Knock, Knock!

On the next to the last day that my dad was on this Earth, I promised him that I would take care of my mom and my grandmother and my siblings, and I told him that we were so thankful to have had him to pull all of us together as a family.  And then, as I knew I needed to say for him, after all he had done for me all of my life, I said to him, "You can go. But you have to come back to me!" Dad, who had lain still for more than a day except for the slow rise and fall of his chest from rhythmic breathing, started stirring in the bed, moving around and kicking the covers in an agitated fashion.  Instantly I realized that he had heard me, and I was ashamed of the selfishness behind what I knew he thought I was asking him to do.  "Oh, Dad," I cried. "I know your body can't do it anymore. I know you are doing everything you can to stay here with us, but it's ok if you can't. You've finished the race: you've done everything you needed to do, and we will be ok."  He immediately settled down again, and I just sat there beside him, quietly crying, biting my lip to keep from wailing because I knew if I did that he would hear and be upset by that too.  I wanted to tell him that what I'd meant was that I hoped he could try to send me a sign, after he'd gone on ahead, and that he could come and be with me and the rest of the family later, in spirit.  I didn't tell him that, though, because I didn't want to risk causing him any more distress, and so I told myself that he would do it anyway, without having been asked, if he could find a way.

There are so many times these days that I feel him right here with me, and my sisters and my mom feel the same thing at times, too.  Sometimes I feel his spirit when I look up into the sky and see big white clouds contrasted against a blue sky - or when I see a beautiful sunset or sunrise.  Sometimes it's when I see or hear or even smell something that reminds me of him in such a strong way that it's impossible to ignore or overlook.  And sometimes the thing that makes me feel a connection with my dad is seeing a redbird, something that often happens at times when I need comfort or encouragement or when I just need something to make me smile and think more positively.  

My sister Nancy was the one who first commented that she had been noticing a redbird around her house and in other locations on a frequent basis.  After she said that, I started thinking about it and realized that I'd seen one around more often that I usually did, too. Other people in the family began to comment that they had seen redbirds in certain locations at different times, and over time it has evolved as a symbol of comfort and positivity whenever any of us sees a redbird.  

I sometimes think that Dad's spirit takes turns spending time now with each person he loved and watched over while he was here in this world.  If one or more of us are on the road, I think he's probably traveling along with us; if one of us is having a particularly difficult day, he's likely there to comfort us, often in redbird form.  

Yesterday morning, not long after I'd gotten to work, I checked my email and saw one in my Inbox from my sister Nancy's friend Suzanne, who, along with her family, has been having to make some very difficult decisions and plans as her dad enters into hospice care.  In the email, which Suzanne had sent to me and both of my sisters, she told us about something that had happened that morning as she was getting ready for the day.  Suzanne knew my dad and has heard us talk about the significance that redbirds have to us, and she has given me permission to share her words and a that photo she took:

I was getting ready in my dad's bathroom for a meeting at the hospice home. I was thinking about you girls and what you went through and how tough this all is. When I hear one knock at the window.  I think it's something to do with the storm. 

Knock again.  So I look, and this determined cardinal is there.  Going back and forth on the window.  Making sure I see him.  He only delivers one knock at a time .... but they are forceful.

Notice me!  I run to get my iPad to get the photo and capture the moment.  He knocks while I run away.  I take the photo and return to getting ready.  KNOCK.  

I turn around and say out loud, "Yes, I see you. And I know everything will be ok."

He knocks one last time and then is gone.  

And I have chills and an unbelievable sense of peace at the road we are about to travel.//

~Suzanne

Here is the photo she took - the redbird is in the bottom right corner of the window, looking in at her.

The Truth

I’ve been thinking a lot lately about the fact that there isn’t a word to describe the role that a child assumes when a parent goes on ahead.  For the spouse, there is “widow” or “widower,” a term that comes from an Indo-European root meaning “to be empty.”  

The truth is that, without my dad, part of me is empty too.  Floating around in that empty space is grief, a state of being in many different emotions, not the least of which is regret.

Several months ago, I read the book House Rules by Jodi Picoult, and a line from the book really stuck with me:  “Living with regrets is like driving a car that only moves in reverse.”   I know in my head that’s true; regret, especially in a situation like this, is an exercise in wheel-spinning.  It certainly isn’t going to help anything, and yet it’s still present, pushing questions and thoughts and other emotions into that empty space on a regular basis.  

