When love speaks above disease

Often when people pay tribute to a loved one who has died they reminisce back far into the years. I only knew Sharon Noonan for four and a half of her years on earth, and as many who knew her will attest, I didn't ever know her the way she once was.

Little did I know when I entered a restaurant on a misty September evening with my friend Jennifer that I would meet the man I would one day marry and his wonderful mom - together. 

Patrick charmed me for sure, but I have to say the two were a package deal and I was drawn to Sharon every bit as much as her sweet son. She was warm and enthusiastic with sparkling eyes, and every bit engaged in our lively conversation at the table that night. She peppered me with compliments in a charmingly uncommon way. "I like her," she would say and look directly at her son. It was unfiltered and quite simply adorable.

Perhaps it was the repetition of an identical question that tipped me off that something was different about Sharon. Or perhaps it was the gentle way Patrick guided his mom to the menu that prompted curiosity.

Thanks to Jennifer I have this picture of the first night we met.

That night, as I was of course told later, Sharon urged her son to "call that girl". Patrick already intended to call me but mother's intuition was a nice reassurance I'm sure.

A diagnosis of Alzheimer's disease was a very present reality in her life, but it never ever defined her. Incredibly, she broke through the barrier of her disease to do a very healthy and ordinary thing - forge a relationship with her son's significant other. Yet, it was not by any means an 'ordinary' relationship,

I'm told the Sharon Noonan of that night was not the same woman many had known. I could feel short-changed or robbed in some way, but honestly I feel incredibly blessed. Remarkably, Sharon was able to bypass the grip of dementia and remember me for almost all of the time I knew her.

Sure, there were nuances and details that were missed, but over the years she was every bit learning who I was. She did this in a way that science or neurological reports might never accurately explain.
I had been dating Patrick for almost six months when he and I made the long road trip out to Wisconsin to visit her for the first time after our meeting in the restaurant. I thought at first as we entered her apartment that she would ask who this woman was and find a stranger, but her arms wrapping around me stifled my worry.

We spent such a golden few days going to breakfasts at diners, bowling and visiting with Patrick's sister Karen's family. One afternoon while driving around the back country roads, Patrick asked his mom "would you like to go see Tara?" "OHHH Yes," she exclaimed with a kind of childish joy I had not seen in her before. Patrick turned the wheel down a long road and pulled up to a farm. We were going to see Sharon's horse.

"Tara!" she yelled and a sleek bay picked up her head from grazing, pricked her ears and ran up to the fence. No longer hers in ownership, Tara was living here on a farm with several other horses. As Sharon approached the mare almost danced toward her. I watched Sharon pat Tara's neck as the mare leaned in to accept the gentle touch with such loving familiarity. She turned to me smiling "Do you like horses too?" Hahaha do I like horses? We were two birds of a feather. 

Sharon was calm and comfortable as she led her longtime friend around by the halter. She began to tell me of the many times she had ridden this beautiful animal as we both took turns stroking her. The soft nickers of this beautiful horse were music to both of our ears.

As Patrick hung around in the background, Sharon snickered..."he doesn't like horses quite the same as us." We shared a laugh looking over to see an ornery Shetland pony having a comical dance of avoidance with a 6 foot 2 male. Little Pepsi apparently had developed a strong desire to assert alpha male status in the pasture.

 It was in those moments Sharon's disease was hidden, blanketed over by her comfortable confidence with an animal she had spent so many years of joy with. I could see that there most of all beside Tara, Sharon was every bit herself, not lost in memory or confusion. Animals had been so much of the fabric of Sharon's life.

A year later Patrick would propose to me on Mother's Day...and announce our news to everyone in his card to his Mom. It was just another one of the beautiful memories I have of a woman who became such an important fixture in my life - despite distance and dementia. 

The most difficult decision had to be made prior to our summer wedding in 2014. Sharon was having extreme difficulty readjusting to visits outside her memory care facility. It was understood that a long trip and a stay in unfamiliar surroundings would be harmfully confusing for her. For both Patrick and I the mere thought of her not being there for our wedding was heartbreaking.
The answer became clear - if Sharon can't come to the wedding... The wedding indeed came to her, thanks to Patrick's sister Karen and husband Jim who helped us chose a lovely community center and set up a lovely spread complete with Karen's homemade carrot cake as our wedding cake. 

An impromtu second walk down the aisle

Our "Act Two" Wedding

We did the whole ceremony over with Patrick's brother Brian officiating. And afterwards on a little portable speaker we played "I Hope You Dance" and mother and son had the turn around the dance floor together they had both so deserved. Though my parents made the journey from Rochester to be there the bride's side was slightly tipped in balance. Sharon was surrounded by people she loved that day. Truly, it was her day and this bride wanted it that way.

