This was the seventh year Toby's Green Team participated in the Cystic Fibrosis Foundation's Great Strides walk, a gentle 5k through the neighborhoods of southeast Portland. Our team size was reduced this year - a spate of illnesses, previous engagements, and family issues prevailed on some of our regular striders. Our small team included long-time friends and Toe's best friend from school. Having reduced numbers meant that we stayed closer together during the actual walk and then we were all able to go to pizza afterward (this was also a first because Toe is usually fried after the walk and I have to take him someplace to rest).
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| 2018 Toby's Green Team - Small, but MIGHTY! |
Toe loves the event every year. He is surrounded by loved ones and has a chance to see how much support there is in the community for his rare disease.
I think J and I have more mixed feelings about this walk. Because people with CF can cross-contaminate nasty lung bacteria, the CF Foundation recommends that people with cystic fibrosis never be in the same room together and when outdoors, they should remain 6 feet apart at all times. This means that Toe rarely gets to meet or spend time with other CF patients. Great Strides is one of the only times per year that people with cystic fibrosis congregate. It is a chance for Toe to see that he is not alone in this struggle. There is also a slim possibility that he could contract some new bad bacteria from the walk. Walkers with CF are given special colored shirts to wear that say "I am a fighter" on the back. We spend much of our time steering Toe clear of other CF patients, especially adults (who often culture worse/more dangerous bacteria). There are many protocols in place, but there are also things we have to let slide - knowing that others with CF will be using the public restrooms, likely hugging the mascots our son wants to hug, etc. We are torn between having Toe participate in a group event that is so important to him and keeping him safe.
The thing that makes it worth it every year is the support from our friends. Each of our seven years, we have had great friends come to walk with us and entertain Toe (and help provide a physical barrier when necessary).
Some highlights from the walk:
Brian and Leslie went all out with new hats this year. I was drooling over Leslie's fascinator - complete with feathers!
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| Best Green Team Hats |
Toe was joined by two friends this year. The one on the left is his best friend from school who rode up with us for the day. The one on the right is the son of one of our friends from high school. In a strange act of synchronicity, D was born the day before Toe. I remember J coming home that night ten years ago saying, "Sweetheart, Paul and Liz just had their baby," and my reply, "Um... we're having ours right now! (six weeks early)" D and Toe have known each other forever and this is D's second year walking with us (along with his mom - thanks Liz!).
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| Seriously Awesome! |
On the walk, we strategically straggle - so that we are near fewer people with CF and not being passed all of the time. Our group is notoriously slow. This year, walking conversation focused on bad jokes and D&D.
As this was the 30th Anniversary of Great Strides, this year, they had signs with historic milestones posted along the route. This one was particularly special to Toe.
We are an easily distracted group, so there is usually a stop at the park along the route - to play frisbee, to rest... this year we found teeter-totters.
After a bathroom break and Icees we all decided to go out to pizza..
And after pizza, some of us made it to Free Comic Book Day. J continued the afternoon with friends in Portland and I drove the two coastal boys back home. I was surprised how much more energy Toe had at the end of the walk this year. It was a long day, but another great Great Strides experience!
