Book Club: The Orchid and the Dandelion Part 3

Dr. Boyce’s conclusions from The Orchid and the Dandelion are so well aligned with the mission of Orchid Story it has me dancing with glee over here. Watch my final video to understand what I mean.

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Book Club: The Orchid and the Dandelion Part 2

SIx Strategies to Help Your Orchid Child Bloom

from the book, “The Orchid and the Dandelion” by Dr. W. Thomas Boyce

Hand in Hand Parenting’s Special Time tool

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Book Club: The Orchid and the Dandelion Part 1

Where did the name for Orchid Story come from? From the very theory discussed in Dr. W. Thomas Boyce's new book! Join me to learn more about this fascinating idea that helps us better understand our children and ourselves.

You can find the David Dobbs article from the Atlantic here.

Reach out to me with your reactions or questions about the science. I’m obsessed with the ideas in this book!

My Title

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

my title.png

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. 

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. 

Trust and Faith

When you whisper "I love you" to your dear, beautiful child every morning, every goodbye, every evening. She usually looks away, she may occasionally shout "bye", but the three words you long to hear don't come out. You keep it up; every morning, every goodbye, every evening.

When you stand at the front of the church, the church he took you to every Sunday, except this time, you are standing in a different place. It is you in the pulpit, speaking to the people in the pews. And you are talking about him. He is gone. The people in the pews are a blur, but you notice curly blond hair in the back that you would recognize anywhere. You didn't know she was coming. She drove eight hours to be there. You find the strength to finish the eulogy.

When you know you've tried all you can and it's still not working. The day is a marathon and you're only on mile three at 11am. It hurts to come around to the realization that you are not able to figure it out on your own. Because you are the person who is always able to figure it out. You pick up the phone, in spite of this, and make the call for help. 

When you look your girlfriend in the eye and you see the same pain you feel in your heart. The specific pain of being a mother to a specific kind of child. You've been looking around for this spark of recognition and it feels like a homecoming to see it. You bring her a cup of coffee and say, "I know". 

 

You do not have permission to yell at my kid.

The last day of the week-long summer day camp. The day when the parents are asked to come in for: "An opportunity to see what we've been busy doing this week and celebrate with your child!" Aren't we paying copious amounts of money for this camp precisely because we need someone to care for them while we are working? And that missing an afternoon of work completely defeats the purpose? So, maybe I arrived with my feathers already up. I will say that.

The campers and parents are sitting around tables while the director calls out each child's name to come to the front. There are withering mounds of snacks and a musty, unpleasant smell in the air. The kids, ages 6-12ish, are restless and hot because it seems the air conditioner is not really working. My own camper is melting before my eyes. Her back is on the chair, arms flailed off to one side, legs to the other, backbend-esque. And she's kicking me. Not in an I want to hurt you way, but more in the I'm about to lose it and if I engage in some repetitive behavior that also forces mom to pay attention to me maybe I won't

This part of my life as a mother, this out in public with a child that's not behaving how everyone around her wants her to behave, has held some pretty painful moments. They've been some of my biggest parenting aha's. It takes every. single. ounce. of my self-control to not start screaming at my child to just do what I'm asking you to do and behave like every other kid in this room. But, most of the time and especially when I've had coffee and good sleep, I've trained myself away from doing just that. And when I say trained myself, I mean it's as if I've never walked across a balance beam and somehow came up with the goal of mastering the backflip on those four inches: it's taken years and endless piles of parenting books and a good therapist and many, many scenarios like these that did not end well. 

Another mom decides she can't possibly take it anymore, my methods are ineffective and she needs to intervene. "You need to sit up, stop kicking and start listening to your mother."

My heart skips a beat and every hair on my arms stands up straight. Simply because you are a mother does not qualify you to understand what is going on here. Simply being a mother does not give you permission to parent other people's kids. 

So often we don't know the struggles that other people face. Just like I don't fully understand lots of parenting experiences, many parents don't understand my child. Be mindful and lead with empathy. Our words can be knives that carve deep wounds into the hearts of others. 

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.

The shifts of time

We've religiously brought our son with congenital heart disease (CHD) to the cardiologist in regular intervals for the six years he's been alive (seven if you count the year he was in my belly when the whole thing started). It's become a ritual. For the first several years they could never get an accurate blood pressure on him and it would take several tries of torturing a baby, then later, a toddler, with that awful squeeze. Is it so important today? we would ask. And why such an archaic method; surely someone has invented an easier way to get a blood pressure on a squirmy, red-faced two year old?

But the worst part of these visits, the dark well of Griffin's condition, is the uncertainty. (I've written about that previously). His medical team was quite convinced he would need open heart surgery within the first year of his life. Every time an appointment approached I convinced myself it was time. And every visit that first year ended in, Let's wait another 1 or 2 (any random number??) months and check him again. This scenario has played out now over six years. He has not yet had the surgery we know is someday coming. 

So it seems, time really does go by. Kids grow. Parents say little excruciating goodbyes: goodbye to tiny onesies, goodbye to crawling, goodbye to early childhood as they hop on the bus the first day of kindergarten. 

This fall when our cardiology appointment approached, Griffin asked us about it before we mentioned it to him. When is it time to see the doctor who puts the jelly on my chest? It made me pause.  He's recognizing the importance of this in his life. On the day of the appointment he looked curiously at the monitor during his echocardiogram. Is that my heart? What is that color? What is that noise? He engaged in a conversation with our doctor about blue (de-oxygenated) and red (oxygenated) blood. She told us to come back in six months and he counted out when we should make the appointment.

I felt a real shift in me that morning. Griffin is beginning to take ownership of his heart condition. I've wanted to protect him from the uncertainty and anxiety I've always felt surrounding it, but I'm realizing that we have been in this together since he was an 18 week old peanut in my belly. And he's showing me there doesn't have to be so much angst tied up in his CHD. This is his normal.

After seven years I am finally starting to peek through my CHD armor. To talk about Griffin's heart without saying, but he will need multiple surgeries throughout his life and we have no idea when we might have to pack up and leave home for a long hospital stay. I am trying to breathe into, he is doing great and there were no major changes at his last visit.

Time and perspective have allowed me this shift. We all have BIG, HARD stories in our lives. Can you open yourself to a different perspective, a new chapter in your story? 

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.