The black and white photograph.

I have been meaning to write about many things. How the conference in DC brought back so many thoughts. You kind of stare at the demon in the face. The disease is there, in the room, palpable. and then I look at an old black and white photograph of our family members affected, and in the grain of the photograph, I see the disease seeping through, how insidious it is, how viciously cunning, it comes and permeates the entire family album.

I am back on the blog after almost 2 years of blank pages. I realize I need to write, to feel that the ball is rolling. Where should I start? Last time I wrote I mentioned the steep incline of the demands of 3rd grade, and now Zoé is entering 5th grade!
The biggest, most challenging, hurtful thing that happened is the new affliction Zoé is facing. I will call it the AA: Alopecia Aerata.

Zoé is now bald.

That's it. I said it.
No more photographs of the gorgeous brown curls, the mane cascading on her shoulders, the crown of flowers.
It is so painful to watch, so painful to accept, so dreadful because it can scar you so much more emotionally than physically.
And the stares of kids who don't understand, and the prayers of people who think she had chemo, and the indifference of peers, peers who tolerate our kids. It is not acceptance, it is tolerance.
Despite this new emotional rollercoaster, Zoé stays true to herself, holding our hands, showing us that she is still standing tall and unfazed. Or so it seems.

At school, she started mentioning the idea that her life is not worth living. She has told me numerous times; "I don't like my life, I am weird, I don't fit in." And I try to remind her that she doesn't fit in because she was born to stand out. To teach all of us a lesson so we can learn to cherish how good we have it, how we should all live life to its fullest possible core, to not let challenges beat us down, that when we are brought down by defeat, we learn to stand up again.
But the pain is still there, festering, oozing out at times, when we are caught off guard.

That's it for today. Getting back on the blog is painful.

Families Helping Families: Sarah and David Berman

Families Helping Families: Sarah and David Berman

DM Heroes, Video of Zoé's first steps...tears to my eyes

I

Back online

Well, it has been so long. So much has happened, I don't really know where to start.
We are back at school, and it is third grade and the steep incline I envision like Mount Everest, taking small steps to reach base camp, and trying to peek at the towering mountain, never giving up. Multiplications, cursive writing, 5-paragraph essays and the daunting task of keeping the faith, that we will break through.

Summer was fun, yet our 3 day stay in a Cypriot hospital was quite a scare. Seeing Zoé in her hospital bed, so weak, so fragile, threw me back in time. Like in a vacuum, as if we had never left the Neo-Natal Intensive Care Unit where she was brought on Day 1 of her life.

I have taken advantage of this hiatus away from the blog to read a lot:
The Invention of Wings, by Sue Monk Kidd
The Goldfinch, by Donna Tartt
All the Light we Cannot See, by Anthony Doeer
Moroccan Blue, by Douglas Kennedy
and now, Eric Molinié's book entitled "Vivant!" (Alive!) which has been a difficult read. It describes the author's fight against time while suffering from a form of muscular dystrophy.  He eloquently describes what his life has become and how well he has adjusted to the disability that doesn't define who he is, but on the other hand, he says "it sharpens his consciousness and this myopathy gives him benchmarks that delineate time."

Zoé has been mesmerized by a video that celebrates the paralympic contestants in a video entitled "Yes, I can". She seems to relate to them, never giving up, and knowing that "even i it is hard, I can do it!" That is my trooper. Ready to zip-line across a room, climb a wall, stand on a horse, butterfly swim across a pool. She is my inspiration.

I hope this finds you well wherever you are.

See you soon on the blog.

Don't Label Me

I love this poem, it captures the essence of what Zoé probably feels at school everyday. And not just Zoé, all children. I must remember to keep it in mind when I help her do her HW.

I hope you enjoy.

TEACH ME: DON’T LABEL ME©
By Barbara K. Given, Ph.D.
I am not “disabled.”
I learn differently.
I am not “handicapped.”
I take in and use information that is somewhat unique to me. Others may see me as handicapped when they
insist on teaching me in ways through which
I cannot learn or when they insist that
I demonstrate my abilities in ways that are
comfortable for them but not for me.
It is not I who is out of step, inadequate, handicapped or disabled.
It is the system.
I don’t want my teacher to be my pal,
but I do want a model and a friend.
I don’t want my teacher to make life easy for me,
but I do want a teacher filled with a
conviction that what he or she teaches is
important enough for me to learn and
I do want a teacher who has enthusiasm that
encourages me to keep working until I learn.
I don’t want to be the teacher’s pet, but
I do want to be treated as a person worthy of
respect in spite of my learning style or
because of it.
I don’t want a teacher who demands praise, but
I do want a teacher who understands my
respect even if I show it in an awkward and
sometimes hostile way.
I don’t want a brain transplant, but
I do want to learn as much as
I am able.
I don’t want a label, but
I do want an appropriate education.
I don’t want to be called “learning disabled”,
but
I do want to learn.
Teach me. Don’t label me. 

No easy feat.

It has been a few hard months, adjusting to the demands of 2nd grade, the lack of social emotional component in the school curriculum, the fact that every recess at school is spent alone in the library and the lack of empathy kids show.  I hurt at drop off and pick up. I hurt when no play dates are offered, or reciprocated, I hurt and I try to not show Zoé.

I have been thinking about what I wrote a couple of years ago when I first started this blog...How Zoé's disability and mine made me a better person, and in fact, I think I was misguided. I am not a better person, I am a different person. Different in every way, ready to conquer all challenges, ready to advocate for my child, ready to not let go of the fact that we all deserve a chance. It has been so hard to drop Zoé off at a school where she is misread and misunderstood.