Of course, I wish we had found out about the cancer sooner – soon enough to have done something about it!  Even if earlier detection didn’t result in a cure, maybe it would have given him longer to live.  Even if more time wasn’t in the cards, maybe earlier detection would have resulted in less of a loss of function for him so that he could have enjoyed the time he did have left.  

Beyond that, I think the remaining regret is entwined with disappointment, in some cases because of things that happened or had to be done and in others because of things that didn’t or just weren’t possible.  

I wish we’d had time to investigate other options for him and that we could have talked to him about those options, both from a medical standpoint and other choices related to how he wanted to spend the time he did have left.  He said he wanted to go to a beach, but that was when we all thought he was going to get better and so that got added to his Bucket List for when he was feeling better, which of course never happened.  I regret that it just wasn’t to be for him and that, no matter how hard we tried or how much he deserved it, we couldn’t make that happen for him.

Dad on the beach, when he was healthy

I wish it had been possible for us to be sure he knew he had so many friends who loved him.  I will always regret that we didn’t encourage more people to visit him when he was sick.  We didn’t, because we were trying to protect him, but the end result wasn’t what we expected or intended and for that I am so sorry.

The grief counselor has helped me to see that I would still have what-if’s and second thoughts to consider in hindsight if we had gone a different route, though.  For example, if we’d said no to having him go to rehab – then we would have wondered if having he go would have helped him get stronger physically, mentally, and emotionally.  If we’d taken him to the beach in lieu of treatment, we’d have wondered if making another choice would have extended his life or even possibly cured him if we’d sought treatment.  And, in either case, he would have been miserable anyway.  The chance for quality was squashed by the tumor.

"[Y]ou can't connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something -- your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life."  ~Steve Jobs

What I Miss The Most

I miss my dad, a lot, all the time.  Lately, I’ve been thinking about what it is about him that I miss the most.  As anyone who knows me know, I love lists.   So here’s my list so far for What I Miss The Most …

 *I miss seeing the wrinkles that formed around the outside corners of his eyes when he laughed or smiled, both of which he did A LOT.  So often people don’t want to be photographed if they are not at whatever they consider to be their best – their hair isn’t just right, they need to lose a few pounds, the weather is too hot/cold/windy, they don’t have the “perfect” outfit on, etc.  I’m so grateful that Dad didn’t worry about any of that; having so many photos of him, especially when not everything was “picture perfect,” has been and continues to be so comforting to me.

*I miss his technologically-inept, stream-of-thought text and email messages – which he typically signed with his initials in lower-case or two slash marks or both.  He didn’t worry if everything was exactly right before he texted or sent an email.  He just wanted to convey a message, and he did that so well through so much more than just with words.  His emotions (usually his enthusiasm and humor) were evident in those messages, and they were contagious.  The emails and text were full of life, just like he was.
 

*I miss his excitement for whatever was coming up – he loved to make plans, always wanted to “have something on the calendar” to look forward to.  I am finding that to be good advice for moving forward in my grief, too.

  

*I miss watching his interaction with his grandchildren.  They called him Gramps, and their relationship with him was different from every other grandparent-grandchild connection I’ve ever seen.  He was not only one of their biggest fans but also a one-man Entertainment Committee for them (and for us).  He loved to plan things that he thought would amuse and delight them.  For example, when he knew one or more of his grandchildren were coming to visit, he loved to hide from them and then jump out and “scare” them (it wasn’t really that scary because he did it every single time!).  He loved to tell them ghost stories, complete with a flashlight and scary noises for emphasis.  When my parents first moved into a new house after Mom retired, Dad schemed for weeks about how he could best use the little historic graveyard right in the middle of their new neighborhood as a prop when the grandkids came to visit.  When the day finally arrived, he sneaked around the back of the neighborhood while my mom took the kids on a walk so that he could hide in the little graveyard.  It was a grand plan, except that (a) he wasn’t really that sneaky – the grandkids knew from his behavior and the look on his face that he was planning something before they even left on their walk, and (b) some of the neighbors (who didn’t know him yet) saw him hiding under the tarp waiting to jump out at the kids and were ready to intervene (they told us later that they had been considering calling the police), thinking it was some creepy guy waiting to attack an innocent woman and her grandchildren!  

Dad laughing, after a shaving cream attack by the grandkids

*I miss hearing his voice – talking and singing and laughing.  We have some audio recordings of his voice, but of course it’s not the same.

 

*I miss his goofiness, his sense of humor, and his willingness to take a joke and to make fun of himself.  When my younger daughter was learning to ride a bicycle without training wheels, we had a set of Barbie biking gloves, helmet, and knee pads (in case of a fall).  Dad saw them later in our garage and put them on himself, which was funny - but not nearly as funny as it was when he discovered the knee pads were so small that he couldn’t get them off without assistance.  (We "let" him wear them for awhile just for effect before we helped him get them off.)

