My first Harvard football game.... well, a lot of firsts

A few months back when I was put in contact with Bob from the Harvard Varsity Club he said "hey, if you ever want to go to a Harvard game let me know".  I wanted to go to the Harvard vs Yale game since that is the game I heard about from Mike's friends on how Mike sacked the quarterback for the win back in .... probably 1990.  I almost picked a different game to go to since I was afraid of traveling with the possibility of snow but a friend, Bill, called me a chicken, so I booked my flight.  I was able to get the nursing all arranged and my flight and hotel booked and luckily there wasn't any snow anywhere!
My girls were healthy but in true Taylor fashion she was close to having a seizure the day before I was to leave.  Fortunately, she didn't have one and I was able to get a little bit of sleep.
I had a friend available to drop me off at the airport.  Even though I don't travel by plane often, I am somewhat familiar with what is now called the John Glenn airport here in Columbus, Ohio.
On the first flight over to Boston I was sitting next to a young man who was probably in high school, we exchanged greetings and he pointed to his mother across the isle.  I offered to switch seats but she didn't take me up on that (maybe she didn't like the aisle).  Once we were up in the air, I was all settled to read my kindle when I looked over at him retrieving his paperback book from his pack.  I smiled at seeing someone his age with an actual book.  I smiled even bigger when I saw what book he was reading..... you might remember me mentioning this book before..... he was reading one of Mike's favorite books!  The same book he bought for me for my birthday, the same book that he told me was on a short list for books he has read multiple times, the same book I was reading to him the last week before he died (I was trying to keep something familiar around him since I figured there was significant brain damage having been 30 minutes without much oxygen)... the book was Watership Down.  I told the kid that that book was my boyfriends favorite book and that I had just read it myself about a year ago.  He smiled broadly and said that his dad gave it to him to read.  He then told me where he was in the book and what his favorite part so far was...... he gave this all voluntarily, I hadn't asked him.  It was a lovely way to start my adventure.
Once at the hotel in Boston I foolishly ignored the advice of the information desk and decided to walk to the Hilton.  It was foolish because it was about 1.5 miles in a very confusing trek through multiple terminals.  I was confused and hungry and in need of a restroom by the time I finally made it to the hotel.  Luckily I had checked in through the app and had the digital key all ready to go.
I wasn't there long before I needed to find my way to the Harvard campus and try to meet up with Bob or at least the will call before the hockey game started.  The valet at the hotel recommended the subway (which they call the "T"), he circled the stops that I would need to make it to Harvard Square.  The hotel shuttled me over to where I would pick up the subway and from there I just started reading signs.  I had NEVER taken a subway or bus anywhere since middle school school bus.  I bought my Charlie Card, I found the first train.... I found the second train.... I found the third train (on my second try) (I didn't know that you needed to know the final destination of that train in order to get on the right one).  I got off the last train at the Harvard stop and looked around for an exit.  I found it by just walking forward.... nothing more than luck.  Now I'm standing in Harvard Square but I still don't know where the hockey stadium was.  Google maps didn't help.... it kept saying "head east towards JFK street".... which was not at all helpful since it was dark so I didn't know east from west and I didn't know where JFK was.  I found someone willing to help me even though they didn't know either.  They at least knew that the athletic complex was "over the river" so they walked with me to the bridge.  Ok..... now I'm closer.  I see an archway that says Gate 1 and figured I'd start there.  There really isn't too many people around so finding someone to ask wasn't going to work so I just kept walking since I couldn't think of a better idea.  Remember it gets dark early so I am walking in a parking lot towards building with no lights and no people.  I found a building that said Dillon Field House and that sounded familiar so I went up the steps and there...... there was Bob.  I pulled up his facebook page to make sure it looked enough like him to approach with a "Bob?".  What are my chances of finding the one man that I needed to find without any address, any communication, any directions and having traveled a good distance.  Crazy.
He had my tickets to the hockey game and to the football game for me at will call so I walked that direction.  I was about an hour early for the hockey game and that area for some reason just sucked the life out of my phone battery.  If I lost my phone, I lost everything.  I found an outlet next to the door to the ladies restroom.  I spent the next hour tethered to the wall outlet and opening the bathroom door to ladies.
The hockey game was a good game.  The pace of the college level game was easier for me than the pro teams, that was helpful.  So now comes the challenge of getting back to the hotel. I asked the people working there how to get an uber and they didn't know.  I asked a security guard how to get an uber and he didn't know.  I am losing battery on my phone now and I've wandered around for about an hour in the dark, cold, hungry, low battery, clueless.... having talked to the uber driver only to have him cancel my ride because he said he couldn't get to the hockey stadium... and I was telling him that I couldn't find a road and that I didn't know where I was.  I was running out of options.  I called a friend to hear a familiar voice because the isolation was kicking in.  He cares, so his end of the conversation were all solution statements, all of which I had already tried, so I just hung up because I was just getting more frustrated.  Finally I found a young guy and asked "hey, where do you pick up an uber?".... and as simple as can be he says "up here, it's where I'm going".  Ahhhhhhh.... finally I had a little help.  When I got to where he was continuing and I was staying he said that it should only take them about 15 minutes and that he could stay with me if I wanted.  I thanked him for his help, sent him on his way and waited on the uber.
This was my first time using the uber app and even thought I managed the app and the request, there was still the issue of recognizing the car..... I only really know car, van, truck... and then colors.  LOL  They gave the plate number but they don't know what you look like so it isn't like they pull right up to you close enough to read the plate number so reading the plates in the dark and drizzling rain was a challenge.
On to the next day... the day of the tailgating and the game, I took an uber to the game but there was so much traffic that the uber driver suggested I go ahead and get out so I'm not paying to sit in traffic (that was kind of him).  I am now walking the same path I did the night before but this time during the day and I was part of a hourd of people going the same place.  I found the tailgating but there were probably 6 different sections and multiple tents in each one and even though I knew of 2 people who were going to be there, I didn't know where "there" was.  I figured the older the alumni, the closer to the stadium, so I started walking toward the stadium.  And just guess who I saw right away.... Bob... the guy that I needed to see the night before.  He offered to take me around and introduce me to people but being in his position he was easily distracted and had wandered off without me.  It was then when I saw another familiar face, Bill, with his kids.  I walked with them for awhile and found the 90s tent.  I stayed there and just wandered around with a jack and coke while he and his family went exploring.  It wasn't too much longer when another familiar face showed up, John, with his family.  I followed them into the stadium so I would have a better idea of where my seat was.


This is where I might be sound like I am stepping on some toes here and I don't mean to be, but again, this is my blog where I can write what I experience through my eyes.

Before going on this trip I had a few people lined up to go with me or meet me there and I had people available to join me for dinner or drinks here and there and for whatever reasons.... none of that happened.  I am used to being alone and I usually prefer being alone, but this time..... this time it left me feeling very vulnerable and in a heightened state of confusion the entire time.

Bob had told me the day before the game that they were surprising someone with another grant from Mike's Fund and they would let them know the next day (being game day).  I had wanted to meet the family in person after having exchanged emails with the wife of the recipient but it never happened.
The first time I saw them was when they were taken out to the field by Bob and a camera to be awarded the grant.
Try to put yourself in my mind for just a second, after all.... you've made it this far...... I am sitting in the stands of where I would have been to watch the love of my life play football during his healthy days and without any warning I look up and see on the big board his name.

I see the family going out to the field, I hear a voice talking about my Mike..... the man I loved and cared for for over 4 years without much help at all..... his name was right there and another man with the same diagnosis was on the field (with his wife and children) receiving money raised and awarded with Mike's name as the Fund.  I felt instantly like I did when I read on Facebook of when Mike's funeral was to be held.  I felt stripped of any association to the man I loved and cared for when no one else would.  I dedicated my life to caring for him along with my kids because of the love that I had for him and the life that he deserved wasn't the one he was forced to live.
Can any of you imagine what that feels like?  Your wife, husband.... whatever.... and you are in the stands caught unaware.....
Not only had I spent the last couple of days alone and lonely and lost.... it now culminated to sitting in the stands as a bystander to the memory of Mike's life.  And ended with me taking the subway back to the hotel in tears with all kinds of emotions racing through my head.  It's a wonder I made it back.
I know none of this changes who I know I was to Mike and who he was to me, but it felt very disrespectful.  Would it have been different if we had been married.... probably?  Can anyone marry someone when they need services from the State.... not easily... you are no longer eligible for the services you need.  Would Mike's mother have been treated that way if she were still alive... nope.

I was so glad to be home.  So grateful for my friend to not just pick me up at the airport but come in to the terminal and greet me with a hug, and get my bags for me, and open my door for me, and get me coffee, and carry my stuff back into the house.... I was just sooooooo grateful for not having to think anymore.  Not having to be alone even for just a short ride home.  And to find my girls healthy and happy and with huge smiles on their faces to greet me. 

