I’ll never forget the first time I shared my son’s story with an individual I was meeting for the first time. We were sitting, and they had asked about my son’s journey.
I shared the time he was on life support fighting for his life, and I remember the look on their face. Their eyes were sad, and I could almost see tears filling in their eyes.
She was captivated at what I was sharing, and I was slightly uncomfortable at her witness at emotions.
The story I was sharing was one I had shared so many times before, and I am so disconnected from the story that I can rattle it off with little to no emotion.
As emotion continued to fill their face, I remained stoic and tried not to make eye contact.
As I finished my story, her head bowed down, and it shook quietly.
She then said to me,
“Wow, he’s such a miracle. You are so strong. God must have known you could handle this.”
My face which was already blank went pale. I tried to hide my discomfort in the statement, and my stomach dropped to my feet.
Awkwardly, I smiled and nodded my head.
Over the course of 5 years, each time someone meets us and hears my son’s story all too often this statement is reiterated to me. There are numerous forms it has been directed toward me:
“God only gives you want you can handle.”
“God picked you because he knows you are strong.”
“God only gives special children to special people.”
Whether you believe in God or not, the statement implies that somehow up in heaven God decided you were strong enough to manage the day to day rigors of raising a child with incredible needs and health issues.
Apparently, God isn’t that well versed in me and my problems because the last thing I am is strong and put together.
The truth is if God thinks I can handle it, he must have been drunk when he made this decision.
These well-meaning and well-intentioned individuals that rattle these sentiments off to me haven’t seen me in my worst moments.
They meet me in the few moments I have time to put myself together, look presentable, and go out into the world. However, they are not witnessing me in the crippling and debilitating moments where fear and panic has taken over my soul.
They don’t see the bags under my eyes that I have covered with layers of concealer and powder.
The fatigue that I feel is reduced by the 10 cups of coffee I have inhaled throughout the day. No one knows just how poorly I am handling this situation.
In the beginning days of our journey, I was so sleep deprived and exhausted I had no time to process the gravity of our situation. I moved to auto-pilot from one moment to the next.
Each crisis was filled with trauma for my son and me, and as we have made our way through every event, the post-traumatic stress has built up in us.
We have triggers that set us off.
For my son, it is the lights in the operating rooms, masks are worn by providers, and band-aids that remind him of wounds from IVs and lab draws. For me, it’s the beeping of alarms that can send me into dark panics.
Alarms that alert for low oxygen, low respirations, or feeding pumps can take me to dark places.
The feeding pump alarm I cannot escape, we use the pump daily, and every day my neck twitches and I run to the pump to turn it off, so I don’t go into a tailspin.I’m not handling this at all.
I’m holding on for dear life, and I’m hoping that every day I can make it through this life without losing my cool.
Most days I’m praying to whoever is listening that I can manage another crisis, handle another meltdown, and can have the energy to fight for his care.
Advocating for him is exhausting, and if God thought I could handle the fight it takes to get him services, medical care, and fair education, he had to have been drunk.
There is no way I have the strength to fight for all the needs my son needs and deserves.
People have no idea how frequently I shake my head and slam my forehead into my hands on a daily basis. I don’t have energy or strength to fight this hard.
Fighting for him to go to school shouldn’t be this hard. Ensuring teachers and administrators adhere to his IEP and keep him safe, should not take hours and hours of work on my part.
My nerves are frazzled, my temper is short, and my body has not had a good nights sleep in over five years. No part of me is handling this situation.
If God thought I could handle it, he indeed must have known that for years I would drink too much wine and overeat food to suppress my feelings.
I would watch pounds of weight pack on my mid-section, my face swell, and my pants no longer fit. I hid from the world, isolated myself from everyone around us, and refused to face the reality of our situation.
Being around anyone that had a child that was healthy or typical, sent my anger and jealousy into overdrive.
If God gave him to me to me because he wanted me to be happy, I guess God wanted me to be drunk, stuffed full of food, and alone.
The only reason I am doing all of this is that I love my child.
I know he deserves the best in life, and he deserves the same access to a life that the rest of society enjoys.
He deserves to feel good, to learn about the world, to socialize and make friends, and he deserves to have a better quality of life.
I am not stronger than any other mom that loves a child. There is nothing about me that is super-hero in strength, and I should not be applauded for merely doing what a mother should be doing.
As the years go on, instead of handling the situation, we deal with each moment as it comes.
Each day can present a new crisis, and we know that for all of us to survive we have to move through the day. The only other option would be to give up, let go, and abandon my child.
What kind of heartless mother would I be to do this to my son?
Abandoning him is not an option, and giving up the fight for him is also not fair to him.
No, I’m not handling this situation the best as I could, but I’m not going to give up on my child.
I don’t believe God thought I could handle it, but if there is a God I do believe he/she knew I would love my child more than anything, and I would do whatever I could to make sure my child has the best life possible.
That doesn’t make me strong; it doesn’t make me more capable of anyone else, it merely makes me a mom.
Don’t tell me I can handle this situation.
Just tell me I’m doing an excellent job as his mom.