An opportunity...

On August 7th, I will be jumpin' in the Hudson River off the 98th street pier, along with some three thousand other people, for the mile long swim that is the first leg of the New York City Triathlon.  

"Slather your body with vaseline" 

is the advice that I have received thus far, in response to me swimming in the disgusting water that is the Hudson River.  I figure if thousands of people do it every year, it can't be that harmful, right?  Let's hope so.  In the meantime, if you hear of something particularly nasty about the Hudson river, kindly keep it to yourself until after the race.  Or forever.  Thanks.

I actually have the incredible opportunity to race for a charity, the Muscular Dystrophy Association (MDA).  I have known a few people with MD throughout my life, one of which is someone that I remember with great fondness and affection, who had an impact on me during his short life. 

I am doing this Triathlon in memory of Timothy Fegan.  

Timmy was born on February 27 1985, was diagnosed with Spinal Muscular Atrophy at the age of one, and was my neighbor.  I have very distinct memories of going over to Timmy's house to play or babysit.  Most of those memories usually involve him at some point, wheezing or coughing and me freaking out and asking him if he was ok, to which he would reply, in a rather annoyed and impatient voice "I'm fine!!"  It makes me laugh just thinking about it.  I always thought of Timmy as having a rather dry sense of humor, as well as having a pretty accepting attitude about his illness.  I had the opportunity to talk to his mom, Tricia, a couple weeks ago to find out a little more of what life was like living with this disease, for both her and Timothy.

Spinal Muscular Atrophy (SMA) basically means that the nerve impulses that your brain sends to your muscles to grow and strengthen never actually make it to the muscles.  So Timothy really had no muscle tone and couldn't do much of anything for himself, including holding his head up, sitting up, rolling over, and he had a hard time moving his arms and legs around.  Tricia said that it was like taking care of a newborn, all the time.  She even had to wake up in the middle of the night to change his position to a more comfortable one.  SMA affects all muscle groups, so it also meant lots of respiratory problems, especially when he was sick with a cold, it was very hard for him to cough and clear out his lungs making it difficult for him to breathe.  He was in and out of hospitals quite often, which contributed to his not doing that great in school as his education was disrupted so much. 

Despite his shortcomings in school, Tricia says he was a bright kid with a great sense of humor.  She related a story that her father often tells about when he was babysitting Timmy.  

Timothy says: "Grandpa, I need a red crayon" 

"Ok," grandpa says, "just a minute."  Still no crayon.  Timothy asks for the crayon again and grandpa again asks him to wait just a minute.  

Finally, Timmy says: "Hey, grandpa, does your head hurt?"  

Grandpa says: "no".  

Then Timmy says while holding his fist in the air: "Well, it's gonna hurt if you don't get me that red crayon!!"

She also told me a story about Timothy looking out for his younger brother Sam, who was 6 years younger than him.  Sam was getting picked on by some older kids at a playground, so Timmy called him over and said:

"Sam, I'm gonna teach you karate"

Sam was all ears as he awaited his big brother's advice.

Timmy goes on: "You gotta kick your feet and go hai-YA!"

So apparently, he was also an expert in karate and taming bullies. ;)  Whether his advice was useful or not, it's clear that he loved his little brother, and wanted to do what he could to take care of him.

Timothy also enjoyed drawing and watching movies.  Some of his favorites included Free Willy (his headstone actually has the free willy whale on it), The Rocketeer, Star Wars, and Jurassic Park.  He loved to have visitors.  Tricia said that he wasn't always the most charming or gracious of hosts, but he did love it when people came over--his grandparents in-particular.  His bedroom overlooked the front porch and his bed was right by the window, so he could always see when people were coming and going.

He was enrolled in a special ed program at one of the local public elementary schools.  Tricia remembers going to visit and helping out in the classroom every once in a while, and it struck her that there were many kids that couldn't speak or communicate in anyway.  She got very emotional when she expressed how blessed she felt that at least Timmy had that--the ability to talk and express himself.

Tricia said that doctors told her that most kids with SMA don't live for very long, and my research showed that the majority die before the age of 2. Timothy lived to be 9 and 1/2 years old.  He passed away on October 1, 1994, when his lungs collapsed due to an obstructed airway.

When I asked Tricia what the hardest thing about being a mom to a boy with Muscular Dystrophy was, she said that it was feeling like no matter what you did, it would never be good enough.  She would never be able to change anything.  She wondered how it would be to be able to give part of herself and actually have it change the outcome of his life.  Even now, she says, she still thinks back and wonders if she could have or should have done something differently, or better. 

I for one, greatly admire Tricia for the time and energy and love that she devoted to Timmy.  I can't imagine the emotional and physical stress that she experienced on a daily basis, although it was not anything that I ever noticed.  I remember Tricia being very together and generally laid back about Timmy, letting kids play with him and push his wheelchair around at fast paces in the cultural hall at church.  The only thing I remember her being uptight about was when I would ride my bike over to their house and drop it on the walk-way, causing cracks in the cement. :)  Sorry Tricia and Craig!!   I saw for myself that despite being so limited physically, Timmy was a happy, fun boy, who had a mind and personality of his own, and family and friends that loved and adored him.  I'm grateful that I was able to know him and spend time with him.  I think his little voice, proclaiming, "I'm fine!!" will forever be ingrained in my mind.  To this day, it still makes me smile, as it is a great representation of how I remember his personality.

I am so happy to be able to share a little bit of Timmy's life with you and to have the opportunity to race in his memory.  I was very nervous about doing this, but it has ended up being a wonderful experience, to reach outside of myself and my family, to be a part of something a little bigger than me.  All of the money I raise will go to MDA, specifically for Spinal Muscular Atrophy.  It will go towards research for treatments and cures, supplying families with needed equipment and support, or helping to send kids to a camp specifically designed with their needs in mind.   I need to raise $1000, and have $900 left to reach my goal.  Please take this opportunity to be a part of this cause, to make a difference in the lives of those who live with Muscular Dystrophy everyday.  Any amount that you feel you can give will make a difference. 

Click here to donate!!

Thank you so much for reading this post and for your support!  And thank you to Tricia and Craig for sharing more of Timothy's life with me and allowing me to share it with others!!