My Title

I posed the question: In the story of your life, what is the title of the chapter on Mom? Here is mine.

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For most of my life, my mom was my best friend, closest confidante and strongest advocate. After dementia entered our lives eight years ago, this relationship began to shift. Slowly at first. Almost imperceptible changes. Strange handwriting began showing up on the kids' birthday cards. She stopped driving at night. Once a phenomenal cook and home entertainer, she stopped taking down her favorite recipe books and spending days in the kitchen. 

You know how you can't remember when your three year old was an infant? And then when she's six you can't remember three? Dementia is like that too. It's hard to remember what my mom was like before something strange and unknown took hold of her brain. 

My therapist gave me a tool that's really helped. She asked me to find mementos of the "before" days to remind me of who she was as a person and a mom. I dug out an old card she sent to me in college. It was full of sweet love and support. Full confidence in me. The familiar and cozy feeling of being taken care of flooded me. That comfort that someone believes in you no matter how many stumbles. 

This was the place I brought myself back to in order to come up with this title of my life story chapter on my mom. Distilled, this is what she taught me. She had no family near the town where we lived. Instead, she built her family with friends. She cooked for them, she took care of their kids, she spent time with them, regularly. And when things got hard, she didn't hesitate. Two of her best friends were diagnosed with cancer and died in their forties, when I was in high school. My mom didn't wonder what to say or how to take care of them. She marched herself into their homes to check on her girlfriends and to see what help their kids needed.

She taught me that showing up as yourself is love. 

Love is Openness

We can't know how our actions will affect the people and the world around us, but I'm seeing real evidence that happens it all the time. The ripple effect is alive and present. I made a commitment to myself this year to write about my personal stories that I've held tight, not wanting to shed light on them. My reason for not sharing has been that I don't want to hurt people I love - because all stories are told in relationship. But I think that's been more of an excuse than a reason, so here I am trying today. This story describes why it's so important to me that I do. 

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Six years ago I became friends with a stately man in middle age with a bald head, glasses and a bow tie. And a lovely singing voice. I was drawn to this man because of the way he spoke about his young adult son, J, who was facing the most serious struggles with life. The kind that push a person to the edge of their existence. The kind that come with phone calls in the middle of the night. His father talked openly and I didn't sense the shame that so often surrounds these conversations.

But, oh the pain. The pain expressed by this man was so raw and so embedded in every fiber of his being. I recognized that pain almost instantly. And I connected to it.

I had a three year old and a one year old that year. I knew that my three year daughter was not thriving in the way all my friends' three year olds were thriving. Life seemed too much for my girl to bear and so she was in a constant battle with it. Which meant she was in constant battle with me, her mother. I couldn't fix it. I had been trying and trying for three years. I wanted to fix it so badly and I was so ashamed and wracked with a sense of lack that I couldn't. If she needed help that meant that I needed help too. In my mind that was equivalent to failing as a mother.

J's story was woven into my heart the first day I heard it. His father helped me to accept that getting help was not a choice. It was a need, a necessity. I don't know many details of J's life but I don't need to. His father gave me an enormous gift of showing me how to live as a parent of a child who is in pain. I don't think I could see my daughter's challenging behaviors as her own pain back then, but my eyes were opened to the idea of figuring out an alternative way to do parenthood. J's father showed me that it's possible to be grieving, to be joyful, and to be loving all at the same time.

It may seem odd to have made this strong connection between our experiences. He was parenting a 20 year old and I a three year old. This the beauty of love and kindness. We don't need to understand it. We only need to be open to receive it. And we need to be willing to give it of ourselves. 

I'm still learning how to parent my child who continues to experience the world differently than her peers. I still want to solve it and put it behind us, but I'm starting to understand that is not how this works. I have enlisted many helpers and healers in the past six years. A desire is growing stronger within me to live joyfully in this own life of mine and not let the weight of this keep me under the surface. 

