Monday, December 12, 2011

Off we go!!

We'll be leaving for France in a few hours and just wanted to send you all warm wishes for a joyful holiday season!
France will mean NO therapies, No running around, NO side benches, No waiting rooms, but RELAXATION for Zoé who really needs a break.
She'll need to recharge her batteries after months of extensive therapies.
We'll be seeing our osteopath though and that is always a treat, as I do think it really helps Zoé.
We'll try to keep horse back-riding and swimming on a regular basis if we can. We'll practice our sounds (The speech therapist gave me fun exercises to do while we are away).
Most importantly, we'll decorate the Christmas tree, celebrate Hanukkah or the Festival of Lights and usher our Lil'Miss Sunshine into the new year with good food, great company and play dates galore.
So to all of you out there we send our love and we'll see you in 2012!

Thursday, December 8, 2011

BERKELEY: High school pool used by special needs program...

BERKELEY: High school pool used by special needs program...

I feel so privileged. Zoé has benefited so much from the SNAP program. It will be a tragic loss if the pool has to close. The SNAP community is awesome.
Gooooooo SNAP!
ps: click on the link above to view the video.

Thursday, December 1, 2011

4 years ago already

Yes, it has been 4 years already. A new realm, a new reality, a new world, a new set of challenges, wonderful moments, epiphany of bringing a little being into the world. The new reality of what we didn't know has become our norm. The doors onto Zoé's world opened for us on that afternoon of December 1st and what a journey it has been. What a roller-coaster with its ups and downs, its up-ups and down-downs.
And now here we are. Zoé just blew out her 4 candles and a 5th for good luck, and I reflect upon the past 4 years. I can revisit my drive to the hospital across Manhattan to Presbyterian Weill Cornell, the triage room where nurses bustled and realized no time could be wasted, for I was already dilated at 7 with a baby in total breech position, and me unaware of the pain of the contractions as they ebbed and flowed, as they came and went. Then the epidural and the joyful ecstasy of having a baby girl.
The silence that emerged though, with no cry or wail, but the whimper of a mouse.
The baby that could not suckle, the milk that couldn't come, the echos, the tests, then the etherized moment when the doctor came to tell us Zoé wasn't going home.
Then blood drawn and sent for genetic testing. The fear of the unknown.
But 4 years down the road I also reflect on the wonderful journey it has been, how thanks to Zoé I have become a stronger person, I have learned that not being OK is OK, that rejoicing the minute triumphs of our daily life is great, that listening to her tell me stories, singing out loud, and kissing me is the best wage one could wish for.
But today as my toddler blew out her candles, I thanked her for being such a precious bundle of love, a fun-loving little girl with spark and spunk, with smiles that twinkle in her eyes and the most tender loving kisses one could wish for.
The journey ahead is going to be an arduous one. Her 2nd IEP (Individualized Educational Plan) is next week, on December 8th when her "fate" regarding services will be decided.
So far all the therapies have been worthwhile, my drives to and fro, my constant waiting in lobbies, arenas, side benches have been my daily lot, and I look forward to many more days where I can witness Zoé beating the odds.
So Happy Birthday, Zoé, and thank all of you out there who sent her best wishes.
She licked the chocolate ganache covered cupcake off her lips on your behalf!