Four Seasons (and Reasons) of Boston

 
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At the end of 2017 my husband, Curt, was selected to run the Boston Marathon for the Ethan Lindberg Foundation, a nonprofit supporting families with congenital heart disease. In January our family traveled to Boston to be featured in their promotional video

 

Marathon time - our family raised over $12,000 for the Foundation and Curt finished the race in just over four hours. It was a day filled with all sorts of emotions - thrilled to be part of the event, moved by the runners persevering in freezing wind and rain, gratitude for the doctors that saved my son's life (like Dr. T pictured here), and devastated that congenital heart disease continues to take so many children away from us.

 

In late spring after a routine echocardiogram for my seven-year-old son, Griffin, we were told he needed more intensive testing. We headed north to Boston again in August for Griffin to undergo a cardiac catheterization and MRI. We knew there was a chance surgery would be indicated and sure enough, it was time. This picture shows Carly and Griffin at the rooftop garden on top of Boston Children's after we got the news. 

Fall

This week we will travel to Boston for our 4th trip in 2018 for Griffin's open heart surgery. My heart is aching and I'm scared, but when I reflect on traveling to Boston for Griffin's birth I realize what a long way we've come. Back then, we had no idea what Griffin's life would look like and now I've had the great honor of being his mother for almost eight years. This disease truly affects everyone in the family and traveling far away for care takes a big village. I know how fortunate we are that we can make this happen.

I'm taking a little break from writing to focus on my family so you won't get my newsletter for the next couple of weeks. In the spirit of my new program, Sanctuary, I'm challenging myself to find a moment of sanctuary each day while Griffin's in the hospital and I'll be posting them on Instagram with the hashtag #orchidstorysanctuary. 

This time of year can feel overwhelming for many of us; I invite you to come join me on Instagram and share your own version of sanctuary with me. I'd love to see how you create safe, warm, and inviting spaces for yourself amidst this busy season. 

Finally, this year has held so much goodness and growth for Orchid Story. I want to say thank you to each of you for reading these words, sending me sweet notes, taking my workshops and classes and giving me all the good vibes. My hope is that by sharing my own stories of finding strength in my struggle you feel encouraged to do the same. 

Marathon Monday

On April 16th my husband, Curt, ran the Boston Marathon. Throughout the entire training process, every time I talked about the marathon I said "we," as in both Curt and me, as if I was running the marathon too. It just came out. I am not a runner and in fact I can't quite stand running. I think it's because when our partners decide to commit to something big, we feel a stake in it too. We want it badly for the person we love and we often have a significant shift in our daily schedules too.

Because he was running for a charity, Team Frannie of the Ethan Lindberg Foundation, this added to my feelings of connectedness to the race. I wanted to give back to this organization that had been alongside us since my son Griffin was diagnosed in utero with congenital heart disease (CHD) seven years ago. 

Also, the lives of several children who had died of CHD were integrally woven into this race: Ari, Chase, Ethan, Frannie. Their moms, dads, and siblings would all be present on race day. 

On race day, Curt got up early and headed out. The weather was as bad as predicted. The kids and I sat in the hotel restaurant watching the elite runners and wheelchair athletes at the starting line.  The rain was already gushing in torrents over the hotel entrance, soaking passersby. I was anxious about Curt having to stand in the wet and cold for hours before he started. I was anxious about all of the runners having trained so intensely to show up for this weather. Then they did a tribute on tv to the five year anniversary of the Boston Marathon bombing and my kids starting asking what had happened. Yes, I was anxious about that too.

We headed up to the hotel pool and I watched Carly and Griffin play. My heart was hurting, confused and joyful. Hurting for the pain that CHD has caused these families and my own. Confused about how some kids make it and other kids don't. Joyful that we had the once in a lifetime opportunity to be in Boston that day and participate, in our own way, in the race. 

A little while later, we arrived downtown. We stepped out of the uber and within ten second we were drenched. The kids starting complaining immediately but we went up to Beacon St. to watch the elite women pass. At mile 25, they were almost done. 

