New Year's

New Year's eve holds the promise of fresh starts, dramatic resolutions (many of which I have never kept so I have given up), champagne toasts and if you are with the one you love a kiss to greet the next year. Our New's Eve this year will be very different than last year, and yet if I could rewind the clock I would. It was a quiet evening with just Mike, Joe and myself. Tony and David had gone to a concert and were gone until just before midnight.

Even though we were within a week of losing Joe forever, he was still here, I could sit by him, work the crossword puzzle with him, even though he could not offer any answers to the clues,I could hold his hand. I could give him water and medicine to soothe his beastly pain. I had a planned purpose for the day instead of rambling through life enveloped in this shroud of pain.

The Perfect gift

Every year we search for the perfect gift for those we love. It may be boots, books, or baby clothing for an impending birth, a wallet or a picture of an important event.

But my Mom found the most perfect gift, yes after 55 years, it was impeccable. We sat there opening presents and there in a wonderful bag was my "Flower in a Sidewalk" frozen in time, never to die silk flowers. As I pulled out of the bag my Mom sat up straight and said we need to fluff up the petals. But as I glanced towards her she cared less about the flowers, the tears in her eyes were for me.

So to my Mom, who took the time and the energy to find the gift of my lifetime, I thank you. And I thank you and Dad for always being there for me, Mike, Tony and David.

The Book

You have asked for me to write it and I have resisted. You have asked when will I write it and I have resisted. You have asked if you could help and I have resisted. Until today when I finally opened the five inch binder of Joe's postings as well as mine. I took an inch of a step towards writing the book.

But even by dipping my toe into the waters of my grief I felt the aches and pains in my joints. The physical pain of loss. The tears in my eyes fogged the words I had written. I was not clear in my direction of what was important to say, the gravity of my message, the fact that we were blessed to be with Joe until the end.

The book will come, I have made the first step towards that, but patience may be the author along with a strong heart.

We Miss You

Wish you were here Joe. We miss you tons and love you lots. Love Mom, Dad, Tony and David.

For All of You

Yesterday was the hardest day, I pulled myself through the sludge, the incredible fog that dulled my brain and my heart. But I would have never made it through the day without every one of you, yes you who have steadfastly stood by our side as devoted soldiers, fighting to keep our heartbreak at bay.

The pain of Joe's birthday was unbearable in the morning. But then came the comments on Facebook, the emails from friends, the lavender from my mom and dad. And Tony and David who were equally as dulled down struggled between avoidance and wanting to remember so every correspondence gave them a ray of hope.

What took my breath away were the Men of McCallie. Each one of Joe's closest friends called, texted and one visited our home. To you I tip my hat because at such an early age you get it.

I am, we are, forever grateful for your love, your acts of kindness, your messages and your support. So we wish you a Merry Christmas and only the best for the New Year.

Golden Birthday

Today, Joe, you would be 21 on December 21, so this is your golden birthday. Instead, it will be me, your dad, Tony and David remembering you along with aunts, uncles, grandparents and friends. We planned to change our venue and go to a place we have never been before hoping to separate us from the pain, but after Tony's surgery we will be at home. Our new plans are to put the tree up and fill it with Tony, David's and your ornaments. Then we will move on to a movie, one we think you would have picked and of course chomp down a large bag of popcorn.

You asked me a year or so ago at the beach "What was I like as a child?" I knew you had no memories before 2008 and your second chemotherapy, so we talked for a long time about your childhood. How you needed, wanted matching socks to your shirts, how you helped me with the twins when they were battling asthma and allergies, how you spent hours putting small sticks between the slats of our deck. How you would build legos and the fact that you loved Pavarroti and the three tenors. You would watch videos of their performances pretending to conduct using old church bulletins as your sheet music. You wrote a paper when Mr. Rogers died, who was your hero. And you always made sure your brothers and friends were going in the right direction. You never took a picture without your arms draped around your brothers or friends. How you could never finish an art project until McCallie. We talked about how you changed your name when you were three and how we knew then you had your own path to follow and we were along for the incredible ride.

And it was an incredible ride and we thank every day we had a seat. In the end you loved us and we loved you and that was all you cared about.

The Mom Factor

Never a dull moment with the Restaino's and it started with the arrival of Tony and David late Friday night. We spent time catching up and all appeared to be the start of a wonderful Christmas break. That is until Saturday. Tony woke up with pain in his abdomen, which seemed to be increasing by the hour. In the early afternoon we headed to the emergency room and several hours later he was in surgery to remove his appendix. And although this was so different, and much easier than Joe, the florescent lights, the smells, the checking, double checking and the constant pushing of the call button for pain medications brought back all those memories. We were only there 24 hours which left me with the question of how did we do this for years? Well, the answer is simply that is what you do for those you love.

And in the darkness of Tony's room with me sleeping in a chair, although at the age of eighteen he is legally an adult, I knew I could not leave him since he is and always will be my son. Just the same way I could never leave Joe. Call it the "mom factor".

Don't Know If....

Don't know if you should call, hug us or ask about our plans for the holidays. These are the million dollar questions. So many big events happened in a short amount of time a year ago. Joe's birthday, Christmas and then his death the first part of January. This is truly a rocky road, but for us we have decided what is important, and that is to be together.

First is we will not be at home for Joe's birthday. It will be a time for us to huddle around and remember a son and a brother in a different location. We will be home for Christmas with my parents, my niece, John, Tony and David; frankly because we cannot bear the thought of celebrating without them.

Then we will remember all the incredible acts of kindness towards our family over the past years. Without your love and support our family would have never found a way to put one foot in front of the other.

So on December 21st, Joe's birthday, we will take one more step towards healing. Just one foot in front of the other....

Snowing

It is snowing in Charlotte, not a common event and I am sure every child is holding their breath hoping for a day off from school. But I remember a year ago this past December when we had flurries and I tried in vain to tell Joe about the snow. But he could not engage at that point so we all stayed inside snuggled in blankets in our room.

Joe loved the snow and I have a vivid memory of him and his brothers playing in piles of it in a freak snow storm in Dallas. They posed for a picture in our foyer bundled in sweaters, jackets and socks on their hands for mittens, because why in the world would you have mittens in Dallas. Every time it snows I think of that picture. The happy times, his bight shining brown eyes, and of course as always, his arms draped around Tony and David.

When does it end...

When does the pain end. Will it be today or tomorrow, three years from now or never. I don't have the answer and my grief counselor says I am doing a remarkable job of moving on and keeping Joe's memory alive with his scholarship fund and Joedance film festival. Ok, not to downplay her importance of my healing, but memories are not what I signed up to keep alive. I worked hard to bring Joe into this world as healthy as possible and to keep him safe as he grew up, but then came his cancer and I had no control of his destiny. Never in my life did I feel such desperation as I felt the sands of his life sift through my fingers never having a way to keep it in my hands. Our family was not fighting poor decisions but rather a beast that devoured my son. A beast with no compassion and offered no second chances.

Candlelight

We have returned from McCallie (yes we are burning up the road between Charlotte and Chattanooga) and a wonderful evening of Candlelight. We have only missed one in the past seven years, and I still love this McCallie tradition. But this year was difficult. I have not spent much time in the chapel since Joe's service. I remember that night so vividly. It was cold outside and the chill in the air seemed to creep in around me, invading my fond, warm memories of past visits. This is where the Honors Scholars weekend started for Joe, Tony and David; where Joe and Tony received Cum Laude; Baccalaureate takes place here; where Joe did both of his chapel talks, and Tony and David will deliver their talks this spring.

I have always felt comforted in the McCallie Chapel, a place the boys gather every morning for announcements, guest speakers and talks given by faculty and students. My breath caught in my throat when I walked up the steps, I felt for the strength of Mike's arm as we entered hoping not to feel that chill I had felt this past January. I walked into warmth, as if a light blanket had covered my shoulders, and then there was Sam's smiling face, David's roommate. He stepped outside the pew gesturing us to join him, and as I sat I knew the tears would come, but Sam would have none of that business. He chatted about Wake Forest, Tony and David, and the week they would spend at the beach before graduation. Then there was the hug that lingered from Avery's mom. It was Rich's dad who talked about our first dinner when they were freshman and Joseph who played his cello more beautiful than he did at Joe's service.

The chill did not creep in, the chapel was warm and full of hope, and this time for us it was not filled with tears.

The Funny Thing Is...

This past Thanksgiving I saw my mom standing, ironically, in the same way my grandma did with us when we were growing up. Her hands were clasped in front of her the same as Pheobe did when she would ask us "So what is going with you?" It was the same stance, the hand to her face and the gaze into your eyes as she would listen. Only this time the conversation was with Tony and David, her grandsons, not her children. It must be the best time in your life to watch you grandchildren grow up and revel in their accomplishments as well as their set backs.

I watched my mom move from Tony and David to Sarah with the same gaze and stance, and then on to Sarah's boyfriend John and her friend Ann. Each time I was amazed about her interest, but mostly about her gaze as she connected to every person. So my dear mom when I get to your stage of life I hope I have the same stance, the same clasp of my hands and the same wonderful gaze into my grandchildren's faces.

Diving

It started twelve years ago for Tony and will most likely continue for another four years in college. I distinctly remember being at the Olympic trials hosted by SMU in Dallas when they could not have been more than four years old. Squinting against the sun they watched diver after diver complete difficult twists and turns off the spring boards and platforms. At one point Tony turned to David, eyes wide with amazement, shouting "how cool is this?" That began his love for this sport. It seemed to go hand in hand with their gymnastics and along with the opportunity to place them in a feeder program at UT Knoxville run by Dave Parrington, Tony's love affair with diving was firmly planted. He showed no fear and continued to build more difficult dive lists over the years.

