journey

November is naturally a time of reflection – tree leaves have left their autumn glory, the night comes quicker, and a favorite sweatshirt takes the place of shorts and flip-flops. The pending Thanksgiving holiday forces us to put aside our trivial grievances and be grateful for the people in our lives and the things that we so easily take for granted.

I had the year that a dad could only dream of. Both of my amazing daughters got married within 6 months of each other. I had the unbelievable twice-in-a-lifetime opportunity to preside over both ceremonies.

I had the year that a son could only dread. I watched helplessly as my mom heroically fought but ultimately lost a bizarre and complex fight for her life.

These intertwined milestone events and subsequent range of emotions has left me strangely void of the ability to articulate in words, the depth of my thoughts. I imagine myself as a struggling painter who has a vision in his mind that he wants to convey but has no idea where to dip the brush into the color palette or where to put the first stroke on the canvas. Somewhere in this abstract, I hope to find the story.

My dad chronicled mom’s illness from the beginning, and his journal entry for the new year stated the following:

The Hospice assessor came today to check Loreen’s progress. She concluded that Loreen had reached a plateau, as far as physical and occupational therapy are concerned, and therefore therapy services would be discontinued. The nursing, and nurse assistant services will be continued. Loreen is gradually becoming weaker, and more confused, symptoms which have been prevalent in the past when she has had urinary tract infection.

This was a typical day in my hometown of Lynchburg, Virginia that would repeat itself in peaks and valleys for the next 7 months.

Meanwhile, the typical day in North Carolina was filled with wedding portraits, vendor contracts, table settings, and decor…

In March of 2013 Trenton proposed to Lauren in Wilmington, NC. They were high school sweethearts who had weathered the long distance challenges of college and the Marine Corps. A wedding date was set for the following March. Jackie and I were over the moon with excitement as we anticipated and planned for the big day.

Lauren’s Wedding Shower in Lynchburg

On February 2nd, my extended family in Lynchburg hosted a wedding shower for Lauren.

It was an incredibly special day for all of us – that mom could not only attend but looked and felt good. It was a time of expectation and hope. We made arrangements for mom and dad to travel to Raleigh for the wedding.

Lauren and Trenton’s wedding was held on March 15th at the Stockroom, on Fayetteville St. in downtown Raleigh. That morning, I was at the venue helping with last minute preparations when I got a call from my dad telling me that mom was not doing well and they were not going to be able to make the trip. I wasn’t surprised but I felt an immediate pang in my heart and a lump in my throat that I pushed back.

From the St. Patrick’s Day festival that was happening right outside the Stockroom doors, to the looks of adoring glances stole by the bride and groom, the wedding was truly magical. The place and time, the vibe, good friends and family, all came together in a confluence of celebration. The absence of my mom and dad cast a slight shadow – and at one point in the service, my voice gave way to the gravity of the moment as I reminded the couple of their heritage of faithful love:

Lauren – your grandma and grandpa just celebrated 61 years of what it means to be there each other “for better or worse, in sickness and in health”. For the last 30 years, your mom and I have been soul mates in marriage.

As I said those words, I thought about the reserved empty chair in the front row that had my mom’s name on the placard. Like a time lapse movie playing in front of my glistening eyes, precious family moments flooded my consciousness. The night before, at the rehearsal dinner, I had given Lauren this note written on a napkin.

Lauren, years ago I would pack your lunch for school. The brown bag would be loaded with a peanut butter and jelly sandwich, a baggy of chips, a fruit snack, a nutty bar, and a napkin. The napkin would have a message from me that I hoped would brighten your day and inspire you. Those days are long behind you, but I thought this might be a good time for one more napkin message. I’m so happy for you, and feel so blessed to be a part of your wedding day. It’s tough to think of losing my baby girl to the care and responsibility of another man, but I know Trenton will take good care of you. You were born for this moment and I’m so very proud of you. You’ve been a most wonderful daughter, you’re an amazing teacher, and you will be an incredible wife and mom. I can’t wait to see how your life continues to play out. If you ever get discouraged or need an encouraging word, you know I’ll always be here for you. No matter what you need or when you need it, I’m only a call or a text away – Know that our hearts are eternally connected. So go and be a big girl now, do big girl things – but I’ll be watching from a distance and smiling with love and pride, at my baby girl.

