L'interview de Zoé

Don't want another late night...

Well, a lot has happened recently and I don't even know where to begin. Zoé's language is absolutely blossoming. She is like a little adult, explaining everything, expressing her wishes, her desires, what she wants to do, and most importantly what she doesn't want to do.
She has a wonderful sense of humor and is a little "chipie" (mischievous one) when it comes to twisting my elbow.
Her personality is evolving everyday and I am in awe of how far she's come along.
Her body feels stronger.
Today at hippo therapy they had her standing on all fours on top of the horse, lifting her head up, keeping her hips in alignment knees joined.
They had her ride back flat on top of the horse, twisting her arms to grab the horse's tail, doing sit-ups on the horse.
Playing Simon says: "put your hands on your head, touch Kiwi (the horse's) ears, etc.
She then had to find little stuffed animals on the barriers, ordering the horse to stop so she could retrieve them. Opening mail boxes, finding the letter addressed to her with little surprises nestled in.
It makes me so happy to see her thriving so much.
Of course, there are the questions, the stares, the sideway glances, but they will always be part of our daily life.
In time, Zoé will learn to speak her own mind and either explain what the issues are or she won't because it won't matter. I feel stronger these days.
Our trip to NYC was amazing. Grammy Gina and Aunty Wendy were wonderful babysitters and I did fully enjoy revisiting the Big Apple with old friends and reconnecting with the city. My favorite part was the High Line this old chunk of railroad suspended above ground that the city of NYC transformed into a wonderful passage of greenery intertwined in the middle of new and old buildings. A sinewy vein of green through the grey concrete jungle of Chelsea.
Zoé fully enjoyed Central Park, her favorite was getting into Taxis, and spending time with her relatives and her new found friend, Muguet.
We came back refreshed and Zoé's been doing much better in her 9 weekly therapy sessions, because she also needed that break, to regenerate her body, recharge her batteries.

Enjoying a hot bath...

 

Little Fish

The Princess and the Frog

Disability blind

I like to think that most people are color blind. We accept differences, and we do not discriminate. In the world we face there is also the question of disability blind. Are people aware of differences, or can they bypass what they see on the surface?
There was a time in my life when I tried to avoid looking at people with disability, it was hurtful, it pained me, it still does, but how different it is now.

I took Zoé to school the other day and she asked a classmate if she would race with her.
Sure enough, the little girl flew like a bullet and my Zoé kept chugging along, knowing full well that she had lost the race, but it didn't faze her, she kept running, awkwardly but not giving up.
I wondered whether Zoé was happy?
After all, she had instigated the race, she had asked for the challenge and the fact that the little girl would keep on probably made her day. We ought never to forget that it's not the destination that counts but the journey. For Zoé it wasn't the winning that mattered, just the race.
It still pained me to see her wobbly legs, her arched back and flailing arms as she followed through to the finish line down the hall.

Zoé is changing and is now more and more challenging.
"Maman, why do I have to do speech?" she is challenging the therapies. I told her so that she could make beautiful sounds, Fs. Bs. Ps, Ms. What am I supposed to say?

She no longer wants to follow her PT therapist up the ladder, down the slide. She has a mind of her own and it is harder and harder to have her follow through.

Socially, we are still working on her interaction with kids and particularly her classmates.
Kids don't seem to interest her, but again she is the youngest in her class. Could it be due that since she was 4 months old, she has been handled one on one by adults, constantly engaging her, playing with her, resorting to incredible tricks in their hats.

She lacks attention, but again isn't it age related? I don't want to sound like a neurotic mom that reads signs with everything Zoé does.

Her sleeping has changed, unfortunately, she's up at 3:30 am, then at 6:00. She no longer naps.
I actually have a window right now because I set Zoé in her room with a story on CD (Snow White) and after the CD ran its course, I didn't hear a sound ...I thought that was odd...I just peeked in and she is asleep on the floor with the book resting on her lap.
She needed that nap, and even if it's just a couple minutes, she will be more refreshed for our 4th therapy of the day at 5:15 when she goes to SNAP (Special Needs Aquatic Program). I like it how I say OUR 4th therapy of the day. It definitely feels like it.
I also worked at Zoé's school twice this week, and I like to see what goes on, as well as to work on my hopscotch skills. I had not jumped in 25 years, it's hard when you start looking at things in decades, and when it's three of them, you know you've aged!

