I know my son lives with a life threatening disorder. Many days this reminder doesn’t live in the forefront of my mind, but it does always live in the back. There are days that are harder than others to push it down, especially days when we lose another of our community.
While processing another loss, our son’s disorder PMM2-CDG, sneaks up on me like a dementor* and whispers in my ear I can take him too. Uncontrollable tears ensue. While this dementor looms over me I can’t help but feel helpless and afraid. I begin to feel terrified of germs and my child catching a cold while shopping at the grocery store. I anxiously think about our next inevitable hospitalization. I start to worry more and more about making the decision to send him to preschool but I know I can’t protect him from everything. More than anything I want him to learn and grow but above all I want him here. Alive and healthy, looking up at me with his ever-so-charming grin.
Along with my fear there’s anger. I am so angry that our life is one of unknowns, worry, and loss. Life is unfair and I understand there’s no way to get around that. I also know that living a life with a medically complex child is not for the faint of heart. I am so angry at our CDG dementor that I want to kick and scream at him but as I do this my fists go right through him. Fighting him is futile. No matter how hard I try and fight nothing changes, he stands strong and tall staring at me. He refuses to leave, reminding me that we aren’t immune to him.
Sadness, fear, and anger overwhelm me but that’s not all I feel.
Admitting my relief is one of the hardest statements to make. I want to take those words back, but I wouldn’t be being honest with myself. My tears fall on my son and relief washes over me. He is here. I can feel his clammy hand on my face and kiss his soft cheeks. I try to stuff the relief down inside me because I know that guilt is soon to follow. I feel immense guilt that I am relieved. I am holding my son, gazing into his eyes while there is another family saying goodbye to their angel. As I rock him our dementor lingers close to me, never straying far. I shed tears for another loss, put myself in the shoes of the parents and sob. My grief is real, but I know that in no way does it even come close to touching how those parents feel.
The losses of our community are incredibly hard. We love each other’s children as our own, and when one loses the fight we all feel it. I used to try not to feel it. It’s just too much. The reality we live is heartbreaking.
Through the tears I start to feel courageous. I can’t let the dementor get the best of me. I can’t let my fear take over. I pick myself up and remind him that we are strong and we will persevere no matter what. I remind him that I won’t let my fear control me and because of him we will make a difference. I remind him that I will take each day as a gift and not take anything for granted. We will make changes because of him. We will become better because of him. I thank him for teaching me to love deeper and live fuller. I stand tall and show him that this is a fight I will fight, and win or lose, our fight, my son’s fight, will be worth it. With this, he starts to retreat. No longer is he taunting me with the ultimate fear of losing my son.
As our dementor takes his place in the back of my mind I am reminded that life is so precious. Life is short and no matter the journey, make it worth it. Give a few more hugs and kisses. Embrace every day and make memories. And never, ever, take anything for granted.