A Day In The Life

Or is it? The days are difficult. I feel as if all we do is drag poor Lou from bed, to chair, to bathroom, to chair, to bed. This is a day in the life...or is it, life? If Lou knew, he would say no. He would say no to this life I think. But he doesn't know, really. I'm told that is a blessing. I suppose. For Lou, yes, for us, of course not. I can remember when the days in the life were more joyful, even in the midst of this. I can remember when I could find the good in the days, each and every day, in this life we found ourselves in. I can remember when the notion of this..this "life", was romantic in some strange way. I can remember having energy to push on no matter what. I can remember Lou winking at me. I can remember a twinkle in his eye. I can remember having real conversations. I can remember when this life WAS a life. And now, I wish I had THAT "life", back. Not even our old, "real" life, but THAT life...I would take THAT life back...last summer for instance. It's so strange to think that I would take that life back, gladly now. I would take the treatments, the doctor appointments, the MRI worries, the blood tests, the ongoing searching for information...I would take it all over this. I would take a day in that life again, because a day in this life....is not.

Happy Birthday Lou

Today is Lou's 70th birthday. Ordinarily, such a milestone would certainly elicit a grand acknowledgement of some sort, such as a party, or maybe even a trip, or who knows. Alas, not this year..no, not this year. Inspite of the fact that we are, of course, so happy he has made it to 70, we can't really celebrate it in the traditional manner. Lou doesn't really know it is his birthday today. We have decided to only acknowledge it once, after dinner. Last weekend, we talked about Father's Day several times throughout the day, and poor Lou dissolved into tears each and every time. We finally got the message and stopped, we never gave him his presents. Such things make him very emotional now. And, each time he hears it, it's the "first time" of course. It just is not worth the emotional turmoil, on all of us. So, it's just another day here, another Sunday. I am glad we had a big party last year for Lou's birthday. It was well attended and Lou was really able to enjoy it. I never thought he'd be here for another birthday. I didn't think he'd be here for THIS birthday eleven years ago, truth be told. But here we are. I wish we could really celebrate this day. I wish we could do it up in the manner he so deserves. But since we can't, I wish the day would be over. Does that make any sense? Probably not, but then, nothing much does make sense anymore. Happy Birthday dear Lou.....I love you so very much, that is about the only thing that still does makes sense.

Got Gelato?

Those of you who were with us on this journey last summer will remember hearing about magical summer evenings on our "front porch", enjoying a gelato. Those of you who were not with us..we don't have a front porch. We live in a tall building with a plaza below street level that serves as our "front porch". There is a great italian deli located there, and they serve gelato....it is heavenly stuff! Last summer, Lou and I spent many evenings on our front porch. He loved it. But each time we were there, he would say "this is so nice. Why don't we do this more often?". Each time we went, and we went often (I have the extra ten lbs to prove it), was the "first" time for Lou. It's hard to believe, but it's true. Last summer, Lou could walk down the steps to get there. This summer, we have the wheelchair. The only problem with the wheelchair is that it is not easy to get to that particular location with a wheelchair, and, it is not easy to maneuver...Lou is not a small man. At any rate, after dinner, I decided we must have gelato, it was a perfect summer evening. Lou actually agreed. He has not been out in quite some time, but I knew the idea of gelato would work! After much huffing and puffing, I got him there. It was not quite as magical as last year. Lou does not talk as well, or as much. He has a hard time managing spoons, cones, and things that melt. He slumps in the wheelchair and looks sadly. Sigh. But then, the glimmers come...."what do you think we should do with the rest of our lives?", he says. Hmmmm....that's a loaded question, isn't it? He tells me he really feels lucky...amazing, isn't it? And, "when do you think I should retire", he says....remember, he has not been in the office since late last year...he says he "thinks" he could travel with me. This, after I barely got him down to the plaza of our building. But the best remark he made was that he wants to do something to help others he said. "What do you think it would be", I asked. He doesnt know. He wants it to be "significant." I could not get him to verbalize what is in his mind....but something is there. Guess we'll have to have more gelato to find out what it is....another ten pounds this summer? Well, I guess that would be a good thing, wouldn't it.

