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."