Back to School Night - A Mother’s Experience

INSTRUMENTS (#3)

You can ring my bells: parts assemblies
post by Maria Mortati

Today I took my bag of known parts to OSH to match them up with the unknowns: length of threaded rod will make the best sound, and fit in my frame, what material is best for the sound, and what type of washer (now that I know roughly what size fender washer to use) is best acoustically.

I spent a lot of time shaking, assembling and trying pieces together. The folks at OSH were nice and advised me on where to find what I needed fast (they told me they spend a lot of time helping kids on their science fair projects).


Then I worked out the parts for the hand crank assembly. Think I have nearly everything together to start putting this baby together. I found some old bronze bells in the backyard yesterday, so I may incorporate those too. We'll see!





CHARCOT MARIE TOOTH

I’m happy to introduce a new participant to the project, Elizabeth Ouellette. It is thanks to her sincere and engaging outreach that I have become involved in raising funds and awareness for the CMTA. However, Elizabeth has a viewpoint that I do not; she is the parent of a child with CMT. I’m very pleased that she agreed to write the following post describing some of her concerns with her son Yohan’s limitations at school and a glimpse into emotions attached. I’m also pleased that Elizabeth’s son Yohan has offered to write his views on the situation as a response that will be in the next post. Tim.

Back to School Night - A Mother’s Experience
post by Elizabeth Ouellette

As a parent of a child with CMT, I try to live in the moment, taking on challenges as they present themselves. My mantra has become minute by minute, day by day, breathe deeply, in, out - 1,2,3,4….

However, those moments of discouragement, helplessness and frustration pop up, at times, out of nowhere at all. In the blink of an eye, my own personal and internal sadness suddenly leaps forth and display itself, usually when I am the least prepared to deal with the situation at hand.

Often I liken my sadness to a small child, who blurts out the most embarrassing information, for all to see and hear. At these times, I become somewhat flustered, and try so hard to control my reactions, so as to minimize the distraction, continuing on as if nothing had happened or had been said.

Last night, I attended Yohan’s parent/teacher conference where all the new teachers introduce themselves and the curriculum, rules and policies. When the staff started talking about all the exciting field trips, hikes, museum tours planned for the year, my mind started to wander into the forbidden territories of melancholy and gloom. By the time I realized where I was, turning back was no longer an option. I angrily ruminated on all the potential difficulties and improbabilities Yohan would have to face when considering these trips.

“There is no way in hell he can walk 5 miles for a tour of the Headlands Institute”, I thought (his muscle weakness, fatigue and neuropathic pain hinders his mobility and stamina)! Ah, the California Academy of Science sounds great, if standing and looking around for hours were a true possibility. It is not. How about ice skating? Wow, looks like so much fun, unless you can’t ice skate. Oh, that 2 week trip to Prague which requires bike riding and walking from town to town? No thanks, I’d rather stay home.

Suddenly, I realized that the negativity had to stop, because it would neither help me, nor Yohan in the short or the long run. So, I honored those feelings, thanked them for showing their face and focused on directing my attention to potential solutions and ways to circumvent the issues at hand.

Soon thereafter, the meeting came to a close, and I made a beeline to the biology teacher who is organizing the Headland’s Institute trip. Yes, she has already been thinking about how to include Yohan. She plans on making a few phone calls to see what can be done to minimize his walking and maximize the experience. Her awareness, proactive stance and empathy soothed my anxieties. “It will all work out”, I tell myself.

I feel thankful and move on to the English teacher. This is her first year at Yohan’s school and not yet up to date about Yohan’s CMT, which somewhat affects how much and how long he can write. As I am giving her a baseline sense of what CMT looks like, by detailing a few of the symptoms (nerves gradually die, muscles weaken) my gut suddenly starts to cramp, my breathing accelerates and tears are rising up to fill the corners of my eyes. Addressing the inner mechanisms of my psyche, who hide cowardly behind the curtain in OZ, I plead, “Pleeeease, not now…later….I’ll address these feelings, at a more appropriate date and time…I promise! I bargained hard and well, because from one minute to the next, I felt a calm overcome me, and I was able to gather the control and strength needed to finish the conversation coherently, intelligibly and rather superficially.

On my way home, I wonder how Yohan himself feels about his limitations. It is not a subject I bring up often, if ever at all. Am I projecting my worries, fears and sense of injustice on to him? What if his point of view and perspective on his life and his CMT differs vastly from mine? My plan is to ask him……tomorrow ……. And I did.

(To be continued).