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. 

Grace for the Messy Middle

However you visualize your Heroine's Journey, (I've found it to be a helpful way to put things in perspective) the Dark Night of the Soul, aka the Messy Middle, is part of it. It's a human experience shared by all of us. In my role as a caregiver for my mom with dementia, I am smack dab in this place. It's kinda a tough spot. In case any of you are also here with me, I thought I'd share some things I've been thinking about. 

The Cocoon
Awhile ago I listened to an interview with Britta Bushnell, PhD on the Atomic Moms podcast. She talked about confronting the unknown by drawing upon the mythical story of Inanna, the Sumerian mother goddess of Heaven and Earth. It's essentially another version of the Hero's Journey, with a goddess as our guide. The messy middle is a big part of this story. Being in this place is critical to transformation. Eventually we will emerge as a beautiful butterfly. For right now though, 

🦋 The length of time is unpredictable. 

🦋 We are patient.

🦋 We surrender to the process.


Asking for help
For many of us, it's sooo hard to ask for help. Why? For me I think it's the fear of hearing "no" in response. Guess what? People do say "no". The kind-hearted, "Let me know how I can help!" people. Our brains like to turn this into a big deal: why should anyone help you? you're never going to get this worked out, you might as well give up. everyone is too busy to care about your problems. Sound familiar? The flipside is that if you get the courage to keep asking, there are people who say "Yes!" with the most generous, beautiful, compassion. Just last week I had a friend say no and a friend say yes. The yes was a big one - our neighbors used their airline miles to purchase flights for our family (!!). Still, my brain keeps returning to the no. We have to remind ourselves of the good around us, redirect our minds to focus on the positive. 
 

This little nugget popped into my head last week and I've been trying to keep it in the front of my mind:

Let me hold your story for awhile so you can rest. 


Doesn't that feel like fresh air? We can think of "me" as G-d or the Universe or the Divine or a friend, but I don't think it has to be a person. We all need the opportunity to set aside our burdens for a moment to catch our breath and look around. 

ENOUGH (aka boundaries)

I opened the email and scrolled. Here's what you should do. Here's why that's not the right decision. Here's where you should look and who you should talk to. 

When I first started getting these emails from people who do care about me and my family a couple of years ago, I would feel the need to consider and explore all the options presented. I didn't want to overlook something important or fail to consider an option. 

Over the years, I've gotten much more clear about who has a say in the decisions I make for my family. Instead of "Thanks for your input!", I'm turning to "Thanks, but this is a personal decision and we are not looking for outside opinions."

I know some of you reading this today are in the middle of a big decision. If not a decision, perhaps a time of transition or a time of hardship/messiness/distress. Everyone and their mother wants to give you advice about what to do. Does this ring true?

I've made several huge, even life or death decisions for my family, and I'm currently in the middle of another big family decision. I thought I would share what I've learned in the event that you too feel like a sailing ship at the mercy of the waves and weather. 

1. Who's on your team? You know, the decision-making team. It should be people you trust 100% without a single ounce of doubt. All other voices get shut out. Be ruthless. My therapist taught me a visualization where you picture a safe. Open up the safe, put all of those outside opinions in there, close it and LOCK IT.

2. There isn't a right decision. I mean, maybe sometimes there is, but in my experience, there is often not a perfect solution or an obvious right one. You are not allowed to beat yourself up for making the "wrong" decision later. I've been stuck in this trap before and it can lead to dark places that are hard to pull out of. I continue to work on untangling myself from the idea of a right or wrong decision. 

3. Make peace with yourself and let go of the outcome. Even when we do all of the research and have the absolute best of intentions, sometimes it doesn't work out the way we want it to. Sometimes the decisions we make go against the wishes of the person we are making them for. Your job is to look at the absolute biggest picture, the eagle's view, and ask yourself no matter what the outcome is, will I be able to live with this decision?

I hope this brings you a little bit of comfort. I'm over here, in your corner. 

  Photo by    Paul Green    on    Unsplash

Photo by Paul Green on Unsplash

This brave person shared her story with me.

Remember the prompt I sent out a few weeks ago: What is one thing that motherhood has taught you this month? Our friend Michelle wrote on the prompt and sent it to me! You guys - this is what I have been asking of you and one of you actually did it - YAY!! Please use Michelle as an example and try it. You don't have to send it to me, but if it's as awesome as I think it will be, I would love to share it. I really hope to add other voices to this newsletter on more of a regular basis. 


