Dear Joe,

Happy Birthday Sweetie Pea.
Love you lots, Miss you tons.  Mom

T-Minus Two Days,

December 19th and two days from now will be Joe's birthday.  He would be have been 23 and God knows what he would be doing now.  But I miss him and always wonder what could of , should of have been.  A friend asked the other day how I was doing.  No, I cannot say I am doing well with his birthday and the holidays so close together, but I replied I am keeping myself busy.

But really what I have done is found a cause bigger than me and my grief.  Joedance Film Festival has filled a void, given me a reason to get up in the morning, put a positive foot forward and engage with so many talented people, who by the way never knew Joe, but believe in the cause. We never had control over Joe's cancer, but we have control of how we remember him and raise awareness of rare pediatric cancers.

So yes I have kept busy but this year with a purpose and I thank everyone who has been such support to our family these past years until we found our way.

Leah

The box comes every year just about the same time in December.  It is from Leah Moir my dear, sweet  friend who lives in Knoxville and ironically the first friend I met when we moved there.  And every year it is three ornaments and have never been the same ones the past three years.  The first set was stars, then crystal crosses and this year silver bells.  In the box is always a note of how she searches until she finds just the right ones.

After Joe, Tony and David's ornaments are hung I take my time to put each one on the tree.  Just as she searches for the right ones in remembrance of Joe and our family I hang them with the same feeling.  And long after Tony and David are gone on to their own homes our tree will be filled with Joe's and Leah's ornaments.

Leah's jester of love reminds me how important friends and family are, not just during the Christmas season, but all year long.  Thank you Leah for your beautiful gift every year.  

I Never Thought

When we started Joedance three years ago I never thought I would be in the office talking to one of the largest  food producers in the country asking for a donation for Joedance.  Who knew that just two blocks from our home was a flour milling plant that produces enough flour to support local and national businesses.  Most of the wheat arrives every day from North and South Carolina and is distributed to local bakeries, Lance, Dunkin Donuts and local grocery stores.  Who knew that I would meet Kevin Caudle, a Chemical Engineer fascinated by the food industry and wants to be a good neighbor to the 4th Ward neighborhood.

Who knew that twenty-four hours after our meeting Kevin and his company ADM would sign on to be our Presenting Sponsor.  Who knew that this would all happen in memory of Joe and in support of our family that has struggled with his loss as we work to raise awareness of rare and complex cancers.

Well, I never thought so many would want to be a part of Joedance and I still ask who knew we would be where we are today?

One Long Weekend

No, this is not what you would expect form me.  I am not going to go on about me missing my boys,  even though I did every minute of this Thanksgiving weekend.  This long weekend was about making decisions, extending invitations, working on sponsorship proposals, searching for numbers regarding funding on the National Cancer Institute webpage and finally setting the Joedance Board with the last two members:  Sarah Cook and Will Davis.  It all came together during the long Thanksgiving weekend.

I am overwhelmed and amazed by my Board and Advisory Council.  They have embraced the challenge to make Joedance a premiere event and everyone keeps at top of mind that it was created in memory of Joe.  They support the idea of keeping it local and the money raised is to support Levine Children's Hospital.  Our family is so eternally fortunate to have this much support.

Joedance 2013 is going to be awesome!

Thanksgiving

I really miss all my boys this Thanksgiving.

Catch Up and Catch My Breath

I run from this email to that appointment to the decision of paper for the letter head to budgets to the insurance guy meeting to five year business plans and sponsors packets.  Joedance is in my face, in my life everyday.  But there are no complaints.  This is good.  For everyday I had no control of what would happen to Joe has been replaced with total control of how Joedance Film Festival will be next year and the years to come.  How we will remember Joe, those who have suffered before him and this who will suffer beyond him with rare pediatric cancers.  And the result will be more awareness and funds raised for research.

I am not usually comfortable speaking in front of crowds, it takes a strong summoning of strength from deep inside.  Asking for money is out of my comfort zone but for some reason now it comes easy.  I tend to tear up when I talk about Joe before and after his cancer and the toll it took on our family.  How the odds of him having bone cancer were so slim, the fact of him surviving was even slimmer leaves me drained.

But at every turn there is a compassionate heart.  Another person that comes on board with their support.  And again I am overwhelmed by their generosity of their time and talent. I could not, our family could not do this with the support of all you.   So I summon my strength, I talk about my son and the harsh treatments, I look them in the face saying he died far to young from a rare cancer.  And yes if you support this cause maybe we can find a better way.

Thank you.

Joedance

501(c)3, EIN, Articles of Incorporation, business checking account, Charter for Solicitation, Sales Tax forms.  It is swirling around in my head every night. But this swirl in my head is us making something good out of a very hurtful experience for our family.  One year, two years maybe ten years down the road people will gather to remember Joe and raise  money for rare pediatric cancers.  So I will press on, wade through the paper work, ask for the sponsorships, sell the tickets and every first weekend in August we will show original films with a Charlotte connection.  And every first weekend in August I will introduce the featured film maker but I will always look out to the audience for the familiar faces that were there from the beginning.

