Tuesday, June 19, 2012

Tuesday, June 19, 2012 -- Mattie died 145 weeks ago today.

Tonight's picture was taken in May of 2006, as we were leaving Sesame Street Place. As I mentioned in last night's blog posting, we bought Mattie one Elmo balloon, and then a character in the park gave him another one for free. Needless to say Mattie was thrilled, since he was a BIG ELMO fan! Mattie had a full day at the park, and by the time we were getting ready to leave, Mattie needed to be carried out.


Quote of the day: Mountains cannot be surmounted except by winding paths. ~ Johann Wolfgang Von Goethe


I received the article below, entitled, The gentle art of condolences, from my friend Charlie today. The article was written by a professional who typically writes about humor, arts, and entertainment. However, this article is more personal, since it is her reflections on the loss of her husband. What particularly caught my attention is the list of phrases people said to her which need to be re-thought and phrases she found that were helpful. These are things I feel so many of us hear regardless of the type of loss. Needless to say, I appreciate these types of articles and insights from those who are grieving, because what it indicates to me is that we, as a society are not well versed in managing and coping with grief, and the ultimate truth about grief is it remains with you forever (it may change shape and form, but there is no stop date, in which you will wake up one morning and feel fine about the loss of a spouse, parent, family member, close friend, and child). For those of you who would like to read the article it is below. Otherwise, my blog continues after the article.

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The Gentle Art of Condolences by Marnie Winston-Macauley

Jewlarious writer Marnie Macauley grieves for the loss of her beloved husband, and thanks those who have comforted her.

Editor’s note: Jewlarious is of course aish.com’s Jewish humor, arts and entertainment section, and while this article fits into none of those categories, it is written by our dear friend and writer Marnie Macauley about the loss of her husband. Because she has such a strong following on our site, we felt it important to share this piece with you.

As some of you know, my husband of 33 years, Ian T. Macauley died in my arms on June 3, after suffering a stroke ten months ago. Judaism is exceptionally wise in the handling of grief. Our religion understands with rachmones (mercy), the need for support, for people, for mourning. And, for God. Sadly we knew few people in this crazy town of Las Vegas, so our Simon and I are pretty much on our own. I miss the platters (especially the lox – salty). I miss the company, the diversion.

I miss Ian. He’d be so ticked off that he won’t be able to follow the presidential election, taking notes on reportorial errors, and screaming at the T.V. (he was a lifelong old guard news editor). So, in grief, we Jews do special things, but turn as well to what we’ve always done. I’m a writer. I write. I’m a clinician. I heal – well others.

As a therapist, I’ve always felt that in addition to our spiritual and religious beliefs, there are human issues. And that, despite all the psychobabble, we grieve differently, in our own way, in our own time. And that must be understood, and respected. For example … while at vigil by his side, I took a few breaks outdoors, needing to feel the sun on my face … the promise of a new day. I knew I had entered the hospital as a wife … and would be leaving as a widow.

Most loathe the word “widow.” I am not a spider.

I’ve spoken to many friends whose mates have died, and it seems we feel the same way. Most loathe the word. “Widow.” Widows are spiders, black widows, Queen Victoria in perpetual black, shrouded mourning. A dear cousin told me simply: “We’re not widows. We are/were wives. And that shall always be – us.” This helped.

So I write … I can’t yet write of the 10 months of horror, politics, lousy medicine, and lost/afraid friends, but also of new remarkable ones. But I can talk of what helps and what doesn’t – at least to most of us, and especially this quirky “widow.” All texts, emails, and letters have been so welcome. All were meant with good intent, but some were more helpful … and others less so.

