Our Messy, Beautiful Summer Week 5
A guest post by Heather Bowie
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 responsible 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 inconsistency 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?
YOU GUYS- GLENNON HERE. WHEN WE TOLD HEATHER WE WERE RUNNING HER STUNNING ESSAY TODAY, SHE WROTE THIS BACK:
Wednesday would be great. Aidan is having major spine surgery that day so it will be wonderful to experience a kind of togetherness on the internet.
OF COURSE!!! OF COURSE TODAY WAS THE DAY. FRIENDS, SHE’S IN THE HOSPITAL WITH AIDAN RIGHT NOW! LEAVE HEATHER SOMETHING TO READ THAT WILL FILL HER UP WITH COMFORT AND STRENGTH AND INTERNET TOGETHERNESS.
I love this woman. TRUTH TELLING WARRIOR!!!!
Heather Bowie is the mother of two wonderful boys and has been married almost 20 years to an amazing Irishman she met in a castle. Her oldest son Liam loves to run and her younger son Aidan loves to drive his power chair. Aidan has an undiagnosed developmental disability and Epilepsy. Her blog Team Aidan was birthed out of the desire to tell her story, and in doing so, appreciate the journey. You can also find her on Facebook and Twitter.
This post is part of Momastery’s Our Messy, Beautiful Summer series.
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