Earlier this month, just as 2018 was waking up and stretching its limbs, J released himself from this life. He was 26 years old. I know this is not the end of J's story. He will continue to touch me and the many others that survive him. His story will ripple. 

I've seen his father since that day. I see him in deep, deep grief and joy and love. 

A Special Birthday

A few years back I became friends with one of the most beautiful souls I have ever had the honor to meet. I truly believe our paths crossed for a singular purpose: to connect over her son Matthew's journey. I've written about our special friendship. Today I am thrilled to introduce a moving piece of writing by my friend, Kristin Theobald. My heart is full of gratitude that Kristin is my first guest essayist. Today is Mathew's birthday.


One Foot In Front of the Other by Kristin Theobald

Mike and I had a four-day long date in Denver last month. Like all good parents, we saw the opportunity of a dear friend’s wedding and ran with it. We are lucky that our kids have grandparents willing to indulge that type of adventure.
 
We talked, we laughed, we saw old friends, we drank, we hiked and hiked and hiked, and we danced some too. We experienced the breath-taking glory of Rocky Mountain National Forest. I stared from the top of mountain after mountain, at thundering waterfalls, in sun, snow, and hail, four climates in one walk, with awe, admiration, and wonder.  Along with the array of emotions brought on by the magnitude of the presence of something so much bigger than myself re-emerged the crushing understanding that the God who created this vast glory, the architect of all beauty, didn’t build Matthew’s internal organs in a way compatible with the life I dreamed of for him and for us.   
 
My sweet partner is in his element here. This man was made to hike mountains and has a deeper appreciation for nature than one might think humanly possible. And on long, arduous hikes, away from technology and rules, it is very easy to remember that we are both very funny and rather strong.  After hiking 15 miles, as I was traipsing down what I thought was the final path, Mike said, “What if I told you we had to do it all over again?” Without a moment of hesitation I said, “Of course we could. It’s just a matter of putting one foot in front of the other.”
 
As soon as the words came out of my mouth, I realized this is who I have become.  The line in the sand of my life is September 18, 2014.  My whole being straddles the line of before and after.  Surviving the after is literally putting one foot in front of the other, regardless of my internal monologue. 
 
Most days, I am quietly re-playing moment after moment of Matthew’s life at CHMC.  Replogle, Vent, G-tube, TE fistula, Craniectomy, ECMO. May you never know what these words mean.  Some days, I am paralyzed by the deafening voice in my head screaming at God that He got it wrong.  Tonight, I am seeing 3 a.m. because the sheer panic of living life without him has stolen my breath and brought me to my knees.
 
But the truth is, the after has to be more than that. God and I are a work in progress.
 
September 18. Bed-rest and contractions followed by the epic gush that few women will know of water grossly breaking. The rush to the hospital, the ambulance to Children’s, the abruption which aptly describes not only our lives on the edge but the way we crossed the line forward into the beginning of the after.   But most of all, the “sqwauk”. The very unexpected, against all odds moment Matthew “sqwauked” for an operating suite of 30 of Children’s finest nurses and surgeons. The sqwauk that let me know that we would both live to see another day. 
 
The rest of September is a blur, but if you have the time I can describe for you every moment, every difficult conversation, every rounds, every ounce of breast milk pumped and delivered by G-tube fortified with preemie “jet-fuel.” More medical drama than the average medical student will witness in a lifetime.  But we made it to October and November, our sweet spot.
 
Matthew spent October and November growing and getting to be a baby.  Between Enterovirus and flu season, the CHMC restrictions meant that many of the people I love in this world never had the chance to hold him or even meet him in person. We are lucky that they carry him in their hearts although they were banned from holding him in their arms.  I would literally cut off my arm to go back to those days. 

He was so smart and so darling and so fragile.  I believed that his visual tracking skills of his obnoxiously large crib mobile were beyond compare! Like his siblings, he was strong-willed, but uniquely Matthew, he was much more sensitive.  I wondered what it would be like to bring him home to the chaos of our crazy house because he loved the quiet and the calm. 
 
