Post # 221

221st post, wow, I never thought I'd still be writing, but it is definitely my best therapy.

How to fill you in on the latest news?

Zoé is doing great, so that is essential.
The most worrisome part for me is about her fine motor skills, though. She definitely does not like anything that entails holding a pencil, coloring, cutting, pasting, tracing.
So we are going to establish a new system to try and motivate her to do more fine motor skill work: golden coins.
I know this might shock some of you, but we are going to "pay" her for doing chores (like cleaning her room, helping putting books away, brushing her teeth on her own, with supervision, etc.) and working her fine motor skills: one coin will equal 1 minute of screen time. Bribery is awful, but when Zoé saw the golden coins that arrived today, she was thrilled and immediately told me she wanted to draw. We are going to establish the rules with her, we will have a family pow-wow and decide together how we want this system to work. She will collect coins in a glass jar and she will decide when and how she can redeem them.
Her OT thought it was a good idea. Perhaps it will teach Zoé the value of "money" and how hard work "pays off"!
She loves being on the computer, playing games, spelling, etc. The one positive aspect of this is that at least she is in the computerized era, and that pretty soon, all will be done on the computer. Though I love cursive writing done by kids. For Zoé holding a pen is hard, coloring is hard, this is why she doesn't like it.
On Thursday mornings, we stay home before her Speech therapy at 10:30 am and we try to do arts and crafts, but I end up doing it all. She is quite impatient when it comes to painting, coloring, cutting, etc.
I will let you know how this system works.

As for me, I am my usual self, not wanting to dwell on the scary symptoms, on the extreme fatigue, on the feet that cannot walk as fast as they used to, on the hands that canon open bottles, but can still type ;-)

I have to let you know about the latest support group meeting I went to. It was a real eye-opener. I met a new couple that attended the meeting. A brother and his sister. It made me think of my own brother, who is also affected by MMD-Type 1, and how I might help him out one day.

The bond between these two people was amazing. She, motherly, letting him talk. Expression-less face, smile-less, crippled hands, and the sadness of remembering why I was there.

It was comforting though to be able to assuage him, to share ideas of support and to tell him how important his health is.
Yet, these meetings are hard, and painful reminders of how we all share the same journey, whether our symptoms are the same or not. Whether are hardships are lived differently.

I will put pictures on the next post. I don't have access to my photos as I am at the local coffee shop studying for my test tomorrow! back at school for my last 3 units.

Voila dear fellow bloggers, (readers or writers), till the next post I send love and warm hugs.

Hardship

Another party, another birthday party, I find them so hard. Or maybe it is because I am tired. Tired of having to constantly include Zoé. She never mingles with other kids, she is always alone in a different room, the party is outside, she stays inside, the party is downstairs, she's upstairs. Then, we have some accident to deal with, pee or poop ( it is still a battle, but it is MUCH better than it ever was). Driving home in the dark, Zoe in the backseat, listening to her music, I cried. I cried for her differences, for her challenges, for her inability to make friends when in a different setting, for her aloofness, for her hurdles, for her journey, and ours.
Some days are like that.
Especially at birthday parties, where everyone seems "perfect", kids are joyful, and mine is spirited away.
I cried and internally screamed: " why is she not like other kids? Why is it a constant battle?" I really feel hopeless.
And then when I feel like that, I think of my father, and how I miss him, and how effing (to quote Paul Auster) hard life can be.
Sorry for being so negative, but remember, the blog is the outlet, the one space I cherish, for I am able to let everything ooze out, the good and the bad, the joys of having a very special, loving child and the hardships and terrifying journey ahead.

On a happier note, a wonderful email uplifted my spirits. Bianca, the mother of one of Zoé's old classmates at Les Petits Francophones discovered the blog and sent me her comment. She agreed for me to share it. So here it goes:

"Salut Sarah,

This is Lucia's mom, Bianca writing.  I know we haven't spoken much, but I was doing my taxes this morning and so did a search for LPF to get the info I needed -- your blog came up in the top search results. I hope you don't find this too intrusive, since I wasn't invited to read your blog, but I was hooked from the first entry.  You have a real gift with words.  And a strength, love, and dedication towards your child that I find so amazing.  To be honest with you, I never even knew Zoe has special  needs.  I always thought she was so cute and charmante, with her red glasses, and reserved disposition.  I just thought she was shy.  And Lulu loves Zoe and never thought of her as "disabled" in any way.  In fact, when I was reading your blog, she was looking over my shoulder and just kept wanting to see the pictures of Zoe and commenting on how cute she was.  What I hope I'm conveying is that you, your family, and support system have done a great job in assimilating her with children who don't have the obstacles you all have to deal with.  We all like to think raising children is very difficult yet rewarding. I have an almost 5 year old and an almost 18 year old so I know the full spectrum. But you and your family have to do so much more.  You and your family humble us. And Zoe is such a beautiful result of all your love, patience, and hard work."

