Tuesday, September 29, 2009

Foot Fetish

No I am not talking about my last pair of Jimmy Choo's, nor the latest Crocs model, but about my Zoé's feet. The saga continues.

We started last Wednesday with both feet casted, removed one on Friday due to pain and frustration, but mostly pain.

Yesterday, we removed the cast on the left foot and it worked!!!!

Zoé made tremendous progress on her foot, she will no longer need to be casted. She will have a new pair of braces made for the left foot and we'll recast the right one.
It will enable me to buy her a new pair of shoes, and she should be ready to walk again to the playground.

I have to admit, I got really depressed last week when Zoé was in pain. Everything started to bubble up, and I found myself totally stressed out. The constant worry and nervous tension just kept accelerating and I felt I was on a treadmill of emotions that nothing would stop.

Last night, first bath in a week, Zoé was splashing water everywhere and the happiest I had seen her in a while. She was her "old" self again, rejoicing in the little wonders that make her world: her books, toys, paints and crayons.

She has become quite the artist and her first real mixed media painting hangs beautifully on our fridge.

Speaking of art, my first class of ceramics is scheduled for tomorrow...I am thrilled at the idea of taking an art class while Zoé is in daycare.

We are now waiting for the foot to heal before we recast...to be continued in our Serial Casting Part 3 episode.

Saturday, September 26, 2009


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Having fun creating a collage of Zoé...

Friday, September 25, 2009

Serial casting--part 2

Well, Zoé is in too much pain, she can't put her right foot down. We are off to have it removed. I don't want her to be traumatized. We'll leave the left foot one in place, give it a day's rest and recast on Sunday or on Tuesday.

I feel totally guilty, but this was unpredictable and is part of the process. Serial casting is tricky as sometimes, if the child pulls on the leg when it is being casted, it moves the wedges and padding and this ends up hurting, bruising the foot.

We shall see what happened when we go to remove it later today.

In the meantime I've tried comforting Zoé: making "duddles" in the shade on this sunny Friday afternoon.

We send you our best wishes for a nice weekend ahead.

kind email

i miss the newsletters! has the blog replaced them/? zoe seems to be
excelling in all directions. It is amazing how much one can learn from
her stamina, determination and independence. i can;t wait to hear
about the next miracles she conquers. everything is in her power and
she is very inspiring to me. Thank you for sharing her journey with me
and my family. you are so right, Holland is so SO much better even
though more challenging, and my mom agrees too. it is a honor to
follow zoe's life.
i miss you guys!
hugs and love to all of you, and hope you re all well!

this is what an "old" student of mine wrote about the blog. She agreed for me to share it. I miss teaching, but I am now a student in motherhood 101.
Thank you Fiamma for your kind emails and your support!

Thursday, September 24, 2009

High Highs and Low Lows

Well, casting is done and so far it's been a hodgepodge of emotions: highs and lows. Zoé is simply a trooper and champion, but we might be asking too much of her.
We shall see.
yesterday, casting day, we spent 3 hours with both PTs to set Zoé's feet in serial casting, made of both plaster and fiberglass. I chose blue as the choice in color was limited: "black, perfect for Halloween; white, not easy to keep clean, and red:' crying hello, I'm here, can you see my feet!!!'"
So, blue it is.
Zoé had to be flat on her belly for the full 2 hours of casting. Legs up. Thank god for DVDs and portable players, for I had her watch her favorite cartoons while she was being casted.
She was a trooper once we got home, but then she suffered during the night. This morning, up at the usual time, ready for PIP to see her friends, and walking everywhere with the casts and boots, that seem rather medieval if you ask me! But at 12h45 pm she started melting down, and has been suffering ever since. We don't know whether she is overtired, realizing that these aren't coming off anytime soon, and perhaps suffering due to the fact that her feet are simply set in positions she isn't used to.
I've been feeling totally overwhelmed. When your child melts down it's hard, no doubt, but for Zoé it is so unusual.
I guess I've been lucky. Zoé is the most resilient, congenial little girl there is, and when I see her crying endlessly, rolling herself on the floor, I just can't bear it. I feel drained emotionally and helpless in front of her cries.
We might be taking them off, if she doesn't settle down. I put her down for a nap 45 minutes ago and she is now crying again.
yesterday we went to Sadie days Cafe a place where moms can unwind and sip on a latte while their little ones crawl everywhere, in little wooden kitchens, down slides, on bouncing balls and red balloons.
An obnoxious mother shouts to me across the room:"how old is your little boy, or is it a girl?",
"She's 21 months old."
"look at my son, he's 19 months and he's running everywhere..."
What am I supposed to say?
I simply say:"great!"
Zoé has taught me patience and composure. She's not about pity, she's about hope and all that she will achieve in her own time, in her own way.

Wednesday, September 23, 2009

Peekaboo, I see you

Playing hide and seek with Mommy and blowing on tissues with Kitty, her OT, before the big day.
Serial casting starts today. I am apprehensive but also very excited. Hopefully this will enable Zoé to walk better, remain ambulatory and we will thus postpone, if not circumvent surgery altogether...in the meantime, let's keep playing!