Fathers Day

Most of you know our story. Lou is 16 years older than I. When we met, he had been divorced for several years, with no children. I do not think Lou ever thought he would BE a father. So, when he became one, he was truly beside himself with joy. I remember him walking home from the hospital after Drew was born, carrying balloons that were sent to us, it was very very windy (it is Chicago after all), and he said it was so fun to walk home with those balloons blowing in the wind, everyone knew he had just become a father! And, when Damon was born, he was the one who saw the two rainbows that appeared in the sky outside the hospital window..he said they were for Drew and Damon. He was the one who found Damon's name in a name book while we were in the hospital! He didn't used to like kids in restaurants, but when Drew came along, we brought him everywhere of course! Lou took Drew to London. He took Damon to Japan. He took us all to Greece. He coached Drew's little league team when he really didn't care much for baseball, and he encouraged Damon's creative talents by making sure he always had sketchbooks to fill. Being an older father, he wasn't so rough and tumble with the boys, but he sure taught them alot. By example, mostly. He is a wonderful father. SOOOOO very proud of his sons. Loves those boys unconditionally. And yes, he does spoil them, though he doesn't think so. Since the brain tumor entered our lives, Lou's fathering has changed of course. But I will tell you this, the well being of his sons has never, ever left his mind and heart. I can remember in the beginning, after the diagnosis, when each day started with such confusion and tears....he would look out the window and if it was a gray fall day, as they often were that year, he would ask..."Did Damon take a jacket today, it looks cold".....it would just break my heart. And, he would insist on getting out of bed at 7 am when Damon left for school to tell him he loved him. YOu need to know that Lou ALWAYS would make sure to be at the door, saying goodbye and I love you when we left, no matter where we were going or for how long. He kept this up for awhile after the brain tumor appeared, and then one day, he just couldn't do it anymore. But he still calls it out..." Love You"......And the constant, never ending mantra now..."Where's Drew?" "Where's Damon" "Are the boys ok?" "What can I do to make this easier on the boys", "how are the boys doing"... always, always on his mind. We almost lost Lou 11 years ago to an emergency ruptured aorta. He miraculously survived a 9 hour surgery. The boys were so young then, Damon , only 5 1/2, and Drew , 12. Such tender ages to lose a father. I do believe God spared him so that he could raise his sons and see them become the men that they are. I thank God for those eleven years, how fortunate we were. And, how fortunate we still are...we love you dear Lou....Happy Father's Day.

I know he knows

He knows. He knows something is terribly wrong. He knows he is declining. How do I know he knows? Last night, as he was having great difficulty getting into bed, he broke down....and said "this is not the way I want it to end"...it's so heartbreaking, it's so painful to go through this. Chinese water torture. Tonight he again was very sad, and said "what's wrong with me"...he knows. And we are helpless. There is no answer to that question, no answer that "works". Helpless. A bright spot later this evening however. Drew was visiting and helping to get Lou in bed (thank you Drew). Lou has a habit now of laying (lying?) much too close to the edge of the bed, I think because he is just too exhausted to push himself over any further. One night, a few weeks back, he actually fell OUT of bed in the middle of the night. Thank goodness that was when he was still able to help get back IN bed. Anyway, Drew was trying very hard to get Lou to move away from the edge of the bed. We kept telling Lou to move towards the window (opposite from the edge of the bed). And I was recounting the story..you know..."it's really important that you try to move over Lou, because when you are too close to the edge you could fall out. In fact, one night, you DID fall out..." yap yap yap, and Lou says, "I fell out of the window???", kiddingly. It was funny, broke the tension. Thank you Lou. For those of you who don't know, we live way up on a high floor so falling out of the window is not really funny, but in this context, it is. ANY joke we get out of Lou nowadays is considered funny! I know he knows. I liked it better when he didn't know. That was hard. But this is harder.

Sleep Walking

I never really did like Mondays. They always seemed to come around too quickly. The three day weekend makes alot more sense to me. Now, I REALLY don't like Mondays. Not that it much matters, like I've said before, to Lou, and hence, really, to all of us at home with Lou, the days don't matter much. They are all the same. Except we know they are not. We exist "out there", where Mondays ARE Mondays, but we live with Lou...where Mondays are just like any other day. This Monday, today, I find myself sleep walking. That's the only way to describe it. I'm so incredibly tired. Worn out, me thinks. I'm doing everything that everyone says I should be doing to "help myself"...I actually went to a movie on friday night (thank you dear friend Bill , for keeping Lou company...). I actually went SWIMMING yesterday! I am doing something very fun with my dear sweet Anna tomorrow, those "tiny hands to hold" that I love so much. I am at the office as I write this. I will try to see friends sometime this week. But it doesn't really help. It doesn't help the way "everyone" says it should. I'm "supposed to" take care of myself...what, exactly, does that MEAN??? Does it mean getting more help with Lou, so that I become more removed from him, so this whole thing isn't so hard on me? It doesnt work that way. Removing myself makes me feel worse. Does it mean getting out more and trying to have some "fun"? I do that....but it doesn't really work either, because soon enough, I realize there is no fun at home, no fun for Lou, and then I feel sad. So what does everybody mean, exactly, by this idea of "taking care of me?". I dont know. All I know is, whatever I try, it doesnt work. I'm sleep walking. Sleep walking works, to a certain extent. I can just barely get through the day that way. And soon, the day is over, and then , I can really sleep. And sleep, is good. Sleep is where there is no brain tumor. Sleep is where my Lou is, the real Lou. Sleep is good. For so long, I couldn't sleep. Now, when I do get to bed, I sleep, deeply. To forget. I sleep to forget. I guess that is why, when day comes, I sleep walk. To forget.

