Feeds:
Posts
Comments

Archive for the ‘Kiddos’ Category

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!

(more…)

Advertisements

Read Full Post »

The more people I meet the happier I become. From the meanest creature one departs wiser, richer, and more conscious of one’s blessings.
-Samuel Beckett, Waiting for Godot

I guess when it comes down to it, I’m a pretty lucky girl. I’ve been asked on numerous occasions where my outlook comes from. It comes from you, the people who surround me. The people who love me. The people who help me learn from encounters with the “meanest creatures.” The people who remind me each and every day that I am blessed.

(more…)

Read Full Post »

Even though mito sucks, I have seen enormous strength in people who refuse to give up, people who follow their dreams despite – even in spite – of mito.

Just over two weeks ago saw the album release of my dear friend Stefani. The culmination of five years of her hard work and four months of my own. It was a huge success. We sold around 100 CDs and raised over $200 for UMDF and IDF through donations alone (she also donates a portion of each CD sold to the aforementioned charitable foundations).

The day after, we heard from a mutual friend. Her 10-year-old daughter Emma also has mito. While listening to the album, Emma found out that Stefani had mito, too. Her response? “Oh wow, now that means that I can follow my dreams too.”

(more…)

Read Full Post »

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.

(more…)

Read Full Post »

Last weekend, I helped put on a patient education meeting for the mito community. The meeting was incredibly productive and I am so incredibly grateful and blessed to have had some amazing friends to help us put it together. In preparation for the meeting, I put together a montage video with a song on my good friend Stefani Bush’s upcoming album, Hope Rising. Hope Rising will be released in November. If you’d like to order a copy, let me know!

The majority of the pictures were given to me over a the last few months to support the efforts of UMDF; others were taken at UMDF-sponsored events. I’m very grateful to all of those who shared with us. We hope the video inspires people to not live only to become victims of the disease. Rather, we hope you’ll join us in our efforts and on our journey. Because you, too, can be part of the cure. For more, please visit umdf.org.

PS I forgot to add one of my pictures on my last blog. Take a look!

Read Full Post »

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.

(more…)

Read Full Post »

First, I apologize for the delay in updates. It’s been a hectic week!

Last Friday, I had a routine neurology appointment at the Brigham. Not too much transpired, but the meeting confirmed that I am in need of a new neurologist. After the appointment, I rewarded myself with a visit to a couple of my friends over at Children’s. We try to visit my good friend Eithene whenever we’re in the area. As I’ve mentioned before, Eithene has been hospitalized most of her four years. While we were at Children’s, we also visited Eithene’s good friend Matthew. Matthew was in for an ileostomy to help with his chronic intestinal pseudo obstruction. We brought them some goodie bags packed with books and zoobles – an interesting toy that I had never heard of before Matthew professed his desire for some. We had a wonderful time visiting with our friends (and, of course, their parents!) before we were off to pick up Keith’s brother from the airport!

(more…)

Read Full Post »

« Newer Posts - Older Posts »