Friday, November 20, 2009

Allowing yourself to feel

The last couple of weeks have been quite emotional, and after what felt like a roller coaster ride, I have decided to make the jump and go to France. We were weighing the pros and cons of going before or after casting Zoé's foot, but I guess, being with my parents in these trying times, is really more important.
We'll have all the time we need to work on Zoé's foot when we return, on January 7th!
Yesterday, in support group, the emotion was palpable. As I sat on the edge of my seat I couldn't prevent myself from feeling what Laura, the new mom who has joined PIP told us. It threw me 2 years back in time.
She related her 4 month-stay in the NICU, with her newborn son and I could just see myself there. She mentioned how she felt that everything was wrapped in cotton, unreal. I would say surreal. I still remember the beeping sounds of the monitors hooked to Zoé, the smell of the antibacterial soap we had to use every time we walked in the room filled with babies, preemies and little ones fighting for their life. She mentioned the fact that the Laura she was before his birth and the Laura after were two completely different women.

I can so relate to that...

I knew in some way that motherhood would change me, but when you give birth to a child that has special needs, it takes on a special meaning! I also am not the same Sarah from that fun-filled night of November 30th, eating pizza with my dear friends in NYC celebrating my maternity leave, and the Sarah the following night, December 1st. Actually, that December 1st night was the best night of my life, for I didn't know yet that Zoé had MMD! I guess, I changed a couple of days later. Oblivious of the road that lay ahead of me. The hurdles, the pain, the grief, the bitterness I would feel deep down. Of course, the love, and the kind of love I felt for Zoé is stronger today than it was on that day and hasn't stopped from growing one bit. She fills me with so much joy and pride. She is my SPECIAL Zoé, with her SPECIAL needs and a spirited little girl, full of life. She is the beacon of light guiding me in the dark moments of this long journey ahead. The loss and the grieving process are things I have to work on, on my own. Reflecting, letting myself feel the pain and learning to let go of these feelings. It's a long and arduous process, but in due time, I will be able to find fulfillment, with my own conflicts... Bahar wrote me an email today saying how she was glad I allowed myself to feel at today's parent meeting. "I am always amazed at how you hold it all together,"she said.
Being strong is not always easy. I don't always allow myself to feel. It's easier to put on your armor, to remain oblivious.

Here is to fill you in on our little trooper and her latest feats:

I filmed Zoé while she was in class today, so that David could see what a bright student she is: placing finger puppets (Big Bird) on her head, ears, mouth, neck, elbow at the command of her teacher. Throwing a rice bag in the bucket (Future Baseball Fan), smelling lemon extract and chouting: "WAOW" (Working on her facial muscles, and soon on the Food Network!!) , signing "My turn"(Sign language is invaluable, Zoé is definitely trilingual!!!).

For the first time she walked into PIP with her walker, and she was sooooo proud of herself, being independent, down the hall, into the playroom, and into her classroom. The walker is "her legs", and she maneuvers it beautifully, making corners, turns. She is quite skilled at it. We took her shopping for shoes with her walker and she now walks to CCS without being strapped in the stroller, but walking on her own. She loves it!

Yesterday, one of Zoé's teachers from PIP came for our monthly home visit to assess Zoé. I asked her whether she had some good tips for me while we are in France. As opposed to typical kids, Zoé doesn't crouch to play, but puts her legs in what we call the "W", so we need to address that. Finding ways for Zoé to crouch in order to build hamstrings and quads. She also needs to build butt muscles.
The way she twists her foot is also due to the message her brain sends to the foot. So we need to have her engage that foot, learning to straighten it on her own. It is difficult for Zoé for it is all she knows, but we found another trick! I place a sticker under her foot, a sticker of Elmo or Cookie Monster and ask Zoé where they are, she then straightens her foot to see under it. We also have her kick the ball that we place on the side of her foot. As you can see, never a dull moment!
Today, Zoé's friend CHACHA (AKA Charlotte) came for an impromptu luncheon-playdate. Any mom will know that keeping a schedule and planning play dates is easier when they are "Spur-of-the-moment" things. Having the girls together was great fun. Chacha and her brother played in the tunnel, while Charlotte's mom and I had time to catch up and share therapy ideas and other tips.

