Saffles

    Bree, I went to bed crying last night and woke up again praying for you. God brought me to Habakkuk 3:17-19 to claim for you. You have shown shown so much strength and your love and confidence in Jesus is heart-awakening. I am praying for you, sister, all the time!

    “Though the fig tree should not blossom, nor fruit be on the vines, the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls, yet I will rejoice in the LORD; I will take joy in the God my salvation. GOD, the Lord, is my strength; he makes my feet like the deer’s; he makes me tread on my high places.”

  • Reply March 25, 2014

    Pip Duinstra

    So beautifully written. So recognizable. We have Jasper who has LINCL and one unaffected son. Thoughts are with you from The Netherlands.

  • Reply March 25, 2014

    Christine

    Bree,
    Your blog is AMAZING! I’m walking in the same path as you have walked. My son was diagnosed in October 2013 with the same Batten disease and has deteriorated quickly as well. I’ve leaned on scriptures to make it through the days.

    I just wanted you to know that you are strong and beautiful. I will be saying prayers for you and your family for comfort and healing.

    Christine

  • Reply March 25, 2014

    Amy

    Dear sweet mama, your family has suffered more than most will. Unbearable pain. Many of us crying along with you. Have a hard time even reading your posts….Thank you for sharing. Your sweet girls face in that pic above. Hurting for her brother…… You can feel the pain. Little angels, all of them….continued prayers for your fam. Zeke is healed perfectly now, sweet perfect little boy.

  • Reply March 25, 2014

    Mrs. Nielsen

    I am so sorry for you and your family’s loss. I remember taking Eisley to the gym and if Zeke was there, they would instantly be together. We would clap and cheer him on as he joined in the activities with some of the other preschoolers. He was a loved, joyful and headstrong young boy! I know he will be missed by all. Praying for you and your family. And joyful to think that he is running and not growing weary and he is walking and not growing faint, he has been lifted up on wings like eagles. What a joyous day for him!
    “When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” –Kahlil Gibran

  • Reply March 25, 2014

    Mary Brack

    Breena, in the midst of your pain and suffering you are a beacon of light and faith to all those you come in contact with ~ whether in person or through you blog. You walk as one who is fully wrapped up in the arms of Christ, and you encourage those around you to stand stronger in their faith in Christ. I’m praying for grace and peace for all of you in the days ahead. I am available to help with any practical needs you may have. My love goes out to all of you.

  • Reply March 26, 2014

    Amanda

    Zeke had the most sincere and amazing smile. And he Loved his brother and sisters. I remember last fall he spied his siblings playing on your backyard swingset. Zeke could not walk well, but that determined, beautiful boy moved his body Any Way He Could to get across your big yard to the swings just so he could be close to them. Their love for him was just as strong. I am so thankful that I was able to be near your son for a brief time. He was so full of light here. I am blessed that I know you Breena. You are a beautiful mother, wife, woman. Please hug Cyrus, Eisley, and Bexley for us.

  • Reply March 26, 2014

    Jessica Carr

    Thank you so much for your testimony. You have shared your heart, your precious son, and your faith in our Lord with everyone. What gifts you have given the world during your darkest hour. Thank you. And I thank The Lord for giving you Zekey though the time was far too short, he accomplished much. I also wanted to pass on info about Nancy Guthrie. She is a Christain author who has lost two children. Her interviews online have been a blessing to my heart, I could only imagine how amazing her books are. She also runs a weekend retreat for couples who have lost a child. I will be praying for you and your family while you grieve. And I will be praying that many would come to know The Lord in part due to your testimony.

  • Reply March 26, 2014

    Dana

    You are truly an inspiration to all the believers and lost soles who read your posts. I’m heavily thinking and praying for you, Andy, your children, and all other family and friends feeling the pain of this loss. Your faith and strength has been an inspiration and testimony! Thank you for sharing, so deeply, your journey and personal thoughts with us. It’s encouraged me to love-on my children a little more and appreciate the very short time we have with them on this earth.
    I will pray for God to continue to speak through you and to wrap your life in his blessings and love.