Dad, hamming it up with Mom's purse

*I miss the inside jokes and the memories that only the two of us shared.  There were so many, and I'm so afraid that I will forget some of them.  Some of them are important; others are not so much but still help to quell the pain in my heart when I think about them, like when I was a teenager and I bragged to him that I was learning sign language.  He said, "I already know sign language!" and then demonstrated his skill level by flipping me the bird with both hands (all of this while he was driving down the road).  


*I miss his perspective, his positive attitude, and his way of dealing with different types of people and situations.   He never missed a chance to say hello or to speak kindly to another person.  He always looked on the bright side, and he felt so lucky every single day that the rest of us, by association, did too.

I am sure many more things will go on this list in the days, months, and years ahead.  Simply put, where my dad used to be, there is a hole in the world, one that I keep finding myself either having to walk around or falling into.

Part 7 – A Revised Bucket List

Continued from Part 6

When people talk about having a Bucket List, they picture themselves in the same physical and mental condition as - and usually in better financial condition than - they are at the time, being able to do things that they want to complete in their lifetimes.  We thought of a Bucket List in that same way, until Dad couldn’t. 

Two days after Dad’s surgery, the oncologist came to see him in the ICU and, with my mother and my youngest sister there, told him about the cancer.  Dad asked what would happen if he didn’t have chemo or some kind of treatment, and the doctor said, "Your lifespan would be shortened considerably.”  

In what Dad seemed to consider to be the worst part of the news, the doctor told him that he would not be able to drive a car or to go to work during the treatment period, which he said he anticipated to be about for six weeks.  The oncologist said that, if they could get the cancer into remission, it was highly likely that the cancer would recur despite treatment but that there were different options including clinical trials  that could be considered at that point.  Dad asked how soon treatment could be started ("The sooner the better!" Dad said.), and the oncologist told him he would need more time to recover from the surgery but that chemo would probably start before Thanksgiving.  

Dad, working on his Original Bucket List, in better days

Later that day, Dad was transferred from the Neuro-ICU to a room on the Neuro floor of the hospital.  (I was so relieved that the doctors wanted him to be on that floor instead of the Oncology floor.  It seemed to me to be a symbol of Hope at the time, but we later found out the quality of care at that hospital was actually better in Oncology.)  Some of Dad’s tubes and wires were removed, and, with a walker and lots of assistance and supervision, including constant reminders to keep his hands on the grips of the walker, he started to be able to move from the bed to a reclining chair or the bathroom and back. 

The no-sleep persisted, and so we had lots of time to talk to Dad.  With the tentative plan for chemo in place, he began to think about other plans for the future.  We all desperately wanted to have something for him – and for us – to look forward to, and thus Dad’s Revised Bucket Plan began to take shape.  There wasn’t going to be any skydiving or mountain climbing for him, but there were still things he wanted to do, and we wanted so badly for him to be able to do them.

Another thing ticked off the Original Bucket List

Dad’s Revised Bucket Plan took many forms over the upcoming days and weeks; we spent countless hours talking to him and to each other about what he would be able to do for the rest of his life, with a particular focus on quality and fun and fulfillment.  Dad already had more than the average person under his belt as far as major life accomplishments (for example, he’d run the Boston Marathon twice, and he once ran a half-marathon down Pikes Peak - a.k.a. "El Capitan" - in the Rocky Mountains), but he had many more goals left to accomplish.

One of his biggest original goals was happening one week later – the Ironman Triathlon – and it was evident that he wasn’t going to make it.  Right after his surgery, he asked if I would call and see if his registration could be deferred; he thought he could do the Ironman the next year instead.  Cruelly, though, he gradually realized that wasn’t going to happen, and, over the course of the next few weeks, he kept having to change his ideas about what would be possible for him.  Finally, he ended up focusing on wanting to be on a relay running team for a long-distance event; he and I spent hours one night looking up such events and finally settled on one  called the Illinois River to River Relay in which an 8-person running team tag-teamed to cover a distance of 80 miles, with teamwork and covering the distance being more of a goal than speed.  He said, “I could tell the team ahead of time that I might have to walk a little bit, just in case.”

