Tuesday, June 30, 2009
Wow, I don't know what to say, Zoé is now in her little "wonderland" of independence. She is "up and running", and nothing seems to stop her.
Monday, June 29th will forever be engraved in our memory. Zoé went for a stroll with her CCS friend, Charlotte. Her strong-willed playmate who gave Zoé the desire to be walking with her. We left the building of CCS and onto the playground, bubbles in the sky, back into the building, all the way down the hall to the washbasin, and back again to the doll houses.
Charlotte would turn around and chime in:"Go Zo!!", "You're doing great, Zoé". Such amazing emulation!!! It was beautiful:
Tears in my eyes, I felt blessed, but refrained from crying. I am savoring these moments and I am "saving" those tears for the day Zoé stands up and walks without any help, just my hand in hers and she leading me towards more blissful moments...
I recently read an article in The New York Times about a father raising his daughter whose mother died last year of a sudden undiagnosed disorder. This is what he said, and I thought I would share it with you, for it really strikes a chord in me.
"Living together [Simon Van Booy, and his daugther Madeleine, 4] means that we sometimes have to manufacture our own kind of happiness, because the world's idea of it is so out of sync with our reality."
Beautiful truth and it's this whole idea of the manufacturing that I like.
Building our own path to success, brick by brick, or step by step, like giant leaps, even though they seem minute, they are unreal.
I will leave you with this quote and these pictures of Zoé with her pals: Charlotte and Manav, riding along in their walkers towards "wonderland" the next exit!
Wednesday, June 24, 2009
Big big milestone!!!!!!!!!!!!!!!!!!
Zoé has started to walk with a Fisher Price pushcart, not an adaptable one! She did try a walker for a couple days, but it was too easy for her, she just let herself glide, without using any muscles, with the pushcart, she's working her abs, her biceps, triceps, and good head and torso control.
I am totally ecstatic and very hopeful that she is going to soon take off on her own. She feels so proud when she cruises in the living room, or at the West Oakland Medical Therapy Unit greeted by her cheerleaders: Mom, Dad, Maud, Marybeth, her Physical Therapist who comes for home visits, Trish, her other PT, Kitty her Occupational Therapist, as well as Kirk her CCS Physical Therapist.
Zoé has shown so much determination lately. She is on the go and nothing seems to stop her.
I am now looking forward to our next benchmark: serial casting. Even though it is probably going to be a nightmare at first, if it can stretch Zoé's foot and correct it, then everything will slowly but surely come into place. The serial casting will most probably last 6 weeks, during which she will wear a cast, every week we'll take it off for 20 minutes, then on again for another week, with a new stretch and so on. But I guess I shouldn't anticipate how nightmarish it will be; we'll cross that bridge when we get to it :-)
Tomorrow: cardiologist for annual check up, EKG, Holter monitor (she has to wear it for 24 hours) and other heart monitoring. Being a muscle, we need to keep a close eye on it: making sure that it helps blood flow and spreading the love.
On July 9th, we are both going to the MDA (Muscular Dystrophy) clinic where we see a panel of specialists: pulmonologist, neurologist, cardiologist, physical therapist, speech therapist...to look at all the areas affected by MMD. Clinics usually last 3 to 4 hours, but Maud will be with us, and she can take Zoé for a stroll in SF in between doctors. I already saw a pulmonologist who checked my lung capacity: 93%, I am fine.
On a lighter note, Zoé's Grammy Gigi came from NYC to visit. It was great to have her with us so she could see how Zoé is thriving: music class, PIP (parent Infant program), CCS, etc. It is nice to have family members attend these programs, so they can actually see everything that goes on.
At PIP, Gina (Grammy) went into a room and looked through a two-way mirror (where people can look at you from one side) into Zoé's classroom. I am DYING to go behind the screen and watch Zoé perform.
We had a fun-filled 10-day visit and it culminated in Sonoma for some wine tasting and a Father's Day breakfast "party".
Voila for the latest news from this side of the Blog! We do LOVE Holland, for it has SO MUCH to offer...
