There are few things I dread more than having to venture into the city to go to a medical appointment. Perhaps because I’ve now spent the bulk of my adult life sitting in a waiting room because of my desire to have children who are either born broken or born with a tendency to try and slice off their digits at every given opportunity.

I’ve done my time with the medical establishment. Which is why it seems a cruel hard fate to know that today I have to make the long drive into the city, pay for parking, wear one of those ugly hospital gowns that never seem to snap shut properly and therefore flash everyone in the room with a delightful view of my arse crack and then lay down on what is basically a metal coffin and listen to the obnoxious clanging of the MRI machine as it takes pictures of my back fat.

It’s going to be awesome. And I’m so not shaving my legs for it.

To say I’m not really excited about my afternoon appointment is a bit of an understatement. Especially since I’ve been down this road before more times than I can now count and it leads to surgery, more pain and me walking around stooped over a bedazzled cane as my dad offers to give me an enema.

(For some reason the man is obsessed with fecal regularity. Especially mine. As a postoperative gift, instead of the typical flowers most daughters get, he brings me a box of stool softeners. I wish I were kidding.)

Let the good times roll!

However, as pessimistic and irrationally cranky about my own experiences with the medical establishment and my mucked up back, I have nothing to say about the treatment my children (dead and alive) have received in their short little lives.

We are blessed with a fabulous children’s hospital and surrounded by expert medical peoples who go above and beyond the call of duty to ensuring all my children keep their digits while ensuring my youngest lives to see another day.

Jumby’s life hasn’t been the easiest, starting from the day he was born prematurely and weighing one pound four ounces. My kid was as big as a block of butter. He survived his size and the plethora of health issues that happen when you are born a micro preemie.

He survived the abuse he received thanks to the medical establishment and he fights daily to overcome his existing disabilities. (For those of you who are unaware, he’s legally blind, deaf, developmentally disabled, and quadriplegic who eats through a tube and will remain diapered for the rest of his days.)

But Jumby is awesome. Regardless of all his impairments, this kid just keeps on thriving. He has a sense of humour that is inspiring and spreads more joy than a diseased tick can spread Lyme disease.

But life isn’t always easy with him (understatement of the week alert!) and there are times I’m rendered exhausted by the sheer enormity of what it means to tackle this many disabilities at once.

This most happens when Jumbster is having a bad day with pain and spasms and there is nothing we can do to help him medically other than love him through it.

It can sometimes suck.

I’d move mountains to make his life (any of my kids’ lives) better. Pain free. Healthy.

Even if that mountain was medical marijuana.

And that is what I’m yammering on about in my latest Momversation video. Which I hope you will take the time to watch.

I am so sorry.

I’m sorry I couldn’t protect you.

I’m sorry I couldn’t give you the childhood you deserve.

I am so sorry for each strip of innocence that has been torn away from you before you were ready.

I’m sorry for dead brothers. For battered babies. For grown up atrocities committed against you.

I’m so sorry I couldn’t be a better dragon slayer for you.

I’m sorry for every tear you have cried, for every wound you have received, for each and every scar you now bear.

I’m sorry your father and I couldn’t protect you from all that life has thrown at our family, and I’m sorry I won’t be able to protect you from everything that looms in your far off distance future.

I am sorry for the flashing lights, the lawyers and the courtroom.

I’m so very sorry for every nightmare you’ve had because of this. For the fear you still carry deep in your heart.

For the pain you endured and likely will still endure for days to come.

I’m so sorry I couldn’t protect you from any of this.

But I am so proud of you, my child.

I’m proud of your resilience and your strength.

I’m proud of the way you stood up and said, “This was wrong.”

I’m proud that you wanted the truth to ring loud and clear. I’m proud you stood up there, alone and vulnerable and withstood the battery of a trial in the hopes this would never happen to any one else.

I am in awe of your bravery. Your dignity. I don’t know that if our places were reversed I’d have the strength to endure all that you have.

I’m in awe of your dogged perseverance of joy.

