Social Sympathy

The Greenville Journal wrote a couple of articles related to social media and the role it plays in helping families and communities grieve and support one another during difficult times. I am honored to have been interviewed about how our global village supported us through Mary Hazel and Russell’s illnesses and continues to support us now.

Sweet Goodbye

 

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He Was Home

 

rdh3The first time I met Russell, almost twenty years ago, he had just locked himself out of his house. And he was not happy about the situation. Over the course of the next two decades, he managed to lock himself out of the house just slightly more often than he misplaced his keys inside the house. Which was pretty often. It was an ongoing joke among our close friends. He received more than a few ridiculous hide-a-key tchotchkes for birthday presents. Our lawn, at times, resembled the Jockey Lot on a bustling Saturday afternoon, covered in gaudy decoys, like concrete frogs and Chia pets. (The only things missing were some boiled peanuts and funnel cake, both of which Russell was extremely fond.) Eventually, we just stopped locking the door. We joked we had nothing worth stealing anyway. The things that mattered most weren’t things, after all. Russell was happy knowing that he could always go home when he wanted to and there were no more obstacles preventing him from doing so.

Russell was always happy being home. He was comfortable in his chair, his spot on the couch, his place at the kitchen sink washing dishes and gazing out the window at the songbirds and daydreaming about his “stories”. He was comfortable with his thoughts. He was not afraid of the quiet. He was also, however, a great lover of people, of their energy and their unique ideas and perspectives. He loved to learn; I’ll never forget the day he first discovered this little website called Wikipedia. It took the place of his gold-leafed set of hardback encyclopedias that his mother reports he used to drag to the bathroom when he was potty training at the tender age of two. He was the epitome of a Renaissance Man; when he was in his twenties he rebuilt the engine to his 1967 baby blue Mustang (twice, actually) by reading the manual. He knew the etymology of every word he spoke and whether its root was Latin or Greek. And now, so do our children. He loved a good salon, explained helpfully by our friend, Wikipedia, as “a gathering of people under the roof of an inspiring host, held partly to amuse one another and partly to refine the taste and increase the knowledge of the participants through conversation. These gatherings often consciously followed Horace’s definition of the aims of poetry, ‘either to please or to educate’.” These were some of the values Russell held most dear – pleasing, educating, and just being at home in the company of like-minded souls.

Several years ago, Poppy wrote a poem at school about home that I’d like to share:

Where I’m From

by Poppy H. (age 7)

I am from a house that has a smooth front porch and scratchy carpet.

I am from a house that has lots of toys and cats.

And a dog.

I am from a noisy radio.

I always hear the news.

I am from Dad telling me stories every night.

We love all the stories.

I am from me playing the piano C to G over and over again.

I am from root beer and saucy pizza.

(It is so cheesy.)

I am from the smell of cat litter.

And also fresh crusty quiche and berries so juicy.

I am from warm hugs and kisses.

I am from Christmas,

Being the first one up and the last one asleep.

I am from cancer check-ups.

I am from laughing all the time.

I am from Slackajack and Butter – my favorite toys.

I am from love.

When Russell and I first met, we spent a lot of time adventuring, sometimes quite far away from home. Though he was born with a particularly rare and progressive congenital condition (affectionately known as Russell Hinson Bad Leg Disease), we enjoyed ten years (give or take) of some pretty amazing outings. We discovered the love of long-distance road biking together and looked forward to the Bakery Ride to Saluda every Sunday and the cross-state tour every spring. We participated in triathlon relays together, with our friend Vanessa, where Russell held down the bike leg like a pro. It was during a trip to a race in Maui when Russell proposed. We also enjoyed many a meandering hike, where I further learned of Russell’s curiosity about the natural world. He not only stopped to smell the roses, he stopped to watch skinks (which are not the same as lizards) scuttle up trees, he stopped to examine the mechanics of a solitary walking-stick bug, he stopped to look up leaves in his Field Guide to Trees and Shrubs so he could learn and memorize the scientific names of every tree in the southeastern woodlands, as well as the songbirds who lived there. (Cardinalis cardinalis is the only one I can actually remember off the top of my head.) During one particular favorite vacation to the Pacific Northwest, he lead the charge to the top of the Continental Divide, encouraging both me and my parents to stand atop a glacier field where only few others endured the journey to enjoy the view. We used to say about Russell that all who wander are not lost.