Just a week ago we attended the McCallie Invitational and for the first time it was hard for me to watch. His dives are "big" now. Front 3 1/2's off a 1 meter board makes my heart stop. I stare at his feet and the end of the board making sure his not to far back or to far forward, then I hold my breath. What emerges from the depths of the dive well is a strong, confident young man. I remember when he was so small the board did not move under his weight. Now I see the small sliver of a dive board bend in response of his perfect hurdle and then fly into the air completing the same difficult twists and turns he saw fourteen years ago. How cool is that?

Thankgiving

This should be a day of giving thanks, but to be honest I search to find the meaning of this looking over the past trudges of my life. Losing a daughter and then a son, well giving thanks is hard to muster up and plaster on a pretty face. I lost Cora Ann just before Thanksgiving and this same time 19 years later was when Joe slipped into incoherence. Tony and David were born the same day, one year after I lost Cora Ann and that makes this day bittersweet. Thanksgiving to me means nothing more than loss, of what would have been, what should have been, and what I truly wanted but was always just beyond my reach.

I try and try again to find thanks this time of year, and the end result, after all of these tragic events, is that Tony and David were our gift. And for that I will continue be thankful.

First and Last

We are going to have many firsts and lasts the next few months. It will be the first holidays and Joe's birthday without him. I have no idea what this will be like, but for certain we are bracing for the worst; and after much discussion we have decided to stay home for Thanksgiving but be as far away as possible for Joe's birthday. For Tony and David it is the last Head of the Hooch, McCallie Invitational, state dive meet, Argonaunt and spring crew; and our last Honors Scholars weekend and graduation.

The firsts and lasts seem to be colliding just when we are the most vulnerable. Mike and I try hard to celebrate every part of Tony and David's senior year, but you can see the sadness in our eyes in every picture. As we drive home from McCallie there is always the comment "Joe would be so proud of his brothers" followed by a very long silence.

What we will dread the most, however, is the first anniversary of Joe's death and no conversation is needed since we all know we will be together no matter what.

You Are 18!

Dear Tony and David,

Today you are 18 and are moving on to wonderful exciting times in your life. I remember these many years ago when you arrived, bringing laughter and love into our lives. After 20 weeks in bed to get you safely delivered you never missed a beat and have amazed us beyond words. You were devoted brothers to Joe, loving sons and have always followed your dreams. There is nothing more a mother could want, so thank you for the joy you have brought to our family.

Happy Birthday, and many more to come.

Love you lots,

Mom

Follow Your Dreams

Follow your dreams, those words have resonated in our ears for years. But we, for the most part, were a generation of following our dreams meant make as much money as you can in your lifetime. Putting aside our passions, and as the years went by wondering what was missing, and then circling back to our dreams later in years.

I see Tony and David's class on the cusp of graduating and going on to college, or other adventures, and they are a generation of following their dreams. I am amazed about how each one of them know their path. But David in his quiet way was the pinnacle of following dreams. He wanted to go overseas for college and as a young seventeen year old he took the leap of faith and applied to Oxford, Durham University and St. Andrews in the United Kingdom. His dream has been fulfilled being accepted to Durham University and is in the running for Oxford. The St. Andrews decision will be not far behind.

Oh the refreshing times of our children who not want for monetary rewards, but rather seek their desires and reach for them every day. This generation is destined to make a difference.

Charleston

Today I felt energized for the first time in a week and my heart was being pulled to Charleston where we had spread Joe's ashes this past summer. I was awake early in the morning and after chores and errands I pointed the car south on I-77 to merge on to I-26 towards Charleston. The old BMW hummed beautifully down the road and deposited me in the perfect parking spot within yards of where his ashes were spread amongst us and his friends. I carefully pulled Joe's IPod from my purse and found "On the Go 3", his favorite songs we had listened to for months soothing him to sleep. I stood at the railing, holding the rosemary from our garden, listening to his music and an incredible calmness came over me. As I dropped the rosemary into the bay it did not float out to sea instead it followed me as I walked to the car.

I wonder where his ashes are. Were they taken out to sea to exotic places or did they stay in the bay? I am not sure but my guess is that Joe was carried out of the bay on to wonderful places for that would be his wish. But for a moment today I felt he knew I was going to be there, he returned and walked me to my car.

Head of the Hooch and more...

I was in Chattanooga last weekend to watch Tony dive in the morning and David row the Head of the Hooch in the afternoon. This weekend has been a tradition for four years and one I have always looked forward to every year. Truly there is not another weekend, outside of Candlelight, that I enjoy more. Watching Tony twist and turn off the board and then witness operatic rowing in the afternoon equals the sum of a perfect weekend. A wonderful dinner with our boys completes the day.

We missed this weekend last year, but this year I soaked up every moment.

How We Say Goodbye

I was scanning the CNN website a few weeks ago and ran across an interesting article about the dead greeting the dying. The experts say at the end they recognize a mother, father, relative or friend that has passed away and are ready to greet them on the other side. It was an article written by a man who deals with this regularly and clearly he had more years of experience. We were the rookies thrown into this arena groping our way through the dark every day with the help of Hospice, a therapist and our own gut feelings. But what struck me was the recurring scenario he described, a conversation with a vision in the corner of the room or at their bedside happening within weeks or hours of passing away.

I remember before Joe passed away he became particularly agitated one night on the heels of sleeping most of the day and night for a week. He insisted on being out of bed and was sitting on the floor, covered in a blanket, with an unnerving wild look in his eyes. His head jerked from one corner of the room to the other and finally he'd pointed to the left side and growled, "I am not going with you and don't ask me again." His face softened as he pointed to the right corner softly saying, "I will go with you."

To this day we have no idea who he was talking to, nor could he tell us since he promptly returned to bed not to move or speak after that night. I do know whoever was visiting his beside that night he had made his choice and they were waiting for him.

This Is The Long Road

These months ahead marks our family's long march of remembering. This is the time when we knew Joe was dying and we held on to every word, every breath, every visit from this day forward. We were, as my grandmother would say, "at the bottom of the barrel".

We "circled the wagons" for the toughest fight of our lives, the battle of holding on tight to life and letting go, knowing that this day may be our last conversation. Heading straight on to death is unsettling, disturbing and brave. The ability to have the chance to talk is a gift, but the road to deterioration is heartbreaking. Joe was with us until the last six weeks, which at that point he slipped into a drug induced state to control his pain. His body was here but his mind was gone. When looking back from the time of his last recurrence to his death we only had about two months of Joe. And then he slipped away.

But he knew we were by his side and never alone. And that made his death graceful.

"Get Low"

My breath was taken away by this movie. In Robert Duvall's words, "get low" is about taking care of your business before you go. Settings things straight, asking for forgiveness and, sometimes with humor, saying goodbye to those you love.

Some of us will be fortunate to go quietly in our sleep, others such as my son Joe, will struggle until the end. But one thing I know when we feel our time has come we "get low", hopefully we have the chance ask for forgiveness, tell our story and what made us tick. Many times there is not that opportunity, we are whisked away without another word, leaving our loved ones wondering about our lives.

In "Get Low" Felix built a self imposed prison, essentially cutting himself of from everyone, and burdening himself with his guilt with no one to share his grief. We all have one or two things in our lives we are not proud of and so many more times we brushed aside each others interests. The lesson is to be genuinely interested in your family and friends everyday; not build our self imposed prisons or hide our imperfections.

Krismas is coming

Not Christmas, but Krismas my college roommate is coming to visit me and I can't wait. She was the perfect roommate, you know the one you always hoped you would get, that loved you no matter what was going on in your life. The one who would stay up all night with you to write that paper you should have done three weeks ago. The one who finds you after twenty years and it is like you never skipped a beat.

We all have one roommate in our lives that was special, one we remember, one you connect with and one that you are so very thankful to find again. Well, Krismas you are the winner.

The New Lady on the Block

If you have not been to the Mint Museum Uptown it is a must see. The Cultural Center uptown is a gem and the anchor is the Mint Museum. You are in the midst of such rare and beautiful pieces of art in an open and gracious space. And right beside the MMU is the Bechtler with an extensive personal art collection, the Harvey Ganntt African American Museum and the Knight Theatre.

To those who had the vision of bringing the arts to Charlotte in a very big way, and the years of work to make it happen, thank you for putting another jewel in the Queen's City crown.

The Beginning of Goodbye

A year ago this was the weekend that marked our family's journey of saying goodbye to Joe. Tony and David arrived home from school and prepared themselves to sleep at the foot of Joe's bed. When we suggested returning to McCallie they stubbornly dug in their heels, resisting any suggestion of that since it was the last months of their brother's life. Mike caught cat naps and slept through the night to keep working. At this point we stopped helping Joe up the stairs and he moved in to our bedroom. We read to him but he could not follow the stories, we talked about our memories but he could not remember, and as awkward as it sounds, we talked about the future. Joe was in the moment for a little while but he would always slip away. Two weeks from now he did not recognize his bothers or his dad. Seven weeks from now he thought every day was Thanksgiving. Six weeks from Thanksgiving Joe was gone. Ten months later we still remember Joe as he was, still looking at the door during every college break expecting him to arrive, still missing his beautiful face and his timely uncanny wit. But these are dreams and not reality.