The next day after all was over she had forgotten the memories of the event. We sat for lunch with her in a booth at a Mexican restaurant she loved. Words were hard for Sharon at this point. Most of the time she spoke in short repeated words, not sentences.

She had to be reminded that I was married to Patrick. It was as if the day before had never happened. But the joy spilled back over her again as we talked to her, walking backward through the details of that day. "Oh my. How wonderful!" she exclaimed. 

When Patrick excused himself to use the restroom, Sharon seized the opportunity. In a moment I will never forget she grabbed both of my hands and looked in my eyes.  Clear as day she said "I am so so happy for you two. So so happy." It was the most steady and solid thing she had said all weekend. It was as if she had worked up the way to say what she felt so important to express to me - and to me only.

I smiled at her with tears in my eyes and squeezed her hands back. "I'm so so happy to be with your son," I said. She squeezed harder and repeated "so so so," trailing off as though the fleeting moment was being taken back from her- snatched back by a mind that so grasped onto the right to have it. Her words didn't matter. It was her eyes that danced with sincerity and conviction. It was the deep assurance any daughter in law could want from her beloved's Mom. This to me was my gift - an incredible one.

When Patrick returned she smiled at him and no hint of our exchange remained. "Hey, did I miss anything?" he playfully joked. Truer words had never been spoken.

Patrick and his Mom - August 2015

As months rolled on, she gradually struggled more with my name. Eventually she would forget altogether the second voice on the phone call or the woman beside her son. On our visit last summer she looked at me with a puzzled look I had never seen in her before. Thankfully, she knew Patrick. She spoke very little, a stray word or two, sometimes a nod. I accompanied Patrick as a stranger, but one with obvious affection for her son.

The grip of the disease had finally taken me from her active memory. As sad as that was, I know I had the gift of a time where I had lived clearly in her mind. Against all odds.

Through many years she held my name on the tip of her tongue and instantly brightened with victory when she stumbled for it and found it again and again. Except for this past year, she always knew me. It was not what was expected by any textbook, but it was mine. 

Two weeks ago Patrick and I got the call we had known would one day come. We drove 14 straight winter hours to be there in time- fearing we would miss saying goodbye. At three in the morning we joined Karen who had not left her bedside once.

Sharon had love surrounding her. She was able to hear the voices who loved her saying goodbye and telling her to let go, both of her sons and her daughter. She hung on for two days, but left on her own terms. She slipped out of this world knowing that she was loved.

As I held the hand of this woman who gave birth and lovingly raised the man I love, I thanked God for the time we had. I will never ever forget her or the miracle she worked to truly be in my life. I will never ever forget the remarkable Sharon Noonan.

Grateful to my veteran

There was a box of photos at the top of a bookshelf that for many years I could not reach. Like many curious kids, I loved finding old photos and most particularly photos of my parents. 

One day boldness got the better of me and I was able to climb high enough to reach the old cardboard box.
The box marked 'Vietnam' in my father's handwriting contained pictures I couldn't quite make sense of then. The much younger Dad in the pictures looked like a boy playing soldier to me. The murky haze of violence or the grim horror of war was out of those images. In those still frames young men posed for a moment, grinning or in some cases looking wide-eyed or playful.

It wasn't until I was a teenager that I began to understand the gravity of the faded images that filled that box and the part of my father's past he had such a hard time putting into words for me. It was with time that I began to understand why he had such a difficult time answering my questions about that time and about himself and those other young men in the photos. It would be a while before I realized what 'shrapnel' was and how after years it could still set off an airport alarm when my Dad walked through security.

It sickens me to think that there was a time in our nation that people ever turned vitriol or even apathy against those men who served. For the most part, we as a nation learned our lesson, but we've always got to remind ourselves that our veterans need and deserve our thanks.

The emotional scars (much like the physical) are part of the sacrifice that our veterans carry with them for life. When we speak of sacrifice, this is much of what that word really embodies. 

The times when my Dad's hand goes to his heart at a baseball game I can know for sure that the chords of the anthem being sung are touching him quite differently then many others who hear it. It is these times I am in awe of my Dad. Sure, he's Dad and now even Grandpa, but he is a veteran.

I remember all he endured and all he sacrificed every day, but especially today.

Honoring you today, Dad on Veterans Day. 

Walking forward

Taking it all in

There are times in our lives when we have no idea what is ahead. I'm beginning to believe that these are the times that we are about to grow the most.