I’m in awe that even in your most vulnerable moments you clung to your truth and held fast like a beacon of light in a storm.

You have a grace about you that you likely don’t see just yet, but I hope one day you will.

You shine in a way I never will, never could. I’m amazed that you’re mine.

I love you so much, and so much more with each day that passes.

I am so, so proud to be your mother.

And yet.

Still.

I am so very, very sorry.

There are days when it sucks being responsible for smaller life forms.

Like when you notice a fish floating at the top of your fish tank because you may have not cleaned the water recently.

That totally sucks. No one likes a fish killer.

Or when your dog starts pushing around his food bowl with his nose only for you to realize you forgot to buy dog food. Again. And no matter how many times you pour Cheerios in his bowl, he still gives you the side eye and accuses you of being a bad doggy momma with his hound dog expression.

That sucks.

It sometimes feels like I am barely responsible enough to wear adult sized pants let alone be in charge of a family of smalls and various assorted non-humanoid life.

They just keep demanding more and more from me. Like food. And toilet paper. I can hardly keep up.

Which is why I was happy to escape my house on Friday and Saturday to take the girl child to a volleyball tournament. The dogs where barking, Jumbster was grouchy and Frac had been sick since Wednesday night breathing his toxic germs all over the place.

Frac wasn’t feeling well. But after several days of listening to him moan and bitch about feeling like crap I was happy to escape for a few hours to go sit in a hard plastic chair inside a smelly gymnasium and watch a bunch of teenaged girls hit a volleyball.

As a mother with severely disabled children who have real medical problems, I have absolutely no patience for the pathetic sniffles of my healthy children.

Which is why, on Sunday morning when my eldest son came into my room at 530 in the morning to wake me up to tell me his stomach hurt I told him to suck it up butter cup. I mean really, did he expect me to drag my butt out of bed to pour him some Pepto Bismol?

It was the flu. Drink some fluids, takes some over the counter medication and go to sleep. Or better yet, go talk to your baby brother about what it means to have real medical problems. Sheesh.

At 10 am, Frac was still whining and I was becoming short tempered with him. “Stop whining. I know. Your tummy hurts.” It was all I could do to not snarl at him.

It appeared Frac was another victim of the annoying man-cold and rolled my eyes at his male whininess. Seriously. I carried small elephants for almost ten months and then had them claw their way out of my girlie bits and I never whined this much. Boys.

But at noon, I started to listen.

It only took some tears to get my attention. My Frac is many things, over sensitive, a tad lazy and maybe even annoying at times. But he’s never a crybaby.

And yet here he was crying.

Finally, my mommy instincts were paying attention.

By one pm, I knew Frac didn’t have the flu. By 130, I knew I had to take the poor kid to the emergency room.

An hour and a bit later, he was admitted to hospital.

By 6 pm I was signing permission forms to have my son’s abdomen dissected like a frog in a high school biology class.

Frac’s last words to me before being wheeled into the operating theatre? “I told you my tummy hurt.”

He must have missed the signs that I was drowning in mommy guilt. You know, what with him busy writhing in pain from having his appendix explode inside of him.

(Side note: Did y’all know they supposedly take out an astronaut’s appendix before sending them to space? Or that the cow is one of the only mammals that use their appendix? The things one learns inside an emergency room.)

Frac is going to be fine. He’s recovering nicely. And he’s lording it over my head that he was right and that I was wrong. And I’m never allowed to tell him to ‘suck it up’ again.

I’m sure that’s a promise I’ll be able to keep for a few days at least. All bets are off when he is loafing in bed at home, ringing a bell and demanding I wear my mom pants all the time.

It’s bad enough I’m going to have to grind my own coffee for the foreseeable future. I don’t even want to think about what it’s going to be like to have yet another (temporarily) disabled child at home.

I should probably just find new homes for my pets in the mean time.

If history is predictive of the future, the smalls under my care may have a problem.

Sorry kid. You were totally right. Enjoy hearing me admit that now because IT WILL NEVER HAPPEN AGAIN.

 I love you.

“You’re such a retard.”