What If

What if Joe had not had cancer and lived, or we never moved from Dallas, Texas; where we were so happy. What if Tony did not have Type 1 diabetes, or if Tony and David did not have asthma. What if those burdens were not part of our lives and we would haved lived a life without heartbreak. What if our only concern was what they wore to school, what they ate for breakfast or just worry about their grades.

No, this family's concerns are about larger issues. It is about Tony and David dealing with losing a bother, us a son, getting through the holidays, Joe's birthday, and living with a large void in our lives.

What if none of those ever happened...

David

I love to write. Whether it be in my journal or my blog, I just find it comforting.

But David's words are laid down on the page like satin allowing us to follow his stories smoothly. You can feel the touch on your shoulder like it was yesterday, the smell bread baking in the kitchen or the way you felt coming home from school being surrounded with the familiarities of what you left behind.

When he reads he describes it as tumbling in to the pages, drinking in every character and plot. He admitted to learning about dating from Jane Austen and experiencing death with Scout. But what strikes my heart is how eloquently he writes about Joe. Well, for a young man it is incredible.

I have kept every story David has written, and I am always amazed how each one is better than the last. How they draw me in wanting to keep turning the pages to the end only to be once again wowed. So my dear son keep your journal close, your pen full of ink and your computer fully charged. I want to read everything you write.

The College Essay

Finding "X",or describe two different types of people in the world are their essay choices for the University of Chicago. Not easy to answer nor to simple explain, but for some reason they found a way to write about these questions.

Tony wrote about "what is x" ending with finding "y" after losing Joe. David wrote about people who look up into the sky, and those who look to the ground; describing himself as the latter feeling the heaviness of his sadness, as if wearing a yoke, and living without Joe.

I post this tonight since I am amazed that Tony and David, who after losing a brother they dearly loved, found the strength to write such personal college essays.

Joey

It was Joe's first recurrence and he was facing 8 months of chemotherapy, lung surgery and all of us were soaked with anger and fear. Then we met Joey on the 11th floor of LCH. A small spit of a two year old diagnosed with neuroblastoma. His formal name was Joseph Michael, the same as Joe's; and he was the only patient our Joe ever spoke to or visited in all of his time at LCH. I don't know why we gravitated to Joey and his mom Maggie, and Joe followed Joey's progress through his treatments and 2 1/2 years of remission. We are not "best friends" with this family, it just evolved into a "I know you are there" relationship. We would keep each other updated on Caring Bridge, and Maggie follows my blog.

This past week Joey relapsed and is back at LCH facing another year of chemotherapy and surgery plus multiple trips to Sloan-Kettering. After this long I was stunned. I wanted to write her or call; but I knew that would never be enough. So under the guise of delivering donations I made my way back to the 11th floor to see Maggie.

In the hallway, with her hair in a towel and fresh out the shower, we talked, hugged and fought back tears. Our conversation ran the gamut of how this changes your family, the financial strain, the anger, isolation and of course the under current of fear that races through your mind and body with a recurrence. You are simply frozen, but somehow you find the strength to keep moving ahead with hope for your child.

September 29, 2009

One year ago we were in Chattanooga on the eve of Joe's last chapel talk. HIs final goodbye to the students, faculty and the school he had loved for four years. We packed him up between two cars, each carrying twelve oxygen tanks, along with his beloved Brooks Bothers navy blazer passed on to him from his father and his tie from graduation. The trip was slow and arduous, with us side stepping every bump in the road. Having that much oxygen in your car can be very scary. Joe slept most of the way waking only to tweak his talk. We never looked at each other but at times our hands were drawn together in a tight grip. A grip only a mother can feel as her child is slipping away.

The night before was a routine of calling doctors to regulate his pain and his oxygen and having dinner with the Phillips who graciously provided food for us. In the morning Joe was so weak Mike had to dress him. Chat Phillips took on the job of the "protector of the oxygen tanks". The effort for Joe to walk from the car to the chapel caused a horrendous coughing fit. The incredible strength it took for him to walk out to his chair on stage and start his talk would be like a healthy man running up a mountain. He delivered his talk, the pages flying into Billy Faires hands, and in the end he weakly walked off stage only to fall into another coughing fit.

We were there along with his bothers and grandparents. But also so many others made the effort to be by Joe's side. It was Jonny who could only take one "no questions asked" leave from at the Air Force Academy; Michael, Stu and Frank who drove all night from Raleigh, Chris who drove in from Kentucky with his parents Susie and Robbie. And included in the group were Josh, Elliot and Kentucky, each of them driving for hours to see Joe. Mary Kay and Chat made the trip from Mississippi. Our breaths were taken away by the support.

September 30, 2009 was Joe's farewell to those he loved. October 1, 2009, as we drove back to Charlotte, the conversation was about his funeral.

Charlotte Symphony

What a gift to have the Charlotte Symphony and a new conductor. We went to opening night and is was magical. If you have a chance buy a ticket, close your eyes and ready yourself to be transported to a beautiful place. Christopher Warren-Green is lovable from the farthest seat in the balcony. You feel his love, his passion of music and the way he pulls out the best of each musician is amazing.

One more reason that Charlotte is special.

Harvest Moon

I have to confess I never really look up to the sky to find the moon. I just take it for granted it is always there. The whole time Joe was in the hospital I never saw the moon. The view was either blocked by buildings or we were on the wrong side of the hospital. Joe loved the moon and the stars. When he was twelve we bought him telescope for his birthday and he would sit on our front porch and gaze into the sky for hours.

Tonight as Mike and I were walking to the car I saw the most beautiful "Harvest Moon". One Joe would have loved and the first I have seen in over four years, and it reminded me of a conversation I had with Joe. While he traveled Europe he kept looking for the moon and could never find it. He went through France, Germany, Switzerland and Italy never seeing the moon. He thought it was very strange. While we were there I made an effort to look for the moon and could never find it. Yes, I thought it was strange also.

But when David and I arrived in Scotland, in the late hours of the night, there was the moon, so bright white it lit up the town. I don't know exactly where Joe finally saw the moon on his travels, he never said, but I am sure it was in Ireland where the sky is big and beautiful.

Grieving

OK folks I am not going to tell you anything new, at least to those who have lost a parent, a sibling, a son or a daughter. The road is rough and we all grieve in our own way. Some are silent, some spill it out everywhere, but what is important is to be aware of how we get through the pain of losing someone important to us.

Our family was in the trenches for so long that when Joe passed away we were left in a state of limbo. We had worked so hard to save his life and when that was taken from us we did not know where to turn. We searched for the meaning of Joe passing away, we searched for the meaning of our lives, we searched for peace.

The thing is you can search all your life and maybe find an answer, but unfortunately this is life, or maybe death, and it is the hand dealt to us. Importantly it is how we respond to tragedy, how we make a difference and how we remember.

The Dreaded Group

When Joe was diagnosed with cancer we were given an invitation to the inner circle of a dreaded group. The group of those with cancer, or with loved ones with cancer, not something you seek out and desperately want an exclusive membership. We had a gold card membership and became "frequent flyers" at Levine Children's Hospital.

Now, not even a year since Joe has passed away a dear friend has been initiated to the "group you never want to have a membership". Her daughter cried in my arms today asking why my mom, saying not my mom. I held her, rubbed her back and gave her the best words of advice given to me. It is OK to be scared and to cry; and buy your mom a notebook and pens so she can write everything down during the barrage of information over the next few days. Then keep it on hand for all the drugs that will be given as a log so not to miss a single vital dose towards her recovery.

I felt the same pit in my gut today as I did with Joe. I will know their sleepless nights until their questions are answered and a plan is put in place. I know how friends and family will circle them with love and support, and I hope this will be a story with a happy ending.

Poetry Slam

If you have never been to a Poetry Slam it is a must do. We went to a youth Poetry Slam and these kids, ages 13 to 18 years old, poured their hearts out through the most beautiful poetry you have ever heard.

Mike and I went out of curiosity because David did a Poetry Slam while he was at St. Andrew's Scotland this summer, and he called with such excitement after winning second place. We had no idea what he was talking about so we thought we would see it first hand. And man oh man this is incredible to watch and listen to original poems written by these incredibly talented writers.

So I highly recommend putting this on your bucket list, it will inspire you and reinforce the power of the next generation.

When Is..

When is the final goodbye? I have searched forever for the answer. And just when I think I have come to the absolute end of my grief of losing Joe, I turn a corner and get smacked down.

So when does it stop? Will it be a year, or two years, maybe five years or never. I don"t know. All I know there is not a day that goes by we don't miss Joe. I hate how our family has been redefined and rearranged as we search through the darkness ending up feeling our way through every day.

A loss of a son, a brother, a friend sets you back a notch or two. We try every day to keep going, one foot in front of the other. But to be honest it is hard to keep going, to put the smile on our faces, to live as we did before. And maybe that is the key, we will never live like we did before losing Joe.

The Fall

The air in Charlotte has lost the horrendous humidity (thank goodness because my hair looks better), and I feel the crispness of fall approaching. This is my most favorite time of the year because it beckons the beginning of the holiday season. No, I am not putting my Christmas tree up at this very moment, but it always reminds me of the start of another school year, promises ahead and the journey to spring.

I love the scarfs, the coats, the gloves and the boots, oh yes I love the boots. Putting logs on the fire, curling up with a good book with an equally wonderful blanket and having popcorn with the perfect movie are the ingredients to my cherished time of the year. It also will be the most dreaded time as this was the beginning of the end for Joe's life.

