Heavy Doesn't Have To Be "Heavy"

The following post came across my twitter feed today, and it set me to thinking about the overall tenor of my blog posts and my realitity as I chronicle my mom's losing battle with cancer. I must admit that I have difficulty finding even brief moments of levity in the slow, excruciating loss of my mom. At times, the weight of caring for her, helping my dad, and being an oldest brother to my siblings in all of this feels too much to bear.

In light of the tragedy at Sandy Hook Elementary School, Debra Dotter Blakely shared the poem "Heavy" by poet Mary Oliver. Kelly Gallagher shared this post in his Twitter feed, and after reading the poem I thought about the incredible weight I have carried around with me these last seven weeks.

Take a look at the poem, and then I'll talk about how it caused me to consider how I "bend at the weight."

Heavy

That time

I thought I could not

go any closer to grief

without dying

I went closer,

and I did not die.

Surely God

had His hands in this,

as well as friends.

Still, I was bent

and my laughter,

as the poet said,

was nowhere to be found.

Then said my friend Daniel

(brave even among lions),

"It's not the weight you carry

but how you carry it -

books, bricks, grief -

it's all in the way

you embrace it, balance it, carry it

when you cannot and would not,

put it down."

So I went practicing.

Have you noticed?

Have you heard

the laughter

that comes, now and again,

out of my startled mouth?

How I linger

to admire, admire, admire

the things of this world

that are kind, and maybe

also troubled -

roses in the wind,

the sea geese on the steep waves,

a love

to which there is no reply?

Oliver writes, "till, I was bent/ and my laughter,/ as the poet said,/ was nowhere to be found." These past few weeks, I have allowed my worry and my desire to help my mom and dad suffocate me. Loaded with the overwhelming burden of my mom's inevitable death, I have "bent" before the task of relieving their pain. When faced with a great task, many refer to the wisdom that "By the hands of many a great work is made light."

The poet seemingly contends that when faced with bearing this unbearable weight alone, "It's not the weight you carry/ but how you carry it -/ books, bricks, grief -/ it's all in the way/ you embrace it, balance it, carry it/ when you cannot and would not,/ put it down." I have felt such a sense of grief and foreboding since learning my mom had little time to live that I have not "embraced" or even tried to "balance" the weight that I definitely "cannot and would not" put down.

"So I went practicing."

So I went practicing, and when I did, I remembered. Last week, my mom and dad and I found humor in some topic we were discussing. I honestly cannot remember the specific topic, but my dad yelled out, "Jeff! Now you made her water come out her nose." I turned the corner to see my mom laughing hysterically. THAT was my mom. I nearly missed it because I "cannot and would not put it down."

Now that my mom's cancer is Cancer, I must "linger/ to admire, admire, admire/ the things of this world/ that are kind, and maybe/ also troubled." If not, what is "heavy" will most assuredly crush me.

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It Was A Wednesday, And We Had Tacos

I think like most people, I always thought I'd have time to make up for mistakes I had made in my relationship with my mom. My mom is so tough that I just always figured she'd live forever - sheer force-of-will would help her to overcome any obstacle in her way. I figured I could wait and set things right with my mom at some point in time.

Mom at my niece Tessa's wedding in May 2011.

Now that my mom's cancer is Cancer, I know that I missed that opportunity, and I cannot get it back. During the last seven seeks, I have taken Family Medical Leave to help my dad care for my mom. Back in June, doctors diagnosed mom with small cell lung cancer. At that time, my mom was "Mom." The same acerbic personality as always.

Over the summer, mom had a small stroke, and even though afterwards she said she felt fine, fine did not mean "fine." Over the last few months, my mom's condition has deteriorated rapidly. The picture below shows my mom in a wig; it does not show the wheelchair necessary for her to get around for events like a wedding.

Mom with my niece, Tessa, and friends at my cousin's daughter's wedding in September 2012.

I have no idea now why we didn't take pictures that day at the end of October. Since the diagnosis, my sister and her husband have brought "Meals on Wheels" to my parents to save my dad from a day of planning and cooking each week. On that day - it was a Wednesday - they made tacos.

