Thursday, March 14, 2013


I am fretting, I know I shouldn't and I know I should be in bed trying to get a good night sleep, but I cannot help myself.  Coming home from work, I hear the dreaded "It's been a bad day". Again, bad report from school, where Zoé wouldn't look for the shamrocks, bad report from Rosalinda, our bb sitter, Zoé wouldn't listen. Bad report from Horse Therapy, Zoé wouldn't put on her helmet, didn't listen, wanted to play.
I know Zoé has a full load, a plate full to the brim of therapies, day in, day out, but I do it for her! I want these therapies to be part of her life, like we go to the gym, she goes to therapies, because, if we had not started from when she was 4 months old, we wouldn't be where we are today. Funny, how I use "we" to talk about Zoé!
My poor baby cakes trying to do tummy time, sooo hard for her. It hurts to see this picture
Tonight as I watch her sound asleep listening to her lullabies, I hurt inside. I cried today, and she saw me and asked me why, and I said because I want her to be a good girl, and I know I must be strong, I know I must not shed tears, but then again we talk and I explain that sometimes mommy needs to cry, and then she  is much better again.
My baby in therapy...
Then I feel guilty, for I showed my weakness.

I met a mother on our Myotonic Support Group Forum who lives in Darwin, Australia. She is up for sainthood in my book! She has 3 daughters age 3, 6 and 11 and all three have Myotonic Dystrophy, all three have PDD-NOS (What Zoé also has, which I am learning is on the spectrum for Autistic-like behaviors) and all three have ADHD (What we've been told to monitor ) and all three have anxiety as they are watching their father slowly waste away...He is 36 years old, used to be an athlete and is now hindered by this disease.

My Zoé with her helmet and her holter heart monitor...
More therapies...
This walk down memory lane reminds me every day how hard Zoé is working and how hard she has it and how determined she is, and how strong-willed she is and that is how far she'll go. I need to remember to be kind and gentle to myself. I fret and I need to calm down and look at the beauty of every moment we share, for this is where the beauty lies. In these minute details that make every day worth living and fighting for.
Zoé is on her way. 
She is the LOVE of my LIFE!

1 comment:

George Sachs said...


You write so beautifully and honestly. I know the struggles you guys have overcome and the daily challenges and know that god has put Zoe in good hands.

All the best,