My dream life centers upon the nights there were nurses willing to look the other way and we **gasp** snuck all six of us, four pajamm-ied children, into his NICU room for movie nights.  The hand sanitizer I would bathe the older kids in to make them “safe” is still used in the entire Children’s system and the smell brings me to hysteria these days.  James and Abby, then six and four, could not have been more proud. It is hard to explain though, what it means to have a six-year-old who can adeptly interpret a pulse-ox monitor.  If I could return to any moment in my previous life, you’d find me in mid-November, in a rocking recliner with Matthew snuggled into my chest. Yes, we were dragging a replogle and a nasal cannula, yes, we were accommodating a G-tube, yes, we were 10 miles from Madeira, but we were HOME.
 
Matthew had big, gorgeous, ancient eyes. He had the deep, wise, eyes of my grandfather, and if I am honest, I always knew his eyes and his soul were very old for this world.  He gave Mike and I the gift of his first smile at the same time, which with Mike’s job and three kids at home, for us to both be present to witness was amazing and perfect. He gave us hope. The kind of hope that buys bunk beds and makes plans.  The kind of optimism that we were going places. That HOME could become one location.          
 
December meant surgeries, but I believed in Matthew, and his penchant for beating the odds.  Our Christmas gift was to be one last surgery and our ticket home.  December 16, after a 9 hour surgery, Dr. Lim brought us in and told us the surgery was successful, his esophagus was connected.  It was long but had gone well.  I was able to breathe for the first time in 3 months. 
 
The following days and weeks are the works of nightmares.  Ultimately, his one lung was never able to recover.  Matthew Glasgow Theobald died from complications of a pulmonary hemorrhage on January 14, 2015.  He had left us.
 
So here we are three years later.  One foot in front of the other.  Looking for meaning, but mostly just surviving. With a side of awe and beauty and wonder.
 
Matthew’s life was a gift. Parenting a child in heaven makes me a different parent to the three I have at home.  Every parent cherishes their child, but having Matthew has forever altered our appreciation of tiny moments and good health.  One foot in front of the other takes us on this journey back to him.  Being witness to his life shapes our understanding of the universe and our need to connect with those we love.  The road is long, and I struggle every day to understand how to honor Matthew in our life along the way. But I am pretty sure the love of our people will guide us along the path and bring us all home. 

This old fridge door

You're still here, seven years later

Would've thought you'd be replaced by now

By one of those gleaming stainless steel guys

The one with the water dispenser I use with envy at my friend's

But here you are

Nondescript and how old I wonder?

You have stories of your own from back before my family invaded your space

And now you hold mine, proudly displayed on your chest

My cheering squad, my Reason

My belief that love remains, light remains always

Nieces and nephews, weddings and godchildren, sons and daughters

My promise to four beautiful souls - I will not forget you

I will carry your love, your goodness in my heart

This old fridge door is the shoelace tied around my finger

I will not forget you

I will not take this day, this moment for granted

But of course you see that I do

The hundreds of time you are opened and closed without a second glance

But I know you forgive me, you let it slide by 

Knowing I will come back around, when fear strikes deep

When I worry that another soul will be added

Because it will happen, because this is life

You remind me, there is always love

The Love and Loss Sandwich

Tuesday February 7, 2012 I was downtown in DC walking back to my office from a lunchtime errand. It was a beautiful mid-winter day, the sun was shining with mild temperatures and I remember a little skip in my step. Then, my phone rang. It was a doctor I had never met. My dad had suffered a massive stroke. His second within one week. It was unlikely he was going to survive.  

At some point that day I know I went to my house to pack. Before I got in the car to drive north I placed a card on my husband Curt's pillow. I wouldn't see him for his birthday the following day. My brother-in-law drove my sister and I up to NY that night. I left my husband with our two small kids, ages 3 and 1.

