Fourteen years ago, I recall hearing the news about the World Trade Center and other attacks. I remember walking into religion class thinking about all those who had lost their loved ones.
Moments later I recalled that Dad took the PATH train that morning. And that he said goodbye to me, meaning he was later to work than usual. I had a few hours of fear and then learned he was ok, but it was nearly a week before I was able to lay eyes on him, or before he came home.
Dad would rarely talk about 9/11 and the effect it had on him. I know he took his employees to safety, kept distributing water, and that he slept under his desk that night three blocks away, again so he could work at a moment’s notice.
I also think of his recollection of walking out on the streets of lower Manhattan on September 12th and the sad, eerie vacancy that stretched before him.
Fourteen years later, we brought my Dad to his final resting place. I am grateful for every moment of time that I had with him, both before and after.
I wish I had better words on a momentous day, but I don’t. They will come, but for right now I will honor the memory of my Dad and all who have gone before him.
Let peace reign. For this, we need.
How do we be of the world, moved by what is occurring around us, but not paralyzed? I have no easy answers, but my last few months have been so impacted by my own family’s suffering I found myself shutting out the world.I could not take more sadness, grief or suffering. So I muted the noise of the world.
Mostly, I do not want to live in this disconnected way. However, I realize that in order to process my own pain, I needed to limit the amount of ‘extra’ burden I place on myself.
But today, as I sit at my beloved Dad’s beside, waiting for the few moments of wakefulness to provide him conversation or food, I read. I spend more time researching the current crisises that are leading so many to flee their homes. How do we help, in the immediate, but also in the longer term to prevent such atrocities as three year-old Aylan lying lifeless on a foreign shoreline?
In my own pain, one of the most striking emotions I have felt is gratitude. Not only for having my Dad these last decades years but also for all the blessings I have had because of him and my Mom throughout my life. I am deeply sad but also very grateful. And because of this gratitude, I care. I care because I see the luck I was born into- the freedoms I have, the material goods and supportive people in my life. I do not take this for granted.
In the midst of pain, I care. I care about what happens to others in this great big world of ours. This Earth is a shared space and I care.
And that caring should lead us to action. To welcome those into a new home, to implore our governments to call for a no-fly zone in Syria to also allow people back into their homeland, and provide any other means of support.
I miss my Dad. We would have talked about this criss, what history led to this moment, why we aren’t seeing change, and what we can do to help. We would have talked about our sadness and disappointment, our faith and how this makes us struggle.
All of us expect our parents to pass before us. I am not ready, but know I probably never would be. No parent should ever have outlive their child, nor have to risk such horrible circumstances to find a safer home for their families.
Let us be connected. Let us find empathy in our hearts during tragedy and find ways to act.
“I don’t know how to do this” has been my refrain for the past two weeks. I don’t know how to grieve the impending death of a parent, while we still loose the other.
Even writing about Dad’s new prognosis feels like a betrayal. I don’t know why. Sis and I have remained a strong force in recognizing how brutal this tumor is and how certain it was that it would return with vengeance (as per all medical advice). It is not as if me stating this is slaughtering the last vestiges of hope. But still, I feel something amiss.
And while this news is barely two weeks old, it feels as if that was a lifetime ago. Not because Dad has rapidly declined- he is only more tired thus far- but that the exhaustion of grief is incredible.
Each day is a difficult one. A struggle to face the day, to do the simple tasks: get out of bed, make meals, be happy for the sunshine, find time for self, breathe. They are filled with unknown territory to this young adult: find hospice care. keep up correspondence with all family members and parent’s friends, write an obituary.
I don’t know how to do this. Still.
I while I recognize that no one, ever, probably “knows” how to lose a parent, I am still adrift. I still grieve not one, but two loving parents while they are still in front of me. One whose time is closer than I ever imagined, and the other to whom we have been losing in pieces over the last five years. I don’t know how to do this. To loose one parent, while the other is still here yet evermore borrowed by Alzheimer’s.
One beautiful piece I stumbled on today was an article in the New York Times written by a grief counselor. I loved this sentiment:
I see a healing shift occur in people who feel that they have found a
way to remain close to someone they’ve lost. This seems to allow
people to accept their loss better, and find consolation in the idea
that they are still connected.
I don’t know how to do this. But I want to try.
May 20, 2015
8:39 PM Wearing clothing too light for this cool night, slipping on flip flops, I walk out the door.
One neighbor is mowing his lawn, another enjoying a backyard fire. A third, me, nearly walks into a sprinkler, lost in her own thoughts.
I am walking to escape. To let the steam of emotion out.
I have done it. I have made it to the hurdle
When Dad was diagnosed on that stifling day 15 months ago, I just hoped he could make it to this day. Sure, of me, for my Sis, for my Mom, and for him,
And in some strange way, maybe I thought 15 months would prepare me. We weren’t given a solid understanding of time, but we’re told it would be somewhat quick. Consciously I know I will never be ready to say goodbye to my parents, but graduation was one ending in sight. In hope, I just crossed my fingers that this other wouldn’t happen before commencement.
I realize I’m not even thinking, I’m just being. Walking, silently hoping to process out the last few days. But I can’t certain things can’t be rushed.
I hadn’t been back. I hadn’t been to the concrete court since probably 4-5 months before your hand oddly stopped working as it should. You’d be holding a glass, let alone a racket, and it would just drop.
But now it is 16 months “after. Post- treatment, post-surgeries, post living at home, post-walking. And I return.
Today I am back at our court. The place I first learned where to play. Where I took lessons, then walked over to the town pool. Where I could see my grammar school and church where I had all my sacraments. The place where in the last few years, we’d go to escape and hit balls for an hour or so.
