(Written in 2018 in regards to parenting my sons with GM1 Gangliosidosis Type 2)
It’s frightening and almost inhuman how watching your terminally ill child (or any child of hardship) go through mental, physical, and emotion hell without even saying a word can scream into the depths of your very being and make you crumble into a pile of emotions that feels everything, and yet, nothing all at the same time. It’s as if you have just watched someone rip your own heart out and you just look on as it gets stabbed over and over again. You feel every ounce of pain and agony, and all you can do is watch. You can’t stop it. Everything in you as a parent that tells you to make everything okay because your child's suffering screams and wails inside of you. Your heart and soul ache, longing to take all the hurt away but you’re powerless. You grab and hold tight the moments of temporary stability knowing that at any second, it will vanish and you’ll be running blind in the dark to grasp onto something else.
The endless nights of crying seem to pile on in numbers. The moments of yelling at the ceiling toward God to please save you and your child from the insanity that is this disease are beyond counting. You beg and you plead, but you feel that the shadows of illness are going to ingulf you. So, is that all there is?! Darkness and hopelessness?! No, not even close.
There’s more emotion.
Emotion that you never truly appreciate at full value until now. It’s in the midst the moments of tears and hurt when your child tightens their grip around your finger and the warmth of their hand causes the nightmares to disappear. It’s the tenderness of your child’s smile as you hold them in your arms after you’ve lost your voice from calling out to the Lord, and the joy melts away the sadness. Because even though the bad times seem harder, the good times shine brighter and appear in the smallest of acts. Even in a day full of misshapes, the sound of your child’s laughter can linger in your heart, holding peace in the midst of chaos. It’s in those moments, I believe we’re given a chance to breathe, to collect ourselves, and to have something solid to hold in our hearts to go and do it all over again. Yes, there are dark moments that seem to just go on, but the moments of love and empowerment, great or small, are limitless. Hold tight to the small embers of peace and joy. In them is the power to kindle fires that cannot be easily extinguished. Those flames will leave your heart on fire long after the darkness fades.