Three days later, at my parent's house. My family is together again. My dad's funeral is the following morning and I'm giving the eulogy so I'm trying to get myself to bed.  I remember Curt coming up to hug me and saying "John died". It was dark in the house and quiet. I remember him being on the phone and making calls to try to figure out what was going on with John, his childhood best friend of over 20 years. I remember feeling utterly confused, defeated, and saying "No, no, no". 


Five years later, we are still recovering and grieving from those events. You can imagine how many people continue to be affected by what happened. That week came shortly after my son had turned one - a year that was filled with uncertainty and, frankly, terror, about his congenital heart disease. We didn't recognize the lives we were living. Our world had completely changed. I believe that each of us in my little family; myself, Curt, and both of our kids, continue to feel the effect of that week on our collective psyches. Those events continue to influence decisions we make almost daily. "What would John do" has become our family credo. 

In the years since then, after the holidays are over, I can feel this week approaching deep inside of me. I still don't know exactly how I should feel or what I should be doing during this week. But I think that is one of the biggest lessons that I've learned so far: there is no "should" in grief. There is no place for "should" in the way you remember a lost loved one or don't. Acknowledging and truly giving yourself the space to accept that there is no right or wrong can be very impactful. We have to go easy on ourselves.

You may have noticed that in between these two deaths that rocked our world lies my husband's birthday. This is meaningful. This forces us to celebrate life in a week where I would maybe prefer not to. If you have kids you know that birthdays are huge and have to be celebrated to the fullest. And so that's what we do. 

This year I decided to take Curt and the kids to a professional hockey game to celebrate. It was the first one for the kids. The anniversary week was a tough one, but on Saturday night we drove into the city for the game. The kids were in heaven. My daughter took to screeching at the top of her lungs, causing most of us seated around her to go temporarily tone deaf, but sure enough the 20-something guy in front of us was high fiving her halfway through the second period. We came back to our seats after a break for treats and a woman seated nearby, surely a season ticket holder, handed each of my kids a 15 inch stuffed Capitals mascot. I was blown away. Generosity abound in the nosebleed seats. 

It was the type of in-your-face gesture I needed that week to wake up to the good right in front of me. As hard as it might be to celebrate in between the anniversaries of the deaths of two dearly loved ones, I'm choosing to see it as a opportunity to challenge myself to find the joy that's asking to be seen around me.

Remote

Dedicated to my dear friend Kristin in memory of her son Matthew.


My headphone wasn't working so I found myself yelling at my phone alone in the car. It was Maryland and the last thing I needed was a ticket. I hadn't really wanted to call my mom, but knew she would be upset if I didn't tell her about my trip. 

But you've never met her before, right?

I could feel my blood pressure mounting, my chest getting hot.

Are you sure you should go? It's such a long drive and I'm worried about the weather.

A baby had died. Wasn't it always worth the trip? 

But, as I hung up and flung the headphone across the seat, I acknowledged that my mom was right. I had never met her before. In person, that is.  

It was in the midst of a months long hire spree when we first interviewed Kristin. What I can recall most is that she was upbeat with an energy that shot right through your earpiece to announce I'll be a great addition to the team! She was hired in no time and I was assigned to be her trainer. 

Only our manager worked in an actual office building with cubicles and a water cooler. The rest of us fanned out around her, little chickens to our mother hen, spread throughout this country and Canada, sitting at tables in our home offices, guest bedrooms or kitchens. 

Kristin and I hit it off from the start. To be clear, she would have hit it off with the lowliest slug of office life, because that's just who she is. We became fast friends and colleagues, always willing to extend each other a hand for work and connecting about family life when we could. With only a virtual office space, it was sometimes challenging to build personal relationships, but ours came easy. 

Kristin was pregnant with baby #4 when we started working together. As the consistently overwhelmed mother of two, I was in a constant state of wonder when I pondered her growing family, successful career, and world-traveling husband. I came to understand that she makes it look effortless because she truly adores being a mother and revels in her role. 

