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Archive for the ‘Tutoring’ Category

Christmas got sick

Posted in At the Doctor's, Blessings, Coming together, Family, Friends, Holidays, Hospital life, Immune Deficiency, Kiddos, mito, Tummy troubles, Tutoring on 20 December 2010| 1 Comment »

It looks like Christmas came to my room and spewed red and green vomit everywhere. And I love it!

I’ll admit it: I was starting to lose my spirit a little after I’d been in two weeks, without an end in sight, and the projection of spending Christmas at MGH. I’d been poked and prodded every which way. Despite what my medical team was doing, my blood work was abnormal. And my first glimpse at freedom (the first attempt at the GJ tube procedure) failed. Fortunately, I’ve surrounded myself with people who make it nearly impossible to lose one’s spirit!

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Teaching the Color Spectrum

Posted in Autism, Kiddos, Raising Awareness, reality, Special needs, Tutoring on 15 November 2010| 2 Comments »

Sometimes I forget that my favorite tutee is on the autism spectrum. She is incredibly bright and happy. She’s enthusiastic and engaged. But I get occasional reminders.

Today, my optometry appointment was canceled so I called her mother to see if it would be okay if I came earlier (Wednesdays are half-days for her so I usually come quite early). She asked my tutee. All I could hear on that end of the phone was a resounding NOOOOOOO.

Kids on the spectrum usually live quite rigid lives. Rules are absolute. Schedules are absolute. It’s most certainly not easy.

But that’s not the most difficult part. Those on the spectrum also have difficulty recognizing and mimicking social norms. It means many live isolated lives. It does not, however, mean that they do not have feelings and desires to connect.

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Part of the Cure

Posted in Boston, Canobie, Friends, Hope, Hospital life, Kiddos, Legislation, mito, Raising Awareness, Six Flags, Tutoring on 24 September 2010| 2 Comments »

Sometimes when dealing with something as ugly as mitochondrial disease, it can be difficult to keep the focus on the good and the cure, rather than the sick and the disease. For this reason, I feel incredibly lucky and blessed to have such an amazing support network of friends and family. Even through the bad, they are able to keep a smile on my face and laughter in my belly. They are able to remind me not to focus on the disease, but rather they push me to fight for the cure, to become part of the cure.

This week is Mitochondrial Disease Awareness Week. But rather than tell you more about the disease – I think I’ve do a pretty good job for the mito-illiterate – I want to share with you all the good and amazing things I am blessed to have in my life. Because living with mito is not just about living with the disease, it’s about living.

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