‘I’m concerned about BOTH girls.’ We assumed they were ‘happy and healthy’ babies. Our reality became a movie.’: Twins have HECW2 rare genetic disorder, ‘We’re equipped for what’s to come’

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Disclaimer: This story has mentions of child loss and may be triggering for some.

“I was never the kind of girl who envisioned ‘my perfect family.’ I grew up in a home where I felt loved and cared for; and I was certainly close to my mom, dad and sister. I did, however, determine at a fairly young age that I wanted to do something for God that mattered. I would read stories of those I consider to be in the, ‘great cloud of witnesses’ as Hebrews 12 words it; and I would feel a strange sense that I wanted to be able to be a glimpse of that for someone else someday.

I had no idea that would mean eventually burying both of my precious daughters within the span of two years.

Courtesy of Morgan Cheek

Hugh and I got married in the spring of 2011. He was in medical school and I was working in an extremely fulfilling yet not high paying entry Social Work position. Shortly before we moved to Alabama to begin Hugh’s residency, I quit my job and we headed overseas for a month-long mission trip. It was there I think we both began to sense a vague calling of heart different to what we had grown up around. Something I believe to be common to all of us is that most of the time, what we picture our life looking like versus what it ends up looking like is not the same.

After Hugh and I moved to Birmingham, we joined a church that was very involved in overseas missions. One Sunday, our pastor shared this idea of having a, ‘blank check’ mentality with God. Basically, he was saying that our time, money, and days are all his. In reference to missions, he had those of us who thought maybe we would be called to change zip codes and live the missionary life in a new cultural context to stand. I say ‘those of us,’ because Hugh and I proudly jumped up from our seats. I laugh now because what I don’t think I understood at the time was that my ‘blank check’ mentality was essentially me writing out the details of the journey and trusting I already had God’s nod of approval.

Fast forward to 2013. Hugh was working 60-80 hours a week as a resident; and we found out that we were pregnant with not one but two little girls. My entire pregnancy, while I was extremely sick, was noneventful. I had the girls one day shy of what is considered full-term for twins; and we brought home what we assumed were, ‘happy and healthy’ babies as they say. When the girls were about three months old and not meeting typical milestones, we began to wonder if something was ‘not right.’ When you are initially faced with the reality of disability with one child-much less two- there is a lot of rationalizing and denial that goes on. We spent many months assuming they would catch up or catch on- doing early intervention and going to many doctor’s appointments. It was not until the girls were nine months old that we went to a neurologist appointment where the doctor told us she was ‘very concerned’ about whatever was going on with Ally and Bailey Grace. It was then that we began the search for a diagnosis, a search that lasted two and half long, painful years.

Courtesy of Morgan Cheek

HECW2. That is the ‘not right’ that affects my girls. They are two of about fifty kids in the entire world- the only set of twins. It is not hereditary, which simply means Hugh and I don’t carry the gene and we have no greater chance of having another child with the disease than you do. While the disease is horrible; I would not change anything about my girls for any reason in the entire world. Let me explain.

Courtesy of Morgan Cheek

When we first got the diagnosis, I was simply happy to have some kind of answer. I had watched my girls develop; and as a mom, I think I knew deep down something was different. The diagnosis did not change anything. It did not change our deep, abiding love for Ally and Bailey Grace. It did not change our desire to see them thrive as their best selves- whatever that meant for them. It certainly did not change God’s perfect plans for their beautiful lives. Yet it did solidify to us that what we envisioned for our family and what God had planned was going to be different. But better. So much better.

Fast forward around 4 years after the initial diagnosis- July 13, 2019. I sat on our screened porch- an unusually cool, drizzly, summer day- and held Bailey Grace as she took her last breath on Earth. Hugh’s hand was glued to her chest as he gently informed me when he knew she was about to breathe her last. It was holy and it was awful. It was like a movie that was now our reality. The weeks prior to Bailey Grace’s death were long and painful. The process of walking your child to heaven is oddly similar to birth. As a mom, my instincts kicked in and I somehow knew what Bailey Grace needed us to be for her in those last days. The moment she stopped breathing, I crumbled.