I have explained to the teachers how her body impacts her every day life,  how her muscles weaken, how her lack of focus and attention stem from this fatigue, how Zoé can do great things if she is given the time to think, if you break down the tasks, if you shorten the exercise, if you give her a chance! If you use the "reset button",  a strategy that has been working at home, when Zoé loses control and feels overwhelmed, we pause, take a breather, massage the weakened body, run twice to the fireplace across the living room and start again.

Teachers find it hard to adjust to such demands. I get it. You have 23 kids in your class, you cannot provide your attention to one kid.  But when that specific kid has an aid, you can use the aid for other classmates and as a teacher you can focus 3 minutes to the child that is having a tough time understanding the math exercise..

I have been teaching in preschool for the past 6 months where some of my students are difficult, with sensory issues or anger management. I try to use the reset, I try all I can to help these kids. I have no aid, but there are ways you can help.
Anyway, I am a bit angered at the system, and wish parents could instill empathy and acceptance in their children.
Life is hard, and tough and it is no easy feat to keep the chin up.
Hope this finds you well wherever you are.

Fall Update

Dear blog readers, it has been too long, I know. The summer has been long gone and every day, I think I will find the time to fill you in with the latest news from our side of the screen. So where should I start?

Summer was glorious as usual, Brittany by the seaside, Annecy by the lake, Trento in the mountains, culminating our trip with a romantic getaway to Venice, and its vaporettos, its chichetis, the gondola ride, incredible food, and the most splendid time spent with Morena, Massimo, Francesco and Lorenzo.

Back to the states was an arduous trip with Zoe not sleeping, wanting to walk the miles of aisles, back and forth. When we had to recover from jet lag. It took Zoe 5 days of restless nights, eating cereal and watching videos at 3 in the morning.
The first day of second grade came and went, the horse show, the MDF family day on the bay, the conference in DC on Myotonic MuscularDystrophy, and the dreaded triennial IEP, after 30 days of ongoing tests to assess Zoe and her unique needs.

I like to speak of uniqueness, because this is truly what it is. DM Type 1 or Steinert, is a disease that defines all aspects of school life. It explains why focusing is hard, why math concepts are difficult to grasp, why reading and blending sounds are taxing for the brain. Why making friends is the most daunting task of all.

This year in second grade is not an easy ride. Zoe started with one aide, then midweek after a couple months, she was given another one.
She is in a class with co-teachers, which means that half the week she has one teacher, and the last two days of class she has to adjust to a new teacher, a new personality, new methods, and though it can be a good format for some children, it is not for Zoe.
At the meeting we were told that she seemed lonely. So hard to hear.
Her anxiety level increases due to her daily report, when the aid assesses her behavior, her attention span ( which is limited) , focus, her whole body listening, her watching eyes...I could go on and on.

So we keep chugging along, and I don't give up.
We quit Kumon, which was Zoe's most dreaded class, and so I added reading comprehension and writing to our homework load. I try to break the work with physical activities that enable her to reset her body and mind, so throwing a ball ten times, running to the fireplace and back, chair push ups (the aide enables her to do some of these activities in class). It is amazing how it helps. 
Some of the various assessments were hard to read,  in most areas whether it is gross motor, and adaptive physical education, Zoe is " below average" in all areas. I know I should accept that because it is the nature of the disease, but being reminded doesn't help.
Anything involving fine motor skills is also difficult, the reason why Zoe never likes to draw or color. 
We have not yet signed her new IEP goals, we will take our time to make sure we know what they entail.
David and I wrote our letter of concerns, and I will be sure to post it on the blog, as it can be helpful for those of you out there who have to go through IEPs.
I did remind the teachers and service providers not to forget that for Zoe to carry her body all day is exhausting. We take for granted the fact that we can sit for hours at a time, that we can walk here and there, but one step we make is 3 or more steps for Zoe.
Myotonic Muscular Dystrophy is a vicious disease that compromises everything, that affects your muscles, your brain, your stamina, and your emotions.

I am writing this blog on the plane on my way back from my 3 day trip to Iowa.
I took part in an extensive study on the brain and the incidence of the disease on brain functions.
The study started with a neurological assessment, followed by blood work. They will send my blood to the lab to separate my DNA and keep a sample of it in their data bank, and send another one to Scotland where a lab works specifically on CTG repeats.
Urine sample to root out pregnancy, and then 20 or so memory tests, cognitive tests, psychiatric evaluations. 
Some of the tests were amazing. The research coordinator, Stephen, gave my two lists of 20 words, and then I had to repeat them from memory and within a limited time, 25 words to define as if I was taking the definition from the dictionary, symbols to reproduce, cube to make three dimensional figures, face recognitions, hand grip strength. Sketch a geometrical drawing, and then 20 minutes later reproduce it, always with the timer in hand. General culture test, mathematical problems to resolve without pen or paper, lists of numbers to repeat and lists of words to classify in numerical order within your head! No pen، no rough draft. I had to fill a multitude of questionnaires
The culmination of the study was an hour plus MRI of my brain. 
I have to admit I enjoyed wine o'clock at the hotel bar after more than ten hours of testing, including 30 minutes for lunch.
The Hospital and Research Center of the University of Iowa are truly impressive. The campus is beautiful. I am ready for my next two visits back to Iowa, as this is a three year study.
Dr. Nopoulous, the psychiatrist in charge of the study wants to extend the study to assess children's brains. 
Do you know that 50% of all children having the congenital form of DM are autistic. 
Just like the Washington DC conference where I went again this year, I feel elated by the idea that we are all in it together, fighting to find a cure.  I feel blessed by the dedication all these researchers display, their enthusiasm is limitless and their care is remarkable.

I go to Stanford this week to finish my family history study. So I will fill you up on it.

And then on to new adventures... I hear there is a study in Florida. 

Well, I guess I will close this post here for now.
See you soon on the other side of the screen.
Fondly.