Well, I need to get organized before we go to France so this might be my last post before I return in January.
If it is, we wish you all a wonderful Thanksgiving, Happy Turkey Day!
Also joyous and peaceful holidays and the best for 2010.
ps: I hope I can write from France, but I'll need to see how to fit the blog in while visiting with family and friends.
Till then, we send our love.

Monday, November 16, 2009

Mommy's Day Off and Super Daddy

I just spent a fun-filled 48 hours with Anne and Caroline who came from Brittany all the way to San Francisco for 48 hours!
They stayed with us one night, in Piedmont and Zoé adopted them immediately as "Nanou" and "Carline".
We then left David in charge of Zoé and the household and left for San Francisco to paint the town red. Well, we were actually very good:we went shopping, dining out and spent the night at the Mariott, courtesy of Caroline and Air France!
I must admit it felt good to be "free" of daily chores and I really was happy David and his Daddy's girl could take this time off to bond and have fun.
David "cooked" 4 meals for Zoé, took her to the sandbox, on a walk, for a slice of pizza and even gave her a bath!!! He took her to our PT the next day so she could see Zoé's foot.
I think it was good for David to get a feel of what our daily routine is like. He can have a greater appreciation of it all.
So casting starts again on Wednesday and then after 2 possible series, new AFO (Ankle Foot Orthotics) on the "bad foot", and we'll be able to go to France to spend time with "Taty and Nanny" aka Papy (Grandpa) and Nanny.
I really look forward to sharing QT with everyone in France.
Until our departure we have much to do: stretching the foot, massaging, brushing it with the little surgical brush we use.
Hope this finds you all well, ready to start preparing for Thanksgiving and the Xmas and Hanukkah holidays fast approaching.
Till then, we send our love.

Sunday, November 8, 2009


MDA, Muscular Dystrophy Association, the acronym could also stand for "Maman, Daddy and Amusement". We attended a seminar sponsored by the MDA today, and we got to meet up with Lisa, Kayla's mom as well as Leslie, our support group facilitator, and countless other people.
We were really glad to have gone as it made us aware, that we are part of this wonderful community of people.

Zoé was greeted by a lot of people amazed to see her walking triumphantly with her walker. I was so proud of her. She felt empowered herself, and didn't stop walking all morning.
I think she was a true inspiration for others and made quite an impression.

The seminar was devoted to MMD, but also Duchenne Muscular Dystrophy, Charcot-Marie Tooth, Becker and other diseases under the same umbrella of Muscular Dystrophies.

Experts, such as neurologists gave talks followed by Q and A's and we then got to chat with our friends over lunch.
Some awards were given for individuals who go above and beyond for the people MDA serves.

The two-day seminar was entitled " Sharing the Journey", and again, yes, I like this word of journey. We get to voyage through many new territories, meeting new friends along the way. Sometimes, it is a wild ride paved along boulders of medical bills and claims to file. And for Zoé it is crossing the threshold into a new world. The world of those who can walk and see how great it is not to be crawling, face down.

"From [y]our unique perspective, [you] may have the ability to see the full beauty and diversity of this life." (Michael Bougher), and this is so true for both Zoé, David and I. We have come to realize how amazing this life is, despite its challenges. It has so much to offer.

We were told that this month is "National Family Caregivers Month November 2009" , and I was honored to be applauded by a crowd of people, who recognize how hard the job is, yet, how rewarding.

"Caregiving is one of the most challenging jobs any person can do. It is challenging emotionally, fraught with feelings ranging from guilt to love. It is challenging physically, as you use your body to perform tasks your loved ones can no longer do. It is challenging financially, as you negotiate staggering medical costs and fragmented resources. It is challenging spiritually, as you pursue love and meaning in the face of irrevocable loss". This is what one of the guest speaker said about caregiving.

