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.