One of my best memories of the adult Dad-Daughter relationship was our match after Christmas. You WHOOPED my ass! Since you were healthy and playing two times a week (God, that kills me to think how healthy you were pre-tumor), you could run circles around me. I loved that you beat me without a doubt, and bragged to my friends how my 60-something year old Dad just creamed me in tennis…because he is that good.
You must have been good, because it is how you met Mom. A story you were getting ready to share the other day when I was leaving the nursing home. The afternoon activity was sharing the “how you met and fell in love” tales of everyone’s lives.
So I find myself at the wall. The daunting, towering slab with the sun playing hide and go seek, adding visual tension. Every bounce of the ball, emotion rises up in me. Every swing of my racket lands your voice in my head “Great shot, Kate!” or “Again- but remember to follow through”.
I miss you so much and yet I am lucky to have you present. I know that. But in this moment, I just want you here. Coaching me, while also being my equal. I miss learning from you and finding moments to carve out slices of life that we can both enjoy; separate from illness, responsibility, or caretaking.
My serves were amazing. Honestly, I don’t think my starts have ever been as consistent. Each round, I try to focus on this hit. This return. Not the emotion, not the anguish of not having my favorite tennis partner here today.
Your words follow my moves and I realize this is truly what I miss. Another avenue to you that just isn’t as accessible right now.
I barely make it to my car before the grief takes over. But I’m proud. Sweaty and proud- because I found more depths of strength and lost pieces of you.
I wish that I saved every card. Birthdays, Christmas, Valentine’s Day, St. Patricks Day, Easter and on and on. I wish I could keep every piece penned, as their handwriting is as unique as they are.
I wish I could bottle their laughter, their love and quips. I wish I had recorded these precious moments of day to day living.
I wish I had each memory of every hug and kiss, every gleam in their eyes, every moment that I made them proud.
But I don’t.
What I do have is one vibrant, perpetual reel of our lives. It includes pivotal celebrations where photos were taken in front of ‘my’ magnolia tree and random snipets that occurred at our kitchen table. Events big and small circle round this carousel, loading moments into memory and releasing memories into this moment.
While it is not every greeting card or comical punch line, it is their love present all the same. And with that, what more could I wish for?
Squalls of impending change. That is the moment I am in!
Schools is ending, a major shift in the way I spend my time. While I have yet to lock in my future plans, I know what I don’t want. I won’t fail to follow my own.
A good friend today asked me to join in on her plans. It was to move away, start fresh in a new city. My reaction was expected “You know that I can’t”, referring to my parents. She offered a compromise, and I said no.
But what was this really? The truth- this wasn’t my dream.
While I may not have been able to articulate this as clearly in the past, I proudly know that I have never done this- made a change that wasn’t my own. I didn’t follow a breaking relationship 3000 miles away, I didn’t take a ‘good enough’ job at an organization I love. I didn’t choose my place to study abroad based on friends’ choices.
And the same is true today. I want to live out my dream. However unplanned, frightening, and winding it may be. And while this might take daily courage and weekly doses of fortitude, it’s the only way I want to go.
My way. However it goes.
It hits the floor, rolls under the mahogany furniture, forgotten forever. Or at least that is how I envisioned this possibility.
Instead I walk up the stairs, find Mom in the sunroom. She has a new cozy pillow and is smiling widely. She recognizes me. Or so I hope.
We exchange our hugs and kisses, our hi’s and how are you’s, and spend a moment, each with big smiles. At one point, I glance down and see a passing of silver and then gone again.
I stand up and over Mom, trying to cradle her hand, and realize she has taken off her wedding ring, and has it barely hanging on her pointer finger.
“Oh gosh how did this happen!” I say and we both giggle. As I slip it on her ring finger again, I realize how easily it now moves.
I have never seen her without it. This band is always on her hand and in her heart.
Later after sister arrives, we decide to take it with us and not run the risk of losing it forever. Sis says I can take it- I do, but tell her soon we will put it away with all the other items. It doesn’t need to be mine nor do we need to decide now. But for the moment, it goes on my right hand for safekeeping.
Hours later, it still remains on my finger. I don’t want to take it off. It feels foreign, as it obviously hasn’t earned a common and snug feeling. And yet it does not feel strange, it feels comforting. I am wearing it to protect it, but it adds an element of security for me.
I don’t know how to go about this. I don’t know how to linger as we let go. I don’t know how to lose my parents, when the outside tells me to focus on creating this role for my own.
Of course, this is not the ring I thought I would cling to at this moment in my life. It sits on the opposite hand, better rooted from falling away. It represents the past, a beautiful one. While it’s shape denotes no ending, it’s presence is an ominous sign of slipping away.
And yet, it is one that surprised me. One that fills my heart with joy and sadness in separate spaces. On my hand in this moment, it breathes new life.
These moments remind me of the trickiness of this disease. There is no easy pattern to follow, no foolproof guide to tell you what to expect. Maybe she will always remember us, maybe she won’t. Maybe she will laugh and giggle until her final days, or maybe she will change so radically in front of us. While Alzheimer’s has expedited her life, the current reality is painstaking in duration.
A few months ago, I came across an ABC News Report on Alzheimer’s. The son of a an Alz patient and a news anchor both underwent a twelve minute stimulation of what it can be like for a dementia patient.
For me, just watching this let me understand some of my Mom’s patterns a bit better. For someone who is constantly surrounded by the disease, reading and educating myself about it, I still learned from this exercise.
So in the heyday of “Still Alice”, bringing great awareness to the silver screen, take a few moments to gain another perspective.