October 7 .... move in day

After waiting an entire year (or maybe more) from the time we applied for home services to the day he moved in...... the day was October 7th.  I remember when the case worker came in to the nursing home and said that everything was in place and all we had to do was pick a day.  We didn't answer her right away because we both knew that being anxious to have him move in and the reality of getting all the vendors in place, were things to consider.  I had already been in contact with the vendors that I use for my girls so that the nursing home just needed to order the supplies (they require physician orders initially).  The only thing we were really working on was the ventilator itself.  The company I use for Taylor wasn't accepting new patients for ventilators so we needed to find a different one.  The social worker at the nursing home had a contact and I let her get it all set up.  Just .... maybe 2 days.... before he was to move in I asked for the respiratory therapist to come in and go over the transition.  Because the State was paying Mike's medical expenses they weren't too keen on paying for 2 ventilators but he couldn't go home with the one from the nursing home and he also couldn't go home without one.  It's still rare enough for people to be living in the home setting with a ventilator that the State regulations haven't caught up with changing their rules to allow for things like this.  The vendor came in and when I asked what ventilator he had available he gave me the make and model of a ventilator that I didn't recognize.  I pulled it up on my phone and when I saw what he planned on giving him I knew that they were just pulling out an archaic model from the back of storage to make the most money.  I refused the ventilator even at the risk of delaying his move in day.  These things are important.  Part of what I wanted to accomplish was to get the same make and model that I was already familiar with, being Taylor's ventilator.  With all the stress of transitioning his care over to entirely me, I didn't want to relearn another vent.  And I didn't feel comfortable using the company that the nursing home found because of what they offered and also their answers to other crucial questions like response time to troubleshoot events.  I called around and found a company that was able to meet all our needs and had one in stock (another problem commonly found).  This new company was great, the respiratory therapist was someone who really cared about Mike's needs and respected my comfort level with the vent I knew the best. 
We didn't lose any days with changing this all around, thank goodness, it was just a little added stress.  Move in day was such a whirlwind.  Mike was so over the moon happy, as was I, and it all happened without a hitch.  I had already packed up all his belongings (my brother helped me with that) and painted his room to the new colors he chose, and set up all the supplies we would need immediately so all that was left was Mike.  Mike had already gone over with me what his needs were likely to be while being placed on the gurney and while traveling since he wouldn't have a way to communicate besides me reading his lips.  Not just the anxiety that he had with being moved around like that but also the pain.  Mike was a big guy and didn't always fit on the length of a gurney.  Because most paralyzed people are without feeling, most medical support people are not mindful of not hurting him.  I had to be diligent about where his arm, hands, legs, feet and head were at all times and to sometimes interrupt what was going on to fix what I knew would hurt him.  Every bump they hit, every corner they turned required a quick visual assessment and adjustment.  Also, his butt was not in good shape.  What I mean is the skin was not intact due to the care given to him at the nursing home.  He had 2 pressure sores when he came home and some other volatile areas that needed tended to for healing.  Having the broken skin on his butt made the transportation events even more painful.  We had already talked to the nursing home physician about loading him up with as much anxiety and pain meds that he could safely have (that amount is higher with the risk of respiratory suppression not being an issue with the ventilator) but it meant that I would need to be more aware of him since he wouldn't be as aware of himself. 
As soon as we got him moved over into his new bed in our house, I took a picture of him.  I wanted to capture that moment.  I am so glad that I did even though he didn't like pictures of himself (at first).  I don't need the pictures to bring up his face yet, but one day I might.  He was so excited he couldn't sleep.  Even with all those drugs in his system he was so alert and so happy.  I brought the girls into his room to see him.  They had already met when I brought the girls to the nursing home to visit with him.  We all hung out together in his room while I made last minute adjustments to rearranging supplies and to meeting his needs. 
We had a nurse scheduled for later that day so there wasn't much rest for me anytime soon.  There was so much more than just medical needs with Mike that my input was required a lot of the time.  So even with a nurse, I was never really off duty.  The nurses I have for my girls have been with us for 8-14 years, I'm still on call but rarely needed when they are scheduled.  That wasn't the case with Mike.  If I was in the house I could hear everything in his room.  I tried to keep my distance with new nurses for just a bit so that they could develop a relationship of communication and trust, but inevitably I would hear Mike's computer saying "get Ann".  That was 24/7.  It was hard to not lose my patience with the nurses, as Mike already had before telling them to get me.  I walked in on the most ridiculous of situations.  Knowing him as well as I did, he rarely had to tell me what was going on, I could assess it quickly.  Most of the time I did what was needed to be done and spoke to the nurse as I was doing it so that they could learn a new skill.  It wasn't received that way.  They usually just sat back down and got back on their phone while I tended to his needs. 
But watching his face while he was sleeping and seeing the difference in him from how I knew him in the nursing home made it all worth it.  He knew he was finally safe and loved and cared for.  I knew that he was finally able to live without fear.  ALS is a bitch, living in a constant state of fear due to your environment makes it a thousand times harder...... that was all gone. 
So this month is another memory for me to experience without him.  But just like moving in with me was a step up for him in care, I try to think of him in death as an improvement from the pain he was in while here.  That helps.

Lessons still creep in

When caring for Mike became my sole responsibility there was a lot to learn still.  We had spent over 2 years together while he still lived in the nursing home where he received care from them with their protocols.  Once he lived here we were able to establish new protocols that were specific to his care.  Turns out, some of those things specific to him are now helping me with Taylor.
I have an intuitive nature that helped me figure out how to help him in emergencies that we both were always grateful for.  He could always tell what was going on with his body, which is unlike most paralyzed people due to ALS unique nature of letting you know exactly the hell you are now living in.  Mike was such a huge supporter for me but more so when he moved in with me.  As one family unit, he wanted to contribute to not just me, but my girls.  When I would tell him what was worrying me about them (mostly Taylor) he would first and foremost ask if I had time to pray with him, if not, he did it without me.  He would message me when he was done.  My prayers were always quick little thoughts both good and bad and would be throughout the day.  Mike's prayers were these long meditative sessions.  I often didn't have time to pray with him but sometimes I would say... yes, but I'll need to duck out of this if I can tell I'm needed.  He would message me when he was done and I would pop in and say "Amen".... he would enjoy that ending.... me too.
Some of the things that I started doing with him to help keep his airway clear worked great, some not so great.  I could usually tell on my own what the outcome was, whether it had the desired outcome.  But Mike could tell me how it FELT.  That was a huge help for me when caring for Taylor.  When Mike realized how much his input could help me help Taylor he started thinking more about what things could be similar between the two of them and how maybe he could help be a voice for her. 
Both of my girls have been sick this month.  Not quite hospital sick, but that is a small difference sometimes.  One night I had been working with Taylor for about 3 hours (2am to 5am) trying to keep her airway clear and oxygen levels in the 90s.  At 5am when I took a step back and tried to get myself out of reaction mode and into thinking mode, one word popped into my head....... cuff.  I often get these little one word insights at just the right moment, so often that I no longer question them, I just do them.  I knew what was now needed, I deflated her cuff and the change in pressure made her cough really big.  Once she made her secretions mobile, I could get a LOT more out of her.  Her oxygen numbers popped up to 98%!! That was a huge relief and a huge difference. 
Once I sat down and started thinking about the past 3 hours it dawned on me why "cuff" came in my head.  That was a trick Mike and I came up with together.  When we used that method in a hospital setting, I would often get myself yelled at, but it worked.  Mike knew that when we decided to do those things the consequences initially were on me but if we didn't say our sorries and show remorse, things got worse.  That is always an issue with patients with chronic conditions.  Mike knew what he needed but they would never do it, they wouldn't even put air in his cuff when you could hear it leaking...... crazy rules sometimes take away from actual patient care.
Once I knew that my intervention was actually Mike's intervention for her, I could breath better.  He's still helping me.
Remember the songs that will randomly play that I associate with Mike...... well sitting in Chipotle the next day one of those songs played.  Picture it..... Chipotle.... what kind of music do you hear while sitting in a Chipotle.... now imagine this song coming on...... Dance Me to the End of Love......
Such a good feeling.

One Year

Well here it is, one year.  He was pronounced dead by the physician on the 29th which is today, but it was on a Sunday, like yesterday.  So all day Sunday I kept remembering things like deciding to go home to be with my girls for awhile.  Like seeing Father Dean's number show up on my phone.  He had never called me before.  I was afraid he was calling to tell me that Mike had passed away, but he was calling to tell me I still had a chance to keep my promise to Mike but it would need to be soon. I remember waiting for a nurse to come to the house so I can leave.  Trying to make it up to the hospital before he died. Walking in to his hospital room where I had spent the past week watching his body just slowly decay only to find him under a warming blanket and looking almost normal (the had the blanket covering him except his face).  But also seeing who all was in the room.  There was Barb, of course, having been named as family representative.  There was Steve and his girlfriend, I was so angry with Steve for not having called me himself.  And then the woman and her child who I had never laid eyes on before in 5 years.  I still don't know who she is.
I went straight up to his bed and moved the blanket aside and put my gloved hand under his.  He loved holding my hand that way.  He said people were always touching him but I was the only one to put my hand under his so he could touch me.  I could hear them all talking in the room... the nervous laughter.... the "this is how Mike would have wanted it"..... bullshit.... it was all bullshit.  I wanted to just throat punch her to restore the quiet.  I knew how much Mike had come to despise her for writing that horrible letter to him telling him he was going to "take the guilt of not having a good relationship with his mother before she died, to his grave".  That was the last straw for Mike.  And you all probably know him, you know.... it takes a lot for him to write people off.... he wrote her off.  And here she is.  Steve walked to the other side of Mike's bed looking at me after most everyone had went outside to smoke.  I pleaded with him with my eyes more than words, asking him to take her out of the room.  I had tears streaking my face looking at him just saying "please" and he only said that he couldn't.  So I blocked them all out.  I blocked out everything except Mike.  I could tell by the monitor that his heart was almost done.  I heard the nurse ask the respiratory therapist about shutting down his ventilator.  I heard the respiratory therapist say that she can't until the physician pronounces him dead.  I heard the nurse then tell the rest of them that the doctor would be in to talk to them soon.  Barb, in her perpetual state of cluelessness took it upon herself to repeat what the nurse had said to them, to me.  Again... the urge to throat punch was almost too much to ignore.  But I refocused myself on Mike. 
I know I wrote this somewhere but I don't know if it was in these blogs.  Mike's fear of dying alone was a big one with living in the nursing home.  We had a morbid sense of humor about things sometimes.  I told him that I promise I will hold your hand until your last breathe.  He grinned and said "you missed that one".  We laughed and I tried again "I will hold your hand until your heart no longer beats".  So standing there for the hour blocking them out and replaying that promise in my mind..... I laughed.  How inappropriate is that?? It was just so absurd.... the circumstances surrounding him as I kept my promise...... I know he was already gone long before his heart stopped so I was picturing him having a bird's eye view on the whole scene.  He would have laughed with me. 
Mary "little old lady Mary" had called and asked if I would take her to the cemetery for his one year death anniversary.  Of course, I am glad to be spending time with her and remembering Mike together this way.  But I am becoming more and more certain that he really is around me all the time.  Part of me wanted to think that way because there is a huge amount of comfort in that thought.  The logic side of me says of course you want to think that way... there is a huge amount of comfort in your theory.  I've finally managed to silence the "logic" side of me.  He is still with me.  He will always be with me.  Going to the cemetery just isn't what I need to do anymore, but I'll be there with Mary in about 9 hours.