Phrases, said with love – That Should Probably be Re-thought:

• “If only he’d exercised, ate healthy, and taken better care of himself.” As a clinician, I recognize the anger, frustration, and self-fear in these words, and forgive. As a “widow” – shut up. “What ifs” are meant to move the living forward, not to guilt the grieving over what can’t be and won’t be.
• “Why didn’t you: a) give him 10,000 units of Vitamin C; b) treat him with canned asparagus; c) go to the alternative doctor I recommended four months ago?” What can you say? “Because I’m a lousy wife who denied him ‘cures’-by-idiots?”
• “We saw the signs. If he’d come to us two weeks earlier, we could have done something.” And you kept quiet? Write a paper for the AMA on clues, and how not to alert the spouse of the sick and dying.
• “You knew it was coming. You were at least prepared.” Not really. I kept the light on near the phone, killing myself to grab it. Even in the inevitable, an irrational ray of hope remains within us.
• You made it through the horror, now you’re free … run like the wind.” Or, from the less poetic, “Get right up on that horse again.” Walking, running, horses? What am I a jockey? We’re working on breathing from one moment to the next, not Nikes and saddles.
• “At least he’s no longer suffering and at peace in a better place.” Is he? I pray so. But a better place to us was with us. Life was always “I” and “M” and “S.” Now there’s no “I” – and no scorecard for death of a partner, a father, a cheerleader of 33 years. We have to learn how to write Chapter Two.

Phrases That Help:

• “As said above, “Your not a widow … you are, and always will be a wife.”
• “He leaves behind a powerful legacy and made a difference.”
• “I was privileged to know and work with him.”
• “Take each day at a time — slowly.” (From a widow.)
• “What an amazing love you shared.”
• “The older we get the more we realize we don't know. We're grateful every day for what we have and keep putting one foot in front of the other. Hold your son, Simon, close and hold yourself as well. As you start the next chapter of your life, deep breaths, one foot in front of the next.” A realistic wish, with accounting, and hope.
• And finally … “How can I/we help?”

Yes, we all grieve uniquely. For this “widow,” the most helpful words aren’t those describing what could’ve, should’ve, might’ve been, but what was and will always be. As a writer and editor, my husband would agree. I don’t make “saints” of we humans – even after death. No. I reach for the best of truth, balance, and peace among the living; those who knew and loved him; those whose lives he informed, and thereby enriched. And the most helpful messages are those that simply acknowledge these thoughts, and allow the living, with apologies to Dylan Thomas, “to go gently into that next good day.”

Dedicated to the ever-lasting memory of my husband, Ian T. Macauley, father, grandfather, and brilliant journalist.

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I decided to walk this morning around my neighborhood. I eventually made my way through the grounds of the George Washington University. I spent many days traversing that campus while getting my doctorate, and even when Mattie was a baby, we would stroll through the campus, and examine their plantings and fountains. I can't look at the fountain on campus without thinking of Mattie. I sat by that fountain today, got some fresh air, and read a book for about an hour. When I decided to get up and leave, right by my foot was a worn out penny. It is possible that others who passed this penny missed it because it was so worn down, but it caught my attention immediately, and I naturally thought of Mattie. To me this was a sign that Mattie was with me today on my journey on campus. As my faithful readers know, Mattie had a thing about pennies, because my parents introduced him to their made up character, the penny fairy. So now, when we spot pennies on the street, we can't help but feel this is a Mattie symbol and connection. Naturally I always pick up the pennies I see, because this was something Mattie would have done.

My friend Junko, works near where I live, so today we met for lunch. We had a lot to catch up on and share. Junko is in charge of coordinating our Foundation Walk volunteers, which is no easy undertaking, especially as the number of activities increase at the event. Thanks to Junko, who organized all our name tags and badges and handed them over to me today, this portion of our Walk has now been closed out. Believe it or not, I am still completing Walk paper work, and based on the fact that I have been ill for a while, I am behind on these things. But slowly yet surely they too will get completed.

Tonight, I would like to share some pictures I took of a very special component of our Walk. This year's Walk theme was love of family. At our Walk ceremony we had the Eichner family speak about their cancer journey, which I will highlight soon. However, I felt it was important that attendees understood what they were walking for and why they were there. Certainly they come to our event to have a wonderful day full of activities, but the activities serve a purpose. The purpose is to bring awareness to the daily battles children and their families fight each day, as they live with childhood cancer. Childhood cancer is as much a physical illness as it is a psychological one. The treatment is only a small component of the battle, but the ramifications of the treatment and the impact it and the disease have on one's life are real mental health concerns.