Moving On To November

We are at the first part of November and the beginning of my slippery slide.  It  is not having Tony and David home for their birthdays, then moving on to Joe's birthday and the anniversary of his death.   But honestly this year may be better than the ones in the past.  We are moving on to making Joedance Film Festival a Nonprofit.  Tony and David are finding their way and shedding the burden of their grief.  Knowing that this will always be home, but with a price of unhappy memories, we will always gather in Charlotte, at least for the next couple of years.

But for now I am grateful to all of those who gave us their love when it was most needed and for those who are giving us their support  for Joedance.

Julie

There she was walking in Freedom Park taking pictures of the fall leaves.  My walking buddy, my touchstone, my friend.

Today was pleasant  surprise, one I will remember for a long time. A walk with a friend unplanned made my day.  So grateful we met by chance today at Freedom Park.

Hopebuilders 5k

I ran in memory of Joe and tears were rolling down my cheeks.  Dammit when will I run this 5K and not cry?   I suspect it will be a long time.

The Brick In My Pocket

I watched Rabbit Hole last week.  God only knows why I did since it would seem reasonable to steer away from such movies or books. As the movie unfolded the mirror of our grief was playing out on my 27 inch screen.  The weird things you do, the isolation and the private sorrow we take to our rooms, our cars and the corners of the house.

Often the question begs how to cope, does it get better, how do you go on.  One scene in the movie, and I am grateful for the eloquent words, is in the basement after their son's room has been cleaned out, piled neatly in plastic bins has stuck with me and explaining the range of emotions even three years later.  To paraphrase: "It is like a brick in your pocket.  Sometimes you forget it is there until one day you reach in your pocket and you remember."

I go about my day, year after year, and then for some reason I reach in my pocket and find that brick.  And I remember.  One time it will be with tears or another with a smile or an outright laugh.  But the brick is always there and I carry it everyday.

Weddings

We are back on the wedding circuit now that our friends daughters and sons are at the marrying age.  Each one is more lovely than the next and full of joy as the couple start their journey together.  They are young, full of hope for the future, clearly totally in love and in some cases add a bit of humor to an important ceremony.

But there it is, just about the time the groom walks in, that lump in my throat, those tears waiting to escape and my shaky hands.  Looking down and taking a deep breath is my defense against what has been dashed away from my life.  Don't take me wrong I am genuinely happy for every couple.  They have found their soul mate.  But Joe never had that chance.  He was cheated, we were cheated.  I will never know who he would have chosen or vice versa.  I will never see his family.  I will never dance at his wedding.

Mission Statements

As we continue our serious business of moving forward and growing Joedance Film Festival I was set to the task of writing the mission statement.  You know I wanted to go on and on about these rare cancers, how they have little funding, the break throughs are far and few between.  The numbers of those who are afflicted are small, so small that it is 300 or less a year.

And in the end it came down to a few short lines.  Joedance Film Festival raises funds and awareness of rare and complex cancers, specifically sarcomas, blastomas and brain tumors for research and clinical trials.

That is what Joedance is all about and we appreciate your support these past years and the years to come.

Serious Business

Bert Woodard coming on board as the head of PR thrust us into the serious business of Joedance.  We are in an arena of several folks that want to join us in raising money through a film festival for rare and complex cancers.   They are passionate and throw so many ideas at us to the point of head spinning.  But one meeting, maybe it was two meetings, there was a thread of reality;  take it slow and remember why you started Joedance.

We started Joedance because we loved Joe and he loved films.  We started it because we were sad and we wanted a time and place for our family and friends of our family to be together to remember an extraordinary son, brother, grandson, nephew and friend.  We started the film festival to hopefully find a better treatment for osetosarcma.  We continue on to raise awareness of this rare cancer that only afflicts 300 adolescents every year.  We are committed to our son's memory and to those who will benefit from research.

And with your support  we will make that happen.  Thank you and I extend my deepest gratitude for  your time and energy in support of Joedance,

Back to College

David flew off to Scotland on Monday compactly packed in his one small checked bag and two even smaller carry on bags.  He is a light traveler.  A message on my Facebook came late at night the he had arrived and was moved in to his apartment in St. Andrew's.  Tony leaves on Tuesday and will arrive in Chicago after our 14 hour drive.  I will deposit him at a friend's apartment until he can move in to the dorm on the 20th.  

And so starts the second year of college and leaving me to wonder where the time went.  So many had said to me when they were born the time goes by so quickly but that was hard to believe when stuck in those long days when they were babies. And somewhere between the diapers and the diplomas the time flew at warp speed.  Looking back now it seems that just one blink later they are talking about medical school, graduate school and careers.

I cannot control the time flying past me but I recognize the occasional pause as they share their` dreams of their futures. Then a second later they are off to another topic.  Yes, it is on to the second year with a snippet here or there and the  comfort of knowing they are on their way to wonderful lives.