  • Reply March 26, 2014

    LC

    Bree,
    Hugs for you! My heart breaks for you and your family to the point I struggle for the right words to say. I know our Heavenly Father is so proud of you and your family for your unwavering faith in the face of such loss. I have and will continue to hold you and your family close in prayer as I also offer praise for God’s blessing entered into your lives through Zeke’s life.
    With love.

  • Reply March 27, 2014

    Rebekah Nyakairu

    Bree- My husband Stephen just happened to show me your blog a few months ago. Stephen went to seminary with your husband. I have been reading your blog and praying for your family. My heart goes out to you during this time. I pray that God surrounds you and your family with His comfort and peace as never before.

  • Reply March 28, 2014

    Carrie Peterson

    Bless you, sweet mother. What an incredible life story your precious son held. And what an honor for me to be privileged enough to be let in just a little by reading this. Thank you for sharing all he was, all you are, and all our Heavenly Father holds for us in eternal glory. Know you are in my thoughts and prayers, as are your husband, children, family and friends. The glory God will get from all of this… I just can’t wait to see!

  • […] with our family) have been a part of their journey in prayer and in love. And we grieve with them. Here is the link to the mother of Zeke’s blog, where she writes that “Zekey is Finally […]

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  • Reply June 11, 2014

    Elizabeth

    This is a beautiful post. He is with the One who gives life and the One who draws that life back to himself and restores it through his Son Jesus. That is our hope and our future promised in Jeremiah. Love and peace to you and your family.

    • Reply June 24, 2014

      bree

      Elizabeth,

      Amen and thank you for the truth you poured out. Blessings

  • Reply June 24, 2014

    beejsteph

    Bree, Andrew And Family,

    Stephen And I Just Heard About Your Sweet Zeke!! :( My Heart Is So Broken For You ALL. It Is So Hard To Lose A Child ..A Brother..And More. My Prayer For You Is That This Zekey Trip Will Bring You Great Memories Of Zeke, As You See All The Things That He Loved So Much!
    Our Deepest Sympathies For You And Your Family As You Walk Through This Journey. There Will Be Days Where You Will Not Know What To Think Or Feel…Or Even Know What To Say..But That Is Okay…Just Be In The Moment & Allow To Happen Whatever Happens. There Is No Right Or Wrong Way To Walk Through This Journey. As Time Goes By You Will Notice That God Will Lessen The Pain And Allow Beautiful Memories To Remain.
    We Will Be Praying For You As You Continue This AMAZING ZEKEY Trip. I Wish We Had Extra Money To Help Out, But We Can And Will Pray For You Daily…That God Will Watch Over You, And Guide & Direct Your Path.
    With Love & Prayers,
    B.J. & Stephen Miller

  • Reply June 26, 2014

    bree

    B.j.,

    Thank you. Prayers are much appreciated. Blessings to you both.

  • […] Zekey loved you each, in different ways. Thank you SO much for loving him so well. What a grand reunion when we are all together again- when we go Home. […]

  • […] Zekey first went Home, I was so relieved. I wanted his suffering to be over. As time goes on, I ache more as I […]

  • […] to seizures (click on #PrayZekey to read more of his story) because of Batten Disease and then his final breath on March 23rd of this year. For the first year and a half of his health declining, we didn’t […]

  • Reply December 22, 2014

    Victoria

    Sobbing in my living room reading this post. Praising God for your family’s faith and Zekey’s life. Blessed are those who mourn.

  • […] This winter has been much like last year- full of snowstorms and record-low temperatures. I haven’t hated it, and a part of me has felt very at home in this season. It was just last year that I found myself longing for winter to stay because I knew what was coming. Zekey would go with the winter. […]

  • […] didn’t plan the day out, March 23rd, Zeke’s 1 year of meeting Jesus face to face. How do you plan out such a day? I just wanted the day to stumble into our lives like a Wednesday […]

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