I grabbed it and ran away with it!

This is what a new mom at our support group told us on Tuesday when she heard that her 2 month-old baby had leukemia and down-syndrom.
It makes you put your own life into perspective and relish the good and fun times you have with your little one.

Zoé is at daycare today and I take advantage of this opportunity to reflect upon this statement.

"I grabbed it and ran away with it." Isn't it what we've all done, when we had no choice. I keep thinking about how different my life would be if Zoé didn't have MMD and I can't even picture it. I think about how we'd probably lounge around the house, paint, bake muffins and go to the park. Or perhaps I'd be teaching and she'd be in preschool full time. Instead we are working on her muscles, her speech, her balance, everything that make her who she is and whom I am so thankful for.
It's intense though. Last week I even forgot we had speech at 9:00 and when I strapped Zoé into my car and she said: "Nanan" instead of "Maman" I realized we should have been at Speech Therapy! We got there for a 10-minute long session that I had to pay in full, of course! ($55/30 minute)

On the same day I forgot that I had invited two good friends to my house for "drinks and Chatter" and I came home at 8:30pm. They had a good laugh when I called them and apologize for not hosting our monthly mini-support group over wine and cheese!
It just come to show you how regimented my life is and how, when a schedule changes, everything unravels.

Last night two good friends came over and we discussed what it's like to have a child with special needs, and how lucky we are that it was from birth. Our children won't know otherwise, nor will we.

In case of an accident, I can't even imagine what it must be like.

Zoé is doing so well. She never ceases to amaze me. She is driven, full of energy and always ready to conquer it all.
We go to her neuro-muscular clinic in Sacramento on Friday. I hope we get good news and interesting feedback. I will for sure let you know what comes out of it.

Just a few thoughts to think about...for today.
Much love coming your way.

2008 Bay Area MDA Camp - Telethon Vignette

Sharing a bit of my painting...

Belonging to the special group of special moms

Yes, looking at preschools and you are thrown into the real world, the realm of normalcy, of typical kids, with typical parents and typical skills. Our children with special needs have to be part of that world. The "little" problem that they have to deal with
on a day to day basis, that we know how to care for, suddenly becomes magnified under the lense of the world out there.

At PIP, in our support group, we think of our children as being part of a cocoon, where all of our kids can relate to one another. They are all beautiful people, with their little problem. At first, when we got there (Zoe was 11 months old) her MMD was huge, immense, immesurable, it made everything else feel minute, and then, as time went by, it became the small or little problem. You tend to forget what affects your child, because you realize that it does not define him or her. The 'disabled' plaque in your car becomes invisible, the AFO's or SMO's (Different kinds of orthotics) are just a part of the shoe, the speech problem doesn't prevent the singing, the mouth taping makes you look like a cute little clown...

With time, the doctors'visits become sparse, neurologists have nothing more to add,we are told that time will tell, cardiologist and ophtalmologist will be seen in a year's time, when future check-ups are needed.

With preschool looming, we are now aware of the differences, the special needs become even more special. Our kids are different and we have to face it. Whether we like it or not. And we have to start explaining how special our kids' needs are, what makes them look different or act different. We all agree that we should say the least, because what is important is not the diagnosis but the way our kids will conquer the odds, how they will be challenged, how they will teach other kids what it's like to be "different", how resilient they are, how passionate and independent they are in their own "special" way.

I had to explain Zoé to her new "teachers" at SNAP! Yes, after being on the one-year waiting list Zoé has entered the pool!!! We go every Monday evening. She loves it.

I try to put myself in Zoe's shoes, to see the world through her eyes. What she'll enjoy and relish in. What challenges she'll have to face, how she'll exceed her dreams. We must let our children be our guides, they will find the loopholes when tricky situations arise, they won't feel that any task is daunting. They have already taught us so much about ourselves. How strong we are, despite the difficult and scary place we find ourselves in. How, we too, can be resilient, strong and determined, to give them our utmost devotion and love. Because that's what it is all about in the end. Our kids were meant to be!