Love, Dad

The day is a blur but as I look back at the pictures, the one common element in every frame, is pure joy – a joy that allows you to dance without inhibition, to hug a little longer and a bit tighter, to laugh till you hurt, and to push the cares of the world aside for a moment. Every moment of that day reminded me of how very fortunate I was to to be a part of the giving and receiving of such passion.

My 51st birthday was April 23rd, and Jay’s plan was to ask Amanda if she would agree to be his wife, the night of my celebration dinner out – on the 26th. The evening got unexpectedly complicated (we can laugh about it now) and Jay ended up proposing the next morning. Little did we know that Amanda would opt for an abbreviated engagement, exactly 6 months from her sister’s wedding! Wedding plans were put into overdrive with a chosen destination venue of picturesque Addison Farms Vineyard in Asheville, NC.

Soon we were having the déjà vu experience of driving back to Lynchburg for the extended family wedding shower – this time for Amanda and Jay. I remember having the radio on and hearing the song Say Something by A Great Big World. I was listening to the lyrics and thinking of mom, and tears quickly clouded up my vision as I drove… the collision of my overwhelming joy for Amanda and my sense of gloom over mom’s suffering was too much.

And I – will swallow my pride
You’re the one that I love, and I’m saying goodbye
Say something I’m giving up on you
And I’m sorry that I couldn’t get to you
And anywhere I would have followed you, oh
Say something I’m giving up on you

My dad’s journal entry for that day was as follows:

On Sunday the 13^th , Mandy was having a wedding shower, and everyone came here for lunch, four generations were represented. Loreen had a downturn that morning and couldn’t get out of bed . Each one came in and spoke to her, and she acknowledged their presence…

Before leaving the house, dad called Amanda and Jay into the bedroom where mom was, to give them their wedding gift. It was a Bible that was inscribed with a special message, and mom roused long enough to hug them and tell them they were loved.

Six days later I was back in that same bedroom holding on to my mom’s hand as she took her last breath. My sister Amy laid across the bed, her head on mom’s chest, having released her dearest and best friend to a better place. My brothers, with their wives, and my niece, clung to mom and grieved. My greatest encourager, Jackie, held onto me as I held tightly to mom’s hand. I was as much relieved that her struggle was over, as I was sad. I had the high honor of offering the eulogy at mom’s funeral.

Time stops for no one… and so, on ThursdaySeptember 11th we packed up as much stuff as we could fit into my Jeep and headed to Asheville for wedding weekend #2. My daughter Amanda, is the consummate planner and risk avoider. She had talked her sister out of the notion of an outdoor wedding and had been adamant that she would never put her wedding day at odds with the whims of mother nature. Things don’t always happen the way we envision them – Note the picture of a tent being assembled for an outdoor wedding…

The Weather Channel app had a million hits that week and they were all from me. The weather in Asheville is unpredictable at best, but when we got heavy rain the night of the rehearsal dinner, I went to Amanda and said – “so… if it starts to pour down rain in the middle of the service do you want me to just pronounce you man and wife and make a run for it, or what?” We decided to ‘believe’ for good weather, and made no exit strategy.

Nothing helps to heal a gaping emotional wound like the soothing salve of love. Our family found an abundance of it in a beautiful cabin situated on 20 acres of stunning mountain and river vistas. The cabin slept 16 and we tried to fill it up. Many of my extended family stayed with us, including my dad, who would take long reflective walks in the morning before anyone else was awake. We talked a little about mom and how she would have loved to have been with us, but I kept her conspicuous absence at arms length. On Saturday morning, Amanda wandered into our empty bedroom and sprawled across the bed with her furry four legged child, Finley. As she lay there contemplating the day, the sun broke through the mountain clouds and shone brightly on her face. In that moment she knew in her spirit that God was going to show her favor on this day.

