Here I am, In the Airless Room

Her need traps me in a tiny room with no windows, no door, no air. There is no one to come save me and I feel desperate, unlike myself and not the daughter I want to be.

No place can protect me from the airless room. Not when I’m on vacation, eating donuts and coffee out on the porch, admiring the sun rising over the expansive ocean. Not when I’m teaching my students, intent on sharing with them the shapes and symbols to create a family tree.

Even here, secluded away in this picturesque setting with mountains and lake, where I’ve just practiced poetry and taken mindful breaths in Child’s Pose, I’m at risk.

Mere minutes after that zen-induced state, I hear her voice through the phone and I’m snared, caught in the tiny room. “Where are you?” she demands. “I can’t keep track of whether you’re working or with the kids. You and your sister, always traveling around.” I hadn’t told her I was going to a writing retreat, dropping all responsibility, including the responsibility of her, to come here to do this thing for me.

I want to protect this part of myself from her. Or not from her exactly, but from the dementia that seems sometimes so big it is the air I breathe, the food I eat. I’m afraid if I let her see my creativity, the dementia will gobble it up, swallow it whole.

Before this disease stole my mother away, we shared everything. She was my confidante and best friend. When I first became a mother, a year before her diagnosis, I called her from my car every day during my hour-long commute, hysterical. I was distraught that I could not figure out how to be the mom my infant daughter needed. As time stretched on, anxiety crept in, telling me I would never get to that place.

My mom stood by me steadfastly, never wavering in her support, always believing that I had the ability to figure it out. This was the person she had been throughout my entire 30 years on this earth. I wonder now why I can’t access that kind of patience within me, now that the tables have been turned.

Here I am, guiding her foot into her left pant leg, having carefully chosen the pants with no button or zipper, and praying she holds steady on one foot as I crouch on the floor beneath her.

Here I am, hopping up from the table at the restaurant to wipe the glob of salted caramel ice cream from her lap after her spoon missed her mouth. All the while trying to be discreet so as not to draw attention to her disease, and also to act as quickly as possible in the hopes that she doesn’t notice me dabbing her lap because that would mean she would have to acknowledge that help is needed.

Here I am, buckling her seat belt as I drive her to yet another doctor’s appointment, steadying myself to retell the story of eight years of the slow loss of a person. The person who was my person.

Here I am, trying to get out the door of the apartment that we moved her into last year, 400 miles away from the place that she called home, and feeling the well of guilt and anger as she cries because I am leaving, because her world has become so small that she no longer has the cognition to comprehend what it is to have two kids waiting at home, the grocery shopping to do, the lunches to pack.

Here I am, sent to the small, suffocating room by this seemingly innocent question. I could gloss over it by evading and responding to her questions with a question. These days I withhold details and logistics from her, because they cause confusion and aren’t essential. This question gets me though. Isn’t “Where are you?” a timeless question mothers ask of their children?

Doesn’t she have a right to know simply because she is my mother? To evade would be to lie. To the woman who gave me endless amounts of time, energy and love from a well that never dried up, that feels like a deep betrayal. Despite the complete reversal of roles that has transpired over the last few years, I do what’s asked of me and, finally, I tell her where I am.


Published on July 30, 2018 by Rebelle Society.

Summer series: Grief

I’ve thought about, studied and experienced grief for a long time. Here are some seemingly simple universal truths I’ve learned. 

Grief never looks the same from person to person.

Grief does not follow a logical path. 

Grief can come and go.

Grief happens not only when someone dies, but when we experience the loss of a dream, a relationship, an expectation. 

Denial of grief doesn’t always feel like denial and can last a long time. 

Our western society and the people in it do not do the best job of supporting those grieving.

Trauma and grief often go hand in hand.

Grief is a chapter in every human story.

I was introduced to filmmaking duo Lexi and Zach Read of Rhyme & Reason this year through my congenital heart disease community. Their films are breathtaking. I wanted to share this one with you today.

He won't even sit with me.

I feel like I need to qualify some things before I hit publish on this piece, but I'm trying to just let this one be. Once on an evaluation form for a graduate class I taught, a student wrote that I spend too much time introducing the subject instead of just getting to it. So, just one quick thing and then I'll get to it: I have my mom's blessing to write more openly about her condition and its effect on our family.