Even before Russell’s mobility became a challenge, he was a methodical and deliberate soul. His attention to detail was often at the expense of punctuality. He could easily spend two hours in the shower. He evened out the laces on his tied shoes so they were equal on both sides. He had the most impressively-groomed eyebrows in the house. He didn’t simply do things to do them. He took careful measure in the doing. One autumn day, I chided him for taking all afternoon to rake a small patch of leaves in the front yard. “Wouldn’t it be faster just to use a leaf blower?” I asked. He answered, “I wasn’t just raking leaves. I was working on my novel.”

My daughter said to me just the other day, “I sure am going to miss waiting for Dad.”

Unfortunately, the week our baby girl was born, Russell underwent a laminectomy (another word I learned from Russell) to remove a tumor in his spinal cord. This procedure bookmarked the point in time when the kids’ daddy developed his “boo-boo leg”, when he started walking with a distinguished cane, when he was no longer able to ride his bicycle or hike up mountains. This marked the time when Russell was home.

And Russell was home.

When the children came home from school, flinged their backpacks in the corner and threw off their shoes, they knew dad was home. When I took my shift carpooling neighborhood friends to and from (fill in the blank), I could drop off one of the possums and know that dad was home. While I enjoyed running most mornings, the kids were gently awakened by their dad because he was home.

Over the last few days, the kids and I have repeatedly noticed the echo of their father’s presence at home. Poppy observed, “I miss the way Daddy cleaned the bathroom sink after we brushed our teeth.” Mary Hazel remembered how he used to happily torture them with the exaggerated attack of “Monkey Paw and Raven Claw”, a tickling ritual that filled the family room with raucous laughter and loud squeals. Charlie wished yesterday that his father were here to watch Avatar with him on Saturday mornings because he was the only one who understood the epic battle between the Fire Nation and the Earth Benders at Ba Sing Se. Because Russell was home.

rdh1Russell was the sounds of home. The frequent tapping of the keyboard. The walker shuffling down the hall in the early pre-dawn hours because of stupid insomnia. The radio always being tuned to NPR even when nobody was in the room because the cats might get lonely. The sound of the Eastern towhees when he opened the windows on a spring day. “Drink your teeeaaaaa!” The microwave beeping periodically throughout the day as he heated up his tea, because it took him sometimes all day to fully enjoy one cup of the gentleman’s coffee. The lock on the door clicking not once, but always twice, at night when he put the house to sleep. The score to Fiddler on the Roof. Gillian Welch singing sad ol’ songs on his favorite Pandora station. The streaming water at the kitchen sink every time even one piece of silverware was left for longer than a minute. He was “Hey Baby and Hey Buddy” every time he greeted the twins. He was “Hey Lucy. How’s it going?” whenever the neighbor girl from across the street came over to play. He was “Sweet dreams. It’s time to close your eyes now,” when Mary Hazel pulled out just one more book to read before bed.

Russell was the smells of home. Dinner being warmed in the oven upon our return home from late soccer practices and chorus rehearsals. Fresh kitty litter in the laundry room. Dryer sheets. He was the smell of red wine and chocolate, and sometimes Southern Comfort. The fire log burning and crackling on the first chilly fall night. The smell of balsam and cedar and noble currant candles lit by his bedside. Deodorant soap and coconut shampoo.

Russell was the sights of home. He was standing at the front door on school day mornings waving goodbye to the children despite the difficulty he had getting there. Tidy piles of paperwork. A laptop that was never closed. An electric razor always plugged into the bathroom outlet because he shaved every day, even if he expected to see no one. Neat piles of laundry on the sofa, always a work in progress. His owl collection. His book collection. His birthday card collection, because he kept them all. He was consistently the last person the babies saw when they closed their eyes at night because he always promised to put up their rails and check on them “one more time”.

For the last couple of years, Russell was indeed home. And because of that, Russell was home.