Tony and David I wish you good luck in your second year.  

The DNC Hangover

My ambition at the start of the DNC was to post something everyday.  After day two time and energy escaped me and now it is over.  And just like anything else, imbibing in too much of good thing the result is a hangover.

Charlotte put her best face on and the 2012 DNC was touted as the most open convention ever.  Even the NDI, which holds forums for international dignitaries, opened their program to the public for the first time ever.  And yes there were protests but the police considerably outnumbered their ranks and I felt safe walking the streets even late at night.  Celebrities and politicians were walking the streets patiently putting up with our staring, photos and handshaking.

David was on the floor due to his internship every night and we were lucky to get passes for Thursday night.  And what an experience, one that can never be captured by television coverage.  Gabby Giffords doing the Pledge of Allegiance was one of the most memorable moments.  Hearing the warm up speeches was tons of fun as well as funny at times and then to see President Obama and Vice President Biden deliver speeches in person was nothing short of incredible.

I drank in every moment thinking how lucky we are to live this country.  Yep the result is the DNC hangover and if I could do it again I would in a New York minute.    

DNC day Two

Mike and I walked CarolinaFest, went to the Harvey Gantt Museum and then I went off to work the Echo Foundation at the Knight Theater.  General Walker Casey spoke and charged us with the task of coming together to work  for the country.  Kathy Kennedy Townsend supported his words.

The stars of the night , though, were the Echo Youth Ambassadors, a range of high school students. They work for the future, their future, and give their time with the echoing idea that politics and one's civic duties is a right given upon the people of this nation at birth. Not 16 with the right to drive, 18 with the right to vote, or 21 with the right to drink, but the moment we take our first breath of air.

Preview of the DNC

Today started with a walk uptown Charlotte, wings at Hooter's and witnessing a very calm protest march. We took in the MSNBC stage at the Epicenter, the sand sculptors done by the Myrtle Beach Visitors Bureau, which by the way withstood our heavy rain storm yesterday, and were even stopped on the street by a Canadian newspaper reporter for our opinion of the upcoming election.  No, you will not see any quotes from us as we did not offer our names.

Tonight I ushered an event at the Knight Theater that featured the former Mayor of Charlotte Harvey Gantt and the Reverend Jesse Jackson.   The evening was wonderful and I am so grateful to be a part of this incredible experience.  

Setting The Table

Tonight I am setting the table for four instead of three as I have been this summer.  Tony is home tonight after spending the summer in Chicago and I could not be more happy to have my boys under my roof again.

This will be our future.  A week here and couple of weeks there.  The long summer months of time on our hands is in the past, but the visits during breaks and at the end of internships will be  just as precious.

Welcome home Tony.

The DNC is Coming...

...to Charlotte and today I picked up my tickets (after volunteering to register voters) to attend Obama's acceptance speech on 9/6 at the BofA stadium.  Whether you like him or not what a great opportunity to see our democracy in action.  I am also able as an employee of the Blumenthal Arts Center to work such great venues such as the International Forums, where by the way Madeline Albright will be in attendance hopefully wearing  one of her great pins, and the Domestic Forums.  I will usher the Echo Foundation with the keynote speaker being General Wesley Clark.

Charlotte will be alive with delegates, protesters, the curious, the interns and volunteers.  What a wonderful opportunity that has been laid at our feet .

Education Series for the FAC

Once again I stood in front of nurses, interns, and support staff of LCH recounting our story of Joe and sharing how this impacted our family.  Yet again my voice quivered and broke sharing our history.  I so want to be able to stand strong during that part.  I guess that will take time.

But even with my shaky start an incredible dialogue emerged.  Where and when is the right time to approach families who have had their world rocked to the bottom of their souls.  Should we have Palliative Care be involved at the start for rare cancers.  When do we bring up insurance coverage and the right time to introduce Medicaid or SSI as a supplement to your insurance.   When is the right time to say this will take a toll on your family and your finances.  When do you say to a family in a devastating spiral you need to look out for yourselves, your other children and we are here to offer help.

I do not know all the answers to these questions but I am feeling better that they are being asked.  And that is what Levine Children's Hospital is all about. Treating not only the patient but the family as well and I am proud to be a part of the Family Advisory Council at LCH.

The Thank You's

Every year after Joedance I send  personal notes thanking everyone who donated their time and money to raise awareness for rare and complex cancers.  And every year I write with blurred vision of tears in my eyes.  I get the zip codes wrong, the 9's look like 8's, I write and rewrite the cards till I think they are right for those who have sent money, those who gave their time and talent to make Joedance a success.  These cards are sent to so many people that knew Joe's journey and to those who have just learned of our heartbreak.  I as write these notes the tension that filled my shoulders preceding Joedance starts to lessen, replacing it with your love and willingness to gather every year for Joedance to remember a son and a brother.