The bride’s maids all arrived for a festive brunch and retreated to the basement family room for hair and makeup preparations. I sheepishly walked down the stairs, realizing that I was intruding on this sacred space. I half apologized to the wedding party as I explained that Mandy and I have a common interest that I don’t share with my male friends, our appreciation of Oprah and her Super Soul Sundays. We’ve been inspired by the likes of Brene Brown, Dr. Wayne Dyer, Elizabeth Gilbert and others and who have spawned many deep philosophical conversations between us. I had picked up a book at Barnes and Noble entitled What I know for Sure – The back cover had this Oprah inscription:

“I know for sure: Your journey begins with a choice to get up, step out, and live fully.”

That was my prayer – that she and Jay would live fully and fearlessly, that they would dream big and then step headlong into those dreams, to live them out.

In spite of Amanda’s revelation, we arrived at Addison Farms with ominous clouds overhead. I walked the majestic vineyard and felt a deep spiritual connection with creation. Whether a fanciful notion of my conjuring, or a cosmic reality – I can’t say for sure – but I felt my mom’s presence with me, and I spoke to her for the first time since being at her death bed.

The guests assembled under the tent, the wedding party entered, I walked Amanda down the aisle and took my place, to begin the ceremony. It was beautiful and intimate, and I was able to keep my composure, until I followed a reading of the love chapter in 1 Corinthians 13. My voice broke as I choked back the tears and repeated the words that I had haltingly spoke to Lauren and Trenton:

Amanda – your grandma and grandpa celebrated 61 years of what it means to be there for each other “for better or worse, in sickness and in health”. Today I believe Grauma has the very best view of this blessed day, and is smiling on you.

The moisture in the clouds was so thick that I could feel the dampness on my hands, but not a single drop of rain fell. I knew in my heart that this was mom’s wedding gift to Amanda – that somehow she had cut a deal with God and it was NOT going to rain on this day, in this vineyard!

The story is far from over – for my daughters, it’s just beginning – but for now, I’ve done all I can do with this painting. I let the brush take me where it willed, and it is woefully incomplete. I cannot begin to untangle the overlapping hues of elation and despair, love and loss, release and connection. I’m grateful and thankful that I was a part of these moments. There have been times when I was so full of joy that I was sure my physical body could not contain it. There have been times when I could not stop the tears that dripped into my heavy heart. But this is my year, this is my story…

“To love someone fiercely, to believe in something with your whole heart, to celebrate a fleeting moment in time, to fully engage in a life that doesn’t come with guarantees – these are risks that involve vulnerability and often pain. But, I’m learning that recognizing and leaning into the discomfort of vulnerability teaches us how to live with joy, gratitude and grace.”
― Brené Brown, The Gifts of Imperfection

This past weekend we were back in Lynchburg to celebrate Jackie’s birthday. My brother Steve went to the cabinet where the family photo albums are kept, to do some reminiscing. To our surprise, among the albums were four individual packets of bundled up memories – one for each of mom’s kids. Like a child at Christmas, I sifted through the old keepsakes that mom had stowed away – school programs, my little league baseball picture, and a poem that I had written for her 41 years ago…

Me and Mom…

I wish I could remember what it felt like in 2009, so I could connect the dots for you, but I can’t pull those memories from my cerebral archive. From the medical records, I know this:

June 8th 2009 – my wife Jackie, went to Carolina Breast Care Specialist in Raleigh. Diagnosis: “New palpable left subareolar nodule on self exam.”
October 7th 2009 – Diagnosis: Lump or mass in breast. Procedure: Needle Biopsy. Established: Patient Benign

I don’t remember ever being concerned back then… the Doctors weren’t alarmed, they said it’s nothing… so the negative needle biopsy was just a validation of what I already knew to be true.

Mammograms in 2010 and 2011 continued to confirm that all was well.

It’s a known fact that a woman’s intuition should be trusted. In November of 2012 Jackie went to her OB/GYN and noted that she couldn’t be sure but that the lump seemed to have grown. Reassurances were given but for the sake of “peace of mind”, the lump was removed for biopsy on November 12th.

Most people can remember exactly where they were, and what they were doing when a traumatic event like 9/11 occurs. Jackie was making a routine bank deposit when she received the call that the biopsy results were back and that she had breast cancer. I was in my office when she called me…

The very next morning we sat in a disheveled office as a surgeon matter-of-factly scribbled pictures and gave options as if we were selecting a paint color for walls. My wife and oldest daughter absorbed it all stoically as I unraveled before them. I tried to be strong and compose myself and ask prudent questions, but my words came out broken, matching the condition of my heart. Jackie was to come back later that day to provide DNA for a genetic test that would determine if she carried the mutation that would make both of my daughters at high risk for breast cancer. At that moment, I saw the three most important people in my life all at terrible risk.