Bianca Cano Nakamura

          

THANK YOU, Bianca, you don't know how much these words mean to me!

Nostalgia and the walk down memory lane

I have been thinking a lot lately about life and how it has molded our daily experiences. As we decided to de-clutter our basement, we started emptying boxes and revisiting the "past" , and what was supposed to be a cleaning, fresh-start-activity turned into a walk down memory lane, with old photos, baby clothes we still keep, Zoé's first little hat worn in the neo-natal intensive care unit after birth, her first onesie and the nostalgia of how far it all seems.

I am still working on the mourning of not having another child, the loss of the sibling Zoé will never have, the filial ties she will never know. By that I feel that she will be left alone when we are gone, and it now scares me more than anything. She depends so much on us, on our strength and our trust in her.

Zoé is a trooper and I don't write it lightly, she has come from so far. While I opened boxes, I touched the old helmets she used to wear, the old, tiny AFOS that kept her feet from touching the ground, the tape we used on her face and feet, the old toys, her first rattle, her first wooden toy. Nostalgia is hurtful at times.

I am still concerned about her hyper activity and her "disease" I call: Toucharia. Yes, Zoé needs to touch everything. We go to stores and she has this impulsive, uncontrollable need to touch everything. It literally drives me crazy.
I have to then go behind her to put everything back into order.
On the side,  a short anecdote about this mother I heard tell her two daughters in a store: "Now, remember girls, museum hands, please!!!!" I cannot even fathom taking Zoé to the Louvre ;-)

Lately, Zoé has been up every night, for no apparent reason, so we have a wake up call at 2:00 am, at 4:30 am, and then our snuggle bug manages to crawl her way into our bed....I love that part when it is 7:00 am or 8:00 am if we are lucky.

I just finished reading this book by Anne-Dauphine Julliand, Two Little Steps on wet sand (Deux petits pas sur le sable mouillé).  This amazing woman blew my mind. Her daughter was born with what is called:" leucodystrophie metachromatique", basically a disease that will eventually strip her daughter of all 5 senses and she will die within three years. Not only did the mother blow my mind, but her daughter who month after month loses her senses, they face adversity in such a graceful manner and it is LOVE that conquers all.

What their daughter, Thais, teaches them and taught me, is that with love one can overcome the worst. The daily struggles that the parents have to surmount are not those of the children, they know no other way.
Zoé, like Thais, doesn't know the when the how the what. They are two little girls that live their daily life cherishing every moment of it. This book also highlighted the chance of having Zoé and how far she has come and how far she will go. By her endless determination, her drive to conquer her daily obstacles, her will, her joy for life.

I highly recommend this book, it has been a true eye-opener. Life is worth living and one should not WASTE any time, live, run, cry, cherish, laugh, and most importantly LOVE for no one knows what tomorrow will bring.

I actually felt nostalgia after reading the last page of the book. It was a journey worth every word.

Till the next post, I send my love.

Happy 2013

I hope this finds you all well and rested after the holiday festivities.

May 2013 bring you all that you wish for, as well as health (most importantly), love and peace.

Our Thanksgiving - Zoé's 5th birthday - Hanukkah - Christmas and New Year's bash were wonderful and quite relaxed.
It felt good to stay home and enjoy the season. 

Zoé's big move was: a new room and a new bed. Since she is now officially a "Big Girl", we treated her to a new set up.

She is still working on potty training, but has gone to bed every night without a diaper, which has literally changed my life.
I haven't been missing the diaper aisle at the supermarket, let me tell you ;-)

We still need to work on "leakages" as she calls them when they occur. Life on Miralax (Laxative/stool softener) is not easy and little leaks happen.

Zoé enjoyed the holidays and is awaiting school to start.