I am back

After a small break I am back.  My last post was just before the Joedance Film Festival and I have to be honest with you preparing for this event floods me with memories of Joe and it takes a toll on me.  I am a mess before and a mess after.   So I  left the blogging world to get through this tough time.  And after all of  my distress Joedance was a success thanks to all of you that volunteered your time, your love and your support.  It starts with Julie and Arkon doing the flyer.  Matt and Steven rocked the Joedance Glass Table.  Bert Woodward put the word out to the newspapers, Mollie did the popcorn, Dave and Deb came back from their beach trip to be here to set up the film and John Schwert was on hand to introduce his film.  And you all came to remember Joe and raise money for The Rare and Complex Cancers Fund.

Thank you.

Press Release

There it was, above the fold (very important in the newspaper world), the press release about the Joedance Film Festival.  Left hand side under "Briefly" in the City News section.  I nearly dropped my coffee cup on the floor, but I found my composure to only set it down with a loud crack on the kitchen counter.

What were the odds of a small neighborhood fundraiser being published in the Charlotte Observer?  Well, if you have Bert Woodward on your side the odds are good.  He has worked tirelessly, as have Julie Marr, Friends of Fourth Ward, our friends and neighbors to make this film festival a success and grow it to another level.  And then came the partnership with the Carolinas Health Care Foundation and just recently the Charlotte Film Society.  Which, by the way, gave a wonderful plug for Joedance at their event last night at Theater Charlotte.

When we started three years ago with the idea to raise money for poorly funded research for rare cancers, such as Osteosacroma which claimed Joe's life, never did we think the support would have grown this much. I thank you, our family thanks you and all the kids that are afflicted with rare cancers thank you.

Carol's Birthday

Carol Zadel's birthday was today and it gave us an opportunity to call her and Bob, who is Mike's older cousin.  Bob and Bill Zadel always are a source of good laughs of remembering the wonderful times of growing up in a close knit neighborhood.  Where grandparents were across the street, cousins were around the corner and every child went to school together.  We have ditched the neighborhood of relatives for neighbors who don't know our past.  We are disconnected having our relatives living on either coasts and the Midwest.  And with the dissolution of our families being our neighbors for some reason that yearly visit makes us uneasy, makes us want to prove we are successful, makes want to hide our pain or struggles, makes us put on a face of perhaps a hint of perfection.

My Mom and Dad moved to Charlotte seven years ago, my niece Sarah was already living here and I was relieved to be able to show my pain and suffering every day to them without the pretense of a visit here or there.  They saw and witnessed our incredible sorrow as Joe died.  I am forever grateful they were around the corner and down the street.

The Next Level

It is a blur.  Webpages, Facebook pages and press releases.  We are moving to the next level with Joedance.  I am scared but excited.  I want to grow this fundraiser for rare and complex cancers, but I am anxious.  I have no idea of what I am doing except that  I want to raise money so that pediatric cancer patients will not have to suffer the pain that Joe did.  Donations to the Rare and Complex Cancer Fund will make a difference.

I want to make a difference.

Joedance

Preparing for Joedance I always listen to Joe's Chapel Talks.  But this time I went further and listened to Tony and David's.  Tony offered an insightful way of being yourself, which has always defined him.   David talked about failing and how that would shape your life.   Joe's first message is that you cannot go it alone, and his last talk sent the message of not fearing the end.

I listened and was amazed how such young boys could be so insightful, so intelligent, so in tune with themselves.  And then have the courage to stand in front of their peers expressing their deepest feelings.

As we move on to the Third Annual Joedance Film Festival I will not only remember Joe, but all those boys, including Tony and David, who had the courage to step up and speak their minds.  

Test Run

We are getting ready for the Third Annual Joedance Film Festival and of course we had do a test run with our new equipment.  No longer will you have to crane your neck to watch the movie on the side of the house.  We have a screen, a big screen, and you can watch every movie in the comfort of your chair.  There will be Mike's hotdogs, Mollie's popcorn, and of course a Joedance drink cup for a small donation and yours for the keeping. And the Carolinas Healthcare Foundation and Levine Childrens Hospital has partnered with us.  Well, that is big news.

But the bonus is that a neighbor has offered his film that he wrote, directed and filmed in  Fourth Ward.  I am loving the connection.  Joedance 2012 is going to the best ever.

Moving On Up

This past week was devoted to moving my parents into a continuing living home. I experienced the upheaval of moving through very different eyes. It was not the same as when Mike and I moved alone or with the boys. It was a move to another stage of their lives. One where cooking for themselves is not a thought, one of navigating a new space at 88 years old, one of saying maybe I don't need four different muffin pans. They are onto another stage of their lives and I will miss that only three blocks seperated us these past six years.  Now it is a twenty minute drive to their new sunny apartment filled with  everything that has meant so much to them.  We settled them in with only a few things left to unpack and I know in my heart before long they will be part of the Southminster community and loving everyday. I wish you well Mom and Dad. 

