There is an unwritten rule out there about Special Needs Moms and I feel the need to challenge it. You know, the one that says we have to be hopeful, strong, happy, and above it all at all times. The one that says we can't give in to a moment of weakness over what is looming in the dark (medically) for our children. The one that says any hint of sadness in our eyes means we must be spending all of our time dwelling in despair. The one that causes otherwise very nice and compassionate individuals to stick their foot in their mouth and bark out things like, "Don't be so negative, you have to stay positive" or worse, "This too shall pass" (pass? Did you really just remind me that my son is going to die? THANKS, ASSHAT.) Well guess what, guys? Positivity won't cure my son. I can be happy happy happy (yes, that's a Duck Dynasty quote) but it won't stop Little's muscles from deteriorating deteriorating deteriorating.
Who decided that I had to be Molly Friggin Sunshine every day? Where in the world does it state that I, as the mother of a child with a terminal condition, cannot ever grieve?
Why do you expect so much more from me than from yourselves?
I am an imperfect human. I have mood swings. I have bad days. I have a heart so full of love for my husband and child that the idea of something hurting either of them brings me to tears. I have heartstrings that can be yanked, and a soul that can be briefly crushed. I forget to "give it to God" sometimes. I hit the ground in sobs when horrible realizations about a life with Duchenne come rushing at me like a freight train.
This morning I was making coffee and out of nowhere, one of those DMD trains hit me. Smacked me right in the gut and took my breath away for a minute. I made the mistake letting it out and after the hugs and promises of prayer (BEST!) the scolding started to trickle in. "Stop ..... ....". "Don't ........." "You shouldn't....." Now I know these people meant well, but for whatever reason, when a mother like me has a moment of pain show through, people feel the urge to shake their finger at her. Why? Why can't I break down once in a blue moon? You're allowed to get upset about standing in an extra long line at Starbucks, but I'm not allowed to cry over the erosion of my son's legs? Punch yourself in the face.
Do you understand what Duchenne is? Do you understand that it will - not might, WILL - kill Little eventually? And by eventually, I don't mean when he's 78. I don't even mean when he's 48. Try 18. Or 14. Or 23. Do you fully understand what I mean by "In a wheelchair"? If you think that equates to just not being able to walk, then no, no you don't. Andrew will not just lose the ability to move his muscles, he will literally become a bag of bones. There will be no reaching over to scratch the mosquito bite on his elbow that is driving him crazy. He won't be paralyzed. He'll be non-ambulatory. There is a huge difference. A paralytic wouldn't even know he has an itch when bitten by a mosquito. One who is non-ambulatory will feel with the same intensity that we all do when we have one, he just won't be able to do anything about it. He will not just be rolling around on two wheels, he'll be in something like this:
I know that sometimes, the offender says what they do because they are ignorant. Other times, they are caught off guard and sometimes, they genuinely have no idea how condescending or clueless they sound. I also know that sometimes the offender makes a stupid remark back to us because they are so uncomfortable with the topic that they just blurt out anything they can think of to end the conversation and run away. Things like:
"It will be okay" *Nope. It will never be "okay" that my son is losing his strength, little by little, each and every day.
"Don't dwell on it" *Huh? Who decided I was dwelling there? Do you know me at all?
"But that won't be Andrew" *I'm sorry, have you had a chat with God? Did He tell you Andrew would be the first person in the history of Duchenne to keep his muscles?
"He'll get better, I just know it" *It's not a cold, folks, it's a genetic disorder.
"You have to think positively" *See my Phil Roberston comparison above.
"Maybe you'll be glad when......" *WRONG.
"Stop being so negative" *Since when is an expressed moment of pain equal to a personality change?
Things that actually are helpful when I've sunk to my knees in prayer and tears:
"I'll keep praying for you"
"That makes me sad, pisses me off, and gives me motivation to research, pray, and do anything I can, all at the same time" *Thank you, Marta - nailed it.
"I love/care about/am thinking of you, Mister, and Little"
A hug. You don't even have to say anything.
Support. All we need in that hour of pain is your judgment free, unconditional support. I need you to realize that this is a moment I am having, not a lifestyle change. It really pisses me off that some of you act as thought we need your permission to feel our feelings. I have to face the realities of this, spending every second on a puffy pink cloud of ignorance will not help any of us in the long run. Let me have my moment so that I can adjust to it and move forward. And I will adjust and carry on. I always do. My hope is in the Lord and so I cannot wallow in the darkness for long. He always lifts me up. Always. I have never been one to stay miserable and I don't foresee that changing. I do, however have my days when it lurks around for a while. This is a heavy disease. No one can get through it without tears, grief, or anger. I am allowed to take pause and consider what is happening to my son. This disease gives me the right to cry. And you? You have the right to lift me up or walk away. You do not get to pass judgment or criticism on a life you know nothing about.
So please remember - hug, love, support, prayer, and I will turn to Him and I will pull out of my sadness whenever it hits. I will settle back into hoping one of those treatments comes to fruition before it is too late for Little. I will figure out what the newest setback in his physicality means for us and go from there. Onwards and upwards, right Russell?