Here’s my messy truth: soon after my son Aidan was born thirteen years ago I wished he would die.
Aidan was born with complex medical needs and spent the first three months of his life in the neonatal ICU. When he came home on oxygen and with a g-tube, without a diagnosis, prognosis or any medical staff to reassure us, I just wanted him to die quickly.
It’s such a horrid, shameful thought that I carried my secret burden alone, not even sharing it with my husband. I was lonely, overwhelmed, exhausted, and scared.
Because of Aidan’s medical issues, I couldn’t feed my own child nor did he even have the ability to gaze at me or coo in response to my voice. He was a stranger, really, hardly present. Those blissful feelings of maternal love were nowhere to be found, though I faked them well enough and smiled proudly at my son in front of others while grieving and hiding in a fetal position at night.
I wanted him to die, not because of who he was, but because of who I was – a mistake of a mother.
I felt responsbile for him, obligated to try to love him, but all of that pressure just left me a sinking ship, weighed down by shame and failure.
When Aidan was almost a year old, another mom of a child with a disability saw my tired, distraught self and told me this, “You probably don’t think you can handle raising Aidan right now but I promise you will find your way. I use to pray for my son to die and now I can’t imagine life without him.”
She didn’t know my secret because I told her; she knew it because she lived it.
That friend set me free that day and gave me just enough hope for the next.
I’m thirteen years into raising a child with a disability and I’m not that same traumatized mom I once was. Sure, it’s still draining and sometimes lonely and scary. I wonder if I’m making the right choices in fighting his seizures. I wonder if my inconsistancy is holding him back from being more independent. I haven’t changed any laws, written policies, nor started a foundation.
But I’m sharing my messy truth today in hopes of setting someone else free. You are not alone. You are living a seemingly unbearable moment. You are allowed to be overwhelmed. Your pain and grief is real because it’s yours. You are not a mistake, and neither is your child.
And here’s my beautiful truth:
My willingness to step into fear and push boundaries and learn new things and support other parents and get involved and love this incredible child has changed me. The hard work of finding my way has been messy, rarely easy, but always worth it.
The truth is I can’t imagine my life without him because, really, isn’t he beautiful?
This post is part of the Messy, Beautiful Warrior Project, a blog link-up for the paperback release of New York Times Bestselling memoir, Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life by Glennon Melton of Momastery.