Dallas, Death, Surgery and 21

Ok folks this is a mixed bag for sure. First, who in the world thought that Dallas would return to television. I try to forget my big hair and over the top eye makeup while attending Dallas parties. But while we were reliving our past I received news that my sister in law's father passed away. My dear friend's son had surgery on his leg that has left him with a long road to recovery. And Joe's friend Matt finally turned twenty-one. Life has moved on, we have moved on, but not really. I still chase the dream of Joe coming back. I look up the street and am convinced he is walking in front of me or towards me. I think every knock at the door is Joe because he forgot his keys only to see it is the UPS delivery guy. And my heart aches again.

Not Nineteen Anymore

What started out as a casual trip to Chicago to retrieve Tony turned into another Restaino road trip nightmare. Why in the world do we always run in to traffic jams and road construction? What would have taken eleven hours to arrive in Chicago turned into fourteen hours. What should have been eleven hours back turned into fifteen hours. We drove all day and through the night arrived home at 6 am, caught a few hours of sleep and then went on to the task of altering Tony and David's suits for a wedding. Then as I picked up my dress from the tailor the car died. So now I am finding a way home for my boys who have been up for at least two days, searching for a tow truck all the while trying to keep calm with the whirlwind of my sister being here. Stress was defined in my face, my shoulders were pointing to the sky and, yes, I experienced the enviable bloating of my stomach. No, I am not nineteen anymore, I am fifty-six and I don't recover from the road trips as easily or the stress of surprises of a car that dies. But with all of that I will never give up the chance to listen to my boys chatter on about their lives as they were trapped in car for fourteen hours. Fiftysix will be just that, but nineteen will always be the future.

How To Die by Joe Klein

Thank you Joe Klein for taking the brave step and writing about all of us who have gone through the steps of a dying parent or child. Thank you for telling your story of the last days of your loved ones. And thank you for letting all feel better about not prolonging life for the sake of life. Our son Joe was given the life sentence of a few months, and he did his bucket list, but in the end it was our family that helped him, guided him to a dignified death. Our home was his refuge, his brothers were his comfort and in the end it was us alone in our room saying goodbye to Joe. It was simple and beautiful and in the middle of the night. Most likely how Joe would have wanted it to be. As I read Joe Klein's article I remembered the last days with Joe. He never talked at the end but he gave one last breath and looked at me and I drank that look like a long tall drink.

Two Cards

Working at the Blis gift shop we have customers come in asking for very specific items. This past week one came in to buy a gift for her friend's sister who was in the hospital. She was wheel chair bound and contracted a cold, which can be deadly for those who are paralyzed. Four days later another customer came in to buy a sympathy card for her friend's sister who passed away. Yes, the one in the wheel chair had died and she was trying to come to terms of the loss of such a young girl. I told her not to buy a card but instead write her a letter. If you can find the words it would mean more than a card. Then two days after that a man entered the store that was empty of customers, he asked in a clearly agitated way, a distraught way, I need a card for my good friend who just lost his son. He was 23, and he said I don't even know what to say. I laid my hand on his arm saying if you can write a letter or even a sentence it will mean more to them than any card you will send. What was kept from Joe's death were not the cards but the notes, the emails and the letters from friends. Even if it is a one line note of "I don't know what to say" or a lengthy letter it means so much more than any canned sympathy card.

The Lyons

This past weekend  Sam Lyons graduated from McCallie.   It was a normal matriculation for most people but for us it was a time to celebrate with a family that have become so much a part of our lives.  All three of my boys went to school with one Lyons boy or another over the past eight years.  Two families connected through their sons, holding our hearts together to the point that we would drive 5 hours to see the last Lyons boy graduate from McCallie.

But these were the boys that left everything behind and drove for hours to visit Joe during his last days, to be in attendance at both of his funerals without question.  They were the ones sitting in the chapel for both of his talks.  They are the ones that have taught us loyalty, friendship and the meaning of family.  Sam recorded Joe's service and made copies for us.  It is just what the Lyons family does.

One family with a heart of gold eased another family through grief with such incredible grace. And I tip my hat to the Lyons family for their unending giving of their hearts.

Tough Day

Joe would have graduated today with his UPenn classmates.  I know he walked with them in spirit and with pride today.

Love you lots and miss you tons sweetie.  Mom

The Mom Love

Tonight is chilly by North Carolina standards and I have put on Joe's sweater to keep me warm.  The sweater I bought for him when he went off to UPenn.  The one he wore with his jeans and khakis.   The one he hugged and thanked me for as he went on to his freshman year of college.

Tonight I feel the warmth of his sweater and the bursting pride of him being part of our lives.  We were forever changed by Joe and his bravery facing death.  But our family embraces our own bravery of facing life without Joe welcoming decisions based on that experience of losing a precious part of our family and pushing forward in our own way wrapped in his memory.  

The "Mom Love" never waivers even in the shadow of a loss you will never forget and I am forever grateful for my sons Joe, Tony and David giving me the opportunity to shower them with it everyday. 

Happy Mother's Day 

David's Second Published Poem

Grapefruits
By David Restaino

I smothered butter
Over my Honey Wheat bread
Remembering how you used to sit,
Right there,
Across from me,
Gouging craters into grapefruits
With your spoon.