Sunday, September 20, 2009

Little Red Riding Hood

HUGE news and amazing one for both David and I.
Zoé left our house with her walker, [that she calls "chacha" for her mentor, Charlotte, has one] and cruised all the way down Rose Avenue, turned left on Linda and walked two blocks to Beach School.
She even stopped traffic as a car had to stay at the stop sign to let us cross over to the other side, where Daddy was cheerleading her on.
She had to be carried onto the school playground, but she reached her destination safe and sound: not grandma's house, with the wolf waiting for her, but the shiny slide and the tire swing with Maman.
Such delight, another victory, one more trophy to carve in her name.

The Kindness of Strangers

I forgot to mention a terrifying event that occurred this summer while we were in France for our annual, or bi-annual trip "home". Zoé got seriously ill with laryngitis, sort of croup like. She sounded like a barking seal, with the deepest and harshest sound I ever heard coming from her tiny airways. The powerful sound really scared Zoé, and before we knew it she was suffocating, choking on mucus and vomiting.

I didn't think twice. Mom, dad and I rushed her to the emergency room. Again, I was sent on a flashback terror of the first night she spent in the NICU after her birth. I felt so vulnerable, but I knew Zoé would feel my vibes, so I kept my fears in check and decided that soothing her was the only thing I could do.

After waiting for things to fall into place, I sent Mom and dad back, knowing that at this point I was the mom in charge. It was a weird feeling, once you step on the other side, feeling for your own child and then seeing your own parents worrying. I wanted them to go home and rest and show them that I could take care of things. That I was in control.

I never thanked the nurses in the emergency room enough: their kindness, their devotion, dedication, care were truly amazing.

The head nurse asked me about Zoé's "routine" to see what they could do to help alleviate her pain and fear of this strange neon-light room. I said that the one and only thing she loved was music, or singing. I had noticed a cassette player in a corner of the room, but needless to say we din't need one as the Head Nurse started singing sweet melodies to Zoé as her assistant put the adrenaline-cortizone filled mask on Zoé's mouth and nose. Zoé instantly managed to settle down, lulled by the French songs I've been singing to her since her birth.
I chimed in and so did the two other nurses and before we knew it there was a magical choir in this neon-light cathedral of tubes and machines, heart monitors and oxygen masks.
It was quite surreal.

After two more rounds of oxygen masks on Zoé, she feel asleep on my chest and they transfered me onto a wheelchair so that we wouldn't wake her up.
We were then administered to a room within the hospital where Zoé shared a bedroom with a little boy named Yuri. I "slept" on a cot next to her bed. Machines kept beeping the minute Zoé would turn, the cords monitoring her oxygen level wrapped around her body.

In the morning an appointment had been scheduled with the social worker to see how we would go about paying for the cost of this night in the hospital. Needless to say, we all know that children are priceless :-)

The social worker was also an amazing lady, full of compassion and respect.
I left her office with the bill, and a handful of cuddly animals for Zoé who had been rushed to the hospital with nothing to sooth her restless night and naps in the hospital.

Again, the kindness of strangers.

I didn't feel like Blanche Dubois in Tennessee Williams's Streetcar Named Desire, but I knew I could depend on the gracious devotion of all the wonderful people I met that night and day in the hospital.

I must admit, having sent Mom and Dad home the night before as I put my armor on, I was glad to find them back home the next day, for there is nothing like home and parents who love you unconditionally. Their kindness and love is the best medicine.

Friday, September 18, 2009

To know or not to know

To know or not to know.

A dear friend of mine just told me that her daughter was diagnosed with "Rett Syndrome". I don't know whether it is worse to know or not to know. She was waiting for the doctors to tell her, and a diagnosis was given. It means that now she might be given the tools she will need to explore the new route that has been opened in front of her.

In our support group, yesterday, we pondered over this idea...Is it harder to know, to put a name on what afflicts your child, to have an idea of what the outcome will be like, or not? I guess knowing helps, in its own strange way. Zoé and I now belong to the community of people afflicted with a neuro-muscular disease.

Once you know for sure, what your child has, the loss of normalcy is what then comes into place. After that, you are faced with the mourning of that loss and what you need is time. To ponder, to reflect, to cry, to find the strength needed to keep going on, and ultimately, you will reach a place from which one never comes back, that of the sorority or fraternity of special parents of special kids. It's a different place and a nice one. I have met so many amazing people in this sorority, that if it hadn't been for Zoé I would have missed out on these beautiful moms and dads.

Again, having a child, period, means a new life, a new chapter, a new set of rules.

Then, you are told that this child, after 3 or 4 years is a new child with a set of symptoms, a new life, a new outcome.

Degenerative diseases are harsh, for you have no idea what life has in store for you.
You try to live day by day, you can't idealize the future. You were dealt one hand, and that's it, you play with the set of cards you were given, you have no choice.