We stayed inside for a while, keeping warm. But, I had only one chance to see Curt and I didn't want to miss him. So, the Team Frannie crew headed out to Beacon St. Again, fully drenched within seconds. The rain was coming in sheets, sideways. By now the runners were slowing down. Many were walking. Several were already wrapped in the silver thermal blankets they normally receive at the end. Some were in between two runners who had their arms wrapped around the middle runner, almost carrying the person along. A double amputee made his way by on his prosthetics. I could see the pain in his clenched face.

About 15 minutes before we expected Curt, I took my hand out of my glove and held my phone, with the camera open. I wanted to capture the moment on video. This meant that my hand and arm were sopping wet and frozen and that I couldn't follow Curt on the tracker app because I wanted to keep the camera ready. 

The 15 minutes came and went. By this time Griffin was crying hysterically. He was freezing and wanted to go inside. Carly was ready to give up on seeing Daddy too. I couldn't hug them because we were too wet and I was holding an umbrella and the Team Frannie sign we made and the phone. I tried picking Griffin up and putting the umbrella down but that made things worse. 

I needed to make a decision and quick. Should I let them go inside and get warm? My mother's instinct said yes, especially for Griffin whose health could really be affected by this weather. But my human instinct said no. Their dad had undergone a grueling training for this day. The families standing next to me had undergone weeks and months of hospitals stays for their sick children. And, even if they didn't feel it right then, my kids would always want to have the memory of seeing their dad at mile 25 of the Boston Marathon. So we stayed out.

I started wondering if we missed him. What is he wearing? the Team Frannie supporters wanted to know. I didn't know or couldn't remember, the anxiety getting the best of me by this point. Is Griffin ok? they asked. I wasn't sure.

Finally, we spotted him through the driving rain. He looked fantastic - a big smile on his face and a great energy in his stride. I instantly felt ten pounds lighter. The kids switched from crying to cheering. I pushed the red video button on my outstretched hand. 

He gave us a each a kiss and then he was gone. I looked at my phone and realized it hadn't recorded the moment. I tried again as he ran off towards Boylston St, the final stretch the runners dream of. 


All the struggle and pain and beauty and transformation of life was happening right in front of us that day. Feeling so many emotions at the same time IS life. I was filled with pride and love as I watched Curt run past. Then I turned to take the kids in and caught the eye of my friend Jessica, mom of Ethan, and became filled with sadness for the loss of his life. 

Life is not black and white. It's not either or. It's messy and gray, confused and beautiful. I'm lucky to be here, right in the middle of it.

We Run For Them

Orchid Story started by telling my story of my experience with my son's diagnosis of congenital heart disease. Like all stories, this story keeps growing and evolving. My husband has taken hold of it in a new way this year - he's running the Boston Marathon to support the Ethan Lindberg Foundation. I feel compelled to share this video here with you all. #werunforthem

Your story doesn't end.

Last weekend, in sub-zero temps, my family traveled north to Boston. It had been seven years, exactly, since the time we spent there when my son Griffin was born. It was a weekend to feel all the feels. 

My husband is running the Boston Marathon this spring in support of the Ethan M. Lindberg Foundation team, Team Frannie.  Our connection with the Foundation runs deep. Over seven years deep, if anyone is counting. They were the moms who connected me to other moms in the early days of Griffin's diagnosis, when my belly swelled in front of me and his heart was the size of a grape. I've followed the stories of so many heart families supported by this foundation in big and small ways.

The four runners on Team Frannie were in Boston together to film a video capturing their own stories of connection to congenital heart disease (CHD). The families of the runners were invited to participate too. It's hard to put words to the feeling of being in the same physical space as these families, all touched deeply by CHD, who have chosen to put their energies towards helping other families. Well, and towards running many, many miles. Several of the moms with us last weekend, including Ethan's mom and Frannie's mom, have lost their children to this disease. So yes, there is a great sadness. And, there is also a great hope. A great light. That from the deepest, darkest place a tiny seed can be planted. It may take a long time, but that seed can grow. The sprout may be tiny and it may be surrounded by grief, but still, it can grow. These families are a living testimony that the from the deepest pain can come the most beautiful joy. And yes, that joy is tinged with sadness, because life is both, not either or. 

The memories of being in Boston for Griffin's birth came rushing back. I have visual memories of that time and visceral memories that I feel in my body. There was so much uncertainty, deep, never-ending uncertainty that we had no choice but to manage in the moment. And now, seven years later, we have this joyful, endearing, sweet, sweet boy. Who still has not had an open heart surgery. 

