For the longest time, and still now, I have the same disturbing thought. When I see someone with a brand new baby, and I can see the love that is expressed beyond words, the care, devotion and the worry that only a parent knows, I want them to feel what it feels like to have their child diagnosed.
I want them to understand that there is a very clear before and after a diagnosis, because you are never, ever the same.
I want them to feel the coldness that is a waiting room in a doctors office on diagnosis day. The vacant looks from the front office staff as they check in their child on a day that they will never forget.
I want them to look at their precious, perfect child and I want them to feel the weight and the heaviness that exists in the space where they have to say goodbye to the future they imagined.
I want them to be faced with the waves of grief as they crash over and over, often in the most unexpected places, and for the most unsuspecting reasons.
I want them to feel the painful sting of watching other children play functionally around theirs, knowing that they are reaching their milestones and their child is years behind.
I want them to understand the anger that comes with being in this helpless space as they acquire diagnosis after diagnosis. Because it’s not just one. And with each diagnosis, comes a specialist, and a litany of appointments and a number of expenses.
I want them to know what it’s like to lay next to their child as they cry, in a ball with their eyes squeezed shut, unable to communicate what they are feeling.
I want them to know what it’s like to have mountains of paperwork and dozens of meetings, and hours of worry, just to be able to advocate for a level playing field at school, which in the end never ends up being all that level.
I want them to know the depth of anxiety when they realize that their child’s personal safety relies squarely on their shoulders and vigilance, most likely for the remainder of their life. There are no breaks. No moments to let out the collective breath they sucked in when they walked into that doctors office and were handed a diagnosis.
And for the longest time I wrestled with why I felt these seemingly sadistic feelings, and then this morning, I realized it’s because I see things completely differently now, and wish others understood just how I do.
I want others who are not chosen for this path to recognize the depths to which parents like us are impacted. Our son was diagnosed almost five years ago and our wounds are very much a part of the fabric of who we are.
I want others to understand the daily weight of the uncertainty. None of us are guaranteed a long life but when we were told there was no prognosis because our child’s mutation is rare, and there are children who have died with the same condition, we are painfully aware of this lack of guarantee.
I want people to understand that we are different people and forever changed, in good ways and bad. We’ve slowly been molded, shaped and changed into these new creations that allow us to be resilient and yet fragile. Though we bounce back, it still hurts each time we get a new diagnosis, each new progress report and each moment when grief taps us on the shoulder and reminds us of just where we’re at and where we’re not.
I also want others to understand that this special life of ours isn’t devoid of joy at all, in fact, it’s rich with faith, love and community, and it’s fueled me as a person giving me new purpose, vigor and determination.
I share the hard parts not to isolate out the good but to expose the painful side in order for others to get a sense of what we experience, because that is when empathy replaces sympathy and our love for one another can grow.
So when I look at you gazing at your baby, I don’t wish you or your child ill. I want you and everyone else to know that there are many of us deeply impacted by our child’s diagnosis who now see our world through a completely different lens. And maybe, just maybe, if you understood how we are forever changed, this special world of ours wouldn’t feel so foreign.