You jabbed
Into each individual chamber
Its ruby juices bleeding out
And its sinuous pulp tearing.
You ripped out the sliver of
Precious meat before diving again in
A manner that screamed,
"This is how life goes."

I used to think,
When you still sat there,
On the other side of the table,
Before you turned
Your spoon on me,
That against all odds
I wouldn't die alone.

Dangerous Liaisons

I am a forever lover of  ballet.  I fell head over heels with it when my Grandmother took us to see the Nutcracker when I was maybe eight or nine.  The costumes, the lighting and the ballerinas luminous skin was blazed into my memory.  I was amazed with the beauty punctuated by the sound of their toe shoes tapping lightly on the floor.

This past week I was fortunate to experience another ballet that left all in awe.  Dangerous Liaisons,  Sahsa Janes of the North Carolina Ballet Theater latest triumph was at the Knight Theater.  A fifty minute spectacular of striking costumes, complex moves and original cello music.  A night of witnessing a true talent allowing us to feel his passion was breathtaking.

May 2012

The month of May means graduations for Joe's friends from college.  He would have done his slow saunter down the aisle with his cap and gown at UPenn.   All he ever wanted was to graduate.

Joe pushed himself because he wanted to, because it was beyond his grasp and so many things in his life were slipping away.  He did not have control so he created his own way of being in control.  That is the way of illness, of facing death, knowing time is limited.

My dear Joe I know if things were different I would be at UPenn  next weekend watching you walk at graduation.

Hope

There are times in your life you want to run away as fast as you can to a corner that hopefully will make you invisible.  You do not want to face the hard decisions of life.  A job loss, an impending end of life, a decision of further education that will leave you in debt or maybe having your car break down when you have only five dollars in the checking account.

Any of these would leave us gasping for air, hoping for the rich aunt or uncle to bail us out or maybe a time to revisit the far away thought of becoming an organic farmer.  The thing is that all of us, every one of us have been there and gasped for air.  But we hold on because we are a species of hope and miracles.  Whether it be religious or mystical it is in our soul to look forward and hope for better days.  

Violins of Hope

It is the story of Amnon Wienstien, a second generation violin maker, who devotes his life to making and repairing violins, some  have been from Holocaust survivors and victims.  By the grace of David Russell, Professor of Violin at UNCC this incredible program was brought to Charlotte.   As I worked the orchestra level I listened in the darkness of the theater with tears in my eyes.  This beautiful music washed over me and brought me back to a time when music was so important us during the last months with Joe.

His was the  "On the Go" number  three.  The music he would fall to sleep every night,  a combination of Lord of the Rings, Cry, Yo-Yo Ma, and John Williams.  He'd put on his ear phones welcoming the comfort of his playlist.  Then when that was not possible we would play his music as he would slip away.  

The power of the violins consoled so many during a dark time  and the power of Joe's playlist soothed his soul, and ours, during our darkest time for our family.  

I have preserved his "Go To " playlist and when may heart is at the breaking point I revisit it and feel it's calming effect.  Thank you Joe for sharing and leaving behind this precious gift.  

William Shatner

For Mike's birthday I gave him tickets to William Shatner. He has been a long time fan since the Star Trek days and beyond to Boston Legal. But we did not know that he did many more films, Broadway and TV shows in between.

It was a one man show starting out being very funny but then in the end it took a serious twist. It ended up with a very simple message..if you spread love you will receive love. Forgive and forget. Something for all of us to think about.

Newsletter

I was asked to write an article for the Blumenthal volunteer and paid ushers newsletter last fall about sending Tony and David off to college. They were intrigued that identical twins would venture to such far distances away from each other to pursue their passions. I wrote about packing the suits for David and the winter clothes for Tony. I never mentioned Joe, but they deposited themselves in the exact time and place because of Joe.

Most of my co-workers do not know about Joe. It is a timeline that started after Joe passed away. But I know in my heart Tony and David gobbled up the opportunity to be true to their goals for one person who showed them the way. That was Joe.

Easter Sunday

Vanilla hats, pale green ties, white shoes, full crinoline skirts and green grass in the bottom of the Easter baskets. Equals a child's Easter. A grown up Easter is giving a lily in memory of your son, a mother, a father, a brother, a sister or someone close to you. Remembering them in the season of hope and rejoicing a new life.

This season shines down on us as we love the ones with us and miss those who have gone before us. We are umbrellaed by their grace and live forward to the day we will be reunited.

Happy Easter.

Grateful

As we approach Easter, and this will surprise you since I am more mystical than religious, it is a time for rejoicing. I am amazed everyday watching Tony and David thrive as they follow their dreams amongst ruins of losing their brother. Sometimes I am confused how Mike and I muddle through the days but in the end we always have a plan. The plan is to take care of each other.

That plan was set well before children, and long before we met and were married. And it was what brought us together. Simply put it is important take care of each other and those in our lives. It is our underpinnings and has always been our message to our sons. After twenty years with Joe and nineteen years with Tony and David I can sit back, relax because those values that we brought to our marriage have rubbed off and stuck to our sons.

