Pay It Forward

On Tuesday, Tony and I went to Johns Hopkins for his ALS clinic. When we get off the elevators on the 5th floor, we walk right past the children's waiting area for the Neurology and Orthopedic areas. We admittedly have a lot going on, and life is not so easy... but walking by those children and their families almost always makes me cry. We have a lot going on, but it seems nothing in comparison to what they are dealing with. We are so lucky to have two wonderful daughters who are so healthy. I try never to forget that.

So Tony has started a new habit... whenever we go to Hopkins, we put a dontshrink.com wristband and $50 in a thank you card, and write a little note in it. Then he gives it to one of those families in the children's waiting area.

This Tuesday was the second time he did it, and the first time I did it. As we were waiting to be called back, I saw a father pushing a little girl who had casts on both legs and seemed to have a cognitive disability. I nudged Tony, and he suggested I give them the envelope. I couldn't do it though. Just seeing them is hard enough for me... I couldn't bring myself to hand over that envelope without becoming a blubbering mess.

When we had finished with Tony's appointments, I got the envelope out and gave it to Jake in preparation for handing it over to someone. Then the same family walked out of a door in front of us. Tony called out to them, and sent Jake to deliver the envelope. They accepted it without opening it and continued on. I was at the back with my head down avoiding the whole thing.

A few minutes later, the family chased us down to thank us. I could still barely speak to them without being overcome with emotion.

What we did wasn't that much... but I truly hope it helps them a little. We have been so fortunate in the support we have received in so many ways... I am so happy to  pass a little along. And I consider us incredibly lucky, even with ALS.

Six months on...

The past few months have been a whirlwind... we have been going going going. We have had a long list of incredible experiences, and checked quite a few things off of Tony's bucket list.

• In February, we loaded and fired the cannon in an MIA2 tank in Fort Benning, GA.
• We went skydiving. 
• We drove a Bugatti Veyron, the fastest road car in the world. 
• We spent spring break in N. Myrtle Beach, SC with the girls.
• We spent our 10 year anniversary in Aruba.
• We got a hot tub to help with Tony's muscle cramps.
• We got a service dog to help out Tony.  
• There was a feature on Tony in a Scottish national newspaper. 
• And lots more little adventures with lots of smiles and laughs... 

I have to admit, I feel a little spoiled by all of this. I never imagined in a million years that we would drive a Bugatti, but I seemed to take it in stride. I booked the trip to Aruba on a whim (what is a little credit card debt in the face of a terminal illness?), but when we were there, it felt like the most natural place for us to be. It's almost like I am getting used to a life of luxury trips and once-in-a-lifetime experiences! 

At the same time, we are settling into a different routine at home. I am getting used to doing more around the house, so that Tony can rest more. Louise is getting more independent, which makes it all easier. And we hired a cleaning lady. I feel guilty about spending the money, but it is so nice not to have to do as much on the weekends! Summer is just a few days away, and I am looking forward to having more time to tackle a few projects at home, spend time with the girls and rest a bit.

It's been a little more than 6 months since Tony's diagnosis, and I feel everyone in the family has come to terms with it a little more. I know that I am not as likely to spontaneously burst into tears (it still happens, just not as often) and our families also seem to be doing better. I think a little of the initial shock has worn off, and it really helps that Tony stays so positive. We have noticed a progression/decline, but so far it is fairly manageable. Tony says that he has ALS, but ALS is not his life. I have heard that from several other ALS patients we follow, and the positive mental attitude seems to makes a huge difference. We also have another saying... "fuck ALS." I absolutely refuse to plan for a future without him... I am too stubborn. I will fight as long and as hard as I need to!

I guess what all this boils down to, is that I feel extremely lucky. We have had some amazing experiences that we never would have had without Tony's diagnosis. I have loved being by his side for all of them. Without his diagnosis, we might have never gone anywhere for our anniversary, and I am so glad we did! All this makes us take a little more notice of the special moments, and try to make as many memories as possible. Our time together might be cut short, but we can now make the most of it before that happens. I feel very lucky to have the love of that man for the last 10 years... and I can't wait for the next 10!

A rough week...