I have been feeling that pull of change as I pack up suitcases and boxes with 2 seasons worth of clothes and belongings and prepare to head out to NY. 

Like it or not, I am about to grow again, to relearn a way of life for a while. It's an adventure that my husband and I don't have a step-by-step road map for and that's okay. 

Ever feel like we begin to live less and less of our true potential when we write out the entire story before its lived? 

We can't count on everything being the way we envisioned it. Sometimes the way we envisioned it wasn't even as wonderful or colorful as the way it changed and rerouted.

I've been thinking a lot about this on my walks in the last few weeks, watching the emerald summer turn to the red and gold autumn. I love autumn walks the most. I imagine this as both a practical training and sentimental way to say goodbye for a while. Training for the walking ahead of me, living on the upper West side of Manhattan and a way to honor how much I love my charming and imperfect Rochester neighborhood. 

Last weekend I walked all the way to the top of Cobbs Hill and looked out on the view I've long gazed at, of the city I call home. Five years ago I trained on this hill for my first 5K, practicing running inclines. While I trained I was learning to strengthen the timid lungs weakened by cancer and thought of how my life could be different.

Following that loop up and around the highest point I knew in the neighborhood, I gained confidence. I watched the colors change around me each time I came back. My body changed too. I struggled less and began to breathe easier with each loop. 

Changing Colors

In a year's time I was at the top of Cobb's Hill again breathing in the air and admiring the changing colors.

This time it was the extension of a first date. 

He was in town for only another week. He had a kind smile and soft, loving eyes. Over pancakes and coffee we talked about who we were in that usual way strangers do. After the meal and the requisite hour or so of talking in between bites and sips, he took me by surprise.

Instead of the "well, this was fun, nice to meet you" thing, he asked if I had more time to just hang out. I was taken aback...where could we go...? I suggested we drive to the top of Cobbs Hill and go for a walk.

I showed him that spectacular view of the city and as we walked, he reached for my hand. This was unexpected - I guess I was so used to the awkward 'usual' way these first date things went.

In that moment I didn't see the future.

Four years later, this man is my husband and we have navigated so many other moments, decisions and plans. That won't change. We are following the road where it leads and if the road runs uphill along the way, we'll just learn to get up it the best we can.

I'm excited about this new chapter. 

A time for adventure

Leah & The Machine

Nobody's life is easy.
Each life is put together with so many little unique pieces, assembled in a way that each piece becomes integral to the other. Without us even knowing, this intricate assembly of pieces ensures that, in general, our lives are complicated.

We don't know how complicated until one of the pieces falls out.  Then we have to rebuild things, fill in with different pieces and rework the whole set-up. Most times, or so I hear from conversations with many friends who have had major change to the 'set-up', our perspective can change radically. 

Though I left my job two months ago, nothing has changed in terms of my heart and my devotion to giving. Several friends and colleagues reached out and helped me reassemble inner pieces to fill a void. It's been a blessed time, rebuilding, relearning, reconnecting - and of course, making new connections and rekindling old connections.

I say 'blessed' because I truly believe sometimes we lose our sense of self in pursuit of keeping things "together" and keeping all the pieces in place. It's only when a piece falls out that we realize life is about change. Adapting to this change is the real key to understanding that our crucial or core pieces are strong enough to keep us going while we look for the other pieces. Sometimes we become better by rearranging the pieces - by force or by choice.

The last time I was rearranging like this I was not alone, I had family and good friends. Yet this time, I have a husband, a partner, a co-pilot. Wow, is this a new experience- rearranging the pieces together as a team. And again, all the more reason for it being a blessed time of learning and growth.

Rearrange, Relocate, Reconstruct

Patrick, you see laughs in the face of "rearranging". His career is constantly shifting and changing. And he teaches me every day about how he thrives by these little changes to the moving parts in the machine.

Months ago he got passed over for a part. It was an oversight that really hurt (at the time). Yet, little did we know the universe did him an incredible favor. In the time span that would have encompassed the part he lost, something came up that proved far more incredible. So, now he is embarking on a new role...and out of that also came several other opportunities.

 For the time being New York, a city of 8 million is again calling his name and for once, his opportunity is aligned with my ability to join him.

The universe in its crazy way spoke to me. Here we are riding this wave together as husband and wife. I will be joining him in this crazy city in just 10 days. It's the same crazy city he picked up to leave to be with me.

An exciting possibility is rising to the horizon for me too. While I figure out my own shifts in the parts and pieces it's a time to realize discovery in itself is a blessing. Though nothing in my path is yet to be settled or solidified, it's a remarkable gift to know that my talents won't be wasted. Yes, I CAN reinvent. I just have to have the tiniest faith in reconstruction.