How does it always happen that way? Your favorite collides with your worst. Could it be that you are given the opportunity to hold on to the wonderful memories desperately pushing aside your nightmares? It is a chance for us to go into dormancy to emerge on the other end of renewal? I wish I had all the answers but I don't, so I will feel my way through every day and with a bit of luck come out on the other end wiser.

Just Thinking Out loud

We all have hurdles and tragedies throughout our lives. Heck we live eighty or ninety years so it would be hard to avoid them over that long of a life span. We live daily with the loss of Joe, but others also experience set backs for their families. Maybe it is losing a job, or dealing with the crush of dwindling incomes due to the recession, and yes even an illness or a death. It could be helping your child move on after a poor decision or listening while they try to find their way.

Whatever the situation, the simplicity of falling into our own lives is so easy we become oblivious to the struggles of others and induces shock upon hearing grievous news. Our family has spent the past eight months re-entering life, catching up to those around us who have been sprinting daily while we were stuck in slow motion. And as I reflect back I remember how that one phone call, text or email offered connection. Most of the time it was nothing more than "been thinking about you". No response was ever expected, yet it could make or break our day.

Who Would have Thought

My stomach has been churning, my heart has been in my throat as I have relived the weekend we received the news that Joe was dying. I couldn't sleep, I pushed myself to hard with my training for our 5k. My body ached and I tried so hard to find comfort, but it was elusive, always just out of my grasp, a step away.

But comfort came to me tonight in the form a dinner with family. It was a night of remembering, not of Joe, but of the wonderful summers in Scituate, my sleepy home town on the East coast. There were stories of Maria's subs, launching our sail boat, sailing in the Atlantic Ocean and attending our step grandfather's recognition dinner for the National Science Foundation at the State Department.

You just never know in times of your deepest grief where you find the reprieve, the allowance of laughter, the ability to remember without tears. For all of you that give us that gift we are forever grateful.

Mary Poppins

To be honest I have never been a fan of the Mary Poppins movie, but since these tickets were included with our season passes we went to see the stage play. Well, knock me over with a feather; it was fantastic. From the staging to the singing and dancing it took my breath away. My favorite scene was "Step In Time". And as I was taking it all in I thought Joe, Tony and David would love this play.

All three of them are Disney fans, with their favorite being Beauty and the Beast. It was the animation innovation that caught their attention and also the messages behind the stories. Mary Poppins is all about family and the choices we make. What a wonderful gift to have that ability to tell those stories through animation, stage plays and incredible lyrics. Thanks Walt.

Agitation

I can't put my finger on my agitation this week. Everything bugs me, even the person at the grocery check out, who unfortunately has been the recipient of my nastiness. I have a scowl on my face and every movement is a huge effort. I feel the heaviness on my shoulders and my gait once again. What the heck is going on? Why is this happening?

And then the light bulb went on. This is the week we received the news that Joe's cancer had recurred, the week of our final decision, the week we knew he was dying. It was the week he headed to Penn to say goodbye to his friends, the week we drove to McCallie to tell Tony and David the news. The week his surgeon said no more, and I sat in my car, alone, discussing Joe's options with his oncologist.

The week I told Joe how much we loved him and would miss him forever.

A Chance

I took a chance last night and did a search for an old friend of mine, oh my gosh a friend from twenty years ago, on Linkedin. And funny thing happened in the cyber world she was out there and we talked tonight. We reconnected and remembered all of our great times in Minneapolis when we worked together. It was an hour long phone call of catching up and a walk down memory lane.

We all lose contact with our closest friends over the years. But when you have that phone call, email or letter and it takes you back to your memories with them and what connected you and what keeps you connected it is special. Friends from the past are such a wonderful gift.

The Perfect Weekend

Do you ever have a weekend that everything you do is just the right mix of social events and doing something rewarding?

Well, this was the perfect weekend. Friday night we spent time with friends at a neighborhood porch crawl on a roof top garden that offers the best views in town. Saturday afternoon we volunteered at Pinkberry, a hot new yogurt place in Phillips Place, to raise money for Levine Children's Hospital; which you all know is near and dear to our hearts. And then topped off the day dining alfresco with friends we have not seen in a long time in our courtyard. It was like being in the countryside of Italy and an evening of good food, good wine and good company. We ended the weekend having brunch with my parents, talking to the boys, making plans for parent's weekend and getting ready for the week ahead.

It was the best weekend Mike and I have had in a very long time. We laughed. Yes, we laughed and we didn't feel guilty. This is our giant step toward healing our broken hearts.

The Quiet House

The boys are back at McCallie and our house is very quiet. It always takes us a few days, OK maybe more like weeks, to recover from their absence. We wander aimlessly about our home wondering what to do and the void of not hearing their voices is strange. But then we adjust to them being gone and fall in to a routine of phone calls, text messages and emails. We keep up with the news on the McCallie web site and work the "mommy network". Our first visit will be in two weeks, earlier than normal, but as always we welcome the time to visit with Tony and David.

I am going to relish every day, every visit, every phone call of their last year at McCallie.

Ugh! Another Birthday

Tomorrow I will be 55. Oh good God this allows me the benefits of AARP car insurance, a discount at some movie theaters in Charlotte; maybe even enough savings to sneak an extra movie on the monthly budget; and the harsh reality that the skin on my elbows will never firm up again.

According to my family history I should have another 40 years to live. Again, good God that is daunting to think about so I leave that for another day. I wonder what changes I will witness in those years. I have already experienced the gut wrenching college application process as opposed to when we went. The bottom-line for us was if you had the money we will take you. But I have read watches are obsolete with the incoming freshman, email is to slow so texting is the way to go and before long everything you do will be on your smart phone, including credit card purchases.

My grandmother was born in 1900. In her lifetime she saw the invention of the car, the phone, computers and a man walk on the moon. I was born in 1955 and will witness our lives shrink to quick notes on a phone, the loss of a hand written note and nobody wearing a watch. Well, I am keeping my watch and my stationary. I find it much easier to check the time on my wrist rather than digging out my phone and there is nothing like the feeling of a handwritten note in your hand to comfort the soul.

Grown Up

David was home this weekend for tests on his eyes, which by the way everything is OK, but I could not get over how grown up he was. His steady gait, his strong straight back and the glow in his eyes. When did he grow up to be this confident, sure young man talking at dinner about what he wants to do and how he will accomplish every effort. And then how have Mike and I have adapted the ability to sit back and feel that every one of his dreams will be fulfilled.

I sat across the table from a young man, my son, who could talk about anything from Iraq to the latest new author, and wow; I am so incredibly fortunate. Just had to pinch myself.

Off To College

This fall would have been Joe's junior year at Penn and it is bittersweet to listen to other parents preparations for their sons and daughters to return to college for another year.

I remember Joe's freshman year at Penn. He was so ready to be away from the hospital, the chemo, the scans and the confinement of our home. He told us "just drop my stuff off in my room and we will say goodbye." It wasn't thirty minutes later than we had a call from him wanting to know our whereabouts. Then it was can we have lunch, and could you help run the cable in my room and then I would like a Penn hat. What was, as planned in his mind a short goodbye, turned into a long and lingering afternoon. The last image I had of Joe was sitting on a bench in front of his dorm. His head was bald, he was thin from eight months of chemo, but he was brave and proud that he achieved his goal of attending an Ivy League school.

No, we won't be getting Joe ready for college, not this year or any year forward. But we had the good fortune to deliver him to Penn his freshman year and run the cable line, have lunch with him and buy the Penn hat. Those memories are with me every fall.

Humor and Cancer

Today while ticking off a long list of errands we were listening to NPR's program "HumanKind." Ironically it was about engaging humor while having cancer. Most of the guests were comedians, all of which proclaimed their ability to laugh through the treatments essentially saved their lives.

I remember after the initial shock of Joe's diagnosis we resorted to our usual sarcastic humor. But that fades when you see your child deteriorate daily, when you have to sign a power of health attorney, when you realize the last chemotherapy protocol wiped out all memories of his childhood and then hear the words, falling like bricks on your ears, "there is nothing more we can do". Watching your son, who read such great books as The Count of Monte Cristo, Don Quixote and Nietzshe for fun, be diluted to "The Carrot War" and only enjoying the pictures; finding humor is an incredibly difficult stretch.

Joe never had the feeling of being punished by his cancer, but in his last months he often asked why me, to which we never had the answer. It was the luck of the draw, a crap shoot and a one in a million odds that this ugly bone cancer would finally claim his life.

Do I think our lack of humor at the end did not save him, no I believe our love for Joe helped him die with dignity.

It Must Be August

Our lower level room, which is a direct shot to the car, is filled with large bags of bedding, bins of school supplies and clothes bags of pants, ties and suit jackets. Yes, it must be August and time for Tony and David to return to McCallie

They are driving themselves back to Chattanooga, a senior year tradition in our family. They will attend a week of RA training and then be totally immersed into their senior year. This year will fly by and I know our phone conversations will be limited since the demands on their time will be more than in the past.

This is our transition to college, and no where similar to boarding school where you are still in contact with teachers, dorm heads and advisors. They will slowly move towards more independence and eventually make the break to be on their own.

It is great time for a parent to see your children take one more step to growing up and growing into themselves.

Are You Kidding?

