They say you can’t choose your family…I beg to differ.
For those who don’t regularly follow either Jess or me on the blogosphere or elsewhere, it’s been a tough few weeks – we found out that Brooke has been suffering from brain seizure activity and that the seizures may be causing some language loss for our baby. Although we have seen quite a bit of horizontal growth in her language over the last year, her vertical development has essentially stagnated, if not taken a step backward. We are in the middle of the process of trying to figure out what is going on. An MRI performed last week showed no abnormalities in her brain structure. We are still waiting to hear what her 24-hour EEG revealed.
It’s been difficult and I wrote last week how many of YOU have been our Sunlight during this confusing time. Part of my personal therapy has been to run – this streak could not have come at a better time for me; some runs have been full of deep thought, others have been an opportunity to simply shut out the outside world and go. As you may know, I have run every run running the Charity Miles App. Using the GPS in your smartphone, it tracks your run (or bike ride or walk) and makes a small donation for every mile that you cover. I’ve written more about the app and Charity Miles —>Here<—.
I always thought that Gene (the founder) was a pretty good guy. I liked his story and I liked what he was doing. What I didn’t truly realize was that this guy is paying attention and he truly cares. When Jess and I first found out about Brooke’s brain seizure activity, we were devastated and that devastation was reflected in my posts – Gene tracked my phone number down through a mutual friend and called me to make sure I was okay. This isn’t a guy I know. We have never met, but he cares about his Charity Miles team. I was floored.
But it didn’t stop there.
A few days later, after finishing up a run, I went through my routine of logging my miles, first through the Charity Miles App. The way it works is that after your run, in order to have the donations sent to your charity of choice, you must post that you ran using the app on Facebook and Twitter. Charity Miles always has a few hashtags thrown in, I assume to draw attention to groups they are working with. I always add the #AutismStreaks hashtag and the day before hitting send. On that particular day, I was surprised to see another one: #TeamLuau
I blinked. I didn’t think I had added that. No, I’m sure I didn’t do that. Then I wasn’t so sure – sometimes I do these things on auto-pilot. I did a twitter search of the #TeamLuau hashtag – and there it was, on every Charity Miles run done for Autism Speaks.
I was speechless. I tweeted Charity Miles that I was speechless, honored, thankful.
Their response?
Simply put?
We’re family.
How absolutely wonderful to read this this morning. Many of us have been #TeamLuau for a long long time, and now you have proof!!
Like! Like! Really, really like!!!
Thanks for sharing your journey – you inspire not only with your running but as caregiver to a little guy on the spectrum, I’m always looking for folks who are further along the journey than we are, and also trying to look out for the folks who are just starting too. I’ve read a few folks who are trying to figure out what sorts of seizures are impacting their kids (Squidalicious as one other blogging parent dealing with the issue) and a friend back home too – this scares me. Keep sharing what you learn. You’re cutting trail – as hard as that may be – for those who will follow you.
Knowledge is a social construct. You’re facilitating that with this blog. Keeping your family in my thoughts and prayers –
THis made me smile.
Love.
Indeed, we are.