Thursday, April 23, 2015

Tobii

For the past year and half, the thing Tony relied on the most was his Tobii. If he was awake, it was parked in front of him, and it became literally the only thing he could do for himself.

In case you don't know, his Tobii is a fancy tablet computer that he controlled with his eyes. He could browse the internet, send texts, watch movies on it, anything anyone else could do on a regular computer. He typed his blog posts on it... sometimes spending days writing the longer posts. It was his connection to the world, his only independence.

Tobii also has software that allows for text-to-speech, meaning Tony could type in words that the computer would then speak. He didn't use this much, because he didn't like the computer voice. But as talking became more difficult, and I had a harder time understanding him, he would sometimes type and just let me read it.

His Tobii was like a part of him. We had to send it off for repairs in late December, and the few weeks he spent without it were a glimpse of how completely ALS had changed his life. All he could do was sit in his chair and watch whatever dumb stuff was on TV, and even then he was dependent on me to change the channel. Maybe sitting in front of the Tobii wasn't really that different, but at least he could control what was happening on that screen.

So, today, I got the Tobii out of the closet and cleaned it up to give to another ALS patient in the community. We have befriended her and her husband, and they are both lovely. She was diagnosed before Tony, but seems to have a slower progression. I am so happy to give Tobii to her, and I know that Tony would be too. But for some reason... giving away this sterile, black, piece of technology is ripping my guts out.

They don't seem anywhere near a cure for ALS, so if you are interested in making a real difference for ALS patients right now, please look into the work that Steve Gleason and his foundation are doing. The Gleason Initiative Foundation supplies ALS patients with technology like the Tobii. These devices cost $18,000 and up, and I can't tell you how life changing it can be. Yesterday, the U.S. Senate unanimously passed the Steve Gleason Act, which would eliminate some of the many hurdles that stand between patients and these devices. Most patients can't pay for them outright, and Medicare has strict limits on what it will cover. So please contact your Congressional representative and urge them to pass H.R. 628.

So, goodbye Tobii... it literally feels like I am losing a member of the family... but thank you for all you did for Tony.

Monday, April 20, 2015

Two months

Good night for today.

You've been gone two months today. Some days the clouds are heavy and bear me down. Some days the sun shines through. Every day is hard without your smile, without your presence, without your support.

I'll always have your love though. Good night, babe.

Tuesday, April 14, 2015

Conway Cup 2.0

We couldn't have held the Conway Cup on its original date... for several reasons besides the foot of snow that fell that day. So, we tried again and happily hosted 14 teams at Wilson Field this past Saturday.

I was a bit of a wreck leading up to the day. You have always told me what to do... and I was feeling a bit lost. I was thankful for the smaller Cup... easier to solve problems with 14 teams instead of 51. I think I managed it okay in the end.

Because we had some extra time, we started the day with Cora's soccer group, the Rockbridge United Owls, in their very own mini tournament. Cora played in green (natch), with two of her best buddies. She was all over that ball, and made some great tackles! I tried to channel you as I yelled from the side line, and she had quite a big cheering section! Her team led in points at the end of round robin play, so they were up against the pink team in the final game. They played to the end of regulation (6 minutes) and were tied... overtime passed... so they went to golden goal. It ended up being an epic match of at least 20 minutes, with pink scoring the final goal.




Louise dragging Dan around
Who is happier?

Our little Dream Team

I gave all the girls Conway Cup champions coins, and was so happy they found a home. They all seemed pleased too. Cora did so well, and between the short crying fits, was a stellar player. She did not like to lose! I know you are even more proud of her than I am.

Potter and Dylan on babysitting duties
Once the big kids started playing, we settled into the well worn routine... cadets cracking jokes on the walkie-talkies (my handle was "strawberry daiquiri"),  Richie barking semi-intelligible English, the girls running around like crazy, and some great soccer being played. The soccer boys ran the show, as always, and even took over babysitting and Jake-sitting for me.

Before too long, we discovered a problem we had never had in the previous three tournaments... sunburn! It seems that April has much better weather than February... who knew?

We finished up around 6:30, and I couldn't have been prouder to hand the Adult Open cup to the Dream Team. Several of the guys you used to play with, plus a few who you had coached. I hope they know how happy that would make you! It was the perfect ending to a great day.
Grown-up (slightly) Dream Team
I obviously thought of you a lot that day, and especially about how much you loved the day of the Cup. What a big smile you always wore, and how much you loved the games being played. Your handle probably would have been "Boone's Farm," Cora would have run to you after she played and jumped right on you, and everyone would have been happy to see you. I couldn't think of a better way to honor you!

Wednesday, April 8, 2015

Truth

This was my truth today...


I love you, babe. 

New TV

I've finally started a new (non-trashy) TV show, my first without you here. I don't know why I waited so long... perhaps it's because I can't discuss it with you... can't ask for your opinion. Of course, it's historical and British. I'd be asking you a lot of questions about British history... which you wouldn't be able to answer. I guess history wasn't your favorite subject growing up... just lucky you married a history teacher, then!

Well, anyway... I'll see how it is. There's always the Kardashians!

Haha... the eye roll you would be giving me is burned into my memory!