Thanks to Linda Kim, Mattie's childlife specialist, she helped me execute my plan for this year's track posters. My goal was to enable 12 families living with childhood cancer to illustrate for us through a poster board display what love of family meant for them as they battle cancer and survivorship. Tomorrow night I will show you how these posters were actually displayed at the event, but tonight, I want you to see the beautiful content, thought, and feelings expressed through these works of art. I think one thing is quite clear from these posters and that is childhood cancer is an equal opportunity disease. It affects boys and girls, all cultures and races, and love of family is crucial for survival. It is my hope that you enjoy these posters and appreciate the care, thought, and love that went into them.

Imagine walking on a track, and as you walk, this is the first poster you see.

This poster was created by the Park Family. The way Jaycee describes herself is captivating. I particularly relate to her description of being made of recycled parts, but in reality as you can see, this is only a small part of who she is because her spirit comes shining through in this poem.

Jean Baptiste Family -- I would like to share the incredibly moving poem with you that was written by Marie (the poem is shown in the left hand lower corner of the poster). Marie puts things into perspective for her reader, because despite all she is going through, she considers herself lucky. Seems to me that every teenager and child needs to read Marie's poem. The poem is entitled, Luck (Nia).... I'm lucky to have family to go through this with. I get letters and cards and calls. I'm lucky to have my mom. Even when she has a cold. Or weather's bad. She comes here to comfort me. Her car is sometimes messed up. In bad weather, it moves a little too much. I tell her what's going on. She tells me jokes. Sometimes she does her homework. She'll get me frosted flakes, pizza. I'm lucky to have my sister in New York. She comes down and stays with me in the hospital when my mom can't. We hang out. She gives me advice about being patient, thinking positive. I'm lucky to have my grandma. She's moving here at Thanksgiving and bringing my cat Oreo. I'm lucky to be able to see my dad in Haiti. Two months after the earthquake I actually met my father for the first time. He was okay and living good. I saw a lot of dust, people on the street begging for food. His house is on a hill and I could see the camp where most people were living. He took me on a road trip to the other side of Haiti. We stayed in a hotel, went to the beautiful beach, ate fish. He gave me his slippers to take home. He calls me. I am lucky.

Kilpatrick Family -- This painting was created by Morgan. When Mattie was battling cancer, so was Morgan. Morgan is now a leukemia survivor, but while she was battling cancer she was only a BABY. She is now a preschooler! This painting means a lot to us as does the fact that her family continues to remember Mattie!

Altayer Family -- Along with the beautiful family photos and hand prints you also see several Arabic words. Under each word is a translation. The words mean..................  Father, Love, Mother, Baby, Sister, and Family.

Kress Family -- Here you can see a hand drawn picture of Peter's family and then an actual photo.

Bostic Family -- I love this painting, and I assume the marker shapes within the painting represent each member of Kedar's family.

Sullivan Family -- On our various trips to the hospital this year, especially with the girl scout troop, we have had the opportunity to meet Destinee. She is a sweet little girl, full of life, but clearly like Mattie, spends a great deal of time in the hospital for treatment. Yet despite that, you can see her wonderful smile and the love she has for her family.

The Clayton Family -- This poster speaks out FUN to me. This family has fun together and this fun is captured in activities and symbols listed all over the poster.

Ramirez Family -- As Marisol indicates in her drawing, "family is home!" How beautifully stated!

Eichner Family -- This family attended our Walk and were our guest speakers. Danielle (a leukemia cancer survivor, with the red hat in the picture), her mom Marilyn, and brother Wade all addressed our attendees and expressed their insights about battling childhood cancer and the role of a family in this battle.

Abid Family -- Bridget is a Hotchkins Lymphoma survivor and battled and continues to battle cancer today! We met Bridget and her wonderful family when Mattie was undergoing treatment. Through our experiences we remain connected always. Bridget, as you can see, is VERY artistic. Like Mattie, she loves origami cranes and made several for this poster and glued them onto it. In addition to the pictures, there are wonderful hand written notes from family all over this poster to Bridget and each immediate family member signed the poster. Bridget and her family attended our Walk!

Johnson Family -- This last poster was created by our friend Toni, Brandon's (Mattie's big buddy), mom. As you can see there are TWO beautiful butterflies on this poster, both of which symbolize Mattie's connection to the Johnson Family. In addition, Toni attached a beautiful poem about family which I blew up below for you to read. Toni and her family have attended EVERY Walk of ours, even the Mattie March in 2009! We value their support and love.