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We were riding in the car together. I was taking her home after my daughter's birthday party. It had been a fun, if chaotic, evening. Lately, Mom has been getting worn out quickly during these family functions. Worn out leads to confused leads to agitated so I was eager to get her home and settled.

She said, I want to talk to you about Griffin. Her brain is so tricky, because it is still able to formulate such complex thoughts in one moment and has complete tunnel vision in the next. She's able to convince renowned experts in neurology into thinking she's much more capable and independent than is actually the case. I've found that conveying the nuance of my mom's condition, a rare form of dementia, is like trying to swim in mud. The little moments are revealing though.

Ok, I reply, let's talk about it now. I'm not sure what it is about my seven year old that's bothering her. He won't talk to me or play with me anymore, she says. Her tears come immediately. We used to play games together all the time and now he won't even sit near me. If I sit near him he gets up and moves. 

I want to say oh, that's not the case at all. But she's right. I'm surprised that she's noticed because her condition makes it hard for her to judge social interactions. I take a breath and say, I've noticed too. It's confusing for them, Mom. It's confusing for me, so imagine how hard it must be for the kids. He doesn't know how to act.

But I'm still the same person, she says. I'm still me.

No, you're not. The thought is quickly formed in my head, but I catch it before it comes out of my mouth. This is the person that I considered my closest friend in life, the person who knew me best in the world. For a decade bits and pieces of her have been slowly falling away. I try to be present and be grateful that the decline has been so slow. When I do allow myself to reflect, it feels like I'm grieving. She seems unable to understand that I am deeply sad about her decline. Maybe she's incapable of this type of empathy now because of what's happened to her brain. Or it might simply be that it's hard to acknowledge that this disease is affecting her daughters and grandkids on a deep level. A particular cruelty of this form of dementia is that she herself is fully aware of the abilities she's lost.

I've noticed this happening more often. She says something with which I disagree, where the whole situation is not being represented, and I don't know how to respond. I feel so stuck. Every response is the wrong one. Reminding her that she can't play any games with the kids because she is essentially blind and can't see the faces of the Guess Who game much less have the coordination to tap the figure down is not constructive. Going along with her head in the sand view that, Everything is just fine, doesn't keep me in integrity with myself. I think I know what she means when she says this - that at her core, the truest essence of herself, she is still the same, even as all the former capabilities slowly get stripped away.  I've started to stay silent in these moments, all these thoughts whirling in my head


Lots of us are dealing with dementia in a loved one. I became a member of the sandwich generation earlier than many. I was 30 and pregnant when my mom was diagnosed. I have a wonderful support system and a terrific therapist. Still, I feel an internal drive to write about it to bring it out into the light. If you are experiencing something similar know that I see you. I see your shoulders hunched forward and the rise of anxiety in your chest when your phone pings. I see your struggle.

Do you know someone who would benefit from reading this? Please share. 

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.

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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.  

What are your two words?

I have been feeling off balance in recent weeks. Many of us have. I have realized that some of the things I've said surrounding this election caused my kids to worry and to feel scared. I have been floundering around searching for the right words to use and mostly feeling like I can't find them. 

When my dad died suddenly four years ago my daughter was three. She was and is a kid that soaks in all the emotions of the people around her. It was very clear she knew immediately that something was not right. I felt so strongly that we needed to convey the truth to her about her Papa. No matter how hard it was for us to do that. My sister helped me come up with a phrase that we repeated over and over again: Papa got very sick and then he died. We showed her the Sesame Street clip where Big Bird talks candidly about Mr. Hooper's death. We have talked openly about death almost every day since then and she has had many, many challenging questions for which we attempt a response. 

I don't know of a Sesame Street video that can help us convey our country's current situation. But I do know that there are two core values we uphold as a priority in my home. They are kindness and respect. These days, when I don't know what to say, I fall back on these values. It's almost become a mantra for me. Kindness and respect, kindness and respect. I know I sound like a broken record to my family, but this is the best I can do right now. I will always trust kindness and respect.