I found a school that I really like for Zoe. It's play-based, with a little structure. What I do love is the artsy component: very much hands on with clay, playdough, sand tables, water play, easels and free paint, collage and mixed media. At the same time, kids can feel free to go outside as much as they like, with different play structures, kitchens, slides, boats and they also learn to take care of animals, for the school offers chickens, rabbits (Sugar and Spice, I already know their names!!!) fish, parrots, etc.
I can see Zoe there but I also wonder whether she needs more structure. She does get that at her French school, where the teacher focuses on the French Kindergarten curriculum.

I can't believe I am writing about that. I feel we've come such a long way, from my little rag doll in the NICU to my vibrant, playful, social butterfly.
She is ready to flutter away, out of the PIP coccoon. And I am not!

A lot on my plate...

Trying to deal with the grief of losing my father, caring for Zoé, living with a chronic disease, how much darker can this post be? I know I shouldn't complain, but today is not a good day. I know it is ok to be sad and it's part of the road to recovery. I love what Laura, a friend from PIP wrote on her blog about the sadness and the pain she feels for her child who has Special Needs:"

"It was a good to cry, a good reopening of that room that I don't live in but always know is a part of my 'home'. A fitting way to start off the Holy of Holies. Tomorrow at sundown begins Yom Kippur. A time when I believe the veil between the material world and the spirit is thin. A fine time to feel raw and in touch with that which is larger than myself. I'll leave the door to that room open for right now; let in some air and light.

Hopefully on Sunday, I'll be able to close it again, and as the door shuts with a gentle click, I will pick up my paddle and continue on down the river."

Yes, I feel that I have that room too, in my 3-bedroom house, it is part of my 'rental-sweet-rental', and sometimes I shut it, when all is ok and things are going well, sometimes I feel it needs opening for it is too stuffy, when insurance companies or other red-taping nightmares clutter it. Right now, it is in desperate need of air and light. I know I will come out of this funk, I just need time to help alleviate the pain that comes along the loss and the grieving process. It's the ebbing and the flowing, like the high and low tides of my daily life.

I should fill you in on the positive news about Zoé though, for this is her post, her blog after all!
We had our transition meeting from the Regional Center, where Zoé is currently a client and from which she will be handed over to the School District on her 3rd birthday.
The School district will fully assess Zoé, but will omit the cognitive and behavioral part, because we know she is fully on target.
I was told that most probably Zoé will get speech therapy, focusing on Oral Motor therapy for articulation and lip closure; Occupational Therapy and Physical Therapy. I am eagerly awaiting the school psychologist to get in touch so we can launch these assessments.
Yesterday we had our home visit from the Regional center and Zoé's teacher at PIP, they both agreed that Zoé reached all the goals we had set for her. Thumbs up!
On Sunday, Zoé starts music class.
On Monday, Zoé start French Montessori School
on Tuesday, Zoé has her PMP class (Pediatric Motor Playground) where she is working on pre-writing strokes, hopping, throwing balls, sitting quietly in her chair waiting for her turn, etc.
She still has therapy twice a week and we are now waiting to hear from SNAP (Special Needs Aquatic Program), I'll be going in the water with her!!!
As you can see, Zoé is a busy bee. What I love about PMP and La Maison des Enfants is that I am free to grab a coffee, read my book or simply take a walk. At last, I get some downtime. I need it.
voila dear friends.
Let me clean my dusty 'room' and air it out. Until next time, we send you good wishes for a fun-filled weekend and easy fasting for those of you atoning tomorrow.

Girls just wanna have fun

Today: early morning. I hear "Maman", "Maman", "Maman"...I know my alarm clock, she'll keep calling my name until I come into her room.
I love the early morning time, we hang out, have breakfast and are ready and good to go for another fun-filled day.
Daddy is sleeping...he works soooo late.
Zoé knows to say: "Daddy travaille trop" (Works too much), she is well trained.

Today we went to our quarterly Myotonic Dystrophy Support group, we have no excuse not to go, it is literally a 10-minute walk away.
This morning was a small group: we were 5, sharing info, checking in, discussing problems related to MMD with sleep apnea, GI (Gastro-intestinal) side effects, foot drop, etc.
Zoé was a trooper, she hung out, played with her toys, books, my i-phone, etc.