Mike's 30th reunion from Newark Catholic

I had the pleasure of meeting more of Mike's friends this weekend.  Mike had a friend from his Newark days who has been very kind to me even when Mike was still alive.  Funny story.... I had posted (begged) on Facebook for anyone to come help me with Mike, nothing too difficult just holding him while he was on his side so that I could safely change his bed linens and give him a bath. I had added that if they didn't want to see him naked, then they probably wouldn't want to volunteer.  Mike's friend sends me this message saying "there was a time when I would have LOVED to see Mike naked"..... she made me laugh.  I walked into Mike's room and read it to him and he just did his normal innocent grin.
Back to present time.... this friend of his saw the pictures I had posted on Facebook from my trip to The Hill School to Mike's 30th reunion and mentioned that I should come to his 30th from Newark Catholic too, so I asked the guy putting it together and he kindly added me at no charge.
When I arrived, I kind of just stood outside the building for a good long time... I wasn't going to know anyone there.  No one.  I'm not shy and I do go most places alone, but this was different.  I was walking into a room of people who knew my Mike from when he was young.  I figured that they probably knew his family well, maybe even still kept in contact with them, and knowing that his family didn't like me I was apprehensive about meeting any bad feelings towards me.  Luckily, that wasn't the case.  They may have had a notion of not liking me but they didn't act that way towards me.
I stood off to the side by myself for awhile just watching people.  They had set up a table and had some pictures of Mike and a lit candle.  The flood of emotion that hit me for Mike's reunion at Hill wasn't present this time.   I smiled when I saw the display, but I didn't feel the need to cry.  The first person to talk to me was this friendly woman who was there as a spouse.  I didn't quite know how to introduce myself.... I'm with Mike Vollmer... but he died.  I'm Ann Francis, Mike Vollmer's girlfriend.....  I'm a spouse too... kind of....
I don't even remember what I came up with.  When she knew my connection to the event she excitedly told her husband.  Thank goodness I had someone who knew I was coming and had a story to tell me right away about how he knew Mike.  It was an athletic one... of course.  LOL  Soon I had a lot of people coming up to me saying "Hi Ann, I'm  ________".  Since I am used to being by myself it was weird for people I haven't met before to know my name.  I think I may have even said a couple times "how do you know who I am?".
The friend who had mentioned the reunion to me showed up a little later and she greeted me with the most wonderful hug.  Even though I didn't know her either..... I kind of had some connection.
I had to limit the alcohol since I would be driving another hour back home that night, but everyone else kept drinking which made the evening even more interesting.  LOL
I heard of some of the things that happened at their house in Newark.... the mustang, the bronco, the parties, the pool, the senior party, the barn..... and the gerbil..... The gerbil... that had to be the funniest story I ever heard of Mike.  I may not remember it correctly but it was something like this........   Mike was always a messy big guy who always had a shirt half tucked in, ink stains on the pocket... that kind of thing.  The desks they used were the kind with the stool connected to a table that lifted to store your books.  His friend said she saw the desk always moving around and the lid to the desk always kind of jumping.  She figured that this was Mike's doing because he was such a big guy he didn't fit too comfortably in this arrangement.  He was getting in trouble for chewing pens and pencils... I guess he never seemed to have a functioning writing utensil.  One of the teachers was reprimanding him for chewing on a pen and that's when it was discovered that Mike had been keeping a GERBIL in his desk.....a GERBIL..... wth??  I about choked on my beer when she told me this story.  And I could picture it.  The look that he gave me all the time when he didn't feel the need to explain himself further was the same one I pictured him giving this teacher.
It was really nice hearing stories about his home life and how many people have such wonderful memories with his whole family.
In a way I feel sometimes like I'm still in a relationship with Mike, but I'm living it backwards now.  Today I have cried some just thinking about how I wish I would have been able to experience all these positive interaction WITH him.  Today more than most, I want more.   More time with him.  I want a do-over so I could add what I know of him now to how I loved him.

More about Ender

I mentioned before how Ender became a part of our family, I thought I would talk more about that experience.  He was an interesting addition.  I remember saying that I didn't know anything about raising a puppy and that Mike had bought me books and videos to help me with training him.  Mike had told me he loved feeling his cat, Liberty, curling up to sleep between his knees and he took a lot of comfort from this cat once he couldn't move his legs as much anymore.  So Ender's breed is known to be a lap dog.  What we didn't take into consideration is how needy he is.  LOL  This dog would manipulate whoever he could to make sure that he was the center of attention at all times.  Mike and I would laugh a lot at his efforts.  I started calling the dog Sneaky Pete.  We almost renamed him.  Mike would send me messages saying Sneaky Pete kept the nurse busy today.  :) 
We would keep him up on Mike's bed with him as much as we could.  It was so much fun watching him figuring Mike out.  Ender would try to get Mike to pet him... of course not knowing that he couldn't move.... and would start nibbling on his hand.  He never broke the skin, but Mike would sometimes look at me and mouth "ow".
Mike started ordering him toys and treats from Amazon.  We would get a package every other day.  Funny story...... when we kept getting delivery after delivery for Ender..... I would tease Mike that he now has proven that he knows how to buy for others.  He responded by buying me a new leash..... in pink.....  He cracked me up.
We trained Ender to get up on Mike's bed on his own but he never quite got the hang of getting down.  The hardwood floors and his furry paws made for an awkward landing.  We put a chair beside Mike's bed and I would sit there reading.  Ender would want to get up on my lap while sitting there and I would put him up on Mike's bed.  He would crawl around under his computer screen and hide there if he didn't want to get out of the bed.   I would train Ender to sit and wait on me to call for him while we were back in Mike's room.  It was hard for Mike to see him on floor level so I would do these things a little farther from him so he could see Ender and Ender's reactions to having to wait to being called.  Mike was impressed.... I think by me as much as Ender.  lol
With keeping the chair by Mike's bed Ender could eventually jump up on the chair and then up onto Mike's bed.  I was in his room hanging his tube feeding when Ender figured this out for the first time.  Mike's face was hilarious.  He laughed so hard.  Ender's new freedom in accessing Mike became just a little too much for Mike sometimes, so we moved the chair. 
We decided that I would start taking Ender to puppy training classes.... once a week.  I would video as much of the class as I could so that Mike could see how he did with other dogs.  He was a complete mouthy chickenshit.  Pretty much what we thought.  Ender graduated and we were going to stop there with the classes but then we got a letter from the agency saying that they received complaints from the nurses that they don't feel taking care of Ender was part of their job.  All the nurses knew of Ender being Mike's dog prior to being hired and they were all dog owners themselves.  We never did figure out who made a complaint but Mike wrote a letter to the agency.  It needed to be Mike writing the letter and not me because he was so much better at communicating and resolving issues than I was.  We kept Ender in the classes so that he could be trained as a therapy dog.  Mike's thought was that with Ender listed on his Plan of Care as a Certified Therapy Dog, the agency would have to care for the animal as well as Mike.  It didn't work out that way...... agencies just have way too much power.  We kept the same agency but Mike figured out who would have complained and we just phased out that nurse.  Problem solved. 
Mike loved that Ender was so good with the twins too.  He took pride in his dog and he loved his dog.  I feel bad now for the times when Mike saw me lose my temper with the dog, but I can't change that now.  I posted so many.... so, so many.... videos and pictures of Ender on Facebook.  I did it because it was the easiest way for Mike to see how and what his dog was doing.  Along the way.... a lot of dog lovers became quite the fan of Ender.  He was a very photogenic dog afterall. 
Mike and I hit a really rough patch in our relationship.  There are a lot of reasons and issues surrounding it that I just don't want to talk about.  But giving Ender up to someone was discussed.  He wanted Ender to go to his friend Paul.  Paul and his family had been to the house multiple times and the kids loved playing with Ender.  When Mike and I, thankfully, resolved our issues, Ender stayed with us. 
After Mike died, I tried keeping Ender with me and my girls.  I tried, but I just didn't have anything left to give to anyone... not even a pet.  I know a lot of people take comfort in having their pets around them when they are sad, I'm not one of them. 
I talked with Adam and he wanted Ender.  Ender loved Adam and Adam loved Ender.... it was the perfect solution.  I don't miss having Ender to take care of, but I do miss him.  My mother was in town this past week.  Mom is just one of those women who clean constantly... even if it isn't their own house.  So with Mom here, the couch was moved away from the wall and there was a gazillion balls and toys under there.... don't judge, I don't move the couch much apparently.  I wasn't home when she did this, but the nurse at the house sent me a picture.  My very first thought was to send the picture to Mike expecting him to say something about how Ender must have known and that's why he kept digging at the couch.... something I complained about... a lot.
I love that Ender brought Mike so much joy and I love that my son now has him to love on too.