I realize that for me, things are a bit different. Zoé can do so much, despite me having to carry her around, those days are numbered...for as soon as the serial casting is done, as soon as she is fitted with braces and proper walking shoes, Zoé will be on her way. I don't deny the financial burden, but I have learnt as I spend hours battling the system that"the squeaky wheel gets the oil"and I have now adopted this as my motto.
Spiritually, it is challenging, but I don't feel loss, I have learnt to accept that my life is nothing like I had anticipated it to be. I only feel the loss of not having gone to Italy, but as I mentioned before about the "Welcome to Holland" metaphor, I love The Netherlands! They have made me a better person, I think, a stronger one, and I wouldn't change my journey for anything in the world!

Thursday, November 5, 2009

Crazy about Le Chat!

Where I'm From--Poem

I just wrote a poem, and thought I would share it.

I've been doing quite a bit of soul searching lately... Will fill you in later.


Where I’m From

I am from marshes down the lane,

From gathering pine cones in the woods,

From lush blackberries in buckets,

And apple-picking in the orchard.

I am from the stone house standing tall above the cliffs,

from the cypress tree losing its branches in every storm.

I am from walks to the mill,

From long afternoon days overlooking the ocean.

I am from the bat in the attic.

From the sweet and savory soups cooking on the stove,

As the scent seeps into my bedroom on the top floor.

I am from Bach’s Cello concerto,

From long trips in the van to Portugal or Spain.

From market squares and oyster shells,

cracking crab and sweet white wine.

From rocks and roots under my footsteps.

I am from campsites and cliffs

Sand and seashells from the beach,

From books and textbook learning,

And demanding exams in the morning.

I am from the early bus ride in the dark,

To the other side of town.

From the ribbon of asphalt unfolding under our wheels.

From glowing ambers in the hearth,

And thatch roof houses nestled in the marshes.

From grilled fish to spicy chicken,

From fresh dough churning into warm and crusty bread,

From sweet honey and Irish tea.

From the waves crashing endlessly

And from hand in the pocket as a sign of hello

I am a leaf snapped off the family tree

Longing to be back clasping its trunk into my hands.

Monday, November 2, 2009

Hello ween

Halloween was eventful this year, with the Piedmont Parade, pumpkin carving and tricksters at our door. Zoé didn't stay in her costume for very long...and only wanted to crawl on the street. It is such a difficult time when all she wants is the floor and out of the stroller. We should have brought out her walker and she could then have marched in the parade following the bag-piper. What a shame, next year we'll know what to do.

Zoé has been doing great with the cast so far. We are going to have it taken off this evening and a new one casted on. It won't be very easy as the electric saw makes horrendous noise and Zoé tends to panic thinking that Trish is about to saw off her foot, it is quite impressive and I try to sooth my trooper by putting headsets on her ears to muffle the noise as best I can.

I wrote this a while back and had left it as a draft in my inbox. Well, casting was halted again due to the skin "cracking" underneath. Poor Zoé...she has been through the wringer since birth and yet, she is still upbeat about life and her daily routines.
I am now working on stretching the foot, helping her to maintain it straight, to have it flush against the floor. But Zoé's foot is now in a position she has never known. Since birth she's had this cavus deformity and it is now getting worse. It is a shame for we had gained quite a bit of range and now , as we are waiting for it to heal, we might lose that gain. Zoé takes quite a bit of time to heal, for her blood circulation seems to be compromised. Is it due to her condition? we don't know. The truth of the matter is that we can't do anything until she heals.

As for the helmet, this protective shell that she wore for 18 months is now off. We went to measure her head circumferance and she didn't really grow in the last 6 weeks. So I can now go crazy with barettes, clips and headbands...
I can't even imagine Zoé putting it on again. She had it for so long it had become a part of her persona. I couldn't imagine her without it. Now that it's off for good, she has to learn to be more self-aware of her surroundings. I also think that the helmet impacted her vision in some way. When you can't see from the corner of your eye, everything is narrowed, her peripheral vision is altered and I am sure that she feels more at ease in that respect. Speaking of vision, Zoé tends to get rid of her glasses quite a bit...another battle to fight, but a fun one.