Mom was in severe pain from the not-yet-diagnosed pneumonia and a new fracture in a vertebrae in her back. We had started giving her liquid morphine as per her palliative care nurse's instructions. The morphine had not yet started to sedate her, and my mom was still Mom. We laughed while we reminisced about eating "battles" my brother and I engaged in when younger. The most notorious of those took place while visiting my late grandpa in Texas. My brother and I ate over 20 tacos each that day - ah, the abandon of youth - and my mom complained about having to cook so many tacos. She had her sharp wit. She had her strong rebuke. She had the "Hurley eye," that raised eyebrow that indicated her disapproval of our actions. She was "Mom."

The picture below shows my mom, sans wig, on November 11th. As she always does, my mom "geared up" for the visit from my wife and daughters. She posed for this picture at my daughter Meghan's request. After my wife and daughters left, Mom immediately went to sleep, exhausted from even a few hours of activity.

Mom with my daughter, Meghan, on November 11, 2012

Yesterday's post illustrates how my mom's cancer has slowly taken away my Mom and her memory. Many friends and colleagues have written to offer me solace and encouragement. They have shared stories of their own last days with a loved one. A teaching colleague told me of stolen moments with his own mom and encouraged me to take this opportunity to get to know my mom "anew." I can't. I waited too long.

Don't get me wrong. I still see "Mom" in bits and pieces. She sleeps a lot nowadays. Sometimes for hours interrupted by brief conversations or bathroom breaks. And then she sleeps again for hours. Some days I have time alone with her when she wakes up, and we have snippets of conversations where she talks coherently and as "Mom."

Now that my mom's cancer is Cancer, I realize that I miss all of those elements of her personality that used to drive me crazy.

Who knew that the last time my mom was my "Mom" would happen on a Wednesday? And that we'd have tacos?

"At Least You Didn't Tell Me To Get A Mac Like That Other One"

The routine has become so engrained that it almost sounds like the Abbott and Costello "Who's On First Routine." My mom calls up and has an issue with her computer. She carefully explains it, and I, ever the "funny" kid, tell my mom, "Get a Mac." From "Blue Screens of Death" to connectivity issues to printing problems, my solution remains the same: "Get a Mac."

Now that my Mom's cancer is Cancer, I desperately want to help my mom. I have sat at her computer typing in words as she dictated them because she can no longer type actual words. I have charged her iPad. I have fixed her connectivity issues. I have put together a medication log so my dad can keep track of the myriad medications he and I have to administer throughout the day. Why?

Because my mom always tells me, "You're a good boy."

I guess I never really knew how much I wanted to hear those words. After all, for most of my life, my actions have seemed anything but that of a "good" boy. I think that from the time my sister Wendy, two years younger than I, came into this world I felt a sense of jealousy about having to share my parents with these "interlopers." At a young age, I threw my younger brother, Chris, through the living room window while "horsing around." Another time, I put him in the clothes dryer and turned it on.

I always let my siblings take the short-term blame for my misdeeds. If I managed to fool my mom, it was short-lived, and often my punishment far worse than if I had just fessed up from the start. What did I care? I was young, invincible, and didn't need my parents' approval. More often than not, my mom met my actions with, "You're a bad boy, Jeff."

Fast-forward to today. As a parent, I know what it means to have children. I also know what it means to have children who misbehave at times. Now that my Mom's cancer is Cancer there is nothing I wouldn't do to please her or earn her approval.

When my mom first started to get really sick, she ended up in the hospital, fighting an unseen demon that eventually surfaced as pneumonia. Mom suffered through terrible back pain that did not let her even lie in bed. It turns out that the pneumonia may have caused her to fracture a vertebrae in her back. She spent almost a week in the hospital either sitting on the edge of the hospital bed or propped in a terribly uncomfortable recliner.

During one of his visits to the hospital, my brother, Chris, sat with my mom on the edge of her bed, earning him a "You're a good boy, Christopher" from my mom. Chris beamed for the whole room to see - once again he snuck in at just the right moment and did the "right" thing at the right time. I can tell you I did not like it one bit. I spent nights sleeping on an uncomfortable couch or in a plastic room chair, helping my mom go to the bathroom or helping her to stand because she could not get comfortable. He would swoop in for a few minutes and immediately earn a, "You're a good boy, Chris."