Almost a year and CPR renewal

I am always very aware that August is coming soon.  August is the month he died.  I think I will be better once that One Year mark comes and goes.  I am doing pretty good now though.  The nightmares have stopped.  I have started dating some.  I haven't felt any guilt driven need to go to the cemetery.  I am maintaining healthy relationships with people who loved him too. 

I still can't stand the thought of changing my relationship status on facebook.... silly.... I know.

I was reminded this weekend that my CPR was soon to expire.  I need this to be a nurse.  Luckily there are online classes that I can take and just print out my proof.  One of the nurses for my girls went on vacation last week so I've been covering the hours.  I love being able to spend all this one on one time with them.  But, being home to care for them meant that I needed to get this course taken online and quickly.  I sat down with my computer where they could see me and put a video in for them to watch and got started.  It was a 5 hours course.  After about 1/3 the way into the videos, I noticed that my mouth was really dry and that I had this all too familiar anxious feeling.  I couldn't really spend any time figuring out what was causing this because I really needed to focus on the course.  I figured that maybe having a deadline was making me anxious.
Then I came to the section on Agonal Breathing..... agonal breathing.... the ineffective breathing that looks like a mouth gulping.  Mike would do that every time he was getting septic.  He wouldn't know he was doing it until I put a mirror in front of him.  He closed his eyes and agreed to go to the hospital.  I was always surprised that even with being diagnosed respiratory failure that this neurological response still happened.  I let my mind wander a bit to seeing him doing the agonal breathing.  My panic got worse.  Then I came to the section where the cardiac part of CPR was being explained and it hit me hard...... I started reliving all of it.... everything that was said and done and how he looked and even the clock on the wall in the room.  All of it. 
My tears made it difficult to continue.  I stepped away for a minute.  I stood in the kitchen and tried to just think my way out of my emotional state.  That usually works for me.  I realized that this reaction wasn't sadness..... it wasn't premeditated.  I didn't think.... I have to do this and I know it's going to be hard to not think of Mike.  It hit me totally out of the blue.  I kind of think that that is a good thing.
I finished the course.  I even passed.  In a really weird way, it kind of felt good to know that his death still has a hold on me.  Even typing that I know it isn't exactly healthy.... but it's the truth.  But at the same time it kind of felt good that the sadness was no longer anticipated, it was a surprise.   I think that's a good thing.

Youtube videos

When Mike first moved in we had a pretty good agency here to care for him.  But here is the thing with agencies.... they do what we call a bait and switch or maybe even a false leader marketing strategy.  What that meant for us was... the pull their best nurses from other cases to open Mike up as a new case.  After Mike and I train these nurses to his particular needs, they take those same nurses off his service plan and start sending different nurses..... crappier nurses.... nurses who don't even bring anything with them but their lunches.  We interviewed literally hundreds of nurses and agencies over the two year period here at the house.  They would fall asleep, they would lie about medications, they would give improper care, they would lie to their supervisors anytime Mike complained about his care.  Mike would expect me to stay for their entire working shift and train them.  Which meant that even when he had a nurse, I couldn't ever be off duty.  We had cameras put up after they started lying to agencies claiming that they didn't want to come back because we were verbally abusive.  We had more than one nurse just leave him here in the middle of their shift.  It's technically called patient abandonment if no one accepts assignment for his care, which I told them I would not do until the end of their shift and they would leave anyway.  Their supervisors would tell them to.  That would mean we would have to find yet another agency to provide care and in the meantime I was left alone to do all of it.  So even though the State of Ohio awarded him 20 hours a day of skilled nursing care.... we couldn't find anyone to staff.  Eventually Mike just started letting anyone willing to be here stay here.  This always angered me.  He thought he was doing it for me and I didn't want him doing it for me because HE deserved better.  I filed complaints against these nurses and agencies and case workers.  It resulted in a case worker getting fired.  We also received letters notifying us that our claims had been found to be substantiated and due process way being done.  That sounds great doesn't it?  It usually only meant that they had to write a letter of restitution... not much more than that.  And filing all this stuff in addition to his daily care was exhausting.  I stopped filing.  We were trying to do right by other patients who needed services by complaining against the nurses who put his life at risk.  Eventually we just kept them out of our house. 
When an agency is hired, they send a nurse out to the house to do an assessment on the patient and write up a care plan that will be signed by the physician and that care plan is now the orders for the care that the nurses are required to perform.  If.... and this is a big if..... they wrote the care plan correctly, the nurses coming to the house didn't even look at it.  We insisted that we see the finalized care plan before the physician signed the document to make sure that it was correct.  For all the good it did, since the nurses either didn't show up or showed up and didn't know anything more than his name.  Theses nurses truly lacked very basic skills...... everything from toileting to sterile technique used for suctioning his airway. 
Mike and I decided to start making Youtube videos demonstrating his care.  Whoever was available in the house would hold my phone and record me performing and explaining tasks and skills.  We then would give the link to the agency and ask them to have the nurses assigned to his care watch the videos prior to their first shift in the hopes of me having to spend less time training them one on one.  They didn't watch them. 
Even thought he intended purpose was not fulfilled, there seems to now be another purpose becoming known. 
People have made comments on the videos complaining about what they think are errors in his care.  Most of them are rude.  A lot of them are by students who think they know something.  I've responded to all of them with an answer to fill in the gaps of their understanding.  Through these videos, a man had contacted me asking if he could speak with Mike.  I gave Mike his information, but Mike was too weak to do much typing so I continued our dialog.  This man was an attorney living in another State and his wife had been recently diagnosed.  We stayed in contact up until Mike died. 
And then this week, I get an email from a man who runs a program for emergency response personnel in Canada asking for my permission to use the videos as a case study and to provide him with some background information on Mike so that his life will seem more real to those reading and watching the videos.  I wrote him back with some caveats to the use of the videos.... first off to emphasize that they are not intended as medical advice, only as demonstrations of care provided as instructed by the patient being videotaped. 
His request got me thinking some though..... this whole time I think of Mike's life and influence on people and what he has meant to others with his classroom dedication at the Hill School and the Harvard Trust, but maybe I can be more proactive in continuing his fight for qualified care.  When Mike died, I hated hearing the words ALS.  I swore to myself that I will not do any fund raisers or walks or stay active in any support groups.  I wanted nothing more to do with this horrible blasted disease.  And now.... now I see that I do have something to contribute.  Not so much as a nurse, although I feel I am a damn good one.  But as someone who navigated a flawed system, who knew how to keep Mike calm in medical traumas, who stood my ground in advocating his care at every turn.  The video showing me suctioning his airway has been viewed over 24k times.  If I had ever thought that that many people would be seeing us, I would have put something on besides a housecoat and no makeup.  But that is what our life looked like.  Those videos are who we were.  If you watch the videos you will even see me mess up and claim it and keep going.  I don't want to be a teacher in a class setting, but maybe I can be a life coach for those who don't get much practical advice from case workers and direct care providers.  I finally have reached a point where I am not angry when I hear or see the words ALS but I have not reached the point where I don't shed a tear when Mike's name is added to that disease.  But maybe I don't have to be so strong to do good.    I think Mike would want these videos used to help others.  I am grateful that someone wants to learn more about caring for those with ALS. 

His poem, the precious words that I hold in my heart

My birthday was June 30th, last Thursday.  It was really strange to not have his love..... his smile..... his words.  I'm 48 years old, there is no good reason for me to miss him more on my birthday than any other day really.  But I did.  I was sad for myself for what I lost.  I lost my best friend.  My greatest love.  I just wanted him.  On the plus side, my girls are still doing great .... healthy and happy.  And Adam... he is loved and happy and healthy.  I gave myself that one day of feeling sorry for myself, that was my gift to myself I guess.
With being integrated more into his life before me, after his death, I am seeing him differently now.  It's a strange feeling really.  With ALS being a big part of our relationship, it was hard for both of us to think of anything but the future.  I think he liked it better that I only knew him with his diagnosis.  Afterall, the last "love of his life" couldn't hang with the diagnosis.  And him with his diagnosis was all I knew and I loved him.  I think it helped him trust my feelings more. 
I plan on going to a Harvard football game this season.  I still have his 91 Harvard jacket.... 91 was his number.  I mention that because when I was first made aware of the Trust set up through Harvard was the Michael Vollmer '90 Fund, I was confusing it with his football jersey number 91.  The " ' " should have been a clue for me.  :)
One thing I did for myself on my birthday was that I wrote on my bedroom walls.  I bought washable markers and I just started writing all these things that reminded me of him.  I wanted to be surrounded by his words and words that made me think of him. The last compliment he gave me is written so that it is the first thing I see when I wake up.  The poem that he wrote for me is written where I can see it from anywhere in the room.  The poem is so beautiful.  When he wrote it I was just sitting beside his bed studying.  He had been asleep and woke up to see me sitting beside him.  He had been asleep when I arrived and I didn't wake him.  I saw from the corner of my eye that he was moving his head around typing something.  I expected it to be instructions for what he needed.  He stopped and looked over at me.  When I met his eyes he mouthed the words.... read outloud.  This is what I read....

I wake from what seems a dream
Look toward you and see you beam
With no question in my mind
I love you so desperately
The way it will always be
This is how we'll spend our time
Quiet, reflective moments
Now it all makes perfect sense
As I take your hand in mine

I never asked him if he memorized it or wrote it for me.  I didn't ask because the only thing that mattered to me was that he wanted me to know that these words were how he felt about me.  "Now it all makes perfect sense"...... knowing more fully now what his life was like before he met me...... "now it all makes perfect sense".... I was and am still honored to be loved by him.