What are the chances of driving from Charlotte to Connecticut to Providence to Boston and back again you would experience eight traffic jams? Well, that was our road trip and every two hours we were at a dead stop. Seven of them were on our way up and the last was in the wee hours of the morning on the return in the middle of no where. It was a challenge, but I have to admit with all of the "everything that could go wrong did" it was worth every minute. David realized Brown was a place for him; Tony experienced the maybe of Tufts. Each added them to the top of their lists while coffee, GPS and two more campus visits are now found on mine.

College visits and traveling challenges aside, it was the perfect trip. Having your teenage children trapped in a confined space often spawns conversation, especially in the dark when they know you can't see their faces and all positions are facing forward. This was their trip to decide, narrow down, take the next step; my part was to listen in amazement of how they have grown up.

I know we all say where did the time go, how can it be we are at this point, when they are taking flight to make their own way. Ironically, on this long and arduous trip I never asked myself that question. I sat quietly, reminiscing times we spent together and looking forward to many more years with Tony and David. I can't wait to see what they will become.

Surprise Another Road Trip

Within hours we have switched our attention from raising money for bone cancer research to a college road trip. Bright, well not so much bright, but most certainly early in the morning Tony, David and I will be heading to the Northeast to visit Tufts and Brown.

Bridging the gap of Joe, who is gone, and Tony and David, who are still with us, is tenuous. It is a tightrope we tread everyday, not too much this way, a bit more that way; a constant balancing act.

So we honored Joe these past two nights, and now it is Tony and David's turn and their road to college.

Joedance Film Festival 2010

Last night marked the beginning of the Joedance Film Festival 2010 to raise money for Rare and Complex Cancer Research at Levine Children's Hospital, where Joe received all of his care. It was night of family and friends gathered in our courtyard to watch "An Education". The weather held up until show time and then it came down in buckets. We rescued the tables, food and chairs and ran for cover. Our neighbors Dave and Deb graciously opened their home and we gathered there to watch the first of what we hope to be many years of films at Joedance.

Later that night I opened the unassuming brown paper covered box set out for donations that Whitney made and sent with her husband Cam; who by the way helped Mike cook the hot dogs; and found the first checks written for Joedance. Each one given with love and hopefully will help another child be one step closer to a cure. We cannot bring Joe back but we can honor his devotion to raising money for bone cancer research which is horribly under funded. Thank you to everyone who has supported our efforts to carry on his mission.

Tonight the skies are Carolina blue and no rain within miles. We will cook hot dogs, eat popcorn and watch "Big Night".

What A Day

Grief counseling, the dentist and clothes shopping with two 17 year old boys in one day: Torture! Seeing Inception with my family: Truly wonderful!

And The Third Goodbye

Our family has nearly become professional at "spreading ashes". Anyone who knew Joe would not be surprised that he had precise requests of where and how his ashes would be spread. His first was for some to be kept with us in our home so, as he said it, "I can always be close to you". Then there were three other locations dear to his heart: McCallie, Holden Beach, where we spent a week every summer, and the last was Charleston; the place where he spent time with his friends.

So this past Sunday, in Charleston, I stood in Josh's kitchen after cooking four pounds of spaghetti, roasting two chickens and making a huge salad vividly remembering the first time I ever cooked for his friends. It was after a swim meet when we were living in Knoxville. They came to our house and devoured the food, just as they did Sunday night. Each of them started telling stories of when they had their first "Restaino'' dinner and the flood of happy memories came back. There were so many over the past years and we were thrilled to cook every one of them.

So I leaned on the counter donned in the yellow apron Joe gave me for Christmas and felt peace.

Bittersweet

David has returned from St. Andrew's Scotland full of stories, many of which he wrote and shared with us. Tony was down in the dumps since he has done nothing but move furniture for the past three days. The sweet of the bittersweet is the boys are back under our roof again and dinner was around our new table.

The bitter is Sunday. We will climb in the car and head to Charleston to spread the last of Joe's ashes. Many of his friends will be there and we will spread them, per Joe's request, at dawn at the Battery. Once again these McCallie Men have stepped up to the plate and given of themselves even when it was not convenient. That is the sweet of bittersweet.

So I will cook Joe's favorite meal Sunday night, which happens to be spaghetti, at Josh's house. And we will remember Joe.

The Little Gestures

Today we spent most of our day "changing things up" in our home to make us feel more comfortable, or maybe it is a way to take our away our pain. But never-the-less it was a day of moving furniture and, in the back of our minds, a day of making sure David arrives home safely from Scotland. We were exhausted from moving furniture up and down three flights of stairs.

And then the gesture of kindness came across in an email. A neighbor had left over food from a party they had the night before and extended an invitation for dinner. Tony was off to a movie with his friends and we had no energy to cook. So the invitation was a life saver.

Those kind and, yes, even random gestures are so welcomed and appreciated.

The Difficult Ways to Give Back

Today I sat on a panel of parents talking to nurses and social workers at Levine Children's Hospital to discuss transitions, mostly meaning from doctor's offices to the hospital, or from unit to unit within the hospital, or from surgery to the floor. We each had to tell our story with positive and negative experiences. I sat on a panel with two other mothers, their stories were ones of recovery, mine was not. My story was about a death after so many recurrences of cancer. I felt the overwhelming jealousy of how fortunate they were to have their child survive. I asked, why was I here?

Eventually I knew my position, I knew my purpose. I was the voice of teenage cancer patients. I was their advocate and could speak from experience. I had the perfect platform to make a difference. My voice stated meek and crackling but soon sounded strong as I felt the passion of wanting to give back. As difficult as it was it was perfect.

Decisions and What We Do

This weekend was all about decisions. After emptying the storage unit we had a late dinner with Tony and moved into a conversation of what has influenced our decisions during our lives. Mike I talked about our choice of college, moving for jobs, buying and selling homes. Tony talked about his search for a boarding school, how he was set on a school in the Northeast, but stepped back with the news of Joe not responding to his chemotherapy. He paused, and thought if I have a chance to go to McCallie and be with my brother I will.

So I don't know how we have been so fortunate to have three sons, who understood the meaning of making a decision, without talking, but knowing this is what you do to be there to support each other.

I am sure with other circumstances decisions would be different. You never know. But this is how is worked for our family, and we have felt the incredible strong support from every one that has crossed our path. Yes, decisions made in the moment can be powerful. As were Tony and David's.

His Buttons Would Be Bursting

There is nothing like a big brother. One that is so proud of his younger brothers, who took the time and energy to make sure they got it right, whether it be their academics or their sport, or maybe just living in the world. That was Joe from the time Tony and David were born. He took them under his wing and nurtured them with humor and loving care. Yes, there is nothing like a big bother.

And now we are on the road to college for the twins. One will most likely find a college that has the perfect curriculum and a place to dive, the other may attend a college overseas, pursuing his love for writing. Both will follow their passions and find their place. And the combination of us being willing to let them go, and with the past guidance of Joe,Tony and David will find their way with a comfortable feeling to achieve accomplishments way beyond their dreams. This is a wonderful, exciting time for Tony and David and Joe's buttons would be bursting with pride.

And So It Goes

The days run together, we adjust and re-arrange, moving this thing here and another thing there, but always coming back full circle to what is bothering us most, the loss of Joe.

I think the hardest part of a loss is sifting through their belongings. In Joe's case many of the possessions are from his childhood and adolescent years, most certainly there are not collections from his adulthood. But still they were his, and meant so much to him over the years. As much as we want to keep everything we are faced with the daunting task of what to hold on to and what to let go. And as we go through his clothes, his gifts from graduation, his notes from every class he attended and his books, oh yes his precious books with notes written in the margins of the pages and important quotes underlined, forces us to discuss every item in low quiet voices. Then we find something hidden in a box and a story may start with the clay turtle he made in sixth grade which then progresses to the pottery class he took at McCallie.

It becomes a time of laughter and tears and the joy of remembrance. A continuing celebration of Joe with us being on the exclusive invite list.

Paper work

Oh the drudgery of it all makes my stomach turn. A simple task of changing insurance companies becomes a monumental feat of defying the odds of faxes disappearing into black holes. You keep your fingers crossed that so-in-so with the perky voice will actually receive the information. But then there are the multiple phone numbers to call, every one to a different person with a specific responsibility. What ever in the world happened to one phone call, one piece of correspondence and an hour later your done.

So after sifting through all the calls, and I am holding my breath they received my fax, it will be worth it since I am saving a bundle with my new insurance company.

The Adventures of Tony

I am not sure if many of you know that Tony was diagnosed with Type 1 diabetes four weeks before Joe was diagnosed with osteosarcoma. On the same day Tony received his insulin pump Joe had his chemo port inserted. It was a wild time for us and our introduction to Carolina Medical Center, which at the onset we had no idea this would be our home away from home.

So with that background, we fast forward to this evening when I received a call from Tony that his site had "popped" out during dive practice. Not a big deal at McCallie since he is just a few steps away from his dorm and a new site. But this time he was several miles way, but he drove slowly, we kept in touch by phone and his sites and insulin were on the kitchen counter when he arrived, along with a large glass of water. Food was ready and prepared and in a short time he was normal. He was home safe.

What to do with this....

Thirty-three years is a long time together, but it seems even longer when you realize how much you have accumulated. We have a house and a storage unit full of possessions. Some are very special, but there are other items we have no idea why we kept them. So today our one and only goal was to sift through items in storage. What we thought would take a mere two hours turned into a long day of memories and so often "what were we thinking when we purchased that". I won't embarrass myself by detailing those items.

But I will tell you that most of what we uncovered were boxes and boxes of photographs. Now those were worth saving.