“That’s so retarded.”

I’ve heard both of these sentences spoken within my earshot within this last week.

A family member spoke one of them.

Clearly the years of my campaigning on the internet to end the use of the R word have not translated well in my real world experience. It’s easy to stand up on the internet and write essays on why you shouldn’t use the R word, to place the internet on notice. But I’m finding it much more difficult to stand up against the endless waves of ignorance when I can see the whites of peoples eyes when they drop the R bomb in my lap.

It infuriates me that I have to keep educating on how dismissive and demeaning this word is, not just to my son, and to me but to everyone who loves a person who may be labeled with the dreaded R word.

It breaks my heart when my niece comes up to me and excitedly announces she has a joke she wants to tell me and the punch line is about being a retard.

My extended family drops the R word. My siblings have used the R word. They love the Jumbster. I can see it in their faces when they hold him, it reflects with every careful cuddle they share with him, every loving kiss they drop on his forehead.

But the reality of raising Jumby and raising Jumbster’s siblings doesn’t impact them immediately, unless I thrust him in their laps and try and cajole them into changing his diaper. Their reality is far different than mine. Jumby is just another family member, one they accept as their own but one they don’t really understand.

It doesn’t occur to my family members that every day I shoulder the weight of what it really means to parent a child with such extreme disabilities. They understand he has to be tube fed, and chauffeured around in a wheelchair and diapered. They know he can’t speak, or walk or dress himself.

But the nuances of his life and what it means to live with a plethora of disabilities doesn’t affect them. They don’t have to worry about the endless medical appointments, they don’t struggle daily to keep him limber, and they don’t worry about breaking his bones every time he needs to be dressed. They don’t feel the weight of a thousand boulders resting on their chests thinking about his medical stability and worrying that this moment may be his last.

Nor should they have to. Boo and I adopted Jumby, no one else. They shouldn’t worry about whether Jumby has a thousand tomorrows or just one. They don’t have to lose sleep about the quality of Jumby’s daily life, or worry about what his future holds. That’s what Boo and I signed up for. It’s our problem to solve about Jumby’s long-term life goals. To agonize over whether he should be institutionalized or not in the future. The only real responsibility Jumby’s extended family has is to ensure his safety in their presence, to love him and to make him know he is loved.

So when they drop the R word, they don’t know they just shot a hundred arrows of hurt into my heart.

The R word continues to slip out. And I continue to stand up, both in real life and in the online world to say that is not okay. That is my son you are talking about. That little retard you just made a joke about, that could be my child.

It still affects Fric and Frac. It breaks their heart and chaps their arses when it is a school friend who pollutes their ears with this word.

We are all standing on the shores of ignorance and discrimination, fighting for the world to see the boy we love and to cease the unending use of such a hurtful world.

It’s tiring. It breaks my heart. And I stand before you to shamefully admit that more than once I’ve heard that word used by someone I know, or like or even love, in real life and in the cyber world and have done nothing. Said nothing. I remained silent; because it was easier, because I’m tired of pointing out that every time you unthinkingly use that word you are minimizing the struggles of disabled people and their families. You are demeaning, mocking and disrespecting a society of people who have been forced to endure more hardship and struggles than most, simply by nature of their birth.

It’s exhausting. And being the primary, often single caretaker of two teens and a fragile, overgrown, forever infant already exhausts me..

But that doesn’t mean this isn’t a battle that isn’t worth fighting, just because I’m often too overwhelmed to pick up the armor, to busy plucking out the arrows of your hurt from my heart. My children deserve to live in a world free from this contagious ignorance.

So today, I’m once more standing up before you, asking everyone to think before they speak. And I’m thanking people like Ellen Seidman who has stood beside me, for her own family, her own child and wrote a powerful post on what happens if you ask people to stop using the R word.

It’s not easy standing up for what you believe in when the cacophony of the world threatens to drown out your voice. When the internet says you have no dog in this fight simply because of the title of your blog. When strangers blatantly mock you and your family and when the world wants to simply stick their fingers in their ears and pretend they can’t hear you.

I may not change your mind; you may still use the R word. But I will continue picking up my shield to fight this battle. Even when it seems exhausting and futile to do so.

Jumby deserves it. And so do you, even if you don’t know it.

Fric is getting ready for battle. I’m right beside her.

Where I belong.

Jumby is growing. Which, for a child, isn’t particularly surprising. But as a kid who faces an uphill battle and who was dangerously underweight when we brought him home, is a cause for celebration around these parts. Every ounce he packs onto his teeny little frame means it’s one ounce less I can see his ribs sticking out of his body.

My boy? He’s a bony little thing.

But with every drop of weight he adds to his body, I worry.

The week before we adopted Jumbster was the week I damaged my back unexpectedly. We brought him home and within days I was broken, flat on my back for the better part of two months, unable to move. It wasn’t the best way to welcome our fourth child into our family and since that time I’ve had back surgery and a very long road to recovery.

My back isn’t what it used to be. While for the most part I’m no longer hobbled with constant pain, my back is damaged enough that I can barely bend to put my socks on without groaning in misery. Lifting Jumby means forethought and caution and more often than not it means wincing in pain.

There is no spontaneous sweeping my boy into my arms and swinging him around with joy. There are few moments of me holding him in my arms and dancing along with some music as he bounces in my arms.

There is a whole bunch of carefully assisted lifts and holding him in my arms as my back is carefully supported and praying to God the kid doesn’t bounce my spine out of my skin. My kid, God bless his cotton socks, seems to think I’m his own personal trampoline.

I’m managing for now, what with the Jumbster being only 35 pounds or so. I’m managing with my teenaged kids doing most of the heavy lifting of him as often as possible, picking him up and passing him to me so that I don’t have to bend and stand up with him.

But I’m acutely aware there will be a day when Jumby weighs too much for anyone to simply bend over and pick him up. There will be a day, not far off into my future when Fric and Frac have stretched their wings and flown the coup to find their own freedom, leaving the Jumbster and I alone to our own devices.

And I’m worried.

I’m worried I won’t be able to lift his wheelchair into the back of our vehicle. I am worried I won’t be able to pick him up to diaper him, clothe him, to love him.

I’m worried there will come a moment when he simply exceeds my limits. Every hard fought ounce my kid puts on brings us one ounce closer to that moment and I’m scared.

I’m scared his health will take a sudden turn for the worse. A seizure will take what gains he has made away from us all. An infection will set in that he won’t be able to bounce back from. I’m worried he will simply stop, the way my Bug stopped. No warning, no explanations. Just another long walk out of a hospital holding the remains of what was once my life.

The fear, it seeps in and steals my breath and I struggle to find air to get through it.

I worry about his schooling and how utterly unprepared our school board is to handle a child with such complex needs as the Jumbster’s.

I worry about his adulthood and wonder what that means for Jumby. What will he do if I’m not here to help him? Visions of him being stuck in a nursing home, in a chair or a bed all day bounce in my head. My kid would die if he couldn’t explore his world. He seeks the sun like a cat, follows it all day long, chasing rainbows and sunrays.

I’ve never seen a grown man slither around on a floor before, would he be allowed?

Fear taunts me and creeps in unexpectedly. It finds the chink in my armor and needles its way into the core of my being. It haunts me and tries to rob me of the very joy that is being Jumby’s mother.

Every day I smile through the mist of fear that swirls around my feet, trying to kick it loose, shake it free.

I’m scared I won’t be able to be the parent my son deserves. I won’t be able to give him the life he has earned. I’m scared he won’t know I love him as much as I have ever loved anybody else before; that he is so very much my son even if we don’t share the same DNA.

I am scared he doesn’t know I’m his mother. That he loves me only as much as he has loved every other stranger that came before me.

I’m scared I love this kid so damn much if anything ever happens to him I wouldn’t be able to survive it.

So I’m just here, whispering truths through this fog of fear, waiting for the sunlight to peek through once more and carry with it the joy that comes from loving Jumby.

Carry on.

Joy.