Birthdays and books

My birthday is coming up.  I'll be 48 years old.  I'm not secretive about my age.  It still sounds so weird to say out loud though.  I've been saying I am 48 for most of this year just so that I get used to it.  For the past few years, Adam has been taking me out to lunch on my birthday.  Except last year when he moved to South Carolina, darn him.  (I kid)  Mike and I didn't do much for each other for birthdays except to make sure that we only say nice things to one another for the entire day.  :)
Last year Mike was a little more attentive and mushy because he knew that I missed Adam a bunch.  So now this year will be my first year in 5 years without Mike sending me messages.  Actually, it was last year for my birthday when he sent me one of his favorite books, Watership Down.  When I opened the email from him when I woke up and saw that he had sent me a book I went in and gave him a kiss in his sleep.  Then I read the synopsis of the book and found out that it was about rabbits.... as told by rabbits.  The next time I saw him awake I think he had an idea what my reaction was going to be because he was smiling before I even said anything.  He typed out for me that it was one of the few books in his life that he had read over and over.  I was already reading a couple of books so I didn't start it right away.  One of the books I was reading was Game of Thrones per Mike's suggestion.  One of the things we enjoyed doing together was talking about books.  Typing was getting harder for him so for me to tell him what I read the day before and what I thought might be happening next was easy for him to enjoy.  I could ask him yes or no questions about the book he recommended and it kept us connected with something fun. When he was in the hospital, I would often read books out loud to him.  We both liked it.  At home he usually had audiobooks.com to make the books come a little more alive than my voice.  :)  Especially with GOTh, he had to explain to me something about the first book when I kept confusing the characters.  And when I kept asking how to pronounce words.  I hadn't been watching the TV series so I didn't have any idea how to say most of the names.... except ones like Jon Snow.... those were easy.  I was reading Watership Down when he went into the hospital that last time.  After his cardiac arrest, it was a book that I read out loud to him hoping that he could understand something.  I was still trying to come to terms with him being gone mentally and reading the book out loud was a good activity for my mind so I didn't have a mental breakdown.  I was glad that I knew what the book meant to him before he died, but I also wish I would have finished it with him.  I was conflicted after he died regarding that book.  Part of me felt that as soon as I finished the book that part of us would be over, so I didn't want to finish.
So this year will be without Adam (South Carolina) and without Mike.  My poor girls will be stuck with me smothering them with kisses all day. :)  I have plans to take myself to dinner.  I'm going to the Refectory for their Jazz Dinner evening.  It's something I go to about once a month.  I'm sure I'll probably go to the cemetery too.  I find that I leave there feeling better than when I arrive.  I need to start bringing a blanket or something, those bugs start freaking me out while sitting on the grass.
I'm very grateful that I am still alive and healthy and able bodied so that I can enjoy another birthday with people I love. 

Ender and his reason for joining our family

One of the worst hospitalizations Mike and I experienced was at Riverside.  That hospitalization was the first time Mike had experienced an attending physician wanting him to die.  That is a true statement, she put a lot of effort into fighting us for treatment.  She even lied to me about his lab results during her consultation where she told me that I needed to just let him go, that there was nothing further they could do.  What she didn't know was that I had drawn blood cultures and other diagnostic labs the day he ended up being admitted.  I knew the results independent of that hospital.  She didn't know they had ever been drawn and she certainly didn't know that I memorized what they were. The director of the hospital and the attending physician who was also the director of the ICU not only refused him antibiotics but when I argued his case for treatment to the ethics board, they kicked me out.  It is the first time that I had ever seen Mike lose his cool and composure to medical staff in front of me.  The director was accusing me of video and photographing things, which I was.  But it was with Mike's permission.  I offered her my cell phone to let them see what I had captured so they could see for themselves that it was only things regarding Mike.  As a side note, we did that often.  Especially when Mike was so sick that he was unaware of things, I would capture his vitals and color of urine and IV lines by picture and email them to him so that he could always know what was going on.  The director claimed that it was illegal.... it isn't.  Mike argued with her as he usually does, with great diplomacy and tact, for as long as he could.  But their attacks against me became more personal talking about my tone and demeanor....  I still remember Mike's face as he typed out... You are mistaken, she has not said or done anything in response to your personal attacks against her during this entire encounter. (which is true, btw.... she stood nose to nose with me insulting me and I didn't say one freakin word) He NEVER speaks out like that in defense of me.  The only time I spoke was when she told him .... Mr. Vollmer, it is easy to see that you used to be a very effective lawyer and that you at one time were a very smart man..... I spoke up, I had to.... I said, No need to speak of him in past tense, you haven't killed him yet and he is still a hell of a lot smarter than you've realized. After Mike realized that they were not reasonable he typed just one more word.... BULLSHIT.  He had that computer say that one word in response to anything else they said to us.  I've never seen him do that. Mike's adrenaline is what was keeping him alive.  They took him off his pain pills unless he asked for them but then he had no way to ask for them.  They took him off all antibiotics claiming that it was a wasted effort.  His vital signs were showing a worsening of his condition.  I met with the ethics board representative and effectively argued for his right to treatment.  The attending spent the rest of his entire hospital stay discontinuing his medication every morning at rounds.  I spent the rest of his entire hospital stay contacting the attending for the Infectious Disease doctors to get them added back on. 
The kicked me out for just the one day.  Mike wrote them a letter.....  basically telling them that he is entitled to his advocate and medical poa and that if they did not let me resume my visits then he would seek counsel. 
Mike fought hard to get better and come home.  We couldn't transfer to another hospital because medicaid law wouldn't cover the visit.  Something about they only transfer if the current hospital is unable to provided the needed care... not if they are withholding.  We couldn't just go home, that would have been AMA (against medical advice) and the entire stay wouldn't be paid for..... that and he would have probably died before we could get him admitted anywhere else.  We were stuck there and he knew it.  Once he had me back by his side he asked me to not say another word to anyone and he promised to get better.  It was a deal I almost kept.  They had transferred him out of ICU but the discharge planner had been trying to get in touch with me to send him home.... I also knew that his lab work showed that he needed a blood transfusion and I was working on getting that done (that was thanks to a very nice nurse calling me).  I told Mike that I needed him to let me out of our agreement or he would die.  He agreed. 
Once we were home Mike was more depressed than I had ever seen him. The day he didn't have me by his side was torture for him.  He had no access to a call light, no access to communication of any kind.  He was totally at the mercy of people who had shown him that they didn't value his life. 

So I bought a puppy.

Adam and I researched different breeds of dogs and settled on a Cavalier King Charles Spaniel.  Mike approved of the breed.  Adam found a home not 10 miles from us who had a litter for sale.  Adam drove over and picked out the dog and I met him there with the cash.  We didn't have a crate or food or anything. But we had a dog.  One of the things Mike and I enjoyed together was books.  Early on we had discovered that we both liked Orson Scott Card as an author so Mike messaged me a suggestion for a name..... Ender.  Based on the main character in the Ender's Game.  Of course, no one understood his name when I would say it.... my brother thought we had said Bender. lol
I had never had a puppy before.  Mike was so excited.... he knew I was clueless so he set about educating me (that's his way of showing love).  I would get emails for links to books he had bought for me to read.  We watched training videos together.  I have to say, I didn't do too bad.  Ender did exactly what I needed him to.... he loved Mike and Mike loved him.  Mike's profile picture on Facebook had never been changed to one of Mike and I, but it was quickly changed to him and Ender.  LOL
I'll talk more about Ender another time, but this is the backstory to how Mike ended up with who he called..... My Canine Companion.

Me before You.... the movie

Have you seen the movie Me Before You?  I did a couple of weeks ago.  I haven't read the book but I hear it's pretty close.  I went to see this movie because I really like going to the movies alone and also because a lot of people have been asking me if I've seen it yet.
I had seen the previews and knew that it would probably be a bit of a reminder of Mike for the obvious reasons, but as it turned out..... it wasn't much of one.  Not any more than other movies, really.
What it did make me think of is what the people asking me if I had seen it were thinking?  Do people really think that this is similar to me and Mike?  It really isn't.  I didn't meet him as an employee.  Mike's disease was not an injury and even though the lack of voluntary movement was the same, the character in the movie couldn't feel anything... Mike could feel everything.  Mike NEVER contemplated suicide.  We didn't even like the idea of hospice.  The female character wasn't really in love with this guy.... she was drawn to him more for her own reasons.  That scene on the beach when she realized that everything she did to manipulate (yes, manipulate) him wasn't working and she threw a fit... that wasn't us.  The guy wanted to improve her life for real reasons, she was trying to improve his for her own satisfaction... imo. 
I applaud the movie for showing that everyone deserves the right to die with dignity or at the very least make their own medical decisions.  Even though his injury wasn't degenerative, the laws in the US are changing to allow death with dignity for only terminal diagnosis, it is still a topic worthy of art for the sake of discussion.  I hope that people who are wheelchair confined don't watch this and feel hopeless.  I hope that people who aren't in a wheelchair think that feeling sorry for people who are wheelchair bound is warranted. 
I cried during the scene when she was shaving his face though.... that scene reminded me of us.  The very first time I shaved his face we were both laughing a lot.  It went like this..... so what are the odds of me killing you if I mess up?  .... his answer.... less than permanent disfigurement.  I didn't even nic him.  And I talked with a Master Shaver and he tutored me on how to give an awesome shave.  He even offered to let me go to his shop and I could do a return demonstration (my most effective learning tool).  We never ventured into the straight blade world, but the Master Shaver guy said that those were overrated anyway.
I like that the girl finally showed some maturity and decided to support him and be with him and his decision. 
If you haven't seen the movie yet, go see it and let me know what you thought.