Free Falling

I am without a parachute, free falling and screaming into a dark abyss, awakening in a sweat that chills me to the bone. It is a crash day, a recurring cruel joke played on me. I awake in the morning ready to go, then there is the cold smack to my face reminding me of what has passed, what is gone, what will never be again. I am frozen and then it starts: my heart racing, the pain in my shoulders as they take the familiar tight position and color drains from the world, leaving me in the coldness of black and white. I breathe (I have been told that helps) or I cry, and sometimes I do both. So I move forward, with my broken heart and a heaviness in my gait.

Did We Do Right

Boys don't talk much. They show emotions in different ways, mostly a quiet way. Saying something quickly, or writing a note to be found later long after they are gone, and I have yet to encounter lengthy emotional conversations. Well, at least with my sons.

But today I was given the incredible gift of a peek inside of what is like to lose a brother, a dearly loved brother, in a most unusual form: a college essay. From the first sentence to the closing paragraph I relived these past years, not from a prospective as a mom, but one of a brother. Tony and David grew up in warp speed over these past five years. I don't have to ask the question if they are different now than nearly five years ago; I see it in their eyes, their conversations skirting around our collective hurt and loss, and the polite smiles on their faces.

I have asked myself repeatedly was it right for us to bring Tony and David into every twist and turn with Joe? Some days I stand firm with our decision, and other days I waiver. But what I do know, without question, is I felt every painful memory along with Joe's brother.

Traveling

This goes back a bit to when David and I started out to Athens, Greece. We sat in airports, thanks to free tickets, for over 13 hours. I eventually resorted to people watching out of shear boredom. Yes, the outfits both male and female, changed drastically from Charlotte to New York to Heathrow to Athens. Just a word of advice...ditch the car, find a bike or walk because everything skinny will be hitting our shores very soon.

But even though the fashion scene was entertaining what was not entertaining was witnessing "cell phone" relationships. I know this sounds funny but I actually saw people caress their phones, holding on to them for dear life. I saw one person look at her phone when the ticket agent asked her a question, as if the small black screen would give her the answer. Then there are the glancers, you know the ones who look every several seconds for the text, tweet, facebook post or email. Then I panicked. I was holding my phone in my hand as if it held all the answers to my questions. I slipped into my backpack since I don't want to hug a phone. I want to hug my family.

Jolted Back to Reality

First off it is a very bad idea to schedule a dentist appointment the day after you return from a great trip. That one event started the ball rolling and my jolt back to reality. Ironically just because you are out of the country doesn't give a free pass on bills, laundry, work or grocery shopping. I lived in a cocoon for nearly three weeks and forgot the drudgery of it all. OK, I admit I was in heaven.

So these past days I have pushed my reluctant butt through my chores with one astonishing realization. How can I have this much laundry since we each traveled with small backpacks and wore the same thing practically every day? So my laundry cloning theory is no longer a theory! It happens quietly in the dead of night in the dark corners of the dirty clothes basket. And the evil sock stealer is not in our imaginations and has made permanent residence in the dryer.

Home Again

I signed out on June 16th and 20 days later I am home again, feeling the comfort of my bed and the familiar surroundings of home. This journey is hard to explain since we were retracing Joe's trip. Emotions ran from total elation to tears, and when we were lost trying to find places Joe had been I always felt a gentle nudge on my shoulder pushing us in the right direction.

Between Joe's journal entries and a backpack full of receipts our itinerary was set and easy to follow. We brought home nothing more than hundreds of pictures and incredible memories, hopefully the combination will bring us closer to healing.

Heading Out

Our bags are packed and we are getting out of Dodge! Next stop is Athens, Greece to visit friends, pick up Tony and move on to Venice. I will blog when possible, but you all know this will be the trip of our lives. Twenty days in Europe with back packs and hostels!

When The Tables Turn

I was wondering months back if there would ever be a way for me to pay it forward. Would there ever be a chance for me to be a "MaryKay" to another family? Would I have the opportunity to hold their hand and receive their phone calls with complete understanding of the overwhelming fear they are feeling?

Sunday opened the door of opportunity and I seized it knowing full well this family, whose son was just diagnosed with cancer was adrift, without oars, in an ocean without any sight of land. I grounded myself, just as my friend did for me, listening to this mother's fears, offering advice and shedding tears with her.

I don't like being part of this club of knowing about chemotherapy, of percentages for survival or of keeping a "drug log". But I am, so the best I can do is help another family navigate these treacherous waters.

On the Edge of My Seat

It was a flurry of last minute details but Tony successfully navigated security with his pump, sites, needles and insulin to board his plane for Italy and Greece. David spent the weekend in Goldsboro celebrating his roommate's birthday and will return Sunday. Mike and I are tying up all the loose ends before leaving for Athens where we will meet up with Tony.

And then our trip will begin. After months of talking and planning we are finally going. I have a bit of Joe's ashes that I will toss over my shoulder in his favorite places and his picture in my locket. Joe will be with us every step of the way.

Taking Me to My Knees

Maybe it is a song, seeing a book in a young child's hand, a sound of a familiar response to a question; the sum adds up to a moment that takes you to your knees. You try to recover, but in your exhaustion of always being sad the coping skills are less than sharp.

So you start down a slippery slope, with one thought leading to another until you feel as though you are facing a daunting wall of second guessing, the fear of "could be's and what if's". The loneliness of wandering through uncharted, and certainly not requested, waters. It comes down to the shear strength of fighting back tears and trying to focus on the task at hand.

And when we feel like we will not recover, can't move another step forward, somehow we remember the best times of our family. The laughter, the jokes, the funny cards, the hugs and our love for each other. Yes, that is what brings us back to life every time.

The Girls

Do you ever have a night where the weather is perfect, the moon is out and stars are shining brightly in the sky? The dress is perfect, your skin is glowing and your hair is better than it was on Monday; this must mean "girls night out". A time we leave our worries behind of sweating through grades, learning how to adjust to new children and grandchildren, dealing with creative accounting, illnesses; and in my case a death.

Donning our best manners we dined on sushi and wine before attending the play "Girls Only". And we laughed, I mean really laughed, as they poked fun of growing up and growing old. I laughed more in an hour and half than I have in the past four years. Have to say it felt good.

Another Goodbye

Once more we spread Joe's ashes in a place that is dear to our family and a place we spent summers since we moved to Charlotte; Holden Beach.

Arriving at the point of Holden Beach we were met with a beautiful Carolina blue sky and a wind blowing straight into our faces. We toasted Joe with Jameson followed by a chaser of Guinness and celebrated the wonderful memories we had shared on this spit of sand called Holden Beach. So we rolled up our pants, and me hiking up my skirt, waded into the surf, bending close to the water as we gently placed his ashes into the ocean. We sat on our blanket and watched the waves carry my son out to sea, a place he always found peace and happiness. I hugged my dad, my mom, both who had tears in their eyes, my boys and Mike.

It was time to go and we did. As we left I asked Tony and David to pick up shells. All three of the boys did this whenever we went to the beach in the past. In the typical teenage way they searched, discussed, discarded and decided on the best five shells. These are shells I will treasure forever.

Friends

I attended a McCallie Alumni and Parent luncheon Wednesday, and a new graduate talked about what McCallie meant to him. The one idea that stuck with me was the friendships he developed over the past four years. I remember and know now how important those friendships are for the boarding community.

All through Joe's treatments in Charlotte there were times that tugged at my heart, broke my heart and shed tears from my heart on our front porch. Joe's teachers, his swim coach and boys in his class went out of their way, sometimes many miles out of their way, to stop at our home for a visit. And Joe in his courageous manner would always step up, pushing aside his exhaustion and pain.

There was never a more gracious outpouring of love and devotion demonstrated by Joe's friends than at his services in Charlotte and at McCallie. They, without question, put aside what was important for them to support our family, but it did not stop at Joe's funeral.

On Mother's Day I received a call from a close friend of Joe's, I receive text messages from his friends, and this past week I had dinner with one of Joe's friends from McCallie in Charleston. It is always a connection to my son who is gone, a time to talk about Tony and David and an opportunity to catch up with the guys who were a part of Joe's life.

There are many binding friendships at McCallie. One is classmates, another is faculty and students, but for the parents it is our sons and their friends.

Let Summer Begin

The boys are home, after a safe drive from Chattanooga and filling our extra room on the lower level with their belongings, along with some of their roommates clothes left behind. Tonight our table was transformed from us having a quick bite to a two hour round table of constant conversation.

For a moment I felt that hollow place in my heart be filled with joy and hope for Tony and David's futures, reminiscent of the times Joe would return full of stories of the school year and what was to come.

Having always loving to hear Joe, Tony and David's chatter at dinner, tonight I was lulled into a comforting place being surrounded by that sound once again.

A Slice of Heaven

We spent the weekend with friends at their lake house. It was a so enjoyable to be away and we are forever grateful they shared their slice of heaven with us.

We returned to Charlotte Sunday night to face the daunting task on Monday morning of sorting through Joe's belongings we have had in storage since we moved here five years ago. Our bodies ache from the pain of unpacking his memories. I came across a box filled with everything that happened in his first year. In this box was a letter from my Grandmother passing on a ring to the sixth generation of grandsons, his cards from well wishers when he was born, his Christening shoes, the shirt Mike wore when he was born bearing his footprints, the t-shirt my mom bought for him in Paris, my first Mother's Day card and Mike's first Father's Day card. We stood under the cold overhead lights of our Public Storage unit holding each other tight and cried.