Not too long after we started working together, Kristin learned that the baby she was carrying would be born with serious health complications. I remember scrolling through my Blackberry as we drove home from a family beach trip, skipping past all the actual work to pinpoint the ultrasound update she had promised to send me. I never found it because she didn't send it. A familiar sinking feeling developed in my stomach as I realized what that meant: not good news.

From right around that time I started believing that a force bigger than both Kris and myself had brought us together. Becoming labeled as a high risk pregnancy and facing the reality that the baby you are carrying may not survive was something I had experienced just a few years before I met Kristin. The first few weeks after my son's in utero diagnosis were some of the loneliest of my life. I felt honored and compelled to figure out how to be there for Kristin as she navigated that time.

Adorable baby Matthew was born after an extremely eventful delivery on September 18, 2014. He faced many pokes, prods and procedures during his first few months but seemed to be making progress. Kristin essentially moved into the neonatal intensive care unit (NICU), setting up office and take conference calls from the family waiting area on the floor. Just imagine this for a moment - your tiny, medically frail baby in the NICU with no real idea of his future, three (three!) other children at home, and working mostly full time at your baby's bedside.  She did this all with the beautiful grace that is singular to and defining of Kristin.

We were in close contact during these months. We still hadn't met in person as we live eight hours apart. We mostly texted - she sent me details that only a person with a medical background could understand. I would read them, cry, and text back. I had no words so I said the same things over and over again. l send my love. I am here for you. I am praying for you. I saw scariness and unknowns. She saw small steps forward and blessings everywhere. 

In December Matthew underwent a surgery that his family hoped would be his ticket home for the new year. But instead of moving him forward on that path the surgery seemed to send him on a new one altogether. Things were bleak. When that terrible acronym, ECMO (a form of life support), came across on a text from Kristin I knew that we may be nearing the end.

Matthew died on January 14, 2015.

On my son's 4th birthday.

The day of the funeral I walked into the church with my colleague and a little note of apprehension in my chest. I hope she doesn't think I'm some stranger seeing her on one of the most vulnerable days of her life. But the moment she saw us she smiled in recognition. The first thing I said to her was: You are so much taller than I expected!

This story I'm sharing is not meant to be Matthew's story or the story of my friend's grief. Those aren't my stories to tell.

This is the story of a friendship. It's the story of two paths crossing at a very particular time. It's the story of noticing; choosing to see the connections between us and believing that we were brought together to serve a purpose to each other.

I've moved on to a new job. Kristin and I communicate much less often. She is bringing communities together for fellowship and fundraising in memory of her son. She's doing amazing things and infusing her spirit into the world. Her message - to love and embrace life - will always stay with me.  

The Last Christmas

If holidays are about traditions, one thing's clear; Christmas will be celebrated at my parents' house. I have spent only two (of 37!) Christmases elsewhere. I was raised in small town Western NY where trees lining Center Street twinkled with lights and the empty lot down the road was frozen over for ice skating during winter months. As in, someone filled it with a garden hose and the neighborhood kids walked over, lacing up their hockey skates. So far north that you can see Canada at the end of the street and snow was almost a given on Halloween. Idyllic? Not always, but generally speaking, yes. 

This house is my childhood. Where my dad played Neil Diamond on the record player and my mom ate a cookie for breakfast every morning. Where my little sister slept with me in my bed for years because I didn't like to sleep alone. Then later where I kicked an actual hole through her bedroom door during a fight (about She-Ra? Barbies?). 

The house we gathered in the morning of my wedding. Where all four of my parents' grandkids will have spent their first Christmases. Where my dad was when he suffered the stroke that killed him. Where I slept with my mom the day he died. They weren't all good times, for sure. But they are all ours. Our history is this house. 