Triggered by a shirt

Since coming home from this past weekend where Mike was constantly in my thoughts, I have had random thoughts of our time together creep in my head.
Tonight I am in bed trying to get to sleep and I remember when he first came home to live.  I remember his face..... his glowing face.  I wanted to have a fresh start.  As soon as I had all his immediate medical needs addressed, I set about cleaning him. Getting bed baths in a nursing home just can't seem to get you clean enough.  Here at the house I could turn on the space heater so he wouldn't get chilled, I could cover him with soft blankets, I could use soft wash clothes and scented soaps with a lot of lather.  If you've never bathed someone you love, I highly recommend it.  I was always the one giving the bath of course, but there really isn't anything more intimate.  You might think sex is, but when you lovingly wash and take care of someone's body with love it surpasses everything else.  I trimmed his nails, I soaked them and filed them.  I changed his gastronomy tube.  I changed his trach ties.  I cut his hair.  I shaved his face.  I kept him naked.  To tell the truth we were both naked a lot.  Not vavavoom naked, more like nudist colony naked.  Spending all our time together ONLY in a nursing home room...... it was cramped and smelly and people coming in and out at random times.  That first day especially was just about freedom.
Mike couldn't raise his arms above nipple line and he couldn't put his palms up without pain.  This made putting a shirt on painful.  So I did for him what I did for my daughter.  I cut the back of the shirt straight up the middle. I bought packs of the softest white t-shirts I could find and I cut the backs out.  Since he couldn't move but he could still feel, soft was always my goal.  Oddly, he would ask for rough wash clothes every now and then.... must be a guy thing.  All his clothes from before living in the nursing home were in storage.  His friend brought them over and I went about washing them and cutting the backs.  There was one shirt that when it came time to cut, I just didn't. At the time I couldn't tell you why, I just hung it back up as a whole shirt and he never wore it.  I know why now.  At the reunion I met this beautiful, sweet woman named Gabrielle.  She had a picture of when Mike was at his last reunion 10 years ago.  Mike knew it would be his last reunion.  This is also when he told the majority of his friends of his diagnosis.  She posted the picture on Facebook and tagged Mike so that I would find it. (remember I had been drinking so this was the easiest way)  I later looked at the picture and saw what he was wearing.  The shirt that I couldn't cut, that I hung back up in the closet that he never wore, the shirt that I kept after he died when I got rid of all the others.... that shirt is the one he is wearing in that picture.  How strange is that?  The shirt has been hanging in my closet since he died.  I plan on keeping it there but I moved it to be mixed in with my own clothes.  Weird reason.... but I kind of feel like I want it touching my clothes that I'll be wearing.

Mike's 30th reunion and classroom dedication

I have just returned home from my visit to Pottstown, PA where I was invited to attend Mike's 30th reunion from the Hill School as well as attend the ceremony dedicating a classroom to Mike on behalf of his class of '86.  It was a long beautiful drive from Columbus, Ohio.  The weather was fantastic and with the Waze app, I had no trouble finding the school.  Once I registered and found my dorm room, I had no trouble at all locating one of Mike's good friends, Aleco (Aleco is hard to miss, in a good way).  Aleco immediately set about introducing me to everyone standing near him.  This is a kind gesture he did the entire weekend. 
I was excited, honored and nervous to be going.  It turned out to be so much more than I could have hoped for.  Mike's friends treated me like one of the gang the whole time.  But yet, they treated me special..... getting me drinks, carrying things for me, introducing me to people, watching out for me, making sure I felt included, danced with me, drank with me, shared memories with me.   I was also finally, not treated with pity.  There was no mention about feeling sorry for me at all, that was such a relief.
Everyone I met had a kind word to say about Mike.  Everywhere I looked I could imagine Mike being there.  Watching his two friends, Aleco and Sam, both who have similar builds and height to Mike, walk around together, I could imagine Mike walking with them. 
For two days, I had the privilege of experiencing a little bit of the school that affected Mike so positively during his young life.  Aleco even showed me some of Mike's "firsts" there at the school. 
For the ceremony on Saturday morning, I went up to the classroom early with Aleco and Sam.  I am glad that I did because seeing the display of the keepsakes Mike had from the Hill School that I brought with me to return to the school made me immediately cry.  I had hoped I could avoid crying but it wasn't that easy.  I know.... it's ok to cry.....  I get it.  But it also makes me look sad and broken ... and I'm not.  It also gives me a headache and makes it hard for me to communicate.  So I prefer to do my crying when I am alone.  I was able to cry mostly unnoticed until I was able to get a better handle on the amount of tears coming down my face. One girl who was with the school noticed my cheeks were wet and very discreetly handed me tissues and lightly caressed my arm.  It was such a kind and gentle gesture that helped focus me back to real time.  This stranger was standing in front of me showing me kindness, this was real.  Remembering Mike and the reason for my tears was our past. The ceremony included his friends sharing stories of Mike, which made me smile.  As a downside, a couple of people who had made a positive contribution to Mike when he needed help the most were also there.  That statement might take a little more explaining..... Mike and I were together for 5 years..... when I first met him this couple would come to the nursing home to visit with Mike once a week.  After he moved in with me they were only here twice in 2 years.  Once for his birthday and once more for a Christmas.  They also wrote a booklet about Mike's life.... their version.  When they had sent me the file with the final writing, I was just sick to my stomach.  I sent out an emailed response telling them how disgusted I was with what they were doing.  I had not heard from them at all until seeing them there that day.  Again, I found myself in the position I was always in with Mike..... keeping my mouth shut.  I stood there and listened to her talk about her book and her "agenda" and her fund raising efforts for her "agenda" during a time when it was supposed to be about Mike.... not her "agenda".  I managed to stay civil and I even managed to say a few words.  I really wanted to represent Mike as best I could.  Afterall, these were people who I barely knew... if at all, and yet they knew me as Mike's girl, and they thought highly of Mike.  It was important to me that I was an extension of him.... does that make sense? 
He has the most remarkable friends.   To honor their classmate this way, was very touching.  I am not at all surprised by how well they treated me while I was there.  Not only was I hoping to represent Mike well, but I was also trying to not get in the way of the fun that these guys should be having with attending their 30th reunion.  I didn't want to seem so shy and backwards that I made them feel awkward and I also didn't want to seem so eager to follow them around like a kid sister.  It turns out that I didn't have to be anything but me and they were so incredibly nice to me.  I just kept thinking that I wanted Mike to know how incredible his friends were to me.... he would have been so happy to know that. He knew how guarded I was all the time with his family and some friends, he would have been so proud of his friends.
The school grounds were beautiful.  The first place I went was to the chapel.  Mike had told me that it was his favorite place to hang out there.  He said he used to just sit in there in the quiet.  So that's what I did.  I sat in there in the quiet.  It was serene. 
There were about a dozen of the guys who were there for the class of  '86, but it wasn't just Mike's classmates that knew him.  Faculty and people from other classes knew him too.  I was privy to overhearing people talk of him when they didn't know who I was and as expected, it was all positive. It was such a wonderful experience for me to be surrounded by his friends in a positive environment.  I had too much to drink.... both nights.... but it was good.  I can never seem to get out of my head enough to relax and have fun without always watching my phone and hoping my girls are alright.  With the amount of alcohol, I let go of that.  It also helped that I had no doubt in my mind at all that Mike's friends would never let anything bad happen if they were around.  I am always alone and for this weekend, I wasn't.  I had people around me who cared about me. I even danced.... freestyle.  Don't laugh, but I've never done that.  I ballroom dance, I don't do anything else... except in my own livingroom.  I even danced a slow dance with his friend Drew and another kind of slow dance with Sam.  Sam had moves.... so it was a little more like that ballroom world I knew.
It was a wonderful mixture of being surrounded and being alone.  I couldn't have asked for a better experience to relive Mike's youth.  I will forever be changed for the better for having been surrounded with that much love for my Mike.  To see the lasting effect that his life has had on people and to know that generations to come will see that plaque and know about Mike.... it has changed me.
I stopped at the cemetery on my way home.  I just needed to end the weekend with him that way.

Mike loved to eat

I mentioned that when we first met I was feeding him Thanksgiving dinner, right? I probably even mentioned that I was really impressed with his being able to still eat given his respiratory failure status.  The chewing I can understand, but to swallow he had to not only manipulate the food to the back of his throat he had to also fight against the air pressure going in to coordinate the swallow.  It is quite remarkable that he continued eating for as long as he did.  He was quite proud of it too.  :)
I have heard that before I had met him and before his diagnosis, that food was a huge pleasure spot for him.  I believe it.  He even signed a waiver with the nursing home to allow himself to still be fed by mouth even though he had a gastronomy tube.  They tried to force him to give it up by making him have a swallow study done by telling him it was to prevent aspiration when it was really to make it more convenient for their staff (maybe a little of both)  Standing there feeding him took a lot of time.  The kinds of food he was able to eat the best isn't probably what you would think.  If the temperature was too extreme he couldn't manipulate the food.  If the bite was too big he couldn't manipulate the food.  If it had a combination of textures.....   you get the idea.  He also hated to be fed with metal, he preferred plastic because it wouldn't hold the temperature and also because the bite sizes were easier to control.  Candy was his favorite but it also meant that someone had to be right there to give him the next piece.  He went through phases with his favorite candies.  When he moved in here he had my cooking some but he had come home from living at the nursing home sick and underweight.  I didn't have time to cook and I really pushed the meal replacement formula for him so that he could get some weight on.  He resisted at first because he felt like eating was one of the last pleasures he had left.  I had to emphasize to all the nurses that he is never to be told no if he wants to eat by mouth.  That made him feel a lot better.  He hated being told he couldn't do something.
The problem came with when he started choking on things he used to be able to eat.  Luckily I was home for all of the incidents except one.  But that one time almost did him in.  The nurse had been feeding him gummy bears (sour, lol) and because the sour ones made him make weird faces, the nurse didn't realize he was seriously in distress.  She eventually figured it out and messaged me (I wasn't home).  I tried telling her what to do over the phone but she was freaking out.  I made it home in under 5 minutes (don't ask) and went straight to getting him "unchoked".  It isn't something that you learn in school and there is part of what you are doing that doesn't exactly make sense, but it works.  I mentioned that his trach tube had a cuff around it to take up the extra space between the outside dimension of the trach tube and the inside dimension of his trachea.... well, if I deflated the cuff while also using suction in his mouth the air that usually goes into his lungs will come out of his mouth (because the pressure in his mouth is less that the pressure in his lungs, it's naturally diverted).  When the ventilator pressure starts pushing air out his mouth it also will dislodge whatever he was trying to swallow (it hadn't gone all the way down either tube) and with the suction I had going in his mouth, I could latch onto the gummy bear and get it out. He also still had a gag reflex that helped. You have to be quick and decisive.  There is no room for screwing up or hesitating.  After he was stable the nurse called the agency and they refused to feed him any longer. Since the agencies were quick to drop him, everytime we hired a new agency, he was able to eat again for awhile. I still did... because I promised him that I will always do what he asked me to.  But when it kept happening more and more, I finally told him that I will continue doing it as long as he wanted me to but that I really didn't want him to die because of a gummy bear.  He stopped.  He would still put them in his mouth and suck on them but he had to be mindful to keep it in the front of his mouth.
Sometimes when I was really afraid of losing him I would forget that he is afraid of losing function.  It would always hit me later that I didn't think of things from his perspective all the time.  I did when I regarded the decision as his but I didn't always when his decisions scared the shit out of me.  At those moments I thought more of myself.  I know that's natural, but now that he isn't here I think about those kind of things a lot.

