Cristen's Story- Declaring God's Goodness in the Midst of a Terminal Diagnosis

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In my recent article, 3 Reasons Why Your Story Matters (click the link HERE to read it), I wrote about the power of sharing our stories. When we declare how God is moving in the midst of the storms we face, we defeat the enemy’s plan to discourage and defeat us. We each have a story and it matters!


I’ve invited Cristen to share her story in this space. I met this precious woman many years ago as we planned a bridal shower for a close friend together. Cristen’s journey in choosing to embrace this raw season with faith has consistently inspired so many of us. Her courageous perspective will challenge you. Listen to these tender words from a mighty warrior and the beautiful way God is embracing her family.


I was 29 years old, and just had my 3rd baby. I could hardly see through my tears, and my voice could only whisper, “He’s good. He is good. He... is... good...” It’s all I could say in response to the news we’d just been given. Our baby was only two days old and they told us that her brain was severely malformed. Her life, however long we may have with her, would be marked by trial, sickness and complications. In that moment, I was living every mother’s worst nightmare. Yet, by God’s unexplainable grace, the only thing that made sense in my heart, in my world, was that He is good. It was the one and only hope I could cling to.

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That began our journey of raising a child with intense medical needs and a terminal diagnosis (Miller-Dieker Syndrome Lissencephaly). Although that was almost 8 years ago now, there are many things still burned into my memory from that time:

-The cold conference room with ugly tables and hard chairs, where the medical professionals delivered the crushing news.

-The lack of tissues in the room (talk about a huge oversight!).

-The crushing grief.

-The unknown.

-The heartbreak as we went back to our baby’s bedside in the NICU, gazing down at her perfect little body - knowing it was terribly broken on the inside.

-Realizing the life ahead of her would be filled with pain and struggle.


Most of what the doctors told us in that conference room all those years ago has come true for our girl.

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Waverly is now 7 years old, but her development is much like a newborn. She’s had a feeding tube since she was a week old. Her seizures started at about 5 months and continue to be a daily struggle. She’s had more pneumonias and hospital stays than I can count. We entered into new territory this past fall when she received a tracheostomy.


And yet, after all this time, through each struggle that has come, we can still genuinely say that - He is good.


It may seem foolish or optimistic. Perhaps it appears like a crutch, but the truth is, I don’t know how anyone can walk through the trials of this life - without God. It’s just too much to bear without the hope that He’s working in and through the most unimaginable pain and trials we face.


Despite what someone may see from the outside, each day brings its own struggle and battle for me. To find joy in this journey, when my child is yet again blue from a seizure that steals her breath, to see tubes doing the work for her that she cannot do herself, simply to keep her alive. To see the concern on her sibling’s faces and to talk to them pointedly about their sister’s death: it’s enough to crush even the strongest. Trust me, “the strongest” has never been a way to describe me!


And yet, here we are, almost 8 years later. God has truly been faithful to sustain us. He has been good.

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Have I always embraced this journey? Who could? What mother would say she’s okay with watching her child suffer? The daily care and concern is enough to drive the strongest person to their breaking point.


But it’s the future, the unknown, that has been hardest for me to accept. I spent her first few months, and then years, terrified of what may come next. Seizures. Respiratory issues. Hospice care. Losing her. That last one still gets me more often than I care to admit.


Yet God has sustained and carried us through every step and I know I can trust Him to carry us through whatever lies ahead.


I choose to share our story now, because I know there are others living in the midst of a storm. Maybe you’re in the middle of your trial like we are, and have no idea how things will end up. Maybe you’ve been told, like us, that it won’t necessarily end up “working out okay”.

 Hear me on this: He.Is.Good. He always has been. He always will be. We may not understand or even see every way He’s working in the situation. But because He is God, we can let His good, strong arms embrace and hold us, even in the moments we’re too weak, angry or broken to embrace Him back.


When we cannot see how He will work things out for good or for His glory, we have the promise in Revelation that He will make all things new. Because He let go of His Son at the cross, He’s made a way for all our pain and brokenness to be redeemed.

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So on the days that feel like too much to bear, let His embrace and His promise carry you to the cross. May we fix our eyes toward heaven, when He will redeem His people from the brokenness of sin and His world from the effects of that brokenness. - Cristen


I’m so grateful Cristen took the time to share this piece of her powerful story with us. My hope is that whatever trial you may be facing, you will choose to courageously declare God’s goodness, regardless of what your eyes may be seeing here on earth. Is God good? Yes! Will everything that happens in our lives feel good? No! Friends, let’s choose to remember like Cristen shared so beautifully, a day is coming when Jesus will return as King to this earth. When we repent of our sins, believing in Him and following His ways, we have the promise of eternity with Him. He will redeem each of us and our world from the effects of brokenness someday. He is indeed so very good.


There may be seasons when we feel like He let us down - we aren’t promised happiness - but God promises to never leave us. Does this message resonate with your heart or a situation you’re facing? Check out my article, “Will God Let You Down” by clicking HERE. The same good God who saved us, will embrace us through each trial or disappointment.


I love hearing your stories. What challenges or victories are you experiencing right now? Please send me a message, letting me know how I can embrace you in prayer today!


Hugs,

Jaime