During the past seven weeks on Family Medical Leave, I have tended to every one of my Mom's needs. I have helped my mom make her own funeral arrangements. I have slept with a phone extension next to my head so she could call me at any time to help her get to the bathroom. I have helped her stand only to help her immediately sit down because she cannot get comfortable. I have untangled her oxygen tube, administered her medicine, and helped her adjust her hat to cover her hairless head. I have done this because now that my mom's cancer is Cancer, she needs me to help her.

If I want to remain truthful, though, part of the reason I help in all of those different ways is that my mom has started to say "You're a good boy" after I help ease her suffering in some way. For some reason, I need to hear those words right now.

About a week ago, my mom had difficulty when she wanted to check her email. She had her Microsoft Outlook set up with a custom view that let her look at her emails in a calendar view. At some point in the last few weeks, she must have deleted that view and couldn't find it any more. She asked me if I could fix the problem, so set about recreating that calendar view. Since I use a Mac, and not a PC, I needed to use Google to find the answers.

My mom checked in with me periodically, thanking me and calling me a "good boy." I relished the moment every time she said that to me. It took longer than expected, partly because every time she came in she called me a "good boy" (why would I want that to end?), but I finally found the answer I needed. Mom couldn't wait for me to fix it, so she again popped her head in the room and asked if I had fixed the problem. I told her I hadn't fixed it yet, but I though I found the answer and would soon have it fixed.

As she left the room she reassured me saying, "I know you will. Not like that other one. He would just tell me to get a Mac."

No Child Should Have To Bury Their Parent Too Young

Done under different circumstances, this might have felt like an honor. Instead, helping my Mom and Dad pick out their burial crypt and my Mom's casket, provided yet another searing reminder that my Mom's cancer is Cancer.

In a powerful cinematic moment from The Lord of the Rings: The Two Towers, King Theoden tells Gandalf that "No parent should have to bury their child." Prior to that, he laments that with his son's death "the young perish, and the old linger." He cannot believe "That I should live to see the last days of my house." I know that in the "natural order" and "circle of life" parents die and their children mourn them, but my Mom is only 66 years old. I personally lament that I, too soon, have to see the last days of my Mom. I want the "old" to linger in this case.

This past week I helped my mom and dad pick out their burial crypt and my mom's casket. I remember Mom talking about how difficult it was for her to help her mom pick out her casket and make arrangements for her death so many years ago, and until one has to go through this experience they can never know the sheer agony it brings.

My parents assigned me the "job" of recorder for the meeting with the funeral home. That meant I had to pay close attention as the "counselor?" asked for my Mom's vital statistics. As Janelle worked her way through the form, everything seemed natural until she asked for my parents wedding date. My Dad fought back tears as he struggled to tell them, "April 15, 1965." That triggered tears from my sister, Wendy, and my Mom. I helplessly grasped my Dad's arm, desperately trying to offer comfort.

The next "chink in the armor" came when she asked about their wedding rings. I could hear, see, and feel the raw emotion as they decided they wanted to have her wear her wedding rings in the casket and then divide them amongst their four children after burying Mom. I'm losing my Mom, but my Dad is losing his life's partner, the girl he has known and loved since high school.  I don't know why, but discussion of the rings made my Mom's inevitable passing seem more real to me. I dutifully noted that Dad will decide who will receive which wedding ring.

At this point, we made our way back to the casket "show room." My Mom vividly remembered the pain she felt as her own mother "skipped" through that same showroom, squealing with glee at the feel of certain fabrics or the shine on a casket. My Mom did not skip through the coffins, as her mother did. Instead, I dutifully bushed her oxygen tank along as my Dad reluctantly pushed her through the aisle in her wheelchair. Mom what ask, "Art, what do you think of that one" or "Jeff, do you like how that casket looks?" I couldn't look directly at any of the caskets - I have always had difficulty at funerals - they served as a reminder all too real that my Mom would come to rest in one of those pretty boxes.

We turned a corner, and that's when my Mom saw the casket she wanted. It's called the "Ambrosia Opal" casket. Made of 18 gauge steel and "resistant." It has pink fabric and lace with a giant rose over the area covering the heart on the inside, and the handles have roses on them, too. My sister pointed out that the casket was a pink color, her favorite. My Mom's favorite color was pink? How could I reach 46 years of age and not know that? The color and the casket made my Mom happy, and those same features filled the rest of us with an almost unbearable sadness. Our small funeral procession made its way back to the counseling room to finalize details.

