Thursday, 6 June 2019

Dear Voice of Carter,

You didn't show up.

For years I thought you would. Some might say that you did, eventually, just not as  expected. 

I like to think I’m pretty good at figuring you out, but a voice that doesn't form words is impossible to decipher. I never get to know the real you. 

I wish you'd stop hiding. I catch glimpses of you in Carter’s facial expressions, tucked away behind his impish grin or in the crinkled skin bordering his ice blue eyes. I've heard you in his giggle and in his thunderous belly laugh. His pantomimes, his flailing about, and his movement to music are your physical camouflage. Wails and screams of protest reveal your unflattering side. 

You make life mysterious. And puzzling. And downright frustrating. I accept that, begrudgingly, and carry on. But sometimes I just want things to be normal. I want to experience what it would be like to hear you form words instead of grunts and squawks. I want to hear you speak a sentence instead of watching my boy gesture and point. I want to hear the real you, instead of a digitized version dubbed 'Kenny' or 'Alex'.

Carter was outside playing with Jack one winter years ago. Jack came inside. Several minutes passed before I went to check on Carter. He’d gotten himself stuck, legs first, in a hardened, icy snow tunnel. You didn’t help him that day. I could see how he'd struggled. His glasses were thrown across the driveway. His face was streaked with tears. 

You didn't protest and ask Jack to stay outside with you. Y
ou didn’t scream out or call for me when Carter got stuck. You failed him. 

During a family ski trip to Vermont, Carter wasn’t feeling well. He was exhausted from a long car ride and a sleepless night in an unfamiliar bed. By the time he got to his ski lesson he was hot from having to wait inside the chalet in his snow gear. He tossed his cookies right there on the spot shortly after we dropped him off.

You could have prevented the whole incident if only you'd told the instructor that Carter was overheating. Again, you failed him. 

How many times have I had to pick Carter up from school because of you? On the other end of the line, the school secretary always giving me the same basic narrative, 'Carter isn't feeling well. Please come pick him up.’ 

Not once have you explained that there was too much noise, or too many people, or just too much stimulation. You don't provide information to the people around Carter so they can make sense of what's bothering him. He has no choice but to hold his stomach to convince them he is sick - his way of escaping the situation.


When Carter is hurt or sick, your negligence is deplorable. Carter is in distress. I am distressed. You don't tell me where he is hurting or what's making him feel badly. I have no idea what's wrong and I feel helpless.

Do you know how hard it is for me to send Carter to respite activities, to camp - anywhere  with people who don't know him well? Knowing that you won't be there to help him is overwhelming.

You don't show up.

You'll never show up. 

I’ve done everything in my power to replace you with sign language and gestures, an electronic version of you, but it’s not the same. It never will be. Without you, Carter will go through life being minimally understood. His communication will be slow and inefficient. And because of that he won’t express a fraction of what's running through his head. He’ll be left behind. Misunderstood. Complacent. Vulnerable.

If only there was some way that I could bring you here. I’ve tried. Oh, how I’ve tried - with speech therapy, prompt therapy, oral motor therapy, behaviour therapy. It didn’t work. 

It didn’t work. 

It

didn't

work.

Do you know what it would be like to hear you form words flowing from my son’s mouth? What would you say to me? 

The silence has been filled with other noise. It’s so different. It’s not what I expected.

You didn't show up.















Sunday, 7 April 2019

Speechless


Back in October, I responded to a tweet by Minnie Driver: 


Have you seen her show, Speechless?

Minnie plays Maya, a mother of three.

"Maya is a mom who will do anything for her husband, Jimmy, and kids Ray, Dylan and JJ, her son with cerebral palsy."  ~abc.go.com

My family loves the sitcom because we can relate to it. Our family has a lot in common with the DiMeos. The biggest one being that JJ uses AAC to communicate, just like Carter.

I love Minnie's character, Maya. She's quirky, but she's also ruthless when it comes to getting her family members what they need, especially JJ. 

When I received a response from Minnie, I was the one who was 


Friday, 20 July 2018

Words Don't Come Easy

On the page,
From your mouth,
Symbols, sounds
That's where they're housed.

There's more to them.
Words just start
The thought process;
Then works of art.

Do not judge.
Do not assume.
Watch closely and
You'll see them bloom.

Creativity and
Aptitude
Shift perceptions,
Attitudes.

Ongoing journey
Unrecognized.
Relish it
As it's realized.