We struggle to move one single thing that belonged to him because then it just wouldn’t be the same as it was when Russell was home. And, of course, how could it be? But aren’t we the lucky ones for the memories? The memories of a father who was always home, never away on business, never not having time for bedtime stories, never saying, “I’m too busy right now.” Aren’t we the lucky ones because he helped create a secure, loving, nest from which our fledglings can be brave and take flight, when the time comes. Aren’t we the lucky ones for knowing a man whose consistent, thoughtful, and kind ways are forever etched into the foundation of what we know as home? Poppy, Charlie, and Mary Hazel will always know what “home” feels like.

In large part, because Russell was home and, no matter what, he can never be locked out again.

rdh2

www.youcaring.com

 

 

Turning Two

Dear Sweet Mary Hazel,

I just scheduled your two-year-old well visit. As chance would have it, the appointment falls on the anniversary of the day we first learned of your cancer diagnosis. Almost to the hour. When I clicked on my Google calendar to record the appointment, I noticed that my hands were shaking a little bit and my heart rate thumped up a few beats. So many thoughts, so many feelings, so many memories. I consider June 29th to be one of those bookmark days in my life. One of those days that you can rattle off, without referencing a calendar, when life became different. The date is etched in my brain. I even notice the sequence “629” in license plates when I’m in traffic. It was a game changer, for sure. I can recall, with infinite detail, those seconds before, during, and after I got the news. I remember being incredulous, slowly walking backwards (stepping on toys in the pediatric waiting room), hyperventilating. With the diagnosis still ringing in my ears, my very first thoughts took me to a very dark place. Perhaps it was my own sense of self-preservation that catapulted me to the worst possible scenario. I experienced the worst sadness of my life within just a very few seconds. It was the loneliest, scariest, darkest place I’ve ever been. But once I was there, in that cave, my next thought was, “How do I get out of here?” My focus shifted. I looked at you, playing happily two feet away from me, and realized loving you with all my heart was what was going to bring me back to the surface for fresh air. Now, one year later, I feel such joy, such gratitude, when I think about June 29. This is the day you started to heal. This is the day I learned to love more deeply. This is the day by which all my other days can be measured. This is the day that taught me true humility.

You are going to be two tomorrow! All birthdays make me feel nostalgic, but this one is especially sweet. Let me tell you a little bit about this last year. Not all the cancer stuff. The other stuff. In no particular order…

Your siblings adore you. Poppy loves to be your mother and mentor. She is happiest when you ask her to paint your fingernails, play “Bunny Jengo”, and allow her to give you piggy back rides around the living room. Charlie would be a delightful playmate for any two year old, but you especially love to hang out with him. You tell each other nonsensical secrets, where you reply with a genuine, “Really?!” every single time. You chase each other under the covers and tickle fight until you are both exhausted. You like to “scare” him with your scary frog impersonation. “Grrrr…..grrrr!” You spend lots and lots of time with Charlie and Poppy. From what I observe, you have no idea that you are not a six year old, too. Maybe it’s all the time we spend on the playground after school with the other kindergarteners. Maybe it’s because you spend more time with your older sibs than you do your own peers. Whatever the reason, you simply crack me up and impress me at the same time. You climbed to the top of the play structure in Croft Park when you were 18 months old. You learned how to pump your legs and swing by yourself years before I expected. You are recognizing your letters, numbers, and shapes with regular ease. You can order my coffee for me when we pull up to the drive-thru at Starbucks. (“Grande coffee with milk and sugar…pleeeease!”) Just this week, you started sight-reading the word “coffee” on the side of the building. I am both proud and terribly embarrassed.

A happy memory this year is of you exploring Pawley’s Island for the first time. Hard to believe, but in October you weren’t even walking yet. Didn’t matter. You scooted on your bottom up and down the shoreline with infinite enthusiasm until the sun set and I had to carry you inside all brown and worn out. You helped DanDaddy build his ritual sand castles by collecting shells and splashing in the moat. You rivaled Charlie with your obsession of water and you spent hours shuffling beside him in the wet sand. It was a peaceful, restorative time for us all. We were all still glowing in the news that your cancer was gone.

You were a healthy, round pumpkin for Halloween. Your costume served as the perfect cushion for you as you learned to steady yourself in those early walking days.