So grateful is what I feel this Easter season.

My David

I always call him 'my David" since I have a brother with the same name. Tonight this is about "my David".

It easy to get caught up with a two time All American diver but it is a very different thing to wrap your arms around a son that is following a dream that only a few are successful. Friends ooh and aaah about Tony wanting to be a doctor and his diving. And then ask what will David do while he is writing. That is the thing he is going to write and not be something else until he writes. He wants to be a writer.

His Writing Fellows teacher at McCallie, who has published a book, was at a reading not long ago. One of the questions referenced her guidance to students who want to be writers. She answered that there has only been one student that expressed that interest and he introduced me at my very first book reading. That was My David.

He may not set records but I know I will be the first to say "I knew him when".

Health Care

The great debate is churning at the Supreme Court about the Health Care plan set forth by Obama. And I had made a promise not to make this blog a political platform, but honestly I can't let this one pass without a word or two.

As you all know Joe was sick for a long time. And we ran out of insurance to cover his treatments. In his Senior year of high school his cancer recurred. Our decision at that point was not when do we start treatment but rather where do we find insurance to cover his treatments, and at five figures for each chemotherapy that was a consideration. We were presented with health coverage for him for everything but his cancer. We were forced to apply for Medicaid and Disability for Joe. So many warned us that his care would be less than we knew. You know what they were wrong. Joe's protocols were administered in the same hospital and his oncologist never changed.

My twin sons suffer from asthma and Tony has diabetes. Without the exclusion of pre-exisitig conditions they will never qualify for health insurance. Their opportunities in the future will be limited to only places that will insure them within a group plan. Something to think about.

I am amazed that I have one at UChicago and was made to buy a student health plan because he was "out of network" at the tune of three thousand dollars a year; and I have one in Scotland that his plan covers everything, including medicine, with no charge.

Hmmm...something to think about during the great debate of our civil liberties.

Robert Alan "Bob" Wilson

I only met him once at Joe's graduation in 2008. But I know his daughter Susie who has been working tirelessly to keep his dream alive of a special needs boarding school in Keswick, Virginia. It was a vision that he and his wife Libby followed. After so many years of building it up from a few students around their kitchen table to housing many more boarding students it is a miracle and a blessing to families that need this support.

Today I learned Bob passed away and I know without a doubt so many will miss him and his loving leadership. As I said before I only met him once and his presence was huge. Not unlike his daughter Susie who without a thought or question will carry on his vision with the same strong and loving leadership.

Please keep this family in your prayers.

Shine

Tonight was a shining moment. I sat in the Knight Theater in Charlotte, NC and experienced the most shining three hours of the North Carolina Dance Theater Dance Company perform Sleeping Beauty. These finely tuned dancers were beautiful and impeccable. Everything was more then expected.

And I wonder when the "more than expected" come from our sons do I give it the well deserved "shine". Did I bask in their accomplishments? Yes, I do since in my eyes they are far greater than myself and reach for brighter stars.

Light

I don't know if it was the trip to McCallie, the long walk today or just that I am seeing the light at the end of the tunnel. I was happy for the first time in two years. I laughed out loud. I stood straight and strong, my eyes were not puffy and I was interested in connecting with other people.

Does this mean I am seeing the light at the end of the longest, darkest tunnel named in the honor of grief? Will the darkness come back, most surely it will during milestones of Tony and David's lives or during the holidays; but for now I will bask in the light.

Joe's Walk

Six hours driving to McCallie with little conversation you could feel the tension in our car. We were returning to Chattanooga for Joe's Walk without Tony and David. Another first in our journey since Joe has passed away. Joe's friends were coming in from all different directions and those who could not make the walk were texting us wishing they could be there. Tony called in the middle of the afternoon to check up on us and the walk. David emailed setting a Skype time for Sunday. They both felt the importance of this date.

Driving on the campus memories filled my head with Joe's first visit, Honors Scholars weekends, moving him in his dorm and three years later doing the same for Tony and David. Stepping on to this campus for the first time since Tony and David graduated was a bit overwhelming especially when the chapel came into focus and then when we gently laid rosemary in the gardens in front of Caldwell Hall where we spread his ashes.

We arrived to the start of the walk and were embraced by faculty wanting to now how the boys were, how we were and conversations were seamless as if we had never left. It was comfortable as they all opened their arms to welcome us back. Joe's friends walked the "no walk" he had set up six years ago before going on to the Odle's who graciously opened their home giving us a platform to remember.

Joe was a boy with so few years shared by all but has lived on in the hearts, tears and love by many. And thank you to those at McCallie for your devotion to keep my son's memory alive through all of your efforts and hard work supporting Joe's Walk.