Courtesy of Morgan Cheek

I wailed and cried tears more forceful than I knew existed. Hugh and I had the nauseating privilege of driving Bailey Grace’s body to the funeral home. I had grabbed my Bible as we walked out of our house; and as we drove away from the bizarre reality of leaving our baby with complete strangers, I opened up and began reading from Lamentations 3. Now, I do not know your background when it comes to faith. But if you picture Christianity as a list of do’s and don’ts or some kind of weird religious cult- I would encourage you to pick up a Bible and turn to the pages of Lamentations. Or the Psalms. Or Jeremiah or Job. Really, the entire Bible itself is full of stories of people who were incredibly messed up with pretty odd circumstances. God also does not leave us room to wonder if He is more concerned about loving us or judging us. Through Jesus, He is clear that His entire purpose is that we would know Him and know how unconditionally loved we are. I say that to say that as we drove away from leaving our six year old’s body- I felt the presence of a God who hated sin and death so much that He did something about it. I recognized the truth; to get through this kind of grief, I was going to have to enter into a new layer of my relationship with God. A layer that went much deeper than right answers or my own performance. That first year after Bailey Grace went to heaven was full of honest tears and questions and doubts and pain. But it was also full of the love of a God who sees me in the midst of it all and loves me- and somehow, that proved to be the daily bread we needed.

Courtesy of Morgan Cheek

It is November 24, 2020- a little over a year after Bailey Grace died. Currently, we believe Ally to be weeks away from joining her sister in heaven. In August 2019, Ally began showing similar signs of decline as her sister had- and we knew. We tried some different medicines and such; but by March of 2020 it was clear that Ally was going to begin the road to her true Home as well.

Currently, Ally’s body is frail and declining; yet her spirit is just as joyful as it has always been. I have tried to wrap my mind around the very real story that is about to go down. In ways, it feels like we just stepped of the battlefield of World War I- only to enter into the second. I don’t pretend to understand how we are going to navigate the coming days. I do believe, however, we will be equipped for all that is to come. Not because we are some strong people (we are not). Not because we have done it before so this time it should be easier (it does not work that way in the dying of your child.) But because we have come to know more deeply the love of the God who wraps His arms around us and simply lets us rest as He carries us through deep, deep waters. Six months before Bailey Grace died, we adopted our son James. He is now nine years old, and after being in a home for only two years, will lose his sister for the second time.

Courtesy of Morgan Cheek

How can I possibly trust that God is good when our story is so full of trauma and pain? It’s the still small voice. It’s the voice I hear in the early morning hours as I sit on that very porch where I held Bailey Grace as she died and understood God’s love for us all in a new way by the very nature of His dying for us. Death is cruel. It is ugly and its effects are horrific. I don’t pretend to have all the answers but I have the love of the God who has never left my side in my darkest days. I have a community of friends wrapping around us as they remind us that the light always overcomes the dark. And I have the promise that one day, I will see both my baby girls again in the land where all sad things come untrue. To Him be all the glory.”

Courtesy of Morgan Cheek

This story was submitted to Love What Matters by Morgan Cheek, Ally, Bailey Grace and James’ mom, currently living in Birmingham, Alabama. You can follow Morgan’s family journey on InstagramSubmit your own story here, and subscribe to our best stories in our free newsletter here.

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She has written two books I didn’t know if I should mention them or not. “On Milk and Honey: How God’s Goodness Shows Up in Unexpected Places” and, “Are We There Yet? One Sojourner’s Journey Through Dross Consumed and Gold Refined”.
other headline: ‘Searching for a diagnosis was painful. ‘The moment she stopped breathing, I crumbled.’: They were the only set of twins in the world with the mutation. / (or) My son will lose his sister again.
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