We are so grateful and happy for Griffin's outcome. And I am so affected and saddened by the losses of other families. Again, it is both. I hold both of these thoughts together anytime, literally, anytime, I think of Griffin's journey. There is still so much uncertainty, but I have become much better at dealing with it and of course the intensity is not as strong. I think, well, actually I know, I am a better person for facing it and turning it around and around  to examine every day. 

Our stories don't end. I will likely keep rewriting my story of being a heart mom for the rest of my life. There is hope in that for me. That our stories can always be changed, they always will change. And that we can influence them, we have that strength. We can reach out to another mom to share what we've learned, we can choose to advocate for a cause we believe in. We can nurture the seed planted in the dark. 

p.s. One of the highlights of the work of this Foundation is a retreat for mom's who have lost a child due to chronic illness. If there is someone you know who might benefit from this retreat, please pass along this info. Moms are the backbone of our communities and we need to support them. http://www.ethanlindberg.com/retreat/

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? 

Uncertainty

You can imagine my dismay when, about five years ago, an elephant sized uncertainty moved into our house. There was no invitation. At times it's almost undone me, crushed me by his weight. At times I pretend the elephant is not there. And at times I have taken the elephant by the trunk and marched it to the front door. "You are not welcome here! It's time to leave. Goodbye, good riddance!" I walk away from him, the elephant of uncertainty; I can see him leaving in my head, squeezing through the front door. I run to my office downstairs saying to myself please go, please go, please go. I imagine he's gone. I tell myself: Finally! We can move on! 

But when I come back upstairs to get a drink, he's still there. Hasn't moved an inch.

If you have children, I wonder whether you recognized that so much of it would be filled with uncertainty? Our first year with our first child was enough to question my confidence ten thousand times over. And then congenital heart disease, this elephant, entered my life during my second pregnancy. The king of all uncertainties in my book. The question of your child's health. Life in the balance. We had an endless stream of questions after we received the diagnosis. When his heart was still the size of a grape. Would he be able to run and play like his sister? Would he have a normal life span? How many nights would we spend in the hospital? And the biggest uncertainty - would he survive?

In the five years since the elephant took up residence in our home, I've gotten more comfortable with his presence. I understand he is not leaving. There are stretches of time where he shrinks to the size of a tiny forgotten Lego in the corner. It's not a complete shock to wake up every morning and see him sitting there, like it was for so many, many months. It's been an active process of noticing what works and what doesn't, this living with the elephant. I've learned that I cannot let my wandering mind stay for long in the space of my son's future. Recognizing that I'm torturing myself with unanswerable questions is a first big step. When I catch myself doing just that, I try to bring myself back to the present. Stare out the window at the tree outside my office. Make a cup of tea and feel the hot mug against my hand. If he's sleeping, go into his room at stare at his skinny, adorable little self.

I've found my heart community; other parents of children born with imperfect hearts. Turns out community is essential to coping with the elephant, because as much as your friends and family can try to understand what it is like, the ones who have been there just know. The night before my son was born, in a hospital 450 miles away from home, my husband and I found ourselves standing in a circle holding hands with a beautiful stranger, a heart mom I had been communicating with by text, email, phone. Just beyond our little circle lay her son in his crib; physical proof that it was possible to somehow survive this, to live. I don't remember the exact words she prayed that night, but I have drawn on the connectedness of that moment in many other uncertain moments since then.

Sometimes the elephant makes me weary and I assign more certainty to a situation than is actually warranted. Eventually the thoughts come back; it must be time for surgery soon. My son been so tired, so cranky, not himself. It must be time. I start planning in my head the next trip to the far away hospital. One of our providers will put me back in my place. "Rachel, you can't schedule an open heart surgery simply because you want it done before he starts kindergarten." Oh. I guess I can't. 

I'm learning, in those moments, to go easy on myself. Of course this struggle with uncertainty is hard for me. I am, after all, human, Type A and all. We all deal with personal uncertainties and societal ones too, constantly. Acknowledging our struggle, recognizing what is within our control and what is not, and finding community can be useful for elephants of all sizes. 

The agony of uncertainty will always have a place. It's up to us to figure out how to live alongside our uninvited guest.