Belonging to the Tribe

Yesterday was another Tribal meeting (using Lilian's word), I love it, a meeting with all the other moms with whom I share the Special Needs Journey. We try to gather once a month in a ritualistic way, around yummy snacks, good wine, laughter and tears, to vent or rage, to share and smile, to just be in the moment, when our lives have so much at stake.
This tribe: my dear, loving and caring mothers of kids with special needs. We share ideas about therapy, about understanding diagnosis and whether that is important, about how to work our way around the system; we check in, in an informal way, we ask questions and I usually come out of these get togethers pumped up with renewed energy and vitality.
We share our fears, and yesterday we pondered the fear we have of "what will happen when we are gone?", that is a common fear we have. "Who will take care of our loved one?", "of our defenseless, fragile, different, weak, child with special needs?". One of our friends was crying and we kept telling her to live the moment, "take it bird by bird", one day at a time, even if it seems trite, we HAVE NO CHOICE. Only the future will tell for itself.
Zoé's diagnosis (sounds better than disease) is so freakish, NO ONE knows what she will face in a year, ten years or twenty. And for that matter, I have added stress, for I don't know what I'll become?
But we need to live the moment, to learn to cherish every smile, moment of joy, but also the tears, the frustrations, they are all part of the package deal.
One of the ways I have of finding a reason for things is to believe that we were dealt these cards because God had it planned for us, He/She knew we could handle these journeys. Well, as Lilian said, and I thought it was hilarious, God could have sent us flowers and a bottle of wine, but no, the challenge is way different.
An eerie moment occurred at Zoé's French school when I picked her up on Friday and her teacher showed me her drawing.
The teacher had asked the kids to draw something in a white bordered square and she then asked the kids to explain their drawing and tell the story. She then wrote them out under the illustrations.
Zoé's drawings (Scribbles...she is not really into art) are always about sick people or monsters that fall and hurt themselves, or break a leg. She always wants me to draw a crying baby and then she kisses the drawing and I am to draw a smily face . Her characters are always sick, she loves to play doctor. I guess it is her way of externalizing her life. I thought to myself, well of course, it is her life!
Every since she was born she was sent to the NICU, to be analyzed, to be observed, to be assessed. She knows what challenges she faces in her own way. I dread the day she'll ask me why she is different, why she cannot jump or run as fast as her classmates, or go up stairs without holding on and hoisting herself up the handrail...but again, we might not have to explain...Zoé might never ask these questions...Be in the moment is all that matters. Cross bridges when we get to them...make lemonade when life gives you bitter and sour lemons and don't fret...easier said than done.
The school year is almost over, we are in the last stretch before a filled summer schedule.
I asked for Zoé to get ESY (Extended School Year) and it was approved. She will go to summer camp for a month, Monday to Thursday from 9:00 to 12:00, she'll get OT until mid-July, PT and Speech for the whole summer. I was so afraid that she might get a whole chunk of time without services.
Her speech is getting way better. The speech therapists are amazing, they use grape-flavored gloves to stretch her mouth and lips. Zoé cues herself to close her mouth, by putting her fingers to her lips, and really tries hard to pronouce her bilabial letters: M, B, P and all words ending in m, for instance. It is getting easier for Zoé to pronounce words such as magic, than Ham, for when the word starts with the letter you automatically start by closing your lips. When you pronounce a different sound and have to end that word with m, then it gets trickier.
Potty training is still not in place. Zoé goes on and off, and then doesn't care at all about being dirty...I guess physiologically it is harder because she has low muscle tone. Could it be because she doesn't feel it when it comes? Or perhaps it is because it is too much work, and it hurts...August is when I will implement the mission: bare naked for a month!!!! we'll try and see, but I don't want to add pressure and make it even worse.
Well, dear friends, and avid readers (yes, all of you who tell me in emails that I shouldn't stop writing because you love to follow our adventures) we wish you an awesome weekend and "happy" Memorial Day (maybe I shouldn't use the word happy) weekend.
We get three days off, hurray!
To Caroline, our dear friend who left today we wish "Bon voyage!" (I got to spend a night in San Francisco this week, and paint the town red...well sort of, we just had dinner, drinks and a comfy room at the Marriot Hotel)
We send much love your way.
Ps: I'll just briefly add captions to the pictures:
We took Zoé to the floating houses in Sausalito and used a shopping cart to stroll down the passage ways (I had forgotten her stroller!!!).
Zoé wears a tiara and gets ready to see her first play "Cinderella".
Zoé loves money machines...future casino gambler, I am afraid...