Fretting

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!

Post # 221

221st post, wow, I never thought I'd still be writing, but it is definitely my best therapy.

How to fill you in on the latest news?

Zoé is doing great, so that is essential.
The most worrisome part for me is about her fine motor skills, though. She definitely does not like anything that entails holding a pencil, coloring, cutting, pasting, tracing.
So we are going to establish a new system to try and motivate her to do more fine motor skill work: golden coins.
I know this might shock some of you, but we are going to "pay" her for doing chores (like cleaning her room, helping putting books away, brushing her teeth on her own, with supervision, etc.) and working her fine motor skills: one coin will equal 1 minute of screen time. Bribery is awful, but when Zoé saw the golden coins that arrived today, she was thrilled and immediately told me she wanted to draw. We are going to establish the rules with her, we will have a family pow-wow and decide together how we want this system to work. She will collect coins in a glass jar and she will decide when and how she can redeem them.
Her OT thought it was a good idea. Perhaps it will teach Zoé the value of "money" and how hard work "pays off"!
She loves being on the computer, playing games, spelling, etc. The one positive aspect of this is that at least she is in the computerized era, and that pretty soon, all will be done on the computer. Though I love cursive writing done by kids. For Zoé holding a pen is hard, coloring is hard, this is why she doesn't like it.
On Thursday mornings, we stay home before her Speech therapy at 10:30 am and we try to do arts and crafts, but I end up doing it all. She is quite impatient when it comes to painting, coloring, cutting, etc.
I will let you know how this system works.

As for me, I am my usual self, not wanting to dwell on the scary symptoms, on the extreme fatigue, on the feet that cannot walk as fast as they used to, on the hands that canon open bottles, but can still type ;-)

I have to let you know about the latest support group meeting I went to. It was a real eye-opener. I met a new couple that attended the meeting. A brother and his sister. It made me think of my own brother, who is also affected by MMD-Type 1, and how I might help him out one day.

The bond between these two people was amazing. She, motherly, letting him talk. Expression-less face, smile-less, crippled hands, and the sadness of remembering why I was there.

It was comforting though to be able to assuage him, to share ideas of support and to tell him how important his health is.
Yet, these meetings are hard, and painful reminders of how we all share the same journey, whether our symptoms are the same or not. Whether are hardships are lived differently.

I will put pictures on the next post. I don't have access to my photos as I am at the local coffee shop studying for my test tomorrow! back at school for my last 3 units.

Voila dear fellow bloggers, (readers or writers), till the next post I send love and warm hugs.