Most of the remaining minutes flew by in a blur, but I did record important final decisions:

Programs:
Red roses with greens on cover
Irish Burial Quote: "May the road......."

Thank You cards:
Pink Roses With Cardinal (Thanks family)

Services:
Day 1: Visitation, service, luncheon
Day 2: Meet at the cemetery

Food from Sendiks:
Menu
Cocktail Sandwiches: Turkey, Beef, Ham
German Potato Salad: warm
Cheese and sausage tray
Relish tray

I dutifully recorded all of my parents decisions. Occasionally, though, my Mom would stop and ask, "What do you kids think? I won't be here, so this is really for you." For the first time in my life I answered, "Whatever you want, Mom" and meant it.

When deliberating details of the meal, the counselor asked what kind of potato salad we wanted. Mom immediately shouted, "German!" When Janelle asked if we wanted it warm or cold, my Mom said "Warm. I like my potato salad warmed." It seemed so silly to me at the time, but as you see above, the German potato salad will come "warmed." My mom left all of these other decisions up to us, but she wanted warm potato salad. And that's when it hit me. Almost as cliche, we like to say that we have funerals for survivors. My Mom's desire to have warm German potato salad tells me that funerals are also for the deceased.

[I know this post is running long. Some of you may wish to leave at this point, either because my post has run long or because you do not like reading about death. I understand.]

My Mom cannot get around much as the life drains from her body. For that reason, we left the funeral home and headed directly to the Washington County Memorial Park to select a burial crypt for both my parents. My Dad has soldiered on admirably through my Mom's slow death, but this has taken a horrible toll on him. He looks gaunt, he looks, tired, and he looks so hopelessly sad. Selecting a crypt for the two of them proved more difficult than I thought because choosing this tandem crypt also signaled the eventual death of my Dad.

One at the cemetery, my Mom had but one requirement: the crypt needed to be close enough to ground level that we could all "touch" her when we visited. After a brief search we found one that suited mom. On the lowest level and third in from the end, so she would always have others on either side to keep her "warm."

They say that the only sure things in life are death and taxes. I disagree. Right along with death, we should consider funeral expenses. After one dies, somebody has one final opportunity to make money off of someone. One could not call my Mom's casket "ostentatious" -it's not a pine box, but it's also not a $10,000 solid cherry casket with gold inlays, either - yet it still cost $2900.00. Death certificates run $47.00. Obituaries in the local paper and the Milwaukee Journal will cost another $299.00. In the end, it will cost about $13,000 to bury my Mom [funeral home and burial crypt combined]. Please, do not take these comments as an indictment of the funeral industry - I do not intend them to sound that way.

I cannot explain how much I squirmed and agonized as Janelle totaled up the costs. I could see my Mom start to consider where she could cut corners so as to not leave a financial burden for My Dad. She utterly panicked when Janelle announced a final price of $8048. "Do you have a payment plan?" she asked. Janelle told her that they did not and that the entire amount needed to go into a trust until she died. At this, my Mom, this strong, proud woman frantically begged, "I don't have this amount right now. Not today. What do I do?" Janelle reassured her that she didn't need the money right then that day. That they could come back when she had the money. My Mom has slowed a lot in recent weeks. She cannot always remember dates or places. She does know, painfully so, that it will not be long before she shuffles off her mortal coil. She knows the end will come soon, and she knows she did not start planning soon enough. We will manage to give my Mom the burial she wants. I know my siblings and I will figure out a way to make it happen. I just cannot get the image out of my mind of my Mom trying to figure out how to "discount" her funeral.

Janelle guided us through this agonizing process with deftness, trying her best to acknowledge our loss and mitigate the pain. At one point she even told us, "I can see the love at this table. The difficult funerals happen with dysfunctional families who fight each other over every little detail. Martha, clearly you are loved and have raised a loving family." My Mom liked hearing that, and it served as an outside validation of what she already knew - she was a good Mom and had left her mark on the world. My mom answered Janelle with, "Thank you. We tried."

Not only did they try, but my parents also succeeded. Janelle told us sad stories of people who get buried with nobody left to mourn them. My Mom will have plenty of mourners, but I am not yet ready. We did not have enough time together.

Now that my Mom's cancer is Cancer, I believe more than ever that "No child should have to bury a parent too soon."