But then we uncovered his water color paintings, his pottery, his notes from school, his letters written to us and pictures of him with Tony and David. So our tears dried up since we realized he left us his slice of heaven.

Crossing T's and Dotting I's

Even with as much time we were given leading up to Joe's death we still missed some of the obvious. This past month was one of the most glaring and today we corrected the oversight.

To make a long story short we had Joe's ashes separated into three boxes, to be spread in the places of his choice, and one urn for our home. It finally dawned on us, I mean all of us, that we had one urn, and what would Tony and David do after we are gone. Would they pass it on to each other at holidays? Would one have it for six months and the other for another six months? Joe wanted part of his ashes to be with us, so today we made it right.

We gathered his remaining ashes and returned to the funeral home. Within a short time another urn was filled and the remaining ashes were re-wrapped for us to spread at Holden Beach and Charleston. When I retrieved them they asked if they could carry them to the car. I declined, hugging the bag tightly. Tears were in my eyes, my voice was choking and I rubbed the boxes eerily reminiscent of how had rubbed his back as a child.

So Joe you will never be far from your family and we will never be far from you.

Glee

I haven't written about my most favorite show Glee for a long time partly because it was a very special time for our family during Joe's last months. But this show ranks high on my list along with MASH, Seinfeld and Will and Grace. Each one takes a look into our most horrendous fears with fined tuned humor, allowing us to see how incredibly small we can be and then showing us a way to be forgiving in our daily lives.

Tonight Glee was about being different and finding the strength to be true to yourself. A hard lesson to learn, especially in high school. But to trust in yourself, with the hopes your family and friends will watch your back, is a leap of faith. And we take that leap everyday, sometimes stumbling and losing our way, but eventually circling back to our true self. The celebration in the end is those who accept and love you for all your glorious attributes and also your warts.

Graduation And Duffel Bags

We returned to McCallie this weekend for two reasons. One to deliver the all important component for Tony and David to pack up their room, the "duffel bags"; and to attend Graduation.

This is always a spectacular event with the graduating McCallie Men dressed in navy jackets, school ties and white pants paired with the look of promising futures on their young faces.

Our last attendance was for Joe. The week before he had just finished five straight days of chemotherapy in the hospital and his blood counts were dropping every day. There was a question of whether he would even be able to make the trip and I remember the air of tension in our home. The day before we were to leave his counts started to rise. One more check the morning of departure and we were given the green light. We headed to McCallie.

Joe walked proudly with his classmates, but he did not share the same future. His was one of what could be accomplished with the little time our family knew he was given. Joe's decisions, as were ours, were how to spend the time wisely.

As he walked on stage, holding his bald head high, first the Dean then the Headmaster hugged him as they slipped him his diploma and the Campbell Award. Slowly one by one his friends stood and clapped until everyone followed suit saluting Joe with a standing ovation. No pictures are needed to remind me since I can clearly see that ovation now as I did that day.

Today watching Joe's friends, that by the nature of McCallie have become Tony and David's friends, walk at their Graduation was an honor. We wish the McCallie class of 2010 good luck and godspeed.

Those Who Save You

There is a vortex of grief that pulls you down and then an opposite force lifts you up. I think of my gal pals, who would rather be sleeping in the early morning hours, rise and meet me for a walk. It is my neighbor who hugs me on her steps knowing attending the McCallie graduation will be hard. It is our friends across the street who always stop and ask how we are doing. It is the Blis girls that have forever thoughtfully included us for every party and celebration. It is my neighbor Mollie that stood by our side for four years and every day since. And there are no words to explain the support and love from my Mom and Dad. The list includes everyone who calls, emails and sends cards.

But I always wonder about those who can't look us in the face. The ones that avoid us, pull back when we talk about Joe, as if he never existed. The ones that enter that uncomfortable zone, not knowing what to say or do.

It is not what is said, or not said. It is the hug, the smile, the invitation, the inclusion that is comforting. The acceptance that we are different, but still the same.

The Loneliness

Joe gave us his travel journal just before he passed away. Part of the reason was he wanted us to retrace his trip. Through meticulous notes of where he visited, where he stayed, and of course of what not to do, especially in France, he gave us a road map. But the underlying theme was always how alone he felt. He would write about how Tony and David would like this, or how we should definitely see that, or how he wished we could see the incredible waist high yellow flowers he walked through. He wrote about his sense of escaping, being in a place where no one knew him or of his cancer. But it always circled back to his family.

This summer Tony, David, Mike and I will retrace part of his trip. We will stay in the same hostels, we will walk the streets of Venice, go to Lake Como, stay at Balmers in Interlaken, and have a beer in his honor in Munich. We will feel his hand on our shoulder with every step.

The Mixed Bag

There are times in your life when sadness and joy collide. It is Tony calling us after receiving a phone call from a dive coach of his first choice for college. It is David's acceptance to St. Andrews, Scotland for the summer writing program, one of only thirty students. It is my niece earning straight A's after returning to college to pursue a new career.

It is the memory of Joe, who would be so proud of you, always wanting to be there to celebrate your accomplishments. The Joe that worked harder than any of us, under less than the best of circumstances, who had his memory wiped out by chemotherapy and taught so many of us lessons of a simpler life. Yes, he would be now and forever rejoicing your achievements.

New Beginnings

Our weekend was filled with celebrations. A graduation for a mom from Seminary who worked for her degree over several years, a baptism for a set of twins, and a college graduation of a friend's daughter that has achieved her dream to attend the USC masters program in Film Studies. Each of them starting a new chapter in their lives, with all the promise and hope of the future, and I teared up through every party and ceremony. I cried for Joe and his dashed dreams.

But through the flurry of all the celebrations I remember two acts of kindness. First the gentle and loving hug from Mary and second the comforting embrace from Joe (not my son but a friend). Both were powerful enough to be chiseled into my memory and allowed me to cry.

The Under Current

The underlying tension, running like silent waters, eventually puts a strain on all of us. Just when you least expect it you are pulled into the current, and as tempers flare in the heat of anger, you fight to be back on an even keel.

In the end, with our heads above water again, where we directed our anger was nothing more than a camouflage, a distraction, a defense mechanism of our true feelings. They way we were is our only desire.

Not Alone

Today I heard a friend of mine lost her husband at the age of 49 of a heart attack. Her son held him in his arms until he died. He was 19 and most likely older today than he was yesterday.

I don't know if it is easier to watch a loved one die over years, or lose them suddenly. I know with Joe we had time to talk, express our love, but still at the end it was not easy. The truth is no matter how it happens it is gut wrenching and painful.

So to everyone who has lost someone dear suddenly, or through a long illness, my thoughts are with you. Especially today for Susan and her son Sean.

Mother's Day

This day, which in the past has been an opportunity to reflect on the joy my sons have given me each year, is now mixed generously with sorrow. I have been the recipient of cards, poems, letters and even some interesting jewelry, always treasuring them and tucking them away for safe keeping. My tradition was to read previous cards before adding the new ones to the box. I could not do that this year. I can't even bring myself to open the box so these cards are in my dresser until I have the strength to add them.

I did receive dear cards and emails from family and friends; but the one missing is from Joe and causes tears to roll down my cheeks. I don't even try to hold them back. I silently repeat to Joe how much I love and miss him. Then I close my eyes remembering happier times and how thankful I am for Tony and David.

Floating On Air

Just when things are the darkest, which I have been struggling with the past few days, an email pops up in my inbox and changes my day for the better.

This past week David has been frantically shipping transcripts, recommendations and a personal statement to St. Andrews, Scotland for their Creative Writing Summer Program. He has wanted to do this for two years but, for very obvious reasons, has always been pushed to the "back burner". Today the email related the news he was accepted.

I am so proud of him as he takes a step closer to living his dream of being a writer.

Better Days

I am grateful for better days. Today was one of them. I attended a Family Advisory Committee meeting for the Levine's Childrens Hospital this morning, walked with a friend in the afternoon, ran errands and corresponded with the Headmaster, Kirk Walker, about Joe's scholarship fund at McCallie. It ended up being a productive day.

So my goal, starting tomorrow, is be productive. Whether it be doing the chores that I loathe or the things I love, my mantra is keep moving forward and connected. Long days in the our home allowing flooding memories only takes me under a cloud.

I will concede to my grief and permit myself to rejoice better days.

Transforming A Room

We dismantled Joe's bed. The one we spent so many hours sitting on the edge, holding his hand and talking. This bed has been where I kissed him good night since he was 5 years old. This was the bed where he decided not to do chemo therapy again, hoping that surgery would be the cure. The bed that I sat beside and the rest of the family slept on the floor before he moved into our room. I want to saw a bit of that bed off to keep beside mine.

Treasures

Twenty years is a short time to collect memorable artifacts that mark milestones in your life. But in a small box in my dresser drawer are Joe's treasures. His class ring, Cum Laude cross, the pen knife for the Campbell Award; the second highest award given to a graduating McCallie man. Of course in the box were the St. Christopher's and St. Michael's medals given to him from a dear friend and family. And the special the Air Force wings Johnny gave Joe at his last Chapel talk. Each were carefully wrapped in tissue and tucked away. Several times a week Joe would ask me to pull them out and he would slowly peel away the tissue paper proudly holding each one.

Today, as we take our first step of sorting through Joe's belongings, I took his treasures to the Holt's shop to have them framed. The shadow box will sit proudly on a shelf among the many books he collected over the years. What was amazing is that I could hold his dearest possessions in one hand.