You love to read. For as long as I can remember you have collected the M and the H magnets off the refrigerator (and Mrs. Barb’s desk at school) to spell your name. I have yet to convince you that you do not have to turn a book upside down whenever you encounter a W.

You say “dude” a lot. And “thumbs up”. The jackpot for me is when you combine them for an exuberant, “Thumbs up, dude!” with both of your thumbs pointing skyward.

When you walk in a room, you bounce when you stop, wave, and loudly inquire, “Watcha doing, guys?” 

You referred to yourself as “Mayche” for the first part of the year. Then you moved on to Miss Hazel before you mastered your whole name. Yeah, I miss that.

You personally found and invited Blackberry to come live with us this winter. She reminds me of you. Silly, self sufficient, and easy to please.

We still snuggle in the bed every single morning after Daddy’s alarm goes off but before it’s my turn to get in the shower. This is by far the most peaceful, warm, satisfying part of my day. I feel like a hibernating bear with my baby cub. When I eventually have to peel myself away to start the morning chores, you sometimes roll over in the place I left behind. The other day you sleepily thanked me for “making you a warm place”. I will always make you a warm place.

You love school. You adore your teachers. You idolize Mrs. Barb. We joke that you are the unofficial vice principal as you welcome your friends into the lobby every morning. I look forward to those ten minutes we spend reading books on your special bench before the clock strikes 9. These pockets of together time are the most special to me.

You regularly wear tea bags in your shoes and sport Mr. Potato Head glasses when you leave the house. You are actually quite insistent on both of these events. We’re still trying to figure out why. No matter.

You participated in your first Relay for Life celebration last month. You were officially the youngest walker making the survivor’s lap. You raised over $1650 dollars. In all my days, I will never forget the look of pure joy on your face when you took off around the track, running as fast as your chubby, healthy legs would carry you. You wore your purple shirt (which looked like a nightgown on you) with pride. With your pom-pom in one hand and me on the other side, we raced around the track three times before you even slowed down. On the last lap, you tripped on an electrical cord and skinned your knee pretty good. You paused long enough to grimace and ask for a kiss, but then you got back up and finished what you set out to do. I loved seeing the look on people’s faces as we passed by. It was a look that expressed gratitude, hopefulness, and inspiration. What a victory! It is this joy that you contain within you that makes me love you more with each day. You are a happy girl. Naturally, truly, and completely. How did I get so lucky?

I did not plan a big party for you this year. I don’t know exactly why. Several people have even asked me why I’m not pulling out all the stops, planning the biggest celebration ever. Part of me wonders the same. After reflecting upon it for a bit, I think it’s because I feel like everything has returned back to “normal”. Yes, we still have to dose you up with radioactive dye every few months and take some fancy pictures of your insides, but for the most part, our life has returned to normal. I don’t want to draw attention to the cancer so much any more. I want to focus on you being healthy and happy as all two year olds deserve to be. We will share a birthday cake with DanDaddy and Uncle Scott and watch you make a terrible mess of it. We will give you a scooter so you can keep up with Charlie and Poppy at the park. We will take a hundred pictures of you in hopes of capturing the energy of the day. In hopes of remembering you exactly the way you are at this very moment in time.

How different this June 29th will be! How different I am because of last June 29th. I love you for always my sweet, perfect baby. Come what may.

Snippets (4.10.12)

4.10.12

Mary Hazel has mastered the use of the phrase *thumbs up” in every context. When she puts her toys away, she asks for approval – “Thumbs up, Mommy?”. When I leave for work in the mornings she reassures me – “Thumbs up, Mommy!”. When she’s pleased with herself, she grins and whispers – “thumbs up, baby”. The other night, I rocked her until her little body became heavy and her breathing rhythmic. I slowly got up and inched toward her crib. I tucked her in and sneaked toward the door. As I reached for the knob, she raised her head briefly and exclaimed, “To the moon and back! Thumbs up!”. 