Life's Golf Balls...Why FML Matters

I've thought a lot about yesterday's post. Someone who didn't know me might think I don't like my students or that I resent them. I don't. I neither dislike nor resent my students. I just have such an overwhelming feeling of guilt right now because of all the time I spend each day focusing on "pebbles" and "sand."

Yesterday, I received approval to take an additional three weeks of Family Medical Leave to help my Mom and Dad in whatever way they need right now. This may not seem all that groundbreaking, but for me this represents a sea-change.

You see, my wife and I had both of our daughters before I finished school. That meant I did not get to use FML after their birth to help my wife and provide care for my daughters.

For years, I would watch other, younger teachers take off six weeks of work starting with the birth of a child. I mocked them. I ridiculed them. I accused them of taking a long vacation while the rest of us had to work. I saved special derision for those who managed to finagle a birth to land right after Christmas break ended. That meant they not only got Christmas, but they also did not have to endure the endless stretch from January until Spring Break. All of these horrible thoughts happened only in my head, but I thought them.

How easily we can fall into the trap of not trying to understand the individual decisions that lead people to take FML. As a jaded "veteran" parent, I had forgotten how terrifying it feels when the hospital actually allows that tiny baby to leave the hospital with Mom and Dad. Thinking back now, I remember telling my wife, "Don't they know that we do not know what we are doing?!?" Apparently, they did, because they let me wheel my wife through the doors, baby carrier in tow, and venture out into our new life together. Years later I know that, for the most part, babies won't break. But in those first weeks after childbirth, how overwhelming can it feel as you and your spouse "figure it out" together?

So, here's my official apology:

To Tim, Pauls, Brad, Travis, Chris, John, Andy, Brian, and so many others:

I'm so sorry for judging you without thinking about your individual situations and appreciating the circumstances that led you to take FML. I know that you didn't take off to fish, hunt, golf, backpack, travel, or "veg."

Deep down, I knew this then, but more than likely jealousy at my own bad timing led me to hold these men in such low regard. Today, I understand this more than ever because I can imagine the comments people make about my absence in the staff lounge, in the classroom, or in the parking lot.

Now that my Mom's cancer is Cancer, I have taken FML to help care for my Mom. Back in October, I missed a week of work after my Mom fell ill after learning that doctors could not treat her Cancer anymore. I returned for a single day, and some students and most staff empathized with my situation.

Some students, though, approached me and asked me how I enjoyed my week off. I remember feeling so angry at them for that. After the week I had experienced, how dare they think I took a week "off?" Looking back with some fresh perspective, how will some 17 and 18-year-old kids respond to a situation like that? Do all students even have the capacity to empathize or sympathize? Maybe some of them felt I had managed to get a week's vacation in the middle of the semester. The point is, just like I didn't understand my younger colleagues earlier in my career, some of my students could not understand my situation.

That Monday night I received word that doctors had admitted my Mom to the hospital, so I rushed down to see her. When my Dad and younger sister told me that the doctors felt she would die without immediate hospitalization, I just fell apart. I didn't wail or cry - I just ceased to function. I could only "feel" fear that my Mom might die that night. I needed more time. I needed to apologize for my pettiness at some perceived slight or injustice. I needed to squeeze in all of the missed visits (intended and unintended) into that night. Here's a secret: when you know your Mom could die right then, nothing else matters. Not work. Not bills. Not toys. Not even yourself.

I missed two more days of work when my principal, Dr Ann Schultz, talked to me on the phone and snapped me out of my funk. She didn't give me a long lecture. She said, "Jeff, have you considered taking FML?"

Then I balked, trying to tell Ann that I needed to be at work for my students.

She stopped me cold when she said, "Jeff, you only have one Mom. You only have one chance to be there for her like this."

Again, I paused. Ann's next words sliced through me like a razor: "I know what I would do if it were my Mom."

That's when it hit me. THIS is why advocates pushed so hard to get the Family Medical Leave Act passed. So people like me wouldn't have to worry and think about their job, about the "pebbles" in their life. Instead, they could focus on the "golf balls," especially on those occasions where nothing else matters.

Now that my Mom's cancer is Cancer, I understand why we have to put the golf balls into the jar first. If only I had figured that out earlier. Because now that my Mom's cancer is Cancer, I have so much to do but so little time.

