The journey began with a deep sense of confusion and worry. Our sweet boy, Jackson, had always been a bit different from other children, and we couldn’t shake the feeling that something was wrong. It started with small signs, nothing obvious at first, but they were enough to make us wonder.
As parents, you trust your instincts, and we knew that our child wasn’t developing in the way we expected. What followed was a whirlwind of doctor appointments, tests, and unanswered questions, each step bringing us closer to understanding, yet also pushing us further into the unknown.
We made appointments with neurologists to run tests, bloodwork after bloodwork, and then there were the EEGs, MRIs, and eye exams. It felt like a never-ending cycle of waiting. Each day was filled with uncertainty as we tried to balance our hopes with the reality of what we were experiencing.
And through it all, the one thing that kept us grounded was each other. My partner and I leaned on one another in ways we had never had to before. We found comfort in the small moments of calm, trying to remain strong for Jackson, even when we didn’t have all the answers.
Finally, after months of appointments, testing, and more waiting, we received the diagnosis that would forever change our lives. In October of 2016, we learned that Jackson had Congenital Disorder of Glycosylation (CDG), a rare and complex condition that affects the body’s ability to process sugars, which are essential for the development of organs and tissues. It was like a punch to the gut—devastating and overwhelming, but also somehow, a moment of clarity. Now we had a name for what had been happening with our son.
When the doctor entered the room to deliver the news, I could tell immediately that something wasn’t right. There was a heaviness in the air. As she explained the diagnosis, the words barely registered at first. “We think Jackson has Congenital Disorder of Glycosylation,” she said.
I couldn’t even process it. “Wait, what? He has what?” were the only words I could manage to say. “Will he walk? Will he talk?” I asked, my voice shaky, as the tears began to fall. The neurologist, who had been so calm, looked almost as lost as I felt. She admitted that it was such a rare disorder that even she didn’t know exactly how to help me understand what it meant for Jackson’s future.
“The more severe cases pass away by the age of one,” she said, her voice soft but matter-of-fact. “Here are some websites where you can learn more.”
“Pass away? Not my child,” was all I could think. I felt like the air was knocked out of me. I wasn’t ready to hear those words, not for my son. It was the cruelest thing anyone could say, and yet there I was, hearing it from a doctor who had no answers to offer.
I was devastated. All the dreams I had for Jackson’s life—his first steps, his first words, his independence—felt like they were being ripped away from me. I thought about all the things we wouldn’t get to experience together, and the world felt impossibly heavy. I couldn’t imagine a life without my son. I didn’t know how to face this new reality, and it took every ounce of strength I had just to keep breathing.
But I wasn’t ready to give up. I couldn’t accept the idea that my son’s life would be so short, so painful. I started researching furiously. I read everything I could find about CDG, desperate to understand what was happening to Jackson and what we could do to help him.
I reached out to others who had children with disabilities or rare diagnoses, finding comfort in connecting with people who truly understood the pain and confusion I was going through. Their stories gave me hope. They had been where I was, lost and heartbroken, and yet they had found strength to keep going. I held on to that hope with everything I had.
My family and friends were a lifeline through it all. They were there for me when I cried, when I screamed in frustration, and when I just needed someone to talk to. They didn’t have all the answers, but they listened. They offered comfort when I felt like the walls were closing in, and their love was a constant reminder that we weren’t alone in this.
Every text message, every phone call, every visit, made the burden a little lighter. And slowly, I started to understand that, even though Jackson’s journey was going to be much harder than I had ever imagined, he wasn’t alone either. We were in this together.
Jackson’s diagnosis didn’t come with a blueprint for what his future would look like. It didn’t offer any guarantees, and it certainly didn’t make the road ahead any less difficult. But what it did give us was a sense of purpose. We knew that we had to fight for him, to give him the best chance at a happy, fulfilling life, no matter what challenges lay ahead.
As the days passed, we began to adjust to this new reality. I learned that CDG was more than just a diagnosis; it was a challenge that required constant adaptation and care. Jackson needed therapy, support, and a team of doctors who specialized in conditions like his. But above all, he needed our love and our strength. We had to keep pushing forward, even when it felt like the world was standing still.
And Jackson, my sweet boy, he amazed me every day. He may not have developed in the ways we had expected, but he developed in his own way. He learned to communicate in ways that were uniquely his. He showed us what it meant to find joy in the smallest of moments, to celebrate every achievement, no matter how big or small. He was teaching us how to live in the moment, to appreciate every milestone, even the ones that didn’t look like the ones we had imagined.
As I reflect on those early days, I realize that the most important lesson Jackson has taught me is resilience. Despite everything he’s gone through, despite all the uncertainty and heartache, he’s still here. He’s still fighting. And so are we. We’ve learned that a diagnosis doesn’t define a person. It doesn’t define Jackson. He is more than his condition. He is our son, and he is our strength. And together, we will continue to face whatever comes next, with hope in our hearts and love in our souls.
Jackson, you are the light of our lives, and we will fight for you every step of the way. You’ve already taught us so much, and we know that there is so much more to come. You are our miracle, and we are blessed to be your parents.
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