My battle is the constipation. BM (Bowel Movements). I spend my day doing laundry, wiping poop off the potty, the floor, the tush, and it gets me soooo depressed. I know Zoé cannot help it, but I wonder when she is going to be able to do it on the toilet. I dream of that day when I won't have to slice prunes, pour Miralax in a hot chocolate, and serve prune juice at every meal. Zoé suffers from GI (Gastro intestinal) cramps, and I know what she goes through because I also do. It hurts, and nothing really alleviates the pain. It's just that the lining of the intestine is full of minuscule muscles that get all cramped up.

It's funny when I revisit that time in place when I was pregnant and I was going on that trip to Italy, or so I thought is was and I read the sign "Welcome to Holland" at birth, I never thought in a million years that I'd be where I am today. Battling a potty! Driving to zillions of hours of therapy, paining for my sweet Little Miss Sunshine (Thank you Caroline for reading the blog and referring to my Zoé with such a cute nickname!), crying in my heart about her wobbly legs, her fragile body. Thank goodness for her personality. You can read it in the twinkle of her eye, you can read it in her awkward laugh, you can feel it when she gives you the biggest hug one could ever wish for.
I need to follow the Buddha, "Live the moment", don't look at tomorrow, it will be another set of challenges, but we'll conquer those boulders, we'll charge against the odds, we'll scream as loud as we can that we can do it, hand in hand, like the best team that we are.
(Is that a pep talk or what?)
But for now, we need to live, love and rejoice.

A new task at hand

Yes, a new task at hand. After stretching Zoé's body in and out, after having built bolsters and found new sets of goals and activities to strengthen her, I now am being taught how to deal with her oral motor interventions.

As most Myotonic Dystrophy patients, Zoé lacks facial muscle and expression, because her muscles have atrophied or were never developed from birth.

I can remember trying to squeeze her on my breast hoping she would latch on and the pain of not being able to breastfeed her for she had no sucking strength...and as I result I never produced milk though I pumped for 3 months
hoping she would get the few drops of "gold" I could produce. Then I got over it..

This was the first red flag that something was terribly wrong. No cry at birth, open mouth in utero (I can see it in the few shots I have of Zoé in the womb...just thought she was yawning...) and open mouth on a lot of pictures.

Yet, the oral motor therapy and speech therapy she is given have paid off. Her mouth is stronger as I can ask her to close it shut more than before. I ask her to do "Kissy lips" and then she presses her cute little heart-shaped lips into a nice soft kiss.

The new set of exercises I have to perform though, are not easy, I feel I am invading her with my fingers in her mouth, stretching her upper lips, and lower lips, performing stretches with nice names like the "Butterfly" where I place my fingers at the center of her upper lip and compress the tissue and move away from center until the finger and thumb pads line up with the edge of the nose. We do the side to side lower lip stretch, the corner lip stretch, the horizontal lip stretch, the resistive lip stretch, the Z stretch for the nasal bridge,etc. I have to get a probe to work on her resistive chewing.

Anyway, the point is not about the exercises but about the fact that Zoé never complains. She has to endure so much. Not too long ago she told me she didn't want to do her therapy session with the physical therapist who comes to our house. I think her life has been regimented for so long that now she has probably come to a point when she says enough is enough.

But I will never say it enough, true and hard work pays off. It might sound corny, but we wouldn't be where we are today if we hadn't been doing all of this day in and day out. I also realize that all the toys or games we do, have a purpose. I never buy something for the sheer pleasure of it being fun, I consider its cognitive input for Zoé, how it might help work her fine motor skills, her gross motor skills, etc.

I thought the pictures I posted would be a bitter sweet ride down memory lane. Though Zoé is still beating all odds, I do worry about how things will evolve. I still suffer from the loss for her, the ballet class she won't attend, the soccer game she won't partake in, the jumprope skill she won't master.

But hey, my sweet pea is still a wonderful singer and a skilled horseback rider, and a true imaginative reader and story teller, so I must focus on all the good stuff. Focusing on what she CAN do.

I must remind myself that I am not responsible for Zoé's difficulties (Though she shares half my genes and those that carried Steinert through her body and mine), I am responsible for helping Zoé grow through them.

She doesn't cease to amaze me. She has a very strong personality, and I should embrace that as well, though it is sometimes really hard to deal with, when she thinks it is her way or the high way! She is my angel who deals with life and all it has to offer and all she has to conquer.

For those of you out there, who have a child diagnosed with MMD, here is the website for the oral motor work: www.beckmanoralmotor.com. Hope this helps.