Not every day was paradise

I have talked about the love Mike and I had for each.  I have talked about the trust and respect that Mike and I had for each other.  I'll mention now the disagreements we had with each other. 
I don't think it is healthy for two people to not have at least one disagreement.  We were so healthy, we had many more than one.  When he lived in the nursing home still, there wasn't much to disagree on.  He loved seeing me walk in and he loved hearing me tell him of my life.  He loved having me there to supplement his care. He loved having someone take his side when he had issues with the care he received.  The only thing we argued over early on was with how I was treated and what I saw as his lack of "sticking up for me".  I've mentioned his mother before and the issues she and I had.  But there were some employees at the nursing home who were not only verbally abusive towards me, but one of them physically assaulted me in a hallway.  Physically assaulted..... it's an accurate term, but just like when I used it when his mother was shoving me, I didn't feel threatened by this employee either.  Mike would ask me to step out and walk down the hallway to the nurses station to tell them of whatever he needed.  He would put his call light on too, but sending me meant he didn't have to wait for the aide to answer first.  Any time I would tell someone of Mike's needs, face to face, they hated it.  They hated it because they couldn't ignore it.  There were some things that Mike would just have me do for him, like let the air out of his stomach.  The vent would push air into his lungs, but depending on what he was doing (eating, usually) sometimes that air would get pushed into his stomach too.  He already had a surgically placed hole in his abdomen that connected his stomach to the front of his abdomen and a conduit was created.  They call it a stoma.  To "burp" him, all you had to do was connect a syringe without the plunger in it to the tube placed in his stomach and leave it open until the trapped gas could get out.  When Mike wanted this done it would sound like this... "please release the trapped gas as it is very painful".  One day I had gone to the nurses station to get a syringe and the nurse behind the desk just went off on me.  It became a huge deal over what care I could provide for him.  Mike was willing to sign whatever they put in front of him to allow the facility to let me do these simple tasks, but they refused.  This nurse felt so incredibly powerful by this decision that she became even more hostile towards me knowing she had the support of the facility.  What created the argument between Mike and I was that even though he could see how she treated me, he wouldn't ask for a different nurse.  I was pissed that I had to sit in his room by his side and watch her come into his room and laugh and carry on with him and watch him do the same with her.  I felt it disrespectful.  I told him that the reason I was being treated poorly was as a direct consequence from doing what he had asked me to do.  She finally crossed a line big enough for Mike to finally speak out.  While walking back to Mike's room, our paths crossed and as she is walking towards me in this very wide hallway, she shoulder checks me!  I am totally serious.  Again, I was so stifled there because of Mike's wishes that I not make things harder for him that I just let her.  By the time I finished my walk to his room I was in a royal fit.  I went off on him telling him that if he had shown solidarity with me earlier, she would have never felt she could get away with that behavior.  I'm not the type to fight another woman in a hallway mind you, but I most definitely would not have just kept silent and kept walking, I did that for Mike.  I was mad enough that I told him that if he was ok with how they were treating me there, then I didn't want to be there.  That was what it took apparently..... he wrote a scathing letter to the director demanding better treatment for me.  There was video evidence of her assault and she was reprimanded.  But she was still assigned to him on occasion.  I filed on my own behalf against her nursing license.  I didn't follow up on any findings.  But seriously, can you even imagine that this kind of thing would happen?  It's crazy.
The other time was when one of his friends showed up to visit him at the nursing home and started hitting on me.  It was all good fun until his hands started getting a little too wild.  I kept looking over at Mike asking him if he was going to say anything and he would just shrug (he could still do that then).  The guy finally crossed a line enough for me that I handled it myself.  After they left I went after Mike with my anger that he didn't stand up for me.  I would have never guessed what his response would be......he said "I kind of liked watching you get angry.  I knew you could handle him yourself".  His reply caught me so off guard that I just had to laugh.
That's kind of how all our arguments ended. 
Once he had been living here awhile and the majority of his care was required of me, we started having arguments just out of frustration.  I told you about some of those.... where we would sit in separate rooms and type out our argument.
Mike and I both had to learn how to let go of things.  When it was my "bad", I would usually just say "want to kiss?" and that was the end of it.  When it was his "bad", he was much more eloquent in his apology.  His sleep schedule was so weird at times that some days I didn't get to sleep at all.  When you aren't sleeping for over 24 hours it becomes real easy to notice some things.  One of those "some things" was how often his communication with me was reduced to just telling me what his immediate needs were.  I get it... I do..... it really sucks to HAVE to ask someone for every little thing you need.  But when you're tired..... it really sucks being asked too.  One day I answered his request by telling him that it had been 3 days since he has said anything to me besides telling me what he needed done.  It took him another 2 days to respond to my "accusation" as he liked to call them.  Here is his response ... not word for word... just jist but I'll put it in quotes anyway..... "At times my sleeping overlaps my awake times and I lose track of the days.  I am very sorry that for 3 days I did not include you.  Please forgive me.  You are always in my thoughts and in my dreams, I guess I didn't realize that I didn't verbalize to you." 
Ok..... now THAT'S an apology that seriously trumps my "want to kiss?"  I don't miss the arguments but I miss the making up.

Adam ..... the other one affected

Today I returned home from visiting with Adam, my son.  He moved to South Carolina with his girlfriend to start a new job last year.  He moved in June, Mike died in August.  It was hard being without my two men.  I had a wonderful time visiting with him for one evening and one day.  He showed me around his favorite places and we went for a boat ride to look at the dolphins off of Hilton Head Island.  For the majority of Adam's life I have been living paycheck to paycheck.  He is very accustomed to doing without at Mom's house.  We did a lot of free things, like metro parks.  He complained a bit as he got older when I still wanted him to walk with me and he wanted to .... just not walk with me.  So, as he is driving around the island, guess what he wanted to show me?..... the park that he goes to all the time!  It made me smile from the inside out.  Of course, this park had alligators.  He pointed a couple out to me.  One of them he thought looked like it was dead so he said that he was going to go a little closer and check.... to which I replied.. "Adam Richard Francis, don't you F...... dare!".  He turned around, looked at me and said "well, I didn't miss that".  LOL
After taking that 11 hour drive it also occurred to me that Adam has taken that same drive a couple of times now to be with his family.  While Mike was in the hospital for that last week, I had been posting updates on Facebook.  During that time I posted very little about what I was feeling.  But one of my posts I did and Adam read it.  It was after Mike's cardiac arrest and it was the first and the last time that I had ever been with him in the hospital when he wasn't conscious at all.  I felt an extreme loneliness with his absence.  I posted something like "I've never been so lonely with Mike".  Adam read my post and after his shower, he told his girlfriend "I need to be with Mom, do you want to come with me?".  My son, my wonderfully loving and caring and sensitive boy drove that 11 hour drive because he heard my despair. 
I know he also wanted to say goodbye to Mike.  The two of them took to each other like I had hoped.  I mentioned that our relationship was not well received by his family, well, mine wasn't all that involved either.  I don't think Adam was still living here when Mike first moved in, but he was here often.  One time Adam messaged me and asked me to buy him alcohol, when I told him no because he wasn't old enough to drink, he said "just ask Mike'.  So the two of them sat in Mike's room explaining to me how it was legal for Adam to drink in my house with me present..... I bought the alcohol.  Adam hung out back in Mike's room more than anyone else who wasn't on the payroll.  See, for Adam, being around someone paralyzed and vent dependent and slow to speech was no big deal. 
Adam was raised seeing firsthand how his sisters had been treated by others.  Most of that had been positive experiences, but he also saw how people would avoid them.  He didn't want to be like them.  Adam went to Easter Seals preschool with his sisters.  He was part of the peer group there.  He met all kinds of children who weren't typical.  He has had a very unique life in that he has seen and learned early on that you make the most out of whatever ability you have and you don't focus on what you can't do.  He has learned to accept people where they are and as they are.  That's how it was for him with Mike too and Mike loved him for it.
Adam prefers not to be hands on with the care of his sisters, or probably anyone.  He knows a lot of what it takes but he doesn't like the responsibility.  When he was younger I taught him his numbers and a lot of basic math by having him prepare syringes with his sisters meds.  They get all their medication and food through a tube inserted into a surgically made hole into their stomachs (g-tube).  To this day if Adam were to give them their medication I bet you would hear him say to himself "now clamp your line"....
There have been a couple times in his life when he had to help me.  I hated asking him because I knew he would feel responsible, but it couldn't always be avoided.  Taylor had her surgery for her trach the day before Thanksgiving.  On Christmas day it was just me with my girls (nurses in homecare often give themselves the day off for holidays) and Taylor was having a lot of difficulty with her vent.  She was still getting used to it and as Mike explained to me, it feels different to have the breath given to you without your spontaneous control.  Taylor was still taking her own breath, but the vent was providing support too.  Taylor need to be taken off of her ventilator because she was having trouble clearing out her airway and coordinating her breathing.  The fastest way to maintain an airway is to use an ambu bag ( that thing you see them squeeze during CPR) and alternate that support with suctioning..... very difficult to do with one person.  I knew Adam was to come over some time that day but I didn't know when.  Right when I had picked up the phone to call for a squad (which meant sending her into the hospital without me since I wouldn't have had a nurse for Mackenzie), Adam walks in.  To me it was like a miracle.... to him, he was scared shitless.  I quickly explained what I needed him to do and that there was NO WAY he could do it wrong.  I told him that I take 100% responsibility for what needed to be done and how I just needed an extra set of hands.  Together we were able to get her stable and the squad was not necessary.  When we got her stable and I told him he could stop using the ambu bag because I was going to try to put her back on her vent, we both just stared at her hoping she was going to be ok.  When he saw that she was ok he said "Mom, I was scared to death".  Teaching moment..... "Me too, babe.  But look what we did, we knew what was best for Taylor and we did it.  If we weren't scared there is probably something wrong with us.  Thanks for helping me save the life of your sister."
I've always included Adam in any teaching that needed to be done for his sisters.  Even Taylor's trach tube change, I took him out of school for the day so that he could participate with the training with the nurse educator at the hospital. Actually, I took him out of school to run the annual community yard sales too.  Sometimes life lessons trump classroom. And when it came to hiring or firing nurses, there wasn't any opinion I trusted more than his.  I have fired nurses before just from Adam saying "Mom, something doesn't feel right".  We were a team, we are a team.  There isn't anyone else I trust more. 
I know that moving to South Carolina has been great for Adam and I am very happy for him.  But I know too that his misses his sisters ..... probably even more than me.  :)
Getting used to our house without Mike and without Adam at pretty much the same time really sucks, but I know that Mike would be as proud of Adam as I am.