This has been a rough week. I think it has been a lot of little things that have added up to make me feel totally exhausted and worn out by Friday morning.

• It's the week before prom, so the kids are a little worked up
• Louise got properly sick for the first time... a double ear infection, which meant I needed to leave school early on Wednesday and get her to the doctor. It's always harder to not be at school than to be here and leaving in the middle of the day is stressful. It had to be done, and I don't want to sound like I regret it, but it was hard. 
• Louise managed to get me sick, and today I feel and sound like a croaking turtle (I assume). 
• We have had a bit of an emotional rollercoaster this week. That's always hard
• I dropped my phone yesterday and it stopped working. The stupid phone company has been less than helpful about a reasonable replacement for it. 
• there's probably something else... I just can't remember. 

However, Tony totally made my month. After receiving a message from an ALS patient who has lived 20 years with the disease, Tony said "fuck ALS." It's not the first time he has said something like that, but it was exactly what I needed to hear. I am so proud of him, and I can't wait to continue to make many plans for the future and concoct weird things to feed him in order to do that. I absolutely refuse to assume the worst...

"If you fixate on the worst case scenario and it actually happens, you've lived it twice." - Michael J Fox

Myrtle Beach here we come!

We are 18 hours away from the Conway family's departure for our spring break trip. It will be Louise's first trip to the beach and the first time Cora has been since she was one! We are very excited... now we just have to survive the packing!

A new addition

I got a call from Tony today saying that he was approved to receive a service dog from St Francis Service Dogs. He was really excited, and I am too. I couldn't help but break into tears when he called. But by the time I made it back to my classroom, I was in tears for a different reason. This is a big reality check.

I obviously know my husband has ALS, and it is really never out of my mind, but it is still very abstract. This is one of those things that puts in right in front of my face again.

I realize that I already wrote a post like this... but I guess that just shows this pattern in my life!

Skydiving

It was totally amazing! We had a really great experience at the Virginia Skydiving Center, and met some really great people. We also had a great group of friends with us... my sister came (but didn't jump), her boyfriend Aaron, one of Tony's brother rats Melissa, and one of the strength training coaches from VMI, Coach Jim Whitten... Aaron and Jim were definitely the most scared! See photo evidence below...

We had a great lesson before from Melissa's friend John, the we headed to the plane...

During the ride up, I just kept trying to relax and enjoy it. I was wearing an altimeter, so I could check our altitude as we steadily climbed to 13,000 ft. When the door opened, we scooted towards it and I had the very unusual experience of hanging my legs out of a plane! Freefall was a little intense... kind of like feeling like your face was getting ripped off... but at 120 mph, that is no surprise! I think it was a bit overstimulating for me... maybe on the 2nd or 3rd jump I could appreciate it a little more!
After the parachute deployed we had a lovely float down to earth. The day was absolutely beautiful. I got to steer the parachute a bit and we did a few spins.
The whole thing was great! I am so glad we did it...

When we will go back?

A big jump

We have been on a bit of a roller coaster it seems. With our situation, we are bound to have low moments, and I know we both have our share. But we also have some great moments, and the last two weeks seem full of both of those. The good moments are easier to talk about... we have started making podcasts of discussions we have about various things, primarily for our girls; we had a really positive visit from the director of the St. Francis Service Dogs; we got to spend some time with Tony's brother, Martin; plus there are always great moments in our time together as a family.

The low moments are... having a contractor in to estimate for making the house wheelchair accessible; having the service dog lady in goes both ways; having those great moments as family and realizing they won't last forever; breaking into tears talking about our first date and thinking about how much we love each other in our first podcast... sometimes things are good and bad all at the same time.

These things are normal, and I guess we just need to accept them and move on. We are definitely going to have low moments, we just can't let them take over... we just have to enjoy the great moments that much more!

This weekend should be a really great moment. We are heading to Orange, Virginia for a parachute jump. It is one of the things on Tony's list... so we are going. I try not to think about us being irresponsible by both jumping at the same time when we have small children! I think it will be lots of fun and I am glad we have some friends and family coming with us.

Am I a little scared? Actually, not really.... that might change on Saturday though! Wish me luck!