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. I’ll never forget on their face. Her eyes were sad. I could almost see tears filling in their eyes.
She was captivated at what I was sharing. I was slightly uncomfortable at her witness at emotions because I’m good at suppressing my feelings.
The story I was sharing was one I had shared so many times. 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 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, I can’t even tell you the hundreds of times I’ve heard this statement. There are numerous forms it has been directed toward me:
“God only gives you want you can handle.”
“You were picked because God knew you were 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.
Obviously, God isn’t that well versed in me and my problems. The last thing I am is strong and put together. Also, if God exists, he’s a jerk for thinking I could handle the on-going trauma of my son’s health issues.
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 only way I manage my fatigue is by consuming a pot of coffee each 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.
We experienced so much trauma on a daily basis I had no way to process it. 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. The masks doctors wear scare him. 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. When the alarm goes off, my neck twitches and my heart races. I run to the IV pole and shut it off, so I don’t go into a tailspin.
I’m not handling this at all.
I’m holding on for dear life. More than anything I’m hoping 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, and my temper is short. I’ve slept in over 5 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. I am not handling this.
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. I refuse to accept praise for doing what any mother would do for their child.
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. We know that for all of us to survive we have to get 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 abandon my son?
Abandoning him is not an option. Giving up the fight 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. Because absolutely no one in their life could manage the stress, I incur every single day. However, I do handle it because I love my son.
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.