Spending more time on other people's kids...than on my own children

Mom's fight against Cancer has caused me to reflect on the approach I have taken to balance my working life with my personal life. In a nutshell? I have failed my family. When I think of how many "firsts" I missed because I put other people's children before my own, I experience much more than a mere "twinge" of regret.

For the first five years of my teaching career, I also served as assistant forensic's coach for a legendary teacher. He had championship teams because he dedicated his life and time to kids - and he expected the same amount of time from his assistant coaches. At the end of five years, I had helped coach state champions and added to the sterling reputation of my school's forensics team. I even have a "replica" of the state champions plaque from my final year as a coach hanging in my classroom.

What did my two daughters and my wife and my own parents get from this effort? Dad absent from dinner so we could have extended rehearsals in preparation for competitions. Dad absent from sledding so we could have "January Thaw" and prep for the upcoming season. Dad absent from recitals so he could travel to all-day forensics tournaments in in Algoma, Ripon, Stevens Point, and Winneconne. Dad absent from a concert so he could attend the end-of-season forensic's banquet. Son absent from a weekend Badger game or fishing trip so he could coach other people's children to victory.

I love teaching. In fact, I tell friends, family, and students that I do not have a "job" because I love teaching so much. As I reflect on all of the opportunities that I passed up to spend time with my own family, whether my Mom and Dad or my own children, I feel so guilty about the amount of time I have committed to other people's children at the expense of my own family.

I read a "story" recently that someone had shared through Facebook. For those of you without an account, here is that story about a lecture about life given by a philosophy professor. For much of 18 years, I have focused almost exclusively on the "pebbles" and the "sand" of life. I always thought there would be time for the "golf balls" of life, but like too many other people, I put the pebbles and sand in my mayonnaise jar, leaving not enough room for the important stuff: family, health, friends, and a feeling of well-being.

Balance. Remember that word.

Now that my Mom's cancer is Cancer, I realize, too late, that "If everything else was lost and only they remained, [my] life would still be full." I cannot get back missed time with my Mom and my family - make sure you don't miss that time in the first place.

My Mom's cancer is Cancer...

"Cancer sucks!" What a great tag line or slogan for organizations trying to raise money for cancer research. On October 24, 2012, I finally understood the real meaning of "Cancer sucks."

Cancer sucks because as I drove along Wisconsin Highway 23 on my way to La Crosse for a graduate class, I called home to check in with my Mom like I always do when driving cross-state. My Mom had had a PET scan earlier in the week to verify the success of her recently-completed chemotherapy. Normally, my Dad calls right away with the results, but he didn't call, so I thought I could talk to my Mom and get the results at the same time. When he answered, I immediately heard the catch in his voice.

Cancer sucks because before I could even ask any questions, Dad handed the phone to my mom who, using all of her training as a cancer registrar, coldly and clinically explained to me that even though she had undergone chemotherapy for four months, new cancer had appeared in her lung and near her belly button. Since the last round of chemotherapy had nearly killed her (possibly triggering a mid-summer stroke), the doctors could not treat her new cancer.

[When Mom first called in June, with news of her diagnosis, she made it seem like a small hurdle to "leap." I trusted her experience as a cancer registrar, so when she said she had a life expectancy of 6-12 months, and if the treatment went well she had a 20% chance of lasting five years, I know she knew the narrow odds. Six-to-twelve months. That's what Mom said. What did I hear? "Five years." My wife has always accused me of having selective hearing. Guilty. And in that moment, the only words I wanted to hear from her were "Five years."]

Cancer sucks because it leaves my mom crying on the phone begging my forgiveness because she had smoked all her life and couldn't stop, even when her own mother died of emphysema in 1999.

Cancer sucks because it drains the strength from my Dad, who works so hard every day to help my Mom function. He looks so haggard and worn right now.

Cancer sucks because it fills me with regret for all the opportunities I passed up to visit Mom and Dad, so I could instead grade student papers or attend education conferences, or worse - just sit at home and "recharge."

Cancer sucks because it reminds me (almost too late) that I am a man, a husband, a father...and a son. And, as a son, all I can do at this point is give my parents what I never could give them before - time.

I have never felt as exhausted, stressed out, or helpless as I have during these last few weeks of FMLA time. And now that Mom's cancer is Cancer, I finally know what matters in life. Tired is temporary.

Cancer sucks......because it sucks.