Dad Says He’s ‘Always Had The Answers’ Until His Son’s Devastating Diagnosis Left Him Feeling Stranded And Lost
halfpoint | Canva The anonymity that the internet provides often brings out people’s worst impulses, as there’s little accountability for online cruelty. Yet sometimes, communities created through virtual forums are places of hope, where someone can say how they feel and hear support echoed back to them.
One father’s post online about his 15-month-old son’s rare syndrome, which has since been deleted, was a prime example of finding reassurance through online spaces. The dad felt ‘stranded and lost’ after his son’s devastating diagnosis. “I posted when he was 5 months old, 8 months old, a year old, 15 months old, and now, but this time I have his official diagnosis thanks to whole genome sequencing,” the dad began his post. “I'm shattered. I'm broken. I'm falling apart, and this is my only outlet to let that be known.”
“I'm his father, and I can't fall apart because I need to be there for my wife and two other daughters,” the dad proclaimed. He explained his son’s diagnosis of “an insanely rare syndrome where less than 400 people worldwide are known to have it or a version of it. Basically, his DNA deleted a gene. An incredibly important gene that basically [raises] the level of what you can do as you age, so as his body grows like normal, his mind and capabilities are not.”
He explained the intensity of developmental delays his son was expected to experience, stating, “We've been told this is permanent. We've been told he will never speak, never look at us in acknowledgment, interact with friends or family, feed himself, and possibly never walk.”
He expressed the depths of his sorrow, saying, “I had my first son, my little boy, and instead of being able to relish in the excitement of that, I live in constant fear that these doctors will be right.”
The dad shared that while he tries to ‘be tough, smile and joke,’ deep down, he feels stranded and lost after hearing his son's diagnosis.
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“I don’t know how to get my wife and I get through this,” he continued. “'I’m not looking for words of encouragement. I'm just putting this all out there in the ether because it's getting too hard to hold it all in.”
The dad spoke to the ambiguous sense of relief that accompanied his heartache, explaining, “Now that we know what he has, we can stop searching, and there's a certain level of peace in that. We can spend more time on him and love him.” Yet he also expressed his anxieties for his family’s future.
He asked, “What's going to become of us as a family? How can I get us all through this? How do I see other toddlers younger than him running around, laughing, and playing, and not be crushed by it? How can I cope with this without affecting those around me? How can I help him? What do I do?”
The dad shared that his son’s diagnosis shattered his perception of his role as a parent, saying, “As a father and husband, I've always had the answers. I've always found a way. But this, I'm stranded and lost.”
The dad spoke his fears aloud and received support from other parents in similarly impossible situations.
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“Father of a daughter with a rare genetic variance here,” one parent on the online forum introduced himself. “I don't have much to offer you other than solidarity. It will be hard, but you will see happy times as well. Keep going.”
Someone else validated the intensity of the dad’s emotions, stating, “I would be worried if you weren’t gutted by this, you’re going to go through a grieving process that is normal and valid and in no way makes you a bad person for experiencing.”
“It’s okay to be taken aback when a wildly improbable genetic disorder lets you know you’re gonna need to adjust your expectations,” they continued, before leaving them one single word of advice: “Grieve.”
A dad whose son has a rare chromosome duplication offered his perspective, noting that “the diagnosis time, while it’s a relief to finally have an answer, is absolutely soul-crushing and distressing.”
“You are allowed to feel that way, and don’t let anyone tell you or your family that you aren’t allowed to feel that or the grief and expect you to just move on straight away,” he said.
He continued, “I can say that it does get better over time, and it becomes part of your life, but you are a changed person, and that process is hard. Some things will always be hard, but you just get stronger (most of the time), some years will be hard, some years will be great with progress and joy and your own version of normal.”
His nurturing words show how important it is to allow ourselves to feel the full range of our emotions, even when they’re hard and messy, and even when we’re hurting in ways we never knew possible.
There’s no clear answer to the direction this dad and his family will move, now that their son has been diagnosed.
What is clear is that they deserve time to mourn the life they expected, the future they wanted. Ultimately, this dad is not alone, even though he might feel like he is. There is inherent strength to be found in vulnerability and in sharing our hardest parts with those around us.
Alexandra Blogier is a writer on YourTango's news and entertainment team. She covers parenting, pop culture analysis, and all things to do with the entertainment industry.
