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.