An important message to the parents of a newly diagnosed child
I see you, I hear you, and I understand what you're going through
It’s been over six years since my son Cayden was born with infantile-onset Pompe disease. Today, I consider myself to be an experienced parent when it comes to this disease. However, I’ll never forget what it felt like to hear the news of Cayden’s diagnosis. It’s almost an indescribable feeling that’s hard to understand unless you’ve been through it.
I wish I could be there for every parent at the beginning of their Pompe disease journey. Hearing that your new baby, which you’ve waited nine long months for, has an incurable, rare disease isn’t easy. It feels like the world goes mute and all you can think about is what lies ahead.
It’s an understatement to say that it’s a lonely time in a parent’s life. Friends can’t entirely understand, nor can family in many cases. Of course, they’ll support you and your child in any way that they can, but none of them will truly know what it feels like to watch over your sleeping child with tears running down your face as you think about the lifetime of obstacles ahead of them.
To the parents of a newly diagnosed child, I see you, I hear you, and I feel for you, because I know what you’re going through. I was you. I wouldn’t wish this journey on anyone, but this is the important part: I wouldn’t change a thing.
For years, I pondered what life would be like for my son. Would he make friends? Would he walk, talk, and eat on his own? Would he grow to despise the enzyme replacement therapy that treats his disease? How will he adapt to and overcome the challenges he’ll face?
All of these are great questions, and I already have the answers to some of them. But the question I ask myself the most now is, what’s next? Pompe disease has become second nature to us. It’s a part of our lives, and it’ll be around for as long as Cayden is. So we’ll just continue to roll with the punches.
If you told me years ago that we’d eventually find the groove of things and just go with the flow, I would’ve thought you were crazy. As it turns out, I was the crazy one! Sure, it can be a lot to manage the various therapies, infusions, doctor appointments, and more. But somehow, it all works out. At this point in our Pompe disease journey, I’m just used to it all. The hectic schedule doesn’t even faze me anymore.
I have to give a lot of credit to Cayden, because he handles everything so well. For someone his age, I’d expect a lot more complaining. But this is his life, and he doesn’t know any differently, which is something that took a while for me to realize.
He has proven that he’ll find a way to get over the hurdles this disease throws his way. I just wish I’d realized this years ago and saved myself all of those sleepless nights. Everything truly worked out. Nothing can stop Cayden from reaching for the stars, not even his rare disease, and for that, I am blessed.
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
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Comments
Janet Nuckolls
Thank you, Keara. Powerful article with sage advice. Our eldest daughter and her husband blessed our family with the birth of their little boy. He brings us so much joy. We'd never heard of this disease until his diagnosis. It's a challenge we're inexperienced with. Grateful to find uplifting words like yours on our search for the right tools to be of help.