Questions by Michelle Small

The other night I saw something that just didn't seem right.  I ask, "What happened today?"  Silence follows.  I ask, "Did this happen at recess?  Who were you with?" She stares at me with her lips as straight as a line and her eyes completely glossed over.  I tell her I love her and I am only trying to help and she holds her hands up to her ears and walks away.  Exhausted, I want to just yell after her “Fine! Forget it!!”  I look down and there is my five year old, laying on the ground incredibly lethargic - an instant sign sickness is coming since he rarely ever is still for more than 20 seconds. 
 
I give my daughter some space for a moment while I try to get my son to get up and put on his pajamas, knowing tomorrow I will likely be taking him to the doctor’s office.  He refuses so I ask him “What hurts?”  “How do you feel?”  “Are you hungry?”  He stretches his arms out and whines, “Momma.  I want momma.”  I give him a hug and then he lays back down.  I let him lay there while I go search for the thermometer and check on my daughter. She is in tears and yells, “Don’t ask me anymore questions!!!  It is too hard to talk about it!!!”  

Reflection on my quest to help them both, I am realizing that asking a bunch of questions - a strategy that always helps me and also my students with their comprehension - is not always helpful.  In motherhood, I am learning, sometimes silence can produce the answers.  Sitting quietly with my son after taking his temperature (he didn’t have one at the time), I was able to check in with my gut feeling to know he needed to go to the doctor (he wound up having a high fever the next morning and an inflamed throat that needed medicine).  Since the blow up with my daughter, I have stopped the constant peppering of questions and wait for her to cue me she is ready to talk.  Amazingly, last night, she asked if she could read to me a part from a book she was reading.  This book is one I actually recommended to her and, for the first time EVER, she took me up on the recommendation, AND now she wants to show me a part she likes and connects with.  I feel like I finally have a win.  

I learn and grow by questioning, but I am learning that isn’t how my kids necessarily learn or grow.  It also does not seem to be a method to helps them to open up to me about what is going on in their lives.  For my kids, the more questions I ask, the more unwilling to share they become.  My daughter gets tense and stressed and my son just flat out ignores me and/or dances around (sometimes with underwear on his head) repeating my question or words in a sing song voice and refusing to answer them (He is feeling better today!).  

It is SO hard for me, but I am learning to look for those opportunities to sit in silence or just side by side, waiting for them to be ready to share.  I won't stop asking questions, but I will start pausing more before I do.  It will help me decide if the questions I am bombarding them with will produce the answers I am hoping for.   

A Frowning Smile

I've had a rough week full of disconnection with my nine year old daughter. Today I noticed she was getting dressed without prodding, brushing her hair and doing what she needed to do to get out the door on time for school. I was so proud of her and she seemed so beautiful and precious to me in that moment. I made eye contact with her and smiled. Not a huge wide-toothed smile, but I felt my facial muscles move into the place they go when I smile.

She stopped in her tracks when she saw me staring at her and said, "What?" Let's just say I sensed some venom in her voice.

I just love you and I'm proud of you.

Then why are you giving me that look?

I'm smiling at you babe.

That's a frown trying to be a smile.

Here I was showing up with the absolute best of intentions trying to connect and she still didn't see it this way. How bad must it feel when I'm reacting out of a place of anger or irritation? It was a reminder of perception and how much our kids feed off of our energy. We have to literally ask them the question to make sure we are on the same page.

This applies to all relationships in our life. With our partner, at work, with our friends. Unless we have the courage to check in, "You seem a bit off today, did I say something that upset you?" we could be two ships sailing on different rivers, in opposite directions.

I wrote today's post in response to a podcast interview question from the amazing Maria Alcoke of The Engine Mom podcast. Use this question that Maria asks all her guests as your writing prompt for this week:

What is one thing that motherhood has taught you this month?

For those of you without kids, simply substitute partnership or yoga or nature or life for "motherhood". I’d love to read your response - email it to me!

The Messy of "And"

I think and write a lot about living in the “and” of life. That’s the place where seemingly conflicting or contradictory feelings arise and the idea is to allow them both. Just because a feeling feels icky or maybe not what you “should” be feeling, you still allow it to be there and co-exist with your other feelings. I think we often stuff our feelings so quickly that we might not even notice them. We were told as kids, “It’s not scary” or “Stop crying, there’s nothing to be upset about” or “Everything is fine” and we ingest this for life.

My version of embracing “and” is about acknowledging and allowing the feeling. I think this is one of the paths to personal growth. I need