Familiar Faces

Familiar faces help us get through our grief. It is the friends that have known us for years, the ones you don't have to repeat the past or catch them up, and the ones who just know because they have been by your side. I call them them the comfortable shoe. And they are the ones we continually return to for support.

Mondays

Normally Monday is not my favorite day of the week. I don't know why but this Monday is different. Maybe because it is not raining and this morning was especially beautiful, or it could be my to do list was only one page. Was it that I finally slept through the night for the first time in years? Or was it our long discussion yesterday about the past four years and Joe's death, using a full box of Kleenex each to wipe our tears, the cause of my new Monday attitude?

Whatever the reason, and without over analyzing, I enjoyed this Monday.

The Regatta

As wonderful as it was to see Tony and David, the weather was horrendous. Rain, rain and more rain! My mom made the trip with us while we left my dad behind to nurse a cold. Again we forgot the binoculars, but our feet remained dry until David's boat went off in the midst of the last torrential downpour. His coach, with the up most graciousness, allowed David an early release so we could grab a quick dinner before we headed in different directions, giving us a precious time with our sons to catch up and sync our calendars.

A round trip from Charlotte to Oak Ridge in 24 hours gives you time to reflect. Images of driving Joe to McCallie, David's regattas and Tony's dive meets filled my head. I remembered his anticipation, wanting to be a normal teenager and be with his friends. Sometimes he was chatty, but the real routine was solemn quietness followed by a tearful trip home.

His Chapel talk in September 2009 was his final visit to McCallie and as we drove back to Charlotte, with seven oxygen tanks in my back seat, we discussed his funeral service as we both tried to be brave. And this I will never forget. I glanced over to my son, only able to breathe with the help of oxygen, squeezed his hand and promised he would never be alone.

Walking With My Pals

Tuesday and Thursday mornings I walk with my "Gal Pals". No attendance is required. Whoever is there walks, if you can't make it, we miss you and look forward to the next time. We all are dealing with hectic schedules, teenagers, college decisions and whatever life throws at you, so making a morning walk stressful is definitely needless.

I look forward to these walks every week, and though the concept is in it's infancy, this spoke in the wheel of my recovery gains importance at every step. It quite simply may save my sanity. Grieving is painfully draining, both physically and emotionally. There are days I just don't know how I will face one more hour of missing Joe.

But twice a week, with my "Gal Pals", we walk, talk, laugh, hug and for me this falls in to the column of what helps.

Back In Time

Today I delivered gifts donated by Blis, the uptown gift shop where I work, for the kids on the oncology and hematology floor at Levine's Children's Hospital.  I stepped back in time, only this visit was without Joe.  I was there alone, without my son and only carrying a bag of gifts.  I had never been to the"11th" floor without Joe.  The only time we visited his oncologist office alone was when he told us Joe was dying.

I saw his favorite nurses today, his oncologist and the visit was filled with hugs and questions of how we were doing.  It felt good to see the incredible people who took such great care of Joe.

So maybe, however gut wrenching and painful this visit was, going back in time may help us move forward.

With A Little Help From My Friends

This great lyric from a Beatles song, that has been used over and over for years, fits so many situations. For us the description encompasses everyone who gave and continually offer us your friendship asking nothing in return.

It is an email, letter, card, phone calls, invitations to dinners or events. You see the dark cloud pass over our faces responding with a gentle hand on our shoulder, a hug or a joking remark in effort to pull us back to life. Each gesture is given with love and understanding, never trying to explain how you know our feelings.

So everyday we a get by with a little help from our friends and family. Thank you.

That Thing Called Sarcasm

Over the past years we have been complimented on our courage, our humor. our resilience, but in truth we were camouflaging our feelings. It was our way of covering up, a great lesson we learned from Joe. The way of the game was not to let anyone in to our pain. So we would filter the news of every scan or doctor visit, not letting anyone know how bad it was. Protect yourself from the inevitable at all costs. We became pretty good players covering with our sarcastic humor and brave smiling faces until we couldn't any more. Joe kept playing the game while we silently stood on the sidelines dealing with the truth.

We drove to Chattanooga to be with Tony and David. This was the first time we said the words "Joe is dying", and in the deafening silence I searched for my sarcastic humor armor. We would all eventually suit up again, resume our humor, laugh as much as we could while hiding our true feelings behind closed doors.

It is just easier this way, so we will continue to play the game awhile longer.

I'm Not Losing My Mind

When driving to and from McCallie without the boys I always listen to NPR. Six hours of NPR can be daunting, but over the years I have found it to be very informative and when I travel alone it is like having company along for the ride.

During my latest trip, while listening to Fresh Air, I learned I am not losing my mind. Good gracious what a relief. Apparently, starting at the age of 30, we lose our focus and it has everything to do with the frontal cortex. The explanation became very medically detailed of course losing me along the way since I was not using my frontal cortex. The bottom line is we are not slipping into the darkness of dementia or Alzheimer's.

So we can relax. If you can't remember a person's name, or when landing at the bottom of the basement stairs you forgot the item you wanted to retrieve, or even recall what you had for breakfast, there is no need to worry. Now if I can only remember how they told me to engage your frontal cortex I could help you.

Talk About Memories

Tony had an outpatient procedure today and talk about bringing back memories! Ironically, no matter what state your in, the questions are the same as is the parade order of nurses and doctors repetitively confirming the procedure. Being "frequent flyers" in the OR we received quizzical looks during their explanations as we lackadaisically nodded our heads. I was more concerned about Tony's blood sugar. I know, by heart, the drill regarding everything else.

Tony came through beautifully, rested most of the day and we will watch the return of Glee tonight. A great way to end a long day.

Things Lost, Then Found

I thought about the saying I would give anything, or maybe lose everything, to relive a moment; or my case another day, an hour, even a minute with Joe.

Honestly, and selflessly, I want to keep everything and also have Joe. Our family has been strained. The laughter, that in the past came so easily, is forced and the bantering is less than entertaining. We tiptoe around our feelings always keeping the rawness of our grief in check. Trust me this is the showdown of all times of who will crack first and honestly it is usually me. We stumble through our transformation, holding on to each other for dear life.

But last night, with the help of a funny little game called Table Topics, we pulled card after card giving us an opportunity to talk, remember and laugh. It was a glimpse of what was and what will be. In a word, hope.

Goodbye, One More Time

We leave in the morning for Chattanooga, rendezvous with the boys in the afternoon and head off to the Nichols lake cabin, which they have graciously offered to us this weekend. I know our family will need this time away since Sunday morning we will be spreading part of Joe's ashes in Chattanooga.

So we will say goodbye to our dear Joe one more time.

Bring On The Classics

I am breaking up with my leggings. The passion is just simply gone and with spring upon us I feel the need to move on and back to the classics.

Nothing like a crisp white shirt, straight leg jeans, driving mocs and your favorite "CZ" diamond studs to make you feel fresh. From the back of my closet I am collecting my summer dresses, kitten heels, t-strap sandals and the straw handbag. Black, black and more black will not be my staple for the warmer months ahead. It is time to lighten up.

This morning I bid my leggings farewell, thanked them for the good times and confidently buttoned up my white shirt. I am giddy with anticipation and feel wrapped in the comfort of my classics.

A Night Out

Sometimes the best medicine is a night out.

Last night we saw Jersey Boys, and hopefully this won't reveal our ages, but the music propelled us back to a simpler time; before juggling careers, children and paying the bills. I could sing every word of Frankie Valli's songs and most of them reminded me of significant times in the past. Music has a funny way of doing that, you hear a song and suddenly you are reliving that moment.

It was two hours of fun and definitely what the doctor have would ordered.

Easter

I sat in the long pew with my family thinking about Easter and how this is the holiday of hope and renewal. But as the sermon began I was shaken to the raw core of my emotions. The Minister spoke of death, specifically of tragic deaths, the ones that leave us wondering and searching for an answer. My first response was why are you talking about this? And do you have any idea how you have moved me from my already shaky ground to a cliff where I am teetering on the ledge?

But the message twisted and turned to the point of understanding, that no matter the length of time, we are here for a purpose. Sitting beside Tony and David, so handsome, smart and on the brink of pursuing their future; I took time to recall our Easter Sundays in the past. I could see Joe's face as a child, his smile, bright eyes and the love he had for us and we for him.

I felt hope, sadness, joy and for the first time I remembered Joe before cancer.

Wishing you all the joy of Easter.

The List: Things I Dread

I have a top ten list of things I dread the most.

10. The yearly physical. I am always afraid my Doc will discover, despite my description of a healthy lifestyle, all the tests will reveal the opposite.

9. Taxes, they make me break out in a sweat and no organizational skills will ever relieve the last minute digging through drawers, files and even my wallet to find all the information I need.

8. Putting gas in the car. Could some one please come up with a car that just runs forever without having to stop?

7. Laundry is the most mundane task in the world. What is inspiring of taking items out of one tub and putting it in another? Then folding and putting it away--only to pull it out of a drawer and start the whole process again.

6. Cleaning bathrooms especially with boys in the house. Do I need to further explain this?

5. For now holidays are the worst.

4. Doing dishes and I thank every day Mike finds this therapeutic.

3. Hot weather, and I mean the oppressively southern hot climate.

2. Buying shoes, or should I say finding shoes that don't hurt my feet.

1. Saying goodbye to Tony and David, hugs and all, as they climb in the car to return to school.

Yes, that is my number one dread.