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!

A moment of pure bliss

This morning was cold and rainy. It is never easy to get out of the house with two little ones, but mornings like this seem even harder. We managed to do it though and headed into town to the day care drop-off. A few minutes before we arrived, I looked in the rear view mirror to check on the girls. What I witnessed was just about the most fulfilling moment of motherhood I could ever imagine! Cora was leaning over smiling at Louise and tickling her. Louise was smiling up at Cora and trying to pull her coat, or hair, or whatever she could get her hands on. It was so wonderful because they were truly enjoying each other and demonstrating how much they already love each other. It was so nice!

I know there will be many mornings ahead when they aren't speaking to each other or are fighting over some minutia of life... but I'll always have this morning's moment to remember. I'm a lucky mommy!

Therapy?

Not for the first time in my life, I am wondering if I should start seeing a therapist. I (logically) know that I can't control everything, but it is harder to put that into practice. And especially now, I find so many things weighing on me that I sometimes feel unable to cope. There is (of course) Tony's diagnosis and the ways that is changing our lives... I really try not to think about what the future will bring, mainly because I don't want to dwell on it. However, I still have my moments!

But, there are so many other aspects to our busy lives as well. Taking care of two small kids, a job that is very demanding and negotiating everything else as well... how much longer will Tony work, when can we go to have a little time away, how can we include our families as much as possible while still having time for just the four of us, when will I go grocery shopping, blah blah blah... it never ends! I know I am certainly not alone in this feeling of being overwhelmed. It is something that nearly all adults go through, probably especially mommies.

So I went down to talk to the guidance counselor that I work with. And he was a huge help! He actually didn't recommend therapy, just a bitch session with my friends. I think he is right, but I admit that I don't want to have a massive breakdown with my friends. However, I think that makes me a crazy person... we have had so many people offer to help and so many people specifically tell me that they are happy to listen anytime. I have been urging Tony to make some changes in his life in order to accommodate the changes in his body. I guess I just need to listen to my own advice! I can't control everything and I can't do this alone... so WATCH OUT FRIENDS... meltdown Amanda might be visiting you soon! ;)

The Conway Cup

This past weekend saw the inaugural playing of the Conway Cup. It was an amazing success! I cannot say thank you enough to all the people who help organized it, showed up to help on the day, played, bought food and tshirts, sent positive thoughts our way...

There were definitely several times on Saturday that I stopped and thought, "we did this." And even more special is that it was done for us. There were people who came from all over, even as far as Hawaii. Tony had an absolutely wonderful day, and that made me happier than I can say. I only wish I could have been with him more throughout the day to meet and greet all his visitors!

Thanks again to everyone. You are all in our hearts.

We made the paper!

Apparently my husband is "popular".... that's hardly news to me, but I could have thought of lots of great adjectives for him!

http://www.thenews-gazette.com/full.php?sid=24091

10 years ago...

Ten years ago today, Valentine's Day, my boyfriend took me to my favorite restaurant to eat. He spent most of the evening not talking to me and looking distracted. I was convinced he was going to break up with me, so I figured I might as well get as much as I could out of the meal! However, when we got home, he got down on two knees and offered me the ring from a bubble gum machine. We had already discussed getting engaged, and I told him I didn't care what kind of ring I got. He then pulled out a beautiful gold celtic knot ring and asked me to marry him. I did said "yes," but then promptly called him "a f**ker" because I had been convinced he was going to dump me...

I think I am unbelievably unlucky that this man chose me. We have had 10 great years... and I can't wait to go home and see him tonight!

New Diet

This week, we started a new diet. It is basically an anti-inflammation diet. There is not a lot of research to support this with ALS, but it is worth a shot. We are going to try it for a few months and if he doesn't notice any difference, then try something else.  Tony said Day 1 went well and the veggie curry we had last night was super yummy. When I told him we would eat a lot of Indian food since the diet includes lots of garlic, ginger and turmeric, Tony was easily convinced!

I will freely admit that I hope that this helps to slow down things, but I know it will not be a magic cure. However, it does feel great to be able to do something... part of my frustration with this is that there is nothing we can do... just watch it get worse. And that sucks (not really an appropriate word) more than I can say!

So here's hoping the Indian food works!

7th period

I was just whining about my 7th period the other day. They are a challenging group of students, but they are good kids too. Today, 4 students from my 7th period and 1 from my 1st showed up with 3 loads of wood for us.

I don't really even know what to say! I guess it just reaffirms my thought that while my job can be really hard, I love it. I get to meet an amazing bunch of people every year! A huge thank you to Hunter Higgins, Kyle Manspile, Andrew Vest, Payden Goodbar and Tori Nuckols. You guys are awesome and I am so proud to be your teacher!

Another day

I just finished my 7th period class. I have never had a more challenging group of students. None of them are bad kids, but only a handful are interested in learning US History the last period of the day. They are chatty and sociable and way more interested in things with wheels than dead people and things that happened 100 years ago. On a day like today, I feel like I have been literally wrestling the information into their brains. Tired!

Overwhelming...

At the (nearly) end of the week, I find myself thinking about all that has happened in the last few days. We had an amazing trip to Georgia, my cute husband (with cameo by me) made the local news, and we were approached with another fundraising opportunity for our family. If you do not already know, I am a teacher at Rockbridge County High School. Yesterday, one of Mrs Sherman's leadership classes approached me about making our family the beneficiary of their yearly fund raiser. They sell lunches at school, and are hoping to expand to W&L this year as well. They were full of ideas about decorations, messages about ALS and other ways to raise funds. It was so amazing to see these students work so selflessly, and even more amazing because they are doing it for my family. Tony has said this before, but we have been so overwhelmed by the things people have done for us. I feel so lucky to have such wonderful support.

But that of course brings me back to the reason behind all this. My husband is an amazing guy and he deserves the opportunity to do amazing things. We once watched a video made by Scottish comedian Billy Connolly where he traveled around New Zealand doing comedy shows and showcasing the sites and scenes of the country. At the time, I remember thinking that my biggest wish for Tony is that he could have a job like that someday. That he would be able to travel around doing something he really loves and be able to make a living at the same time. And I realize that that has almost come true. He is getting to do amazing things, and he is getting a lot of attention while doing it. I only wish it was just because he is an awesome guy... not because he has ALS. Either way, I am so glad he is getting to do these things... and so glad that I get to go along for some of them!

Ft Benning

We had the most amazing experience at Ft Benning. I will leave the telling of the details to Tony, but I have never had such an amazing trip! We really were treated like VIPs from start to finish and every single person we met was incredible. The whole time I was thinking… “do they not know that I am a nobody? I definitely don’t deserve all this!” I never voiced that though… it would have been like pinching myself in a dream! We could never say thank you enough- from Ben Freakley who got it started, to his father, General Freakley, to Colonel Dougherty, to Sergeant Major Mitchell, to Theresa Oliver in Protocol, down to the private who read the certificates we were given. It was all completely overwhelming. Thank you so much.
At the end of the night Thursday, I thanked Tony for bringing me with him. It was a great trip. But I also told him I would happily give it all back for just a lifetime of nights on the couch and no ALS.

Try try again...

I tried this once before and gave up. I didn’t feel like I had anything interesting to say… I am still not sure that I do, but part of Tony’s goal is to share his experiences. I am lucky enough to be part of those experiences, so I am going to try again…