When Your Child Receives a Debilitating Diagnosis
Heather McCain
I will never forget the day that I learned my son's diagnosis.
Until then, his diagnosis was Epilepsy alone. I had been told his seizures may stop during early childhood. Suddenly, the hope for chances of a typical, healthy life was snatched away.
My son was a year old when he was diagnosed with Ring14, a rare chromosome disorder that can be quite devastating in many ways. I felt like he had just been handed a life sentence and I had never felt so helpless as I did then, knowing I had no control over this.
Helpless wasn't the only thing I felt. There was sadness, anger, and confusion that he had been dealt what seemed like such an unfair hand. I struggled with my faith, questioning why the suffering of a child would be allowed. There were moments I was overpowered with guilt, wondering if I had done something during my pregnancy to cause him a lifetime of one struggle after another.
Until then, his diagnosis was Epilepsy alone. I had been told his seizures may stop during early childhood. Suddenly, the hope for chances of a typical, healthy life was snatched away.
My son was a year old when he was diagnosed with Ring14, a rare chromosome disorder that can be quite devastating in many ways. I felt like he had just been handed a life sentence and I had never felt so helpless as I did then, knowing I had no control over this.
Helpless wasn't the only thing I felt. There was sadness, anger, and confusion that he had been dealt what seemed like such an unfair hand. I struggled with my faith, questioning why the suffering of a child would be allowed. There were moments I was overpowered with guilt, wondering if I had done something during my pregnancy to cause him a lifetime of one struggle after another.
Not only was I overwhelmed with emotion, I was over overwhelmed with new information. I found myself staring into a computer screen for hours on end, desperate to learn anything I could to navigate this new world. Nearly fourteen years later, I am still learning.
As it turns out, I am not alone in these feelings. Watching their child suffer and being in a constant fight for their child's life causes depression, anxiety, and even PTSD in many parents. Studies have even shown that instances of cancer, heart issues, and other serious health issues are higher in these parents.
When your child receives a diagnosis of a debilitating condition, it feels as if you are handed a bomb and told, "Here, figure out how to disarm it. Your kids life depends on it." And from there on out, that is your life - trying to disarm this ever- ticking bomb. You are now in a constant state of action.
As it turns out, I am not alone in these feelings. Watching their child suffer and being in a constant fight for their child's life causes depression, anxiety, and even PTSD in many parents. Studies have even shown that instances of cancer, heart issues, and other serious health issues are higher in these parents.
When your child receives a diagnosis of a debilitating condition, it feels as if you are handed a bomb and told, "Here, figure out how to disarm it. Your kids life depends on it." And from there on out, that is your life - trying to disarm this ever- ticking bomb. You are now in a constant state of action.
Sometimes, no matter what you do, the bomb goes off. Your life is rattled with devastation in the form of seizures, life threatening illnesses, organ dysfunction or failure, respiratory distress, or some other terrible reality. While you are scrambling to pull your child from the rubble, someone tosses you another bomb, and the cycle continues.
Despite the very devastating consequences of my sons diagnosis, I find that each time the smoke clears, he is there, still finding joy in life every single day. Though his diagnosis fully submerged me into a world I only caught glimpses of before - one where children suffer, and where parents endlessly fight for them - it has also taught me many lessons of resilience, perseverance, compassion, and forging paths when there seems to be no way. For those lessons, I am thankful. I don't know that it would be honest to say that I am thankful for the diagnosis, but I am thankful for my son, the person he is, and the person he teaches me to be.
Despite the very devastating consequences of my sons diagnosis, I find that each time the smoke clears, he is there, still finding joy in life every single day. Though his diagnosis fully submerged me into a world I only caught glimpses of before - one where children suffer, and where parents endlessly fight for them - it has also taught me many lessons of resilience, perseverance, compassion, and forging paths when there seems to be no way. For those lessons, I am thankful. I don't know that it would be honest to say that I am thankful for the diagnosis, but I am thankful for my son, the person he is, and the person he teaches me to be.
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