It's the small victories that your child will achieve that will teach you what life is all about. We won't teach our children about life, for theirs will be a different one, they will be our instructors: so that we can learn patience, confidence, faith, strength. They won't need to teach us LOVE for that comes with the cards, no matter what. I love Zoé more than anything. I've often wondered what my life would be like if we didn't have MMD. Well, I can't imagine it and I guess, my only wish would be for Zoé not to have it. She would still be my very, unique, special child!

In fact, for those of you who don't know it, Zoé shed the light on our family tree, for without her, none of us would have known that we were or were not afflicted with Myotonic Dystrophy. I hear of so many stories about moms or dads, who one day, are told that their child has inherited their good looks and their genes, and a small abnormality on chromosome x y z. Life is amazing!

Yesterday, a new family came to visit PIP (Parent Infant Program) where Zoé goes twice a week. We were introduced to their daughter, Nova, a beautiful little 9 week old baby with Down Syndrome. They were thinking about whether they wanted a home-based early intervention program for their daughter or a center-based one. They were thrilled to see our group, how kids interact, what progress they can achieve. It was nice for them to be given a glimpse of what we live on a day to day basis and the journey they are about to embark upon. I wish them well. We look forward to seeing more of Nova really soon.

Till then, we send you our warmest thoughts on this sunny Friday afternoon...

Wednesday, September 16, 2009

Bubbles and Hats and all things nice...

What are little girls made of, what are little girls made of? Bubbles and hats and all things nice!

Had a wonderful time last night with two friends from the "sorority of special moms with special kids".

We had a good laugh and it's fun to help one another see through different lens, how we go about raising our children.

We mentioned how the landscape of our lives has been altered by what we have to deal with, on a day to day basis. The ups and downs of parenthood, and the added weight of having a child that needs a little more than the "neuro-typical" one, that little extra push up the slide, that extra attention, the extreme patience, that sometimes I lack, for at the end of the day, I am exhausted.

I think we need more of these nights where we cheer each other, for we all do a tremendous job, and it is important to cut ourselves some slack, because we do what we can to make the journey a fun one for all, despite the challenges and hurdles we are faced with everyday.

Thank you for sharing this trip to Holland, Suzy and Bahar, I'm so glad we can travel together!

I just dropped Zoé at day care and I need to organize my day, prioritize what is important to me, take full advantage of this day,to recharge my batteries, so that I can be an even better mom when I go pick her up, later today.

Tuesday, September 8, 2009

Post Traumatic Stress Disorder

PTSD-- we talked about that at length in our past couple support group meetings, and how, like soldiers who fight in wars, we too suffer from post traumatic stress disorder. The only difference is that we never leave what causes our stress behind, it remains.Having a child with special needs adds stress to your life, but also beautiful new routes to explore.
I like to mention my own journey as a set of "graduations", or milestones, just like Zoé--who goes through hers. Like the milestones our little ones go through, we have our own.

When you do IVF and you manage to achieve a pregnancy, your doctor tells you, "That's it, you graduate" and I remember the fear I felt. It was so comforting, in a way, to be in the hands of the experts, and then it's the unknown that starts...the fear that something might go wrong, but ultimately, something that you have to go through, hoping that the precious little bundle of life you are carrying will continue to thrive and grow.

The second "graduation" was the time I would go to the hospital for I couldn't feel Zoé moving...and every time the reassuring feeling of hearing her little heartbeat running wild like a galloping horse.

Then, her birth, another initiation, she is taken away from us, sent down two stories to the NICU (Neo-natal Intensive Care Unit), and it's going home with an empty car seat that is the most heart wrenching part of it.
After that you get used to the daily trips to the NICU, day in, day out, in a cab, zooming through Central Park, to see your child in her little incubator, waiting for her to open her eyes, taking her in your arms. That too is reassuring, you know that she is in good hands, your own and the nurses' and doctors'.

Then came the day when she went from her isolette to a mini crib, under warm blankets. What a day! Milestone galore, we felt so happy. That meant that she could keep her body heat on her own.

Taking her home afterwards was another scary moment, fearing the first bath, the feedings, the first visit to the pediatrician, by minus 5, wondering whether it would be too cold for her.

And anxiety, nervous tension never stops, you stress about the assessments, the evaluations, the graduations Zoé has to go through. The milestones she might skip, because she has gross motor delay...

But all of that stress dissipates at times, and in a fleeting moment, or an entire day, you realize how grateful you are and how blessed you are to have the most precious child you could have imagined. I cannot picture my life without Zoé.

yesterday was one of those days, a huge milestone for both of us, Zoé changed classrooms at PIP and has a new teacher and new classmates now.

I am no longer with her in the room, but watching her behind the mirror with other anxious parents who want to make sure that their child will improve, will do well. She has her own little desk and follows the teacher's instructions carefully and attentively.
Matching fruits, objects like shoes. Putting finger puppets on her nose, on her toes, on her elbow and her neck. Hiding them up her sleeve, in her pocket. Making Pin art, tossing bean balls in a basket, way up high. That's where Zoé is now, way up high, with the sky being her only limit. I am so proud of her, she gets all the credit.

Till later, we send you all our love, big, warm hugs, and Zoé--our little yogi-- salutes you! (hope you like her downward dog, yoga move)