Friday, January 13, 2012

The mother lode or the mother load ?

The mother lode: definition
an abundant source. I like the idea that the word" mother" is included, and "abundant" as well.
After an entire month of being the abundant source of : love, care, comfort, play, reading, providing, caregiving, I am done. I was afraid of a separation anxiety moment, but when Zoé went back to school on the day after we returned I was relieved to see that she did fine without me.
Funny how we tend to always anticipate reactions, fueling the fears and anxiety we may have to feel on a daily basis.
France was great, Christmas came and went, New Year's Eve was a wonderful reunion of beloved friends. Our annual 2 appointments to see the osteopath brought much comfort and I truly do think they help Zoé tremendously. I wish we could see the osteopath more frequently.
Funny enough but I mentioned the "poopy" issue and he did say that all that relates to "guts" and therefore "poop" have to do with "the Mother", the attachment, holistically speaking, Zoé has not "cut the cord" and I probably haven't either. Being a mother of a child with special needs, we feel compelled to always help, provide, forgetting to let go. I know that for Zoé's sake I need to let things fall off, "I have myotonic Dystrophy, but it doesn't have me", it might seem corny, but it has to become my motto.
On a parenting issue, France brought much discussions with my brother and friends.
As I have written previously, Zoé is different, but she is also part of the neuro typical toddler realm, and trying to tame the toddler (Book Title, by Dr. Green) is the most challenging and difficult task at hand.
It is a double edge sword because I need to set rules and limits for Zoé, but because of her disability I probably tend to be less rigid, and more lenient.
What to do? Make things easier for myself.
DO NOT SCREAM, if you do, the toddler has won, seeing a parent scream and lose it, they think, I have managed to let Maman lose it, I have won.
My brother mentioned the "broken record" technique where you repeat over and over what you want your child to do or not do. Zoé finds that very funny and it doesn't work for me.
Long effusive talks don't work either. KIds are concrete, they need direct orders or dictates, rules and principles that must be obeyed. Easy enough to say.
Zoé, like most kids her age, likes to push limits, pushing the envelop farther and farther away. What makes me happy is that at least she is like every kid her age.
France was also good because apart from the osteopath and a bout of stomach bug, we managed to not do much, which was GREAT, no running around, no therapies. Relishing the company of Nanny, friends, family.
Enjoying the peace and quiet of Brittany, fires at night, good food and wine.
I really want to strengthen Zoé's ties with her French family, her cousins, aunts and uncles; she loves them all very much and being far away is hard.
Zoé is now back at school and her physical therapist has sent us an email of praises for her first day back.
For the coming months we have a couple appointments. The first big one is in February at Shriners Hospital where we go do a motion analysis. They will have zoé performs tasks for an hour after placing probes on her that can detect what muscles she fires, and which ones don't work. It will be a good baseline to see how she evolves.
She still falls quite a bit, and needs me to carry her around. 34 pounds of dead weight, but I should say 34 pounds of love, is quite hard on my back. She is lucky that my arms are still strong.
My legs have weakened, but I still try to walk as much as I can, exercising, sleeping a lot, it all helps. Yoga and rest are also part of my daily regimen when I can.
Voila dear readers. I would like to thank all of you who send me emails or comments, making me feel like I have to write. You are my inspiration. Above all, thank you Emmanuelle for your long email, I must respond to it.
With this I wish you all a wonderful New Year, full of Hope for a cure to be found, for love and serenity in your respective lives and most of all for your continued support along our journey.


JulieAnn said...

Thank you Sara. I just found your blog via the MD website. My stepdaughter's little girl has CMD. I live in the Bay Area and I read about the various programs you have found for Zoe. I do no know how this little girl's life will fare but I hope she will have some of the same opportunities that you have provided for your sweet girl. I have forwarded your blog to "grandfather" and I hope we will learn more about ways to help his grand daughter.

Sarah said...

Hi JulieAnn,
I am so glad you found the blog. I try to share the hurdles and successes of the journey we are all facing together. Please feel free to ask any questions and please extend my warmest wishes to your stepdaughter.

Anonymous said...


So glad you had a great Christmas in Brittany with all your family.
I would love to see photos of NANNY with Zoe!!!!!


Nanou said...

Coucou SuperSarita,
it's been a while since I took a visit at your blog & it's a really good way to get news & have a feeling of your feelings.
New Year's Eve was magic, so fullfilling to see you & see Zoé's becoming such a strong tempered girl . She had a ball with Malo & Bleuenn, Haha!
I'm so admirative of the work you do with her & the strenght you find to manage it all ... You have to take care of yourself hermana mia.
Loads of Love & thoughts,

Sarah said...

Thanks so much herman mia, Nanou!!! Your friendship means the world!

Nanou said...

Missing you, sending you warm thoughts guapa!