“You are such a great mother.”
This statement always takes me aback. I guess I should be flattered. Friends and family say it and I smile, thank them and try to change the subject. When I hear it from total strangers however, it makes me a little uncomfortable. Who are you? How long have you been watching us? Did I scratch my butt? Pick my nose? Make a disparaging remark to my husband? I am not used to the attention that comes with a special needs child. When I hear the great mother comment I am tempted to come back with something smart-assed. Really? ‘Cuz I just shotgunned a beer in the bathroom. Or Aww gee thanks, my parole officer thinks so too.
My favorite is “You are such a good mother for taking care of her.” Well thanks but, did I have a choice? She is after all my daughter and I love her more than oxygen, water or red wine but really, I didn’t sign up for tube feedings, seizures, therapy and the many issues that come with being Samantha’s mom. And I would give my right arm, left leg, heart and soul to make her better.
Am I still a great mother?
I am a mom. I have days when the T.V. is on, when Samantha is wiggling around on the floor, perhaps a little too long before being repositioned. I have nights; 2:00 in the morning when Samantha is still awake and I am wandering around the house raking my sleep-deprived brain for another strategy to get her to sleep. I curse God, rage at the heavens and console myself with yet another glass of wine.
“I will pray for you.”
I really do appreciate this one. Any healing thoughts sent off into the universe is a good thing. However, after a tough night when I have told the world what I think of their crappy divine plan for me, when I have flipped off the heavens with both fingers, I am really tempted to say. “Well thank you but you might want to wait a day or two; God and I are in the midst of a heavy duty argument. You might not get through.”
I did not write this as my pity party. Well, okay, maybe I did. Bring some Ritz crackers, and that really funky orange cheese in the squeeze can. We can talk about your pain, my pain, examine the ingredients of that funky orange cheese and perhaps the ingredients of our lives. As parents, as humans, as people in this world, we all have pain. Just because my pain, my daughter’s disability, is visible to the world doesn’t make anyone else’s pain any less real. It certainly doesn’t make me a better mother.
“That which does not kill you, will make you stronger.”
I have evaluated the super-beings with super-human strength and they all have issues. The Incredible Hulk, major anger issues. King Kong, a great big monkey with an attachment disorder. Even Superman lived a life hiding his true identity; misunderstood and yearning to belong. I don’t want to be any stronger.
Because it’s just not fair is it? Whatever our pain may be; a disabled child, an ailing parent, cancer, divorce, foreclosure, it’s not the life we signed up for. When I imagined my married, parental life years ago it did not include anything messy or ugly. It did not include tough decisions. It did not include being such a grown up.
“Life is not fair.”
My Grandma, Emma Mae, used to say this to me when I didn’t get my way. I used to think that life was not fair because my brother cheated at monopoly or he got the bigger slice of pizza. My reaction would be to stomp my feet, throw a couple pillows around, pout in the corner. It still is but no one thinks it’s cute anymore.
Emma Mae never told me that the UN-fairness in life is doled out in disease, poverty, death. No one told me that ecstasy and despair are secret bedfellows and that they walk hand in hand. As an adult, moments of shear joy are coupled with moments of pain so intense it’s like someone ripped your heart out of your chest. And I used to think fairness was all about the last slice of pizza.
I now relish the days where I truly am the Supermom. I puff out my chest. Give my best profile shot and stare knowingly into the horizon; my cape flowing in the wind. I’m smarter now though. I keep an eye on my back. The heavens are smiling down and yet still recording the last time I flipped them the double bird. I now keep my pink Wellies and a bottle of Merlot by the door. You never know when life’s muddy slog will get the best of you.
Welcome to Samsmom. I'm Heather and this is my journey as we navigate love, loss, rare disease, hope and resilency. Our family carries a POLG-1 genetic mutation that took my two children, Jack and Samantha and most recently, my brother Ryan. It's not an easy place to be, but here we are- with humor, love and grace, here we are. 