Dad and one of his best friends Bob at the 100th Boston Marathon

Dad with one of his best friends Wayne after they finished the 100th Boston Marathon

The focus of the second part of his Revised Bucket List was family.  He wanted to go on a big family vacation – at first to a beach (“Preferably to the Pacific,” he said.) and then that got revised to just going to a lake or a river nearby with the whole family.  He said he really wanted to go to an NBA game with his children, my two younger sisters, my brother (from my dad’s first marriage), and me.  “Long-term,” he said, “I’d like to be around to dance at my grandchildren’s weddings.”  I thought that was a kick-ass goal, especially since his youngest grandchild wasn't quite two at the time.

And last - but certainly not least - on his Revised Bucket List was to get a cat.  He saw this as possibly the biggest challenge of the things on his list; my mom isn’t a big fan of cats, and so he knew he would have to convince her that it was a good idea before he could execute his plan.  We spent lots of time debating about how he should approach her and then, after he said he thought she was “starting to cave,” we talked and talked about what the cat should be named.  It took him several days to decide on a name, but he was clear all along about what he wanted in a cat: “one that's not too young but not too old, that will be friends with the dogs [their two greyhounds] and that will be a lap cat.” 

What I learned from watching my dad revise his Bucket List so quickly and so drastically is that there is little difference between something that makes you happy and something that doesn’t; the trick is to convince yourself that they are the same.  On one hand, it ripped my heart out to see a man who was so enthusiastic and energetic having to resort to modifying his Bucket List, but on the other hand I was so incredibly inspired and touched that this same up-for-anything guy was so humble and willing to make those sacrifices so as to become satisfied with a Plan B, something different and ultimately less but fulfilling and sweet all the same.

Up next … Part 8 – Safety First

The Fight Against Cancer

When I was in college, my grandmother (my mother’s mother) was diagnosed with breast cancer.  She had surgery, went through chemo, and made it into remission for awhile.

After I graduated from college, I lived with her and my grandfather for a few months while I did one of my internships at a hospital near their house.  At the time, my grandmother, then out of remission, was struggling through her second course of chemo, which did not do its job that time around.  She held on long enough to give her input during the planning of my wedding and to hold her youngest grandchild in her arms for the first time, and then she went on ahead, two weeks before I got married.  And thus begun my membership in the I Hate Cancer Club!

Spurred on by this over the years, I’ve participated in at least 25 runs benefiting organizations involved in the fight against cancer, including the Race for the Cure, the St. Jude Marathon and Half-Marathon, and various other races.  Each time, I was proud and humbled to be part of the effort and excited to be part of the extended cheering squad for those involved in this war.

Last August, I participated in the Avenue of Hope 5K benefiting the American Cancer Society in honor of Cindy, a friend of mine battling cancer.  It was a small, local charity race, my favorite kind, full of meaning and spirit and camaraderie.  A group of my friends also completed the race in honor of Cindy as well as many other loved ones who are fighting or have fought this terrible disease.

Cindy with her "team" at the ACS race, August 2010

 Only eleven weeks later, taking part in the fight against cancer took on a whole new meaning for me and the rest of my family. 

Last weekend, I ran the Avenue of Hope 5K again, this time with my younger daughter Molly, who proudly wore her grandfather’s racing shirt in his memory and who won her age division.

While my dad was sick, one thing that irritated him was, as he termed it, “too much talking.”  I could never figure out if it was because of the fatigue from which he suffered because of the incessant insomnia caused by the medications he was taking, because of the tumor in his brain, because of the emotional stress he was under, or because of something else that he couldn’t tolerate chaos or noise during that time.  Many times he asked us to be quiet, even though oftentimes he himself would later break into the silence by asking a question or making a comment.  Most of the time, he just couldn’t tolerate someone talking about the same thing for too long or asking him too many questions, and he particularly disliked it when several people around him were having a conversation and when other people were taking what he considered to be too long to figure something out.  He just didn’t see the need for inefficiency, something to which I can certainly relate.  As we talked about schedules and plans and details that we felt needed to be ironed out, Dad often chimed in by saying, “Don’t worry – just hurry!” meaning he thought there should be less discussion and more action.  One of my nieces even paraphrased Dad at one point when we were talking about something we were going to do later in the day and said, “Let’s quit talking about it and just do this thing!”

As much as I am honored and motivated to continue to participate in events to raise money and to promote awareness for this worthy cause, though, and as much as I take notice of the bumper stickers and related paraphernalia for awareness of different types of cancers, I’m pretty sure everyone is aware of cancer and the devastation it leaves in its wake at this point.  What I want - what we really need in this fight - are prevention and a cure.  Now let’s quit talking about it and just do this thing!