Sunday, October 24, 2010
I pick up his picture I have in a gilded frame.
It is cold and the glass that separates us doesn’t fill the void.
I wish I could simply crack it open and retrieve the warmth of the day that picture was taken.
I remember so well, the momentum of when I looked into the lens, and froze for infinity his smile,
the twinkle in his eye,
Now I have the picture,
I don’t have the voice,
nor the touch.
The five senses have been stripped away.
I remember his strong hands,
the wooly sweater that wrapped his shrunken frame.
Yet, he managed to smile, to let us believe that he would make it through,
that we, too, would pull through.
I look behind him in the picture, on the mantlepiece, we had placed a small bouquet of hollies,
mom and I had bought it at the market,
It had been blessed in church that morning.
Small token of hope, fresh and green, that we all clung to. It has been blessed, it will save him, I thought.
Next to the fireplace, the book shelves, crammed with books, encyclopedias, knowledge of the sea floor, the earth crust, the magma that he so cherished and loved.
He has gone back to them.
Beneath the bookshelf, the worn out leather chair, next to the stereo where he listened to the soothing beats of the old African drums. Where he spent countless hours surrounded by all that he loved and those who loved him.
The chair sits empty, the stereo is off, the hearth is cold and empty.
We need him to bring it all back to life.
The picture is all I have.
Well, Zoé is almost three and we are about to turn the page on the wonderful twos...Terrific or terrible threes are around the corner, and oh boy, what a journey ahead. I am told to not fret for it only lasts a year...I can't wait.
Zoé is into controlling mode:
"I read it", "I do it", "It's mine", "je le fais", "non, c'est moi qui chante", "Je lis le livre", etc.
"NON" will probably be the leitmotiv for the next 365 days, or so. Zoé is not even three yet (December 1st).
I have been going to a "Welcome to Toddlerhood" support group, where we all, frazzled parents, looked like we were attending an AA Meeting!!! hahaha. '"how to deal with tantrums, biting, refusing cooperation, eating issues", thank goodness we don't have to deal with tantrums, Zoé is a great eater and isn't into biting or hitting. She's more into control mode, doing things her way, in her own time.
I was told that the best way for things to go smoothly is to:
make her my little helper, giving her chores, making her feel important, etc.
Positive reinforcement being the motto, and trying to be patient.
If you scream at the top of your lungs, they have won the battle, so stay calm, stay zen, relax. Easier said than done.
Right now Zoé is napping, we are so lucky that she's the greatest sleeper ever: 12 hours a night and 2 hours in the afternoons.
Never had to stress over that.
We've had a couple of fun visitors at home:
Uncle Diran came from France, he enjoyed taking Zoé to the Oakland Museum of Modern Art, Grammy Gina has just arrived from NYC for the next two weeks and in three weeks Nanny comes from France. Halloween is looming and then it's the Big 3 birthday party that I need to work on.
What else is new otherwise?
We are awaiting our new pair of AFOS (Ankle foot orthotics), driving to Sacramento on Tuesday to see the surgeon for Zoé's post-op meeting.
Her IEP (individualized Educational Plan) will probably be in the second week of November and we are going to be big time advocates. I feel I've acquired a lot of the necessary skills to advocate for Zoé, though there is still much room for improvement. I need to learn not to fret about hurting people's feelings. It is what is best for Zoé, what I want her to have, to help her be at ease with her peers, be able to walk and play on the playground, etc.
Zoé will graduate from PIP on December 1st and I grieve already for the loss of great friends, wonderful support group, and invaluable tips about parenting a child with Special Needs!
I am sure we'll keep in touch, but my two hours of respite from taking care of Zoé, are my lifeline. Ok some days I am not in the mood to share, but I can listen to others and it helps to put things into perspective. Never take things for granted, because you don't know what tomorrow will bring.
With these final words of wisdom, I leave you for I now have to go through all the medical bills that need filing!
Enjoy what is left of the weekend.
Monday, October 11, 2010
It's been a while and I jump on this little window of opportunity to fill you in on the latest about Zoé.
First off, I would like to send a big thank you to Lisa Vittek, founder of the Myotonic Dystrophy support group who greeted us with open arms when we last went to Sacramento. That was ten days ago already and I didn't get a chance to say thank you and how much fun Zoé and I had visiting the MMD Headquarters and Kayla's school.
Zoé had her appointment at Shriners and Dr. MacDonald suggested a new pair of AFO's with hinges this time. The SMO's are ok, but Zoé is slowly and surely going back into eversion of the foot, and we MUST correct this before it is too late. She does sleep with AFO's every night, and with her new Dora shoes and SMO's she is walking up a storm, but eventually things might get worse, so we must act upon it asap.
We are going to cast her new pair tomorrow...
We are going back up to Sacramento on the 26th for her post-operation follow up and will see her surgeon.
The second big piece of news is that Zoé's IEP (Individualized Education Plan) is in full swing with Speech, Psychological, Physical and Occupational evaluations. All these ladies "playing" with Zoé...it is creating a precedent, for she is going to seek my undivided attention even more!
So far, I don't know what has come up and we will be given the results the day of Zoé's first (And not the last, for she will have one every year until she's 18) IEP. I really want David to come, for I think if both parents show their involvements, it might add force to the persuasion or the choice of services Zoé is offered.
But more on the IEP when we get to it.
Zoé loves her little French Montessori school and adores her Teacher Sophie! They are studying Dinosaurs this trimester and work on Body parts, colors, shapes, etc. They have a little circle time, songs and fun, with the right dosage of structure and rigidity, which I like. Zoé is at an age where she loves to say "NO" to everything and every one, she cannot seem to sit still for more than 10 minutes.
I explain it to the fact that Zoé is MOTOR DRIVEN. If we think of it, she was a late walker. Can you believe that for the first 18 months of her life she could hardly move, sat around on cushions, with a helmet, AFO's that prevented her from moving and discovering her environment. She is know in full force, out to discover the world. Of course, sitting is boring when you can be climbing on tables and play houses, on tricycles and toy trucks. It is hard to teach her to sit down and focus. But I know that she will do in due time.
Right now we are working on the mini 'Tantrums", not the screeching ones, but the no-maman-i-am-not-coming-with you. Zoé will sit there, when I try to pick her up, she goes "noodle legged" and there is nothing I can do. She is so independent that If I pretend to leave she couldn't care less...It is quite exhausting...i have been relishing nap times.
I am also taking guitar lessons, which is nice, for I get time on my own.
Zoé's loved the dentist, as you can see from the pictures. SNAP (Special Needs Aquatic Program) is a blast!
Zoé is dressing up as a Doctor for Halloween, which comes to show that she is quite at ease with the medical field, which is unfortunately part of her world! She just had a shot on Friday and right after, on the same day, blood draw to test for her insulin, glucose levels and check her Thyroid. Diabetes can be a side-effect of Myotonic Dystrophy...I don't want to go there! This is meant to be a "happy" post!!
We are enjoying pumpkin patches and the beautiful autumn colors while we wait for Zoé's two grandmothers to arrive. Grammy Gina will come in October for trick or treat and Nanny in November for Zoé's 3rd birthday. So we look forward to fun-filled weeks ahead.
Hope this post finds you well wherever you are.
Sending much love your way!