She is still in full mode therapy: 

Speech x2/week: working on lip closure, oral motor stretches, bilabial sounds and a.r.t.i.c.u.l.a.t.i.o.n

Occupational therapy 1/week for 45 minutes as opposed to twice a week for 30 minutes.

Physical therapy: working on transitioning from floor to stand, walking up and down stairs, tricycle and ball catching.

Horse therapy: once a week at the covered arena, we  will start the next class in February (outdoors)

Choir: once a week, as our little soprano loves to sing

We still need to work on social integration and that will come in time. Zoé is still quite aloof when in a large group. She has a hard time being surrounded by big boisterous groups, which will be a concern next year when she goes to school and is in a class of 24 kids; but as I like to say, we'll cross that bring when we get to it.

As for me, I am now working which has been great, despite my physical limitations that occurred almost over night. It is amazing to see how my body has changed, my gait, and general stamina.
I am trying to be as active as can be, doing weekly pilates with an instructor and massages every other week.
My calves have become really weak and atrophied, so massages help for the soreness.
I try not to dwell on the situation despite the fact that I will have to get rid of all my beautiful high heel shoes. Not that I wore that many, I can no longer be on tiptoe!

Voila dear bloggers and followers, these are the latest news.
Next appointment: neurology department at Stanford's Lucile Packard Hospital for Zoé's annual neuromuscular clinic. Dr. Day, whom we adore is in attendance and always a wonderful advisor. I don't know whether I told you, but Zoé doesn't sleep with her AFO's anymore. She decided that she didn't need them. Her rehab doctor said it would help, her foot surgeon said it wouldn't change a thing.
Zoé had the last word!

I'll be back in school (college) in February for my last course on Early Childhood Education, after which I will have completed my 12 units required by the State of California to teach in a preschool or with young children. Loving being back as a student. The brain is slower but I love the challenge!

Many warm hugs and much love coming your way, wherever you are.

The Cake!

Hello there!

Loving those cupcakes

I'm singing in the rain

 my ornaments

Christmas cookies at our baking party

The Big Girl Room

Happy Happy Happy

Well, first of all, I have to say that I am happy I still have followers out there.
I know I should not dwell on it, but I sometimes feel I write the blog and nobody reads it. Yet, in recent mails I have been overjoyed to read that I do have my "fan club", my sweet followers.
So Thank you for spreading the joy. It makes my day.

Actually, I also know that I write the blog for Zoé. Hopefully, one day, she'll be happy to read about our adventures in Holland, in therapyville,  in OT-dom, in PT-town...

So what is new, you might ask? Well, in less than 72 hours, my sweet little one will be 5. Yes, 5. you read it correctly, F.I.V.E!
I cannot believe it.
So much has happened, so many hurdles have been conquered, so many hills have been climbed, so many ups-and-downs, so many happy days, so many sad days, so many exhilarating moments, so many devastating news, so many ... and yet, the most amazing gift of all, our Zoé, which by the way, in Greek, means LIFE!

She is our life, our joy and my constant worry for what the future holds in store. But I do take it bird by bird, or day by day.

Today, I went for my annual echocardiogram and the sweet technician and I got to talk about Steinert, which she had never heard of. She did tell me: "Well you've got a beautiful heart!" I don't know whether she meant it literally or symbolically...hahah, I know she meant my valves looked good.
So that's done, check, see you next year probe and gel.
My holter monitor showed a few heart palpitations but nothing to worry about.

On the home front, David travels a fair bit, and I started a new job. I now teach French at the Ecole Bilingue, the Franco-American school in Berkeley. It's only 6 hours a week, but perfect to grease the rusty brain and to get slowly back into teaching mode. I am thoroughly enjoying it and love to have "my old life back", in a way...

The support group is still up and running and it feels so good to get together with my special moms of special lives.

Mom just came to visit from France and both Grandma and Aunty are coming in from NYC this evening.

Zoé and Maman on the roller coaster, holding on to dear-life

Easy Rider

We went to Funderland after our bi-annual visit to Shriners Hospital in Sacramento. It will now be part of the routine, and I am getting better at roller-coasters, just so that you know....
Hope this finds you well wherever you may be and HAPPY!