After that she and I went to Fenton's Creamery, a fun-filled restaurant for kids. On the menu: crayons and coloring pages, hot-dogs, fries and a scoop of strawberry frozen yogurt. This was our first tete-a-tete. I loved it! It was really fun chatting, drawing and just hanging out mom and daughter!

I realize the strong bond we share with our children. It made me reminisce the good old times with Mom and Papa, when I was a little girl. All the fun-filled times we shared.Oblivious of the harsh reality of life and illness, and ultimately death. My pain ebbs and flows, and I try to keep it all in check, for Zoé and David, and I keep my cries for the late night hours when I am alone. I have been writing a lot of poetry lately, I am down to almost a poem a night, it's my therapy. It is cathartic for me to write my pains, aches and fears. They are all work-in-progress types of poems, and I like to work on them when I need to revisit that space, that place.

Chin chin!

 

Celebrating good ol' times at Fairyland with her buddy Manav.

Miscellaneous

Fuzzy friends at Fairyland
Swinging with Teddy at Therapy
Watermelon in the backyard
enjoying life in sunny California!

Sharing some of my poetry writing...

FOG

Driving through desolate desert streets
the melancholic tune of an old song cracks on the radio.
stopped at a red light,
I watch what surrounds me.

Haggard faces on battered roads
and always the omnipresent
pigeons, constant reminders that life is real, they flap their wings, unconcerned,
dancing through the smoky steam filled spaces.

The fog, insidious, snakes its way through back alleys and forsaken parks that seem like still lives in Seurat’s paintings. Fragments of lives, like little unconnected dots
and always these battered souls
aimlessly walking with nowhere to go.

no tears are shed
no words are spoken
and then in all of this noxious world of darkness and cold
the flicker of a light when a helping hand is outreached

an old lady huddles under the umbrella of someone she doesn’t know
a window rolls down and coins are tossed in a battered cup, soiled and dirty
like the imprints of a life that endures
all this in the fragment of a few minutes in the foggy city where I can’t find my place.

I close my eyes and see where it is that I belong
along the coast
overlooking that similar body of water, but half way across the world

where the rugged coastline greets me with open arms
where the gravel under my shoes reminds me that I am home as I walk up the lane
the smell of oak burning in the fireplace
the fog horn reminds me of that foggy city far far away

Sarah Francheteau-Berman
work in progress

Potty Training and other back to school stuff

Well, yes, the time has come....after much reflecting, advice seeking, tips sharing, we are now in full mode. Potty training Part 1.
Zoé likes to sit on it. Exploring the feeling, doing like mommy, then nothing happens, but what the heck, another new thing to do.
Then, we borrowed Kieran's "Cheer-for-me-Potty", which has a sensor. I will let your imagination run wild, and the first time Zoé did it, I had forgotten to put the "on" button, so we didn't get the chime...she still likes to pretend flush and wipe herself.

So, I am letting Zoé go commando, and the one thing I do not want to do is put pressure. I would simply like to save the planet from adding diapers to landfills and also have Zoé be more independent. She will do it in her own time, so I am not worried.

On a different note, I have been looking into pre-schools and have found one that seems really good, "La Maison des Enfants", a little French Montessori school. 6 kids per class, Zoé will "start" on September 20th. That means we shall check it out on that day, and the teacher will let us know if we can stay. It will be a bit of a drive: 35 minutes, but being in California, I guess I'll fit right in. We will only do it once a week until December, when PIP ends. Zoé might then attend it twice a week. We'll save daycare one day a week, for I want Zoé to keep in touch with her friends there.

Slowly but surely, I feel that I will become less involved in programs that Moms don't have to attend. It will feel good to go for a walk while Zoé is in class, or simply go to Starbucks, book in hand to read or write or catch up on the New York Times.
Of course, I will still need to juggle therapies: Occupational, physical, and speech...but I don't know it any other way. It's actually hard to try to schedule things so that I don't overtire Zoé. She really is on the move non stop.

Celebrating a life well lived in LOVE

Through love,
Through friendship,
a heart lives
more than one life.

Anais Nin

Tricycling and therapies