***

MH recited the whole alphabet from the back seat of the van on the way home from school today. I celebrated and did the happy dance for her. (I think she might already be embarrassed by the happy dance like her siblings.) She still stumbles a bit through “L,M,N,O,P”, but I’m going to give her full credit. I ended up doing the Elaine-from-Seinfeld-happy dance another time today when Mary Hazel told me she needed to go “potty like a big girl”, marched to the bathroom, pulled the stool over to the grown-up potty, climbed aboard and tinkled right on target! Woo Hoo! Woo Hoo! Woo, woo, woo hoo! (That’s an excerpt from the happy dance song, by the way.) She enjoyed the positive reinforcement so much that she got up and down from that potty about a dozen more times before she realized she had nothing left to give. Big fun.

***

Yesterday I was alone with Mary Hazel and needed to take a shower before going to work. I lured her to the bathroom with books and toys and told her to stay close. Of course, the moment I stepped under the hot water, she took off. I called her name several times to see if she would answer. She didn’t. I rushed through my shower and barely got the soap out of my hair before I grabbed the towel and went searching for her. I found her sitting pretty as you please in the middle of her sister’s bed surrounded by broken plastic Easter eggs and wadded up pieces of shiny tin foil. Her mischievous little hands and face were smeared with warm chocolate and she was rather pleased with herself. Back to the shower we went.

***

My dear friend and her lovely family of five spent the Easter holiday with us last week. When the big, tall daddy first walked through the door, MH wasn’t quite sure about him. I said something like, “Who is that man coming into our house?”. From that point on, she referred to him simply as Man. Hey Man, read me a book. Hey Man, come here. Hey Man, hug? He responded in kind by affectionately referring to her as Girl. Something about that exchange just made me smile every single time.

***

I had to take poor Charlie to the Minute Clinic Easter morning. Here is the conversation between the nurse practitioner and my son. Her: “So your ears hurt?” Him: “Yes.” Her: “And your throat hurts?” Him: “Yes.” Her: “And a bit of a fever?” Him: “Yes.” Her: “And anything else bothering you?” Him: “Well, sometimes my sister does.”

***

When my son revealed something rather embarrassing to me today, I told him he was honest to a fault. Charlie, who often pronounces r’s as l’s, cackled hysterically and reprimanded me for saying an “inappropriate” word. Took me a minute.

***

It is so fun listening to the kids read real books. (I consider Hop on Pop a real book in case you’re wondering.) Charlie seems a little more comfortable sounding out the letters and figuring out words in context. Poppy is so nervous about saying something wrong that she holds back a little. Bless her. If she hesitates too long, Charlie swoops in and gives her the answer (even though it makes her SO mad). It’s hard enough practicing our reading without the baby climbing in between us and stealing the book from my hands, now I have to make time to read with them individually so one doesn’t feel overshadowed by the other. It’s times like these that I feel there isn’t enough mama to go around.

Snippets (4.4.12)

3.7.12
We finally have everyone nursed back to health. (Knock, knock.) I was so relieved and ambitious this morning that we walked to school for the first time in a week. It was a crisp, clear morning and the children were happy to be helping me with my Kindness Project du jour. At least I think they were. We ran into a bit of a dilemma halfway to Main Street when we realized that Blackberry had followed us all the way from home. She’s only been camping on our front porch for a week or so, but I’ve grown quite attached to her already. The thought of her approaching one of the busiest streets this side of town had me breaking a sweat. I called Russell to come fetch the kitty. He was about to leave for work, so he wasn’t exactly thrilled with the distraction. But he obliged. When he approached our location, however, he somehow drove right past us. Boy, does that husband of mine have tunnel vision! Just when the kids and I started returning home to safely deposit the shadowing kitty, our neighbor let out her dozen or so barking basset hounds in their fenced-in backyard. Blackberry first jumped straight up in the air and then, from what I could see, actually flew halfway home. A blessing in disguise. Poppy was not happy that we were officially one minute late for school, but I think it was worth it.

