Wednesday, October 14, 2009

Rude Awakening

Rude awakening. I know this is a blog that has more to do with Zoé's daily life in California, but I also like to think of it as a sphere where I can either cheer for good things happening, or use it for the days when the spirals go haywire.

Today was one of those days.

Zoé was in daycare, I went to my ceramics class, worked hard at the wheel, and managed to produce a bowl, after an hour and a half, finished class with another bowl, hand thrown.

After that, had to deal with calls: checking on the Unified School District to see whether Zoé, considered low incidence (Physically challenged) would benefit from any low incidence funding. I was told that because AFO's and Serial casting were deemed medically necessary, she wouldn't be covered. Low incidence kids are allowed special equipment such as a desk, a chair in their classroom, once they turn three and go to preschool. Anyway, long story short, after that I ran a couple errands and went to the post office to mail some packages.

That's where I had a revelation, an epiphany or was it a rude awakening?
I wedged a package in a tight envelop and couldn't retrieve it, due to my hand weakness, creeping yet omnipresent symptom of MMD.

I asked the clerk to get it out for me as I had a question to ask her.
There she went on a ranting rave about I having an attitude, and a problem, that something was surely wrong in my life, etc, etc. I will spare you the details, but after listening to her litany of grievances about my attitude and what she thought was arrogance, etc, I burst into tears. I wanted to bury myself alive.

I felt so powerless and vulnerable for she had just pointed at the very weakness of my condition, I guess, it wasn't just my Achilles'Heel she hurt, but the very essence of what is going on in my life.

How I fear what is happening, how I feel that from today on I will have to tell people that I can't do this or that.
I told her at the end, that it was because of a neuromuscular disease, I had asked for her help, because I simply couldn't perform the task at hand, pun intended!

She then told me that she couldn't read my mind, etc, and that I should learn a lesson from what happened today....blablabla.

I now know what it feels like to have an impairment, whatever kind it is. You have to deal with the harsh world out there, where people won't always care or understand you.

All I know, is that I never want this to happen to anyone. I guess after crying and letting go of the much needed tears, I felt that even though I had lost control, I had also learnt something invaluable.

I feel empowered, because I have learnt a valuable lesson, indeed. I will never let anyone hurt me in such a way. I am now armed and prepared to fight back ot to let it slide, I like to think of Teflon, and letting what ever bugs me, slide by.

I will make sure Zoé is prepared as well, and as a matter of fact, she has started to show more of her feisty personality, which I praise. For all this time, she was more subdued and showed her vulnerability, but now she is fighting for that toy she so covets. More power to her. "Go girl" is what I want to cheer.

Well,once again, thank you for letting me rant and rave.

On a VERY positive note,however, Zoé is going for an in-water evaluation, for aquatic therapy. We will see how she does in the water next Friday, and if she is good to go, she will start the program in January.

Serial casting is postponed for another 2 weeks for Trish, Zoé's PT is going out of town. Will fill you in when we get the meantime, hope you are enjoying the fall and are getting ready for All Hallows' Eve or Day of the Dead wherever you are.

Zoé was a pumpkin last year, this year, the pumpkin will change itself into a cat on the twelve strokes of midnight!! Beware...


Anonymous said...

Dear Sarah,

How can I say this politely, but the people who work at the U.S. Post Offices are notoriously strange. Why do you think we are always reading about "some postal worker blows away co-worker with eight rounds"? Seriously, what you went through emotionally at the Post Office is not something that you should take to heart! I've had ugly experiences just trying to buy stamps.

The good thing is that you are healthy in your attitude about life and what it will take for Zoe, you and David to continue your journey and your determination to stay the course, which is onward and upward! Thank goodness for your blog and for all you are teaching those of us who have not had a child with special needs.

One more note...the second photo of Zoe is lovely!

Hugs to you all...Catherine and Pieter

Irina said...

My dear Sarah, it's been a while - Jsut remember that I not forget you and think of you often. I am thrilled by the progress of Zoe - she looks so healthy and full of life- and ever encouraged and cheerful for your strength and determination. You bet you have an attitude, an attitude of a fighter, of a winner. Tears out and away as we empty ourselves of bad feelings toxines,just give us more courage and power. I agree with Catherine's comments on the postal workers - they do look strange, apparently not only in NYC and they certainly have the wrong attitude. We, moms of children with special needs, understand even more what a single step forward is. As much as I get impatient about Vitto's delays, he is progressing and when I look back, I realize the great steps that he has done.Still, the shadows of discouragement and frustration can quickly approach to our door to what the future can hold for us. But, as we are often told, live the present immensely and the future one step at a time. I am trying.As you well mention, we are students for our children and teachers too. And the fact that we are teachers in our professions make us better equipped. Lucky Odile having visited you- I need to plan a trip to the west coast instead of crossing the atlantic for once. Please send me your email to send you some pics. Mine is Avec un peu de retard, recevez tous les trois nos meilleurs voeux pour la nouvelle annee. Bendiciones a Zoe.