Another Loss

Joe was eighteen and Joey was four. But they connected on the 11th floor of Levine Children's Hospital and Joey was the only patient he would visit. They shared the same name, Joseph Michael. They shared rare pediatric cancers. They knew their fate long before others were let in on the secret. They lived their lives as if it would go on forever. They gave us hope and a blueprint to live our lives. They were survivors even though they did not survive.

But I know, as Joey's family is feeling today, if there could be one more hug, one more conversation and one more special time with their son it would be cherished.

The Great Weekend

Our weekend started with a drive to Cleveland, Ohio to watch Tony dive in his first conference championship but it turned out to be much more than that. It was my mom and dad climbing in the car for the long drive and many hours in the bleachers to watch their grandson. It was David thousands miles away requesting "keep me in the loop". It was a high school dive coach wanting to know everything. It was Tony living his dream of diving in college.

At the same time in Chattanooga, TN McCallie awarded the second Joe Restaino Scholarship. Appropriately passed on to another Honor Scholar David Paul who will travel to Beijing this summer offering a glimpse into another world and someday he will make a difference because of this opportunity.

Diving, scholarships, my elderly parents making the effort was all wonderful. The best was David's support for Tony. He was so far away but still so close. And my wish for these brothers is their love and support for each other will continue for many years.

Knit One Purl Two

I have not done any knitting since Joe was in treatment. And when he was I was a knitting machine using it as a mindless outlet. So many of you have my by product of doing something while I could not do anything.

But recently Tony requested a knitted scarf to keep him warm in Chicago. I agreed and set off to knit a long warm cashmere merino wool scarf for him. I thought it would take a week or two but it has stretched in to three months. I would knit and then remember this or that and time would pass without a stitch. I was re-knitting the scarf for Tony that I did for Joe as a freshman at McCallie and every other row I would remember something. I would capture an image, a photograph of the boys, a conversation, a giggle here or there and their love for each other.

Every scarf I knit for friends and family as a "thank you" for your support was easy. This scarf was a labor of love combined with many beautiful memories.

Chapter One

I have been Joe's Mom, and Tony and David's, since their birth. It is a label I both cherish and at times wanted to run the opposite direction from depending on their behavior.

But for the last four months of Joe's life I held the title of Joe's Mom. It was the signature at the end of the daily blog on Caring Bridge to update our friends and family. I held the title proudly and I hope with grace since for many it was the only news about Joe and our family.

Joe left so many things behind to guide us through our grief and the most precious were his private conversations with us. Here and there we have dropped a line or two but mostly we have held them to ourselves. Reading his emails, journals and his Caring Bridge postings I experienced a boy full of hope drop to bitter anger then to sadness. I will never forget this particular line: "Everything is done and now all I have to do is spend time with my family, which is what I love to do the most."

So it's a start, rough and painful, but still a start and someday it will be a book.

"Love, Loss and What I Wore"

A very popular play especially among females. It is based on a book and adapted into a play by the Ephron sisters about women remembering what they wore during milestones of their lives. I worked the show three times and I paused. Every milestone in our lives I can't even remember what I wore but rather what my boys were wearing.

When David had stitches it was Adidas pants, when Tony was diagnosed with Type 1 diabetes it was jeans and a fleece and Joe's cancer was Clarks, jeans, McCallie swim shirt and his navy blue Northface.

I still have the Adidas pants and Tony has his fleece. But I don't have the clothes Joe wore when he last left our home. They were his to keep and ours to remember.

The Silver Lining

Tony was named UAA athlete of the week and David's book with his published poem was in our mailbox. And there my friends is the silver lining.

One Hell of a Week

Joe's anniversary on Sunday, Mom's foot surgery on Wednesday, taking Dad to the ER for a low heart rate on Thursday and then his pacemaker surgery on Friday. Whew! I think I will hit Redbox for some funny movies.

Year Two

Hard to believe it has been two years since Joe has passed away. Outside of his birthday January 8th has been burned into my memory and my heart. But we made it through another year and holiday with the help of so many people. The calls, texts, emails and cards mean so much to us not only because you are thinking of us but more importantly you haven't forgotten Joe.


We spent the weekend filling up the void he left behind. First stop was Holden Beach and then on the Charleston to drop rosemary in the ocean where his ashes were spread respectively. Mike and I stood at the Battery with Michael and Josh reminding me again of these incredible McCallie men and their friendship. We each threw out some Rosemary and toasted Joe with a Jameson, then went on to an evening of catching up and the most delectable meal prepared by Michael and Josh. Tonight we will be with my Mom and Dad telling some seriously funny Joe stories.

We all miss Joe everyday but we are blessed with what he left behind.

Sweetie we love you lots and miss you tons.

My Dear Tony and David

It has been two years, but for you it has been three years of watching your brother die. Today it adds up to a total of five years of your lives. Did we ever thank you for giving up your Junior fall semester to be at home. The countless times you would just step on the campus of McCallie and we would call you back for another grave decision. Did we thank you for the countless sheet changes, holding your brother at the end and the patience you displayed in the last days.

Did we ever thank you? I am sure as our family goes we did but just in case..Thank You for being great men when you should have been boys.