When I picked up MH from school today, she gave me her signature bear hug and then grabbed my cheeks in her hand, made sure I was looking at her, and then proudly boasted, “I potty! Ms. Carol! No diaper!” She repeated this several times until her teachers nodded and vouched for her story. I don’t think she actually produced anything, but she asked to go and went through the motions. How exciting! I don’t think the twins were interested until they were closer to 2 ½. Of course, they never went to “school” to see how the big kids went about their, er, business. It’s fun to see the baby doing new and different things, but I will miss the diaper stage. Seriously. I think the potty training time is pretty challenging. You have to visit every bathroom at every place you even thought about visiting. You have to wash hands at every one of these locations. You have to pull off the interstate every 30 minutes because you don’t want to assume they can wait when they tell you they have to go. You have to travel with a potty in the trunk. And so on. The biggest reason I’ll miss the diaper stage, though, is I really love our cloth diapers! They are so pretty and pink and soft. Weird, I know.

3.30.12
It has become part of our driving-to-school routine to count. Mary Hazel is a very enthusiastic student. We always start with 1 – 20 in English. (It’s cute the way she always stumbles over “thwee”.) We’ve added to our repertoire a little Spanish and French for variety. My favorite part is when I get to the French seven. I say, “Sept” and she enthusiastically responds, “Go!”

Poppy and Charlie were very excited to let us in on a little secret over dinner last night. They whispered that there was going to be quite the event at school in a couple of weeks but swore us to secrecy. They hopped up from the table (which we normally discourage) and broke out into a dance routine that looked like a cross between The Robot and The Funky Chicken. Poppy finally broke the suspense when she revealed, “We’re going to have a flash mop!”

Project Kindness (Day 38)

The little boy, who was Mary Hazel’s next door neighbor last July at the Children’s Cancer Center was having a rough go of it that week. His mom and I spent several late nights in the lounge sharing, commiserating, wishing, and crying. His name is Will and he is the same age as the possums. He was diagnosed with a rare form of leukemia. Well, to be exact, it is Average Risk (AR) B-Precursor (Pre-B) Acute Lymphocytic Leukemia (ALL). That’s too many acronyms for such a little boy. He is a little over one year into his three-year treatment. He has his “bucket days” when he doesn’t react well to his very potent medicine, but he has a lot of good days, too. His father affectionately refers to him as SuperDude and keeps all of Will’s adoring fans up to date through his CaringBridge site. From what I read, Will’s family is devoted to him and takes great comfort in their faith. I really want this little boy to be OK. I really need him to be OK. I feel a special connection to him even though I do not know him very well. Time and circumstances play a major role in what turns out to matter in this life. I think about little Will quite often. Yesterday, I got a notification that his CaringBridge site has been updated. When I clicked the link, I read that Will’s dad is taking part in a local fundraising walk, CureSearch for Children’s Cancer. This organization is a national non-profit foundation whose mission is to fund and support children’s cancer research and provide information and resources to all those affected by children’s cancer. Well, that sounds good. When I browsed the site, two statistics jumped out at me:

  1. Charitable giving is especially important now, as federal funding for children’s cancer research has been flat for the last decade and was reduced by five percent in 2011. 
  2. In the last 40 years, the overall survival rate for children’s cancer has increased from 10% to 78%. At CureSearch, our goal is 100%.

That would make me super happy if all children diagnosed with cancer could be cured. So, in part, to make myself feel super happy, I donated to Will’s page.

The walk takes place June 2 at Furman University in Greenville, SC. If you are interested in walking, check out the 2012 Upstate CureSearch Walk page. I you would like to help little Will reach his goal, please consider donating to his team.

I wish that fewer of my acts of kindness had to do with pediatric cancer. I really do.

Project Kindness (Day 37)

A Photo Essay on Kindness (as told by Mary Hazel, age 21 months)

“I made a new friend today. I call her ‘Big Girl’.”

“We’re the same size. We should definitely be friends, OK?”

“I will teach you all my favorite porch games.”

“Sometimes I just like to sit and watch the roly polies.”

“Sometimes I like jumping down the steps! Jumping! I’ll help you.”

“Did all that jumping make you tired? We can take a little rest.”

“All rested? Wanna play ball with me? Wow, you’re really good!”

 “That was fun!. Meet you here tomorrow?”

(Editor’s note: Mary Hazel asked me to make it clear that the dumpster seen in some of her photos is there because ol’ Mr. Dodson’s house is being renovated by the nice, new couple across the street.)