musings

You know, sometimes I wonder why I am writing this Blog.  Sometimes it feels like it just flows right out of me and sometimes I publish something and think what the hell did I just say.
I am an extremely private person.  I have been ballroom dancing for 30 years and before Facebook, I bet none of these friends in the dance world would have even known I have children.  When I have talked about them in the past I was always met with pity and it infuriated me, so I just stopped talking.  Then when Mike came into my life I started opening up even more.  I sometimes think now that I've become a self indulgent oversharer.
I feel like I still have a lot more to say though.  I suppose if I knew that no one would ever read these, I would probably still write them.  So what the heck..... I'll keep writing them.
I started out talking about Mike with these and he is definitely in my mind still when writing, but these next few will probably get into my own life and family a little more.  I feel like that has been rattling in my head lately so I might as well put it out there.
So for those of you reading them, I hope you are reading them with my intent of just sharing what a wonderful and painful journey this has all been.  And that even after death, I am still Mike's girl.

Music and people

While Mike was still living in the nursing home and we were spending time together getting to know each other, one of the ways we learned about each other was through music.  He learned that I will sing to pretty much anything he is playing whether I know the words or not and I learned that he has a lot of music stored that didn't have lyrics.  ;)   I meant that to sound funny.  Truth is, he loved to hear me sing.  Not that my voice is spectacular, but he loved this behavior of mine because it was me showing him who I was.  I grew up hearing a LOT of gospel hymns.  I know the words to a LOT of gospel hymns.  Another favorite memory of mine was one evening I was sitting beside him doing homework and he was trying to get my attention.  We would talk off and on but I kept telling him that I really needed to study.  He found a station of music that had all these old southern gospel songs and started playing them.  I couldn't resist.....  I'm still trying to study but I kept singing along.  Eventually he would wait until I started singing along and then change it to something else and wait until I started singing along to that one and then change it again.  It took me awhile to catch on to what he was doing.... he was playing Name That Tune with me.  Eventually I put my books aside and said "ok, bring it on".  We spent the rest of the evening seeing how many songs I could sing along to.  He always knew how to get my attention.
The last year of Mike's life was extremely challenging for us as a couple.  I was providing most of his care and it was getting harder and harder for me to maintain any kind of life outside of his immediate needs.  Gone were the days when he would encourage me to go out and do all these things and come back and tell him all about it.  He wanted me with him.  Things are always easier to see after the fact..... I see this now.  I didn't see it then.
But back to the nursing home days of our relationship, he loved watching me put my makeup on and my high heeled shoes and go out.  He would watch me intently and I would pretend I didn't know he was.  That continued once we were home.  He suggested things for me to do... ballet... different places to eat.... horseback riding.....   It was fun to try things I wouldn't have thought to do on my own.  Even though I was doing these things by myself, he was always there with me with my pictures.  Every picture I posted on Facebook were me showing him my life outside of our home.  Once the nursing became such a problem it was harder and harder for me to want to do these things.  When a nurse came on I wanted to just curl up and sleep.  Mike still wanted me to go out and do things.  While I was out dancing, I met a guy who could see that I was often withdrawn and almost sad.  He went out of his way to get me to talk to him and dance with him.  Eventually we became friends and I kind of hid behind him.  I mean this literally and figuratively.  He was huge, when we would go out to dinners I could disappear.  He would do all of the talking.  I never had to say what I wanted or answer how my food was.... he took care of me.  It was a comfort to me to have that kind of a companion.  He turned out to be an asshole.... but for what I needed at the time, he helped me still maintain a life outside of my home.
There was another man I met at a festival.  He is a singer and songwriter.  We met at a washboard festival..... that Mike encouraged me to go to..... and from there we became Facebook friends.  It wasn't anything more than hitting the occasional like on each others posts until about a year later when he messaged me and asked if his band could come to our house that year while they were in town for the same festival that I had previously met them.  He had seen my posts and he knew that it would be hard for Mike and my girls to experience going out to hear live music and he wanted to bring it to them.  It isn't just him, the entire band was so incredibly kind and generous.  They did come to the house and we all loved it.  We still watch the recordings.  The last hospitalization for Mike I was listening to my music on my phone on shuffle.  One of the songs from my friends group, Steel City Rovers, came up.  It brought my friend to mind, his name is Ryan.  My brother's name is Ryan so this Ryan became "Singer Ryan".  I'll just call him Ryan here.  I messaged him and told him of my struggle with my current situation and I asked him if he could be someone I could reach out to. He kept himself available to me pretty much around the clock.  I would find out later that he sometimes was answering my messages during short breaks between sets on stage or when he was out with his friends or his girlfriend.  He played a huge role in my sanity..... he still does.
After Mike died I received messages from a lot of his friends.  Most I had never met but they had seen my Facebook posts and wanted to reach out to me.  You've all had that, right?  Right after major loss a lot of people reach out for support.... but then when it dies down and the loss sets in you feel lonely again?  It was during that lull when one of Mike's good friends from law school messaged me and simply said that he was thinking of me and thinking of how different my life must be now that Mike was gone.  I answered him back politely, just letting him know that I was happy to hear from Mike's friends and that I was doing ok.  Then for some reason... totally out of character for me.... I admitted that I gave him the polite and easy answer.  He responded with saying that he was hoping for the real one, the messy one.  Since then he has been someone who stays in contact with me.  I should mention that none of these relationship are of the romantic kind, just extremely kind people coming into my life at the right times.  Mike's friend reminds me so much of Mike in how he talks.  I am comforted by his messages even when they are not meant to be comforting.  He also likes to challenge me a bit like Mike did.  On multiple occasions his responses to my messages requires me to google a word or a phrase.... that's lawyers for you....  Recently he ended our conversation with vaya con Dios.  Of course I had to google it..... it means go with God, btw.  But the rest of the entire night that song was in my head.... as it probably is in yours now..... if it isnt'.... google it, it will be.
Back to music.... today... which is technically yesterday since I woke up in the middle of the night so it still feels like yesterday.....  3 different times today these particular songs came into my day.  I have had a little more of a challenge to stay happy the past few days.  Today/yesterday, I was driving around going nowhere and I had my phone on shuffle and Singer Ryan's song came on.  Then later in the day when I was out driving around again (this time with a purpose) Adios and Vaya Con Dios started playing on the radio... it isn't a current song and it wasn't an oldies station.  I should mention here that Mike's friend often encourages me to keep in touch with my emotions, to not try to shove them down but to let them out.  Even though both of these songs had brought me back to a memory associated with Mike and these supportive men, it wasn't until I was at dinner that it all culminated to me crying in public .... which is something I don't do.
There is a song that many people have sung, but Leonard Cohen's live version was Mike's favorite.... Dance Me to the End of Love.  Mike was tearful when that song was playing and as I am wiping his tears he mouths the words "You".  He was telling me that this song made him think of me.  So tonight as I am sitting at the Refectory expecting to enjoy a wonderful night of music and great food..... they play this song.  I couldn't eat another bite, I just sat there and cried.  I cried because all day long I think Mike was trying to get my attention with music until I finally heard him.