BIG BIG NEWS

I am about to scream as I write this post...and I am on hold with my insurance provider...I wonder what they provide besides anger, frustration, delirium and headaches.
I called to pre notify some upcoming medical appointments and suddenly they tell me vision is no longer covered. I had to look back months to find the pre note tracking numbers I had to verify that yes we did get covered. I think I am about to change careers...insurance provider. I have at least a masters in insurance management if not a PHD!

Well I should be greeting and welcoming you back on the blog in a more heartfelt manner, but I am sorry, my world of insurance coverage hasn't changed. Patience...patience is really all you need.

So it's been a while, and I wasn't sure anyone was reading the blog, so I sort of gave up on it.

Much has happened between now and the last "real" post I wrote. We went to France for 2 weeks, which was really frustrating, we hardly got adjusted to jetlag that we had to turn around and fly back to The States. Yet, we managed to see dear old friends and that was worth the 22 hour flight there and back.

Then we had Zoé settled down in Pre-K at Linda Beach and I started subbing at Les Petits Francophones, a little French preschool in Oakland for almost 6 weeks. It was hard to juggle two schools and I started back in college studying Early Childhood Education in order to pick my brain and add homework to my workload...don't ask me why! but I love being back in school, though it's kind of an eye-opener as I am by far the oldest one in the class and I must admit it is much harder the second time around for I don't have the brain cells of a 22 year-old!

Halloween is around the corner and with Halloween and Thanksgiving I always think of IEP. Yes, it is that time again!

So I pick up the blog after Halloween, it's come and gone and now we are in assessment mode with everyone wanting to see Zoé: school psychologist, special ed coordinator, language pathologist, PE teacher, to name a few.
The IEP is set for November 13th at 8:00 am (Pacific time), keep your fingers crossed. This is where we decide whether Zoé is still entitled to her thearpies, her in-class aid, etc.

The BIGGEST NEWS of the BLOG, though is : POOP!!!!
We are free of: diapers, wipes, poopy fingers, poopy pants, smelly bags, etc.

On her own time, our lil Miss Zoé has decided that it was enough, the pressure of turning five was on and she has not been using diapers during the day and AT NIGHT for the last 3 weeks.

I think I am more overjoyed about this than her first steps! Hard to believe but I think it's true.

No more diaper bag in tow, no more "always make-sure-I-have-extra-diapers", no more hurting in the supermarket with a smelly princess next to me at the cash register.


I HAD TO LET YOU ALL KNOW!!!!! I am thrilled, overjoyed, feeling like the sky has no limits, that the road towards OUR "normalcy" has started to open up, in a strange way.

Though Normalcy is still far from what we live. We have our own.

Zoé had her bi-annual rehab visit at Shriners and it was terrific. The Doctor couldn't believe it.

She now wears SMO: ankle orthotics and her speech is progressing.

On a different note and I won't dwell on it, my symptoms have begun to increase drastically. I am now facing my limitations in many ways and I am not quite ready to discuss the feeling. I am processing it all. Besides, this is not the place to talk about it. This is Zoé's blog. In due time, when I am ready, I will discuss what is happening. After all, it might be what Zoé will face in many times to come. And in her lifetime, I am sure there will be a cure. Maybe not in mine. I only pray for hers!

Enjoy the pictures. I will try to be more consistent, if you only tell me that you are still reading these few humble lines.
Love to all.

Zoé and Le Chat

Spelling without tears

Blanche Neige

Mommy's heart monitor

These assessments are soooo boring

Love pumpkin patches

Definition of Special Needs

You child has been diagnosed as having “special needs.” What does this mean? 

Children with special needs are those who have, or who are at increased risk, for a persistent physical, developmental, behavioral or emotional condition, and who require services of a type or amount beyond that required by children generally. (Merle McPherson, MD, Pediatrics, July 1998)

Why is your child different than other children? 

Your child is no different than any other child, except that he or she needs the right tools to achieve a life of quality and satisfaction, and to be fully included in your community.

If you feel isolated, you are not alone. 

Nine million American children under 18, about 13 percent, have a special health care need (Safe Kids Worldwide). Children with special needs are more like other children than unlike them. All children need to be cared for, loved and supported.

Don’t forget, take one day at a time. Don’t let one day overpower you. Write down your thoughts and share them with others. Find a support group, Write  blog, and here I am...

(Oakland Children's Hospital and Research Center)

So much to write about, so little time. I promise to be back really soon to fill you in on the last two months.

In the meantime, enjoy the pictures of our little snug bug.