How do you say goodbye to your history? This will be our last Christmas in our childhood home. The For Sale sign goes up March 1. Sure, those memories live inside of me and don't simply disappear. But there is something about walking into this house that evokes such strong images, scents, sounds. Despite all the times of struggle, I feel such love emanating from those walls. I feel a deep sadness that I will no longer walk in through the front hall and picture my dad sitting the family room, getting up to give me one of his bear hugs.

A new stocking will be hung this year, before the boxes are packed, for the newest addition to our family, my beautiful 6 month old niece. I'm a person who tends to experience losses more significantly than joys, but I'm hell bent on soaking up this last Christmas for all the imperfection that it will be.

So this is my love letter/goodbye to, as Miranda Lambert calls it, The House that Built Me.

A Cup of Grace

This essay was published in the November issue of Holstee's Mindful Matter

There was a crispness in the air as I plunked down on my neighbor's driveway. It was twilight of a beautiful early fall evening. The first day of the new season that we had put on our sweaters to go outside. My son and my neighbor's son, both recently minted kindergarteners, were running and laughing and pulled out a big bottle of bubbles. My job sitting there was to keep the bubbles from toppling over and to watch for cars as they ran screaming into the cul-de-sac for their bubble popping game. 

I sat on the hard, chilly cement, letting the boys' laughter wash over me. I told myself to breathe, to listen to the sound of their voices. To be in the moment. I was glad to be out of the four walls of my house for a bit. It had been a long day, a day in which I was mostly stuck in my head contemplating and lamenting my changing relationship with my aging parent. We had several big, looming decisions to make that would significantly impact her life (and mine). I needed some air.

My neighbor, mom to my son's playmate, a lovely Cambodian woman with gorgeous, long, jet black hair and the warmest eyes you've seen was suddenly at my side. She was crouched down holding a steaming turquoise, ceramic mug. She held it out to me and I grasped the mug in both hands and let the heat warm them for a moment. I put the mug to my nose and soaked in the sweetness of the honey and tangerine. Then, I took a sip. The warmth, the sugary syrup, the pulp of actual tangerine, it filled me like a warm hug. As if my friend had given me a special elixir for my worry. What was this stuff? For the next ten minutes I relished every sip of that tea. I could smile with ease at the boys' game and the cloud of uncertainties fogging up my mind was lifted. It was such a gift, this cup of tea from my dear neighbor. 

Life doesn't slow down when big things happen to us. It seems as we get older, those big hard things just keep happening faster and more frequently. The daily small acts of kindness we give to each other are our fuel to keep us going. It was just a cup of tea, but it was really so much more. 

 

The Taste of Memories

"What's for dinner?" I asked my mom this question every night as a kid. I was obsessed with her cooking. As I got older I would get home from school, make myself a quick dinner of english muffin pizza before I headed off to my four hour gymnastics practice. Afterwards, when I got home at 9:30pm, exhausted and sore, I would eat a second dinner of whatever Mom had made that night. It filled me up like nothing else could.

These are the things I think of now, as a working mom of two, just like she was. When I feel burdened by all of it I try to conjure up the image of her in the kitchen of my childhood home, buzzing about with the delicious aroma of homemade stuffed peppers filling the house.

I have an old, falling apart folder filled with many of her recipes, some of which have my dad's fax number on top - which means he brought these recipes to work and snuck in a quick personal fax so that I could get my hands on the Tropical Spinach Salad with Grilled Shrimp recipe. Always an intense rule follower, this little act of insubordination on my dad's part makes me smile.

I look at the date on that particular fax: 2006. Only ten years, but it seems so, so long ago. A dream almost. There are no more recipes faxed from Dad, as he died almost five years ago. And Mom's health has changed so significantly that she would not be physically able to write "Bridal Shower Dish!" today as she did on the page of that salad recipe ten years ago. Mom isn't able to cook anymore, either, which is heartbreaking for her and me both. Mom's cooking was a true and pure expression of her love. Lucky for me, I inherited this gift, the joy found in cooking and sharing, from her.