Cruel and Unusual

Sometimes, as I watch poor Lou struggle with something so simple, like his fork, as he did tonight, I wonder what we did to receive such cruel and unusual punishment. I say "we", because we have all been punished it seems by this beast. It's the Catholic in me I suppose, who thinks maybe we are being punished for something...but what? What could we have possibly done that would warrant such a fate? Oh sure, we've had our arguments, I know that. But what family doesn't? There is no doubt we love each other. I don't think that's it. What else? Lou is the most generous person on earth, surely it is not for being selfish. And he is so kind, it can't be because he was mean. How is it that a national debate champion, university student body president, an outstanding student, successful businessman, volunteer board member, donator to just about every cause that comes knocking, loving husband, father, brother, uncle, and friend could be stricken by something so mean, so nasty, so unforgiving? HOW...or is it WHY? It's cruel. It is cruel and unusual punishment for someone with such amazing verbal skills to be unable to remember where his son lives. It is cruel and unusual punishment for the man who made pages of "to do" lists in tiny print, and got it all done in a day, to no longer be able to sign his name. It is cruel and unusual punishment for the man who knew the name of every waiter, cleaning person, doorman, etc to not know the address of his office. It's hell, really, right here on earth. Watching this incredible man become so greatly diminished...it's hell. Watching my son try to get ready for finals after a day like today..it's hell. Knowing it won't be any better tomorrow...it's hell. I used to be able to find the "good" in this...it's getting harder to. Prayers needed, definitely.

Sleepy Snuggly Saturday

The weather took a drastic change yesterday...cold, windy, gray and wet. Woke up to rain and fog today. Put my arms around Lou, snuggled close, and pulled the blankets up. No better place to be on a day like this...my big teddy bear...who mumbles in his sleep.."what day is it, do I have to be anywhere?"....and I say "it's saturday sweetheart.." He sighs deeply and goes back to sleep. And I hold tight, hoping the feeling of his warmth will penetrate and stay with me, always. A gray day every now and then can be a good thing.

Thank you , all

Thank you. Thank you to friends who let Lou ask over and over, "can I get you anything?" Thank you to friends who call and do not mind being asked over and over "so how are you ??". Thank you for keeping Lou company so I can go see a movie with the girls. Thank you for bringing me my lattes. Thank you for not acknowledging some obvious faux pas Lou has made...LOU of all people.... Thank you for presenting business plans to him, for playing the game as it was always played, even though you know it will be out of mind in five minutes. Thank you for driving hours in traffic to spend a just a few hours here. Thank you for visiting us in our darn building that has expensive parking, or NO parking! Thank you for talking to me on the phone. Thank you for emailing me. Thank you for getting more champagne...remember the lesson: "you can never have too much champagne!!" Thank you for carrying on at LB/A, for more than carrying on, for EXCELLING...thank you. Thank you for being caring doctors who don't mind my constant emails. Thank you for meeting me at the drop of a hat for coffee or whatever. Thank you for listening. Thank you for being understanding teachers to Damon. Thank you, sons, for shouldering so much. Thank you for taking time away from your own family to visit so frequently. Thank you for prayers. Thank you for kind words from people I don't even know in Walla Walla and elsewhere ! (more on that later...). Thank you for tiny little hands to hold when I'm feeling low. Thank you for making special CDs. Thank you for making dinners. Thank you for cards and letters. Thank you for hugs. Thank you for being there. Thank you , all.

TGIF, I guess

It's been a long and somewhat difficult week for a variety of reasons, some that have to do with Lou, and some that don't. Considering it was a "short" week due to the holiday (when WAS that, anyway?), it sure seemed long. I am glad it's friday, even though friday's do not have much meaning to me now. It USED to be that I would TRY to leave work "on time" on fridays, walk home, have a glass of wine, order pizza (that's the friday routine here..), and wait for Lou. We usually never would go out on fridays if we could help it...it was the night to unwind. I really used to like coming home on fridays with the week behind me.....there was something almost "celebratory" about it.....not now. Now fridays are just like any other day, certainly for Lou. Every day is the same. It could be Monday, Wednesday or Saturday, they are all the same. They have all been the same for 20 months. And for 20 months we have carried on the "two worlds" here..answering Lou's questions in ways that will not make him feel bad..."when was the last time I was in the office"..."Oh lets see, it's been maybe a month", "A MONTH", he says...oh if he only knew....or "what time do I have to be somewhere tomorrow?", as he goes to bed. "Oh, not til a bit later in the morning". "Am I going to the office?". "Sure, if you feel up to it". And that makes it ok, that answer is ok. To say "no, I don't think so" would raise the next question, "why not"..."well, maybe because you have a BRAIN TUMOR...??" or "well you know, you aren't well...". The thing is, there are many times Lou doesn't realize he is not well. So, we live in two worlds. The imaginary world in his brain, and I guess, the real world in his brain..the one with the growing tumor. There have been some changes in Lou this week. His walking is worse, he seems weaker in the legs. He has been more confused at times. His vision is really bad. At the same time, he still does not miss an opportunity to ask "can I help you" or "what can I get you".... we, of course, know, he cannot "help" in the kitchen, nor can he "get" us anything...but that's ok. Old habits die hard. Ever the gentleman. EVER the gentleman, still. TGIF everyone. Even you, Lou. Even you.