Wednesday, June 17, 2009
Open the link if you want to see Zoé's latest pictures; we hope you enjoy and see how beautifully she is coming along.http://www.pictage.com/669327
Life is good, the summer has kicked off with much needed help as we have a French BBsitter staying with us. She is lovely: neat, organized, super friendly, hard working, and most importantly great with Zoé.
-Zoé is now using a walker, which makes her more mobile and not so strapped in, as in the stander.
-Zoé has entered a new phase: anxiety separation. Could it be because her BBsitter is here and she thinks I am leaving her? I was told that though it is much harder to say goodbye when I leave, I must do it every time. If I slip out of the house unnoticed, Zoé will wonder why Maman has suddenly disappeared...it will worsen things if I don't use the "goodbye kiss ritual", she will become a highly vigilant child, needing her eye on me every time I am around.
-Zoé didn't qualify for speech therapy, she's only 17% delayed and that doesn't make her eligible for therapy. It's good, she's learning two languages at the same time, and her upper lip might prevent her from pronouncing certain words: dédé for bébé, dada for baba (her bottle)...well, she'll catch up in due time, I am not too worried.Even though oral motor skills are precursors for expressive language, she will manage to develop speech for she is quite the chatter box in her crib when she first wakes up. How I wish I knew what she was talking about... At least Speech Therapy will be one less place we'll have to go to in our already overbooked schedule!!!
-Zoé got her first pairs of shoes, hard to fit them over the braces and not very trendy, but who cares, as long as it offers more grip when she is in her walker, that is all that matters.
-Zoé will be serial casted when we come back from France in early September. It will be a real challenge, but I am willing to try is at it will offer Zoé a really good stretch on her tight foot and will hopefully enable her to walk in her AFOS (Ankle Foot Orthotics)with more stability.
-Last but not least, Zoé is an incredible climber: tables, stools, benches, rocking chairs, couches....probably anticipating Mt Everest....it is something she masters quite well, and she is absolutely determined to climb and walk...so patience is our motto and I cannot wait to write in a future posting that Zoé has taken her first steps.
-Zoé now stands up in her crib! A vision that keeps me dreaming and hopeful.
Friday, June 5, 2009
Here is a poem we discussed in our Support Group.
I love the metaphor and hope you'll enjoy it as much as I do!
WELCOME TO HOLLAND
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.
I also invite you to watch the following You Tube video for it is an inspiring part of the journey, even if Zoé doesn't share the diagnosis pictured in it. It makes you think and reflect...
Thursday, June 4, 2009
Zoé has started some sort of cruising.
I don't want to set expectations too high, but I am ecstatic.
I can see her making teeny, weeny steps, but these are giant momentous footsteps.
She is trying so hard, it makes my heart skip two beats everytime I see her making attempts.
I have been feeling really upbeat. Things are looking up.
April 23rd: Zoé can stand up from the ground. She no longer requires a stool, or chair to do so.
May 22nd: Zoé is standing in her crib, when I go in to pick her up from her nap, for the first time. She hasn't done it since, but I remember thinking about that moment for so long, that her image standing there, behind the white bars of her little crib, is forever engraved in my memory!
It makes me think of this analogy one of our Support Group Moms mentioned: we have all these expectations for our children, being in a soccer league, taking ballet classes, and then there is the acknowledgement of the LOSS we may feel, when we put that book on the shelf and are never sure we'll ever get to read it (The Ballet, Soccer Book).
I like to think of chapters.
In my book of Zoé's life, I see a lot of wonderful chapters, and yes, maybe in appendix we'll have the ballet class she'll never attend, but the world is her oyster, sky is the limit when you want to believe in it. The silver lining is what she will accomplish, in her own way, on her own time.
Doctors are the Cliff notes we might need to read the book along the way, but those are medical notes, records.
Zoé cannot be pigeon-holed or labeled in such a way, She will surprise all of us, with her willpower, her energy, stamina, and the endless and boundless desire she has to be independent. She masters climbing and for now, that is all that matters. Ballet classes seem so far...
The one small step for Zoé is one giant leap for Maman.