Changes and restructuring scare me. I'm not the person I was before cancer. Yet, I'm incredibly grateful I've gotten the chance to restructure. 

In Her Voice, 'Go Get it, Girl' 

At times like this, there's a deep echo of loneliness for my friends who have died. I really do think about them often. Maybe it's because I want to share little stories with them and hear theirs too. Maybe it's because they knew me before, when we were all finding our way and for a time we were uncertain together. 

I've learned so much from these friends, through a disease I've grown so intimately to resent. There is a difference between resenting the disease and resenting where it takes us. Resent the disease itself, not the path it leads us on. Without cancer, I would have never met Jen. She is one friend I have been thinking about a lot lately. We shared that same fun-loving and devilish spirit and the desire to have our fun by challenging the ordinary. 

Jen was the kind of friend to invite me out to dinner with her and her husband, knowing instinctively I wouldn't feel like a third wheel as the single girl.

She was the kind of friend who had no problem telling me 'girl, you need a new haircut.' This was convenient because as a salon manager she found a way for a really thrifty girl to get a really nice haircut for free. 

Jennifer embraced life and friends

She was the kind of friend that begged me to tell her about my adventures in detail even when her own life was limited by doctors appointments. She prodded for more when I held back...she loved hearing the stories.

 She was the kind of friend who called me up after four months of falling out of our chats to invite me to her house to visit her because she knew I would not be afraid of how she looked or the hospital bed or that she was dying. 

She was the kind of friend who when I asked if there was anything I could do for her, she answered honestly. With gratitude that she gave me a chore and with no hesitation I went out and got her the makings of a ginger ale float. 

She was the good friend I never really got to know as deeply as I would have liked. Yet, she was the friend I knew deeper perhaps than our time had allowed. She was the soul that I would have liked to have a lot more time with because we could laugh endlessly about the stupidest of things like old friends. That last crisp fall afternoon we spent together in her living room-turned-makeshift-bedroom was an absolute gift. She told me not to be sad for her because she had accepted her path, but she was excited about following mine. She was that generous of a human being. And then she said something which would have sounded crazy...crazy, if you didn't know Jen. 

 She told me she was feeling a little clairvoyant facing death. She chuckled. She was confident I was going to meet someone who was going to change my life, this guy would just make sense. I nodded. But she knew. She smiled with an almost playful rebellion. I didn't believe her and she knew it. She knew I doubted the whole "Mr. Right" bullshit. I'd seen proof of so many wrong fits.

She really underlined her statement by grabbing my hand and smiling right into my soul. "It's gonna happen and I can't wait to watch." It was kind of eerily the same message my own grandmother gave me a year before, on my sister's wedding day.

I have to admit delightful surprise both Jen and Grandma were right on that count and proved me wrong...Patrick was unexpected. :)

I don't know what's ahead. I really don't. Who does. I'm just gonna follow my heart again and work at things the best way I know how. Those dreams keep us living. The connections we have with those who inspire us...they keep them living too.

Crazy to think my next adventure is now an adventure for two. 

No, not running for president...

In my head, I still hear Jen telling me what she told me last time.
 "Go on and get it, girl."

Their lost memories are a loss to all

Our second wedding in honor of Sharon Noonan (fourth from the right)

She knew me. For more than three years she knew me and asked about me and called me by name.

Whatever time I had, it was a gift. I had the pleasure of knowing that my mother-in-law really loved me. She told me all the time...often too many times to count. Those words are ringing sweetly in my mind and they comfort me.

It's more than any girlfriend who became a fiance who became a wife could ever ask when her mother-in-law to be was falling inside a cavern of waning memory carved by a disease - Alzheimers, clearly some form of dementia. Whatever name you put on it, it's been heartbreakingly stark to know at this point I'll never hear her say my name again. No matter what that feels like, it can't compare to the bitter ache I have for my husband...and what he has to endure.

Nearly a year ago we were all celebrating. By grace of time and the capacity of her mind then, we were able to share our joy with her. We found a way to have a wedding with his mom. It had to come to her. We did it all over again in Wisconsin a week after the real wedding - the cake, the dress (more travel-friendly version) and a smaller wedding guest list - all of Patrick's family. My parents flew into Milwaukee and met us there.

 Patrick's mom smiled a lot through that day - though I'm sure parts of it were confusing and foggy for her...she knew her siblings and they had time with her. Though they say weddings are a bride's day - there was no mistake on this special day. This day was all for Sharon.