We attended our Interfaith gathering last weekend and I was happily surprised to hear our Rabbi asking us to think about two ideals which we hold dear that we could use as a peaceful meditation during these difficult days. I heard members of our community sharing "love and justice", "compassion and peace", "action and equality". My daughter and I shared a look and a smile spread across both of our faces. I raised my hand to share. You guessed it. Kindness and respect.

 

Searching for Light

Turns out we need to actively search for light. In the thick of it. 

There was a time when I was pregnant with my son where a darkness washed over me. I wasn't myself, but I didn't know where my normal self had gone. It was like wearing sunglasses 24/7. I didn't see the everyday beauty around me. I didn't notice the brisk fall day with the leaves changing into bright colors.

It hit me worst when we were out. One evening we took our daughter, age 1 at the time, out for dinner. The hostess sat us next to a family of six. Four children; pre-teens and teens. The girls had shining, long blond hair flowing down their backs and the boys had clear skin and confidence. They looked like a page ripped from a magazine and I imagined they came from picture perfect home with soaring ceilings and a gleaming kitchen. The contempt I felt for that family just flowed out of me. It was so powerful that it felt like the air around me would turn into a black cloud. One glance at them and my eyes filled with tears, but I kept looking back, like a car accident you know you shouldn't be seeing. 

The universe seemed to be mocking me. I felt like a solo line dodge player with The World on the other side of the line, pummeling balls at me. I remember the details of that restaurant as vividly as I remember the details of the pediatric cardiologist telling us that our son may not survive to term.

When our world changes like this, nothing is the same as it was. But the world goes on spinning around us despite it being confusing and bewildering. Eventually, the tint on my sunglasses lightened up a bit, but never went back to the way things were before.

Sharing my stories helps me adapt them into my life. And to gain much needed space. I believe this to be true for all of us. Listen to my own audio recording and consider whether this is something that might help you adapt too. I would love the chance to hear your story.

What if it doesn't work out?

We human beings are not so good at being with each other in hard times. I get it, it's scary and makes us anxious and really it's just so much easier to scroll through Facebook. But, it really matters, this reaching out to each other. And please don't say it will all work out when you do.

Picture yourself in your personal moment of struggle. Big or small struggle, either will work. Let's say you've been working your tail off at your job for several years. You've received stellar evaluations and you're a solid contributor. There's an opening for a management position and you are one of two contenders. And the position is given to your colleague, who is more of a "team player".  After hearing this news from your boss you walk to the office kitchen to take a breath and get a drink of water. You bump into a colleague who asks excitedly whether you've heard yet about the position. You tell him the news, I wasn't chosen, tears stinging the corner of your eyes. And he replies with: don't worry, things have a way of working themselves out.

Yes, I know this has happened to you because it's happened to all of us. Yes, I am as guilty for saying these platitudes as the person next to me. 

Have you ever been inside a neonatal intensive care unit? Despite having worked in medicine for years, the first time I visited the NICU was when I was 30 weeks pregnant with my son, who was destined for the cardiac version of the NICU. As we entered the ward, it literally took my breath away. This is truly a place where life hangs in the balance. Life is suspended for the families living here. While the rest of us wave goodbye to the bus, sit in traffic, hit send on another email, their lives revolve around a tiny little being in a huge bed, surrounded by stacks and stacks of monitors and machines. That mom sitting next to that baby? She hasn't slept in her own bed in weeks and has no clue whether, when she finally does get back to that bed, there will be a baby in the bassinet beside her. That mom has heard it's going to be okay more times that she can count. 

We say this because we don't know what else to say. But sometimes we say this to create a distance between ourselves and the struggle because we don't want to get too close. Struggle is messy, uncomfortable, and very, very scary.

That mom in the NICU needs us. That moment in the kitchen with your colleague is a chance for connection, a chance to be seen. How about: that's really hard or I wish it had turned out differently or I'm here for you, I believe in you

The truth is, that deep down, I do believe it is going to be okay. But it might be a long time before it gets there. So in the meantime, take a breath and say something to create connection instead of creating distance. It doesn't have to be perfect and we can mess up along the way, but we'll never get there if we don't give it a try.