We were all in a state of shock that weekend but I was the one who could not hold it together. I cried all weekend. Every time I looked at Jackie I would tell myself to be strong for her, to be an encourager, but my eyes would soon well up and she would squeeze my hand… It was our first experience at being truly vulnerable – dealing with total uncertainty, risk and emotional exposure.

Cancer is a very scary word and everyone takes the journey in their own way. Some buy the t-shirts and the awareness bracelets and vow publicly to not be shaken in their resolve. Others take a very private and introspective course. My plan would have been to change my Facebook profile pic to a pink ribbon and hold a virtual prayer meeting… The fact that many of you are just hearing of this story, is indicative of Jackie’s choice to travel privately.

Doing battle with something that is trying to actively kill you, is also a race against time. We knew we had to make decisions quickly but they needed to be made with confidence and soulful peace. My eldest daughter Amanda led the effort in researching and finding a team of Oncology specialists at the Duke Cancer Center. It is no exaggeration to say that Jackie’s world class team came together in a miraculous way, and we are forever grateful to them.

Dr. Kimberly Blackwell, Oncologist – TIME’s Top 100 most influential people in the world
Dr. Erika Hamilton, Research Fellows – Oncology
Dr. Rachel Greenup, Surgical Oncology, Pioneer in Mastectomies
Dr. Michael Zenn, Plastic Surgery Vice Chief
And scores of nurses and support staff who remain nameless, but we know who you are and what you did for us!

Three surgeries behind us and one reconstruction surgery to go, but it feels beyond liberating to tell you that Jackie has now joined the ranks called “Survivor”. I like that… survivor… for it truly defines the physical, spiritual, and emotional fight, that is breast cancer.

I titled this blog post The Journey to Vulnerability because I have witnessed this amazing transformation in my wife, as she has been forced into this wonderful thing called vulnerability, that many see falsely as weakness. Dr. Brené Brown, in her book Daring Greatly, says that “to dare greatly is the courage to be vulnerable. It means to show up and be seen. To ask for what you need. To talk about how you’re feeling. To have the hard conversations.”

> Being vulnerable is having the courage to tell your physician that something is not right, even though the tests say everything is okay.

> Being vulnerable is admitting that you don’t want to read the inspirational books, or wear the t-shirts or run the races, until you are ready…

> Being vulnerable is sitting up all night with your daughters, laughing, and watching Magic Mike, the night before your mastectomy.

> Being vulnerable is allowing your husband to hold you, silently praying, during that sleepless pre-surgery night.

> Being vulnerable is coming out of anesthesia and asking through tears, “did I do good?”

> Being vulnerable is waiting for the surgical oncologist to come into the room with the lab results that reveal if she “got it all” – and watching the release of emotion when the answer is “yes!”.

> Being vulnerable is going out in public for the first time with a scarf around your neck, hoping that you don’t look weird.

> Being vulnerable is telling the nurse that you’re scared and have her hug you and give you a laminated card of inspirational words for you to hold onto for life.

> Being vulnerable is going to the gym for the first time, not knowing how the ladies and instructor will see you.

Being vulnerable is NOT weakness…it’s a statement of tremendous courage and strength.

As a husband and a father, I have had to share in this vulnerability. I’ve been allowed to cry, and I’ve been able to be the strong one. I’ve wondered how I would encourage my daughters and my wife, how I would hold up in waiting rooms, and if I could empty surgical drain tubes – and I’ve done them all.

I’ve watched my amazing daughters have vulnerable conversations with their mom about medical procedures, and diets and life balance. They have huddled with me as the surgeon took us to a back room to give us the status. They’ve waited nervously for DNA testing results which would possibly dictate their own fate. They’ve shopped with their mom for skinny jeans and have made sure she keeps her mojo.

The journey of a survivor is never over. Being a survivor means you are living to fight another day. That requires that we open ourselves up to the joy and power that vulnerability brings.

A final thought on vulnerability from Brené Brown

“Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”