"I Hope You Dance" played on a little digital speaker in that community center where we staged this celebration. Patrick took his mother's hand and they danced. Finally, this was the lonely ache, the missing piece of our wedding in Rochester. I don't think there was a dry eye in that room.

I just can't stop thinking about how happy I was on that day to see that dance.

Patrick & Sharon - Mother and Son Dance

Gratitude & the Eddie Bauer raincoat

Many married couples go through the growing pains of the home they've long outgrown. Patrick and I are beyond the pale of frustration at this point with our humble abode.

The cozy one bedroom apartment with limited closet space that was tight for a single girl is beyond frustrating for two. Some day we will have another place to call our own - but right now is not the time. We are renters and that's going to have to be okay for now.

So one conversation Patrick and I have had which makes good sense is on the subject of downsizing. Having lived as a bachelor in New York for close to two decades, Patrick is an expert at this. I admit it - I am not. Downsizing my wardrobe is tricky. I think I speak for many women who treasure pieces and have trouble letting go - even amidst duplication.

I realized the other day that I had two raincoats. As I left work on Friday in the pouring rain, I set the green one down on the passenger seat. On my passenger seat was the other raincoat. Two raincoats. One coral, one green. I laughed to myself and realized this is evidence of my needed downsize.

Driving home, I took the exit to my too small apartment only to be reminded of 

how lucky I truly am. 

A scrawny man was standing in the rain, head down and drenched and holding a cardboard sign that I couldn't read because rain had smeared the words.

Some signs don't need to be written clearly - the dejected look on his wet face said it all.

I rolled down the window and handed him my extra raincoat...the green Eddie Bauer that looked least like it belonged to a woman. He thanked me profusely as he slipped it on. 

The light changed...and I had to go. I watched him hug the weatherproof fabric around him and I smiled and waved to him as I drove away. He had something to shield him from the merciless weather. I wondered with our stretch of rain how many times he had been out in the elements without it.

I thought of Father Bill Trott, the pastor of my church growing up, and remember his mark on my life. Father Bill died suddenly when I was a freshman in college and I often think of him during challenging times. His philosophy was to be grateful first and foremost for the gifts we are given and to have faith that we will be carried along even when things look bleak. He absolutely believed that helping others was how we made ourselves richer. Father Bill was and is so right - love is our greatest resource. 

My luxury of a second raincoat could be a blessing in a moment to someone who needed it. In truth, my second raincoat was there sitting next to me blowing an airhorn signal that it was time to say goodbye. Things are not as important as people and the look in his eyes was the look of love for a stranger - a most transformative gaze for me that day.

I am grateful for my small one bedroom apartment and grateful for all I have to downsize.

Take it from Aunt YaYa

My beautiful niece Rachel has come a long way!

She calls me YaYa. It's her attempt to say Leah. It's like the gold flecks of an angel's whisper when she tries to say my name. It means everything to me.

There aren't quite words to describe what becomes of the heart touched by a little life. 

She is a reminder to my heart of all the good things that come when we slow down and get to ground level...and open our eyes and ears...watching and listening with excitement at every moment. 

My niece Rachel reminds me how an adult's life can get too complicated for enjoyment.  It's a lesson she doesn't consciously teach but an all-too important one. Adults lose enthusiasm and wonder because they wrap themselves in complex and monotonous pursuits that are somehow supposed to prove our worth.

Children have the brilliant knack of discovering, learning, delighting and sharing.
How is it that we adults become swallowed into the drudgery of a life we design?

The mindfulness movement, in many senses, integrates all things regressive. It teaches us to go back to the simplicity of childhood. Currently, I see Rachel as my greatest mindfulness practitioner. She's my pint-size Pema Chodron.

Watching her discover splashing water, making sounds and adapting them to the squeals of her admirers, watching out a window at the birds swooping down into the trees.

 Her life is one new miraculous and mysterious discovery after another.

I urge those of you who have previously been thinking yourself ultra-enlightened (and yet ultra-burdened by the world) to find a way at some point in the day to stop the cycle. Get down on the floor, pick up a crayon...study what's outside your window, instead of what's on your newsfeed.

The decreased time and increased demands of life have a cost. The cost is our awareness, our appreciation and our enjoyment of the simple wonder of everything and what it means to be alive.

Seriously, laugh at a fart noise. 

Stop being an adult long enough to remember that we get to be child-like when we choose to be and the reward is the time to open our senses to all the things we miss, the life right around us - waiting for our attention. Thanks Rachel. You are teaching Aunt YaYa so much!