What Does Real Hope Look Like? #CureBatten

My Facebook, Instagram and Twitter scrolling has been full of super stars such as, Justin Timberlake, Jennifer Laurence, Jennifer Garner, Reese Witherspoon, Ryan Gosling, Channing Tatum, Jessica Alba and many others asking that we rally together and raise money to find a cure for Batten Disease. #CureBatten

Wait, what?! No one knows about Batten disease! I didn’t know what it was until July 30th of 2013 when my son’s continued decline in health over the last year and a half, regardless of what we tried to do, all made sense. #PrayForZekey wouldn’t get better- we would just continue to watch him get worse until Batten Disease took his last breath on March 23rd, 2014 and he was then able to run into the arms of Jesus. Finally, the suffering had ended and our grief which started long before that day, continued down a new path without him in our arms.

My heart aches watching the video of Director Gordon Gray’s beautiful daughters, Charlotte and Gwenyth. Their story is so much like ours. Our Zekey’s form NCL2 seemed to grab his motor skills quicker than the ones of their girls but it’s the same, Batten disease.

We will donate in honor of Zekey, as have people I have never met tagged me and said they donated in honor of him, too. It blesses my heart so much. I hope, each of you reading, would consider donating even just $1 here in honor of our Zekey. They are saying it will take $10 million to get the funding they need to do more research and find a cure. I say, it will take that plus a miracle.

I wonder…is God going to use Gordon Gray’s resources to find a cure here on earth? How wonderful that would be! How amazing that as parents who would hear such a devastating diagnosis, would then be told, “And here’s our plan. We have found a cure, you’re one of the lucky ones.”

Instead of, “We will continue to control the seizures and make him as comfortable as possible. We will get him care at home to help you out while you enjoy your last few years with him.”

Today, my husband took our 3 other children who are not affected by Batten disease out for a day of fun so I could catch up on some work. I spent my quiet morning out to breakfast with my beautiful momma and found myself making my way up a block to Zekey’s gravesite, for the first time I was all alone.

I found myself stroking the grass just as I did Zekey’s thick, brown hair, tracing the Z in his name, Ezekiel as I talked to God. I shared the dreams I had for Garment Collective and for Andy’s book he’s writing as he shares Zekey’s story and the Hope we have. I asked God to continue to use Zekey’s story through my line, and Andy’s writing to share this everlasting Hope we have in Jesus. I don’t ever want to stop sharing this eternal Hope that goes beyond the grave.

As I slowly drove away I got to thinking. Hope. Gordon Gray has hope. He hopes that $10 million will be raised and he hopes that in the time before Batten disease takes the life of his beautiful girls, there will be a cure found. I’m with him! I hope for that, too!

And then there’s the what-if? What if $10 million and time and really intelligent dr.’s still aren’t enough. What if the brokenness of this world, the disease that has affected the lives of their family and of ours and friends all over the country isn’t stopped? Where do we go from there?

I hoped meds would heal Zekey. I hoped the intense diet changes we made would heal Zekey. I hoped the combination of those plus a treatment in Cincinnati would heal Zekey. That they bring my boy back.

My earthly hope quickly turned to an eternal Hope. The earthly hope only took us so far. It didn’t bring peace in our chaos, joy in our sorrow, strength in our weakness.

There was a time when we had to choose something deeper and truer. As we fought for our boy here on earth, we needed to fight harder for the Truth of Hope in Jesus. As Christ-followers, we hadn’t really had to practice that kind of Hope. Sure, we’d lost grandparents, but they had lived a long, good life. We were sad but we knew they’d be in Heaven. We easily grabbed onto the Hope of heaven because life had taken it’s course- they got to live.

When your beloved child, who you wished would continue to grow and become strong, live a life full of meaning and joy and do big things, get married and…

When they are sick and suffering, you first fight and pray for healing and the earthy hope that comes with meds and diet changes and a cure. You blog out your story and beg for your readers not to donate to find a cure, but to pray to our Heavenly Father, to reach down and rescue our boy with His healing hand- we asked, #PrayForZekey and you all did! Thousands rallied and prayed, and lifted us up! Thank you!

On March 23rd our #prayforZekey turned to #ZekeyLives. Christ is our Hope.

Sometimes, our Hope in Jesus looks like sitting on the grass next to your son’s old body, tears washing away the freshly cut grass that fell on his stone and remembering the sweet boy we had for 4 years, 4 months and 4 days.

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I couldn’t see what I was taking a picture of and didn’t pose. I just snapped it but I love that I captured Ezekiel 11:19 and the sewing machine tattoo I used for our Garment Collective logo. This is Hope here on earth. It’s birthed from great sorrow and suffering but redemption comes, even here on earth! God takes our brokenness and brings such beauty, if we let Him.

Jesus at the cross conquered Batten disease, our sins and made a way for us to leave this life and walk into the glory of Jesus’ presence, new bodies, no tears, no disease, for all eternity.

This is our Hope. This is what gets me through…I will see my boy again.

2 Comments

  • Reply June 12, 2015

    Aaron Keller

    This was so encouraging. I constantly need reminders of the hope available in Christ. I got it again. Thank you for sharing. You said here what I was thinking last night after reading about the Gray family.

  • Reply June 13, 2015

    Anita

    Your words and story are testimony of His goodness and presence, seeds of truth that are sowing into the future, while strengthening those in today. Thank you for believing Jesus. I say, AMEN, sister!

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