Tuesday, 22 May 2018

These Days

These days being a mom feels like...
stealing a kiss and a hug whenever Carter is near; his legs so long now, bringing him to a height where his cheek meets my mouth when he’s close. I steal those kisses only to be given a sloppy one in return. But I’ll try and savour them, even though he’ll always be my loving guy and, thankfully, won’t outgrow showing his mom his love. He’ll keep his playfulness too, punching me in the car when he sees (or sometimes doesn’t see) a ‘punch buggy’. His knuckles digging a sharp pain into my biceps, but being rubbed out by his open hand when I mutter, ‘ow’.

These days being a mom smells like...
hockey. The stink of hockey hair from a smelly helmet, hockey hands from sweat soaked gloves, hockey equipment draped in the bathroom downstairs, oozing out the stench of my boy giving it his all on the ice. His determination, his drive, his dedication to the sport he loves, drips from him in a sweaty mess. But when he’s showered after his practises and games, the masculine smell of his shampoo reminds me that he’s on the verge of becoming a man and I want to slow down time and keep him close, keep him little, remember back to when I had to go into the dressing room to tie his skates and help him with his equipment.

These days being a mom sounds like...
an excited, loud girl on the end of a long distance line. A routine conversation consisting of mostly the same information, the same questions, the same responses each night we chat. But the anticipation of speaking and connecting to home is a must, even if it is the same every time.

These days (and all the days of being a mom)...
have music in them; dancing with the kids when they were babies and then toddlers, holding them in my arms and blasting the music. Now, I hold Carter’s hands and dance with him in the kitchen in an awkward effort to reenact our dances of years gone by. 
Carter's got the music in him, his shoulders shimmy when a funky beat plays on the car radio. His brother belts out the words in his off tune voice that makes my inner musician cringe. That voice drowns out his sister who carries the tune beautifully and who knows the actual words. As long as we’re sharing music, that's what's important. It is our connection. It is our outlet. It brings laughter and silliness. We sing like nobody’s listening and dance like nobody’s watching.

These days being a mom means...

facing constant challenges
and embracing ongoing changes.

These days being a mom means...
utilizing my fierce determination to get for my kids what they need most.

These days being a mom means...
celebrating small victories
and accepting things as they are.


Written Oct.2/17

Tuesday, 20 February 2018

Just Keep Swimming


I remember the colour of the pool that day when I watched you stand in the shallow end, fall forward, kick your legs and swing your arms as you swam through the cobalt blue water toward the ladder in the deep end. The sun glinted off the ripples you made as your body moved awkwardly, but successfully to keep you afloat and move forward. The air tasted thick with heat. The green backdrop of our yard and the surrounding trees that hugged our pool area in a protective, supportive way was fuzzy because my eyes were hyper-focused on you. 

This was the moment we’d all been waiting for. You’d been working so hard and your bravery and determination would now shine through. Your giggling laugh risked the possibility of you taking on water as you swam beside your brother whose encouraging shouts kept you moving. And when you finally reached the ladder how many times did you climb up and return to the shallow end splashing back in with an abandonment that sent water all over the slate grey deck? Once, twice, and on and on to the fifth and sixth ‘lap’ from shallow to deep waters. 

There was no stopping you now that you knew you could do it. You were a big guy now, just like your brother. The deep end was yours and you had conquered it. And that’s what is so beautiful about you. It takes you longer to learn things and to summon up your courage to try things, but once you’ve got them, you’ve got them! And you do learn. You do accomplish. You do conquer. It’s just all on your own time, and in your own way. When given the opportunity you never fail to amaze us. 

Oh, how you love the water. It frees you and allows you to be in your own world doing your own thing. Presume competence because competent you are. Look at you go!

(click here to see the video or click below)

(video taken Aug. 3, 2014)





Tuesday, 31 October 2017

Halloween Throwback

We needed a little magic in our lives during the period of time when the picture below was taken, but no, this genie didn't appear by rubbing a lantern. Her name was Bea and she was one of Carter's nurses at McMaster Children's Hospital. She didn't grant us any wishes, but after a three week stay at McMaster what we'd been wishing for finally came true. We were able to take Carter home!

The pictures below were taken fourteen Halloweens ago! Carter was just eight weeks old. He was diagnosed with failure to thrive because he was having a lot of trouble coordinating his eating and his breathing and he just wasn't gaining weight. So, he was admitted to Mac where he got a heap of attention and some fancy shmancy tubes to help him breathe and eat. As a result, he finally gained weight!

You can read more about his early days here



Carter settled in for a nap just in time to head home. I couldn't have been happier.

Fourteen years later, here's 5'4", 100 lb Carter!


Sorry, no Halloween costume (he's not into that anymore). But, if you'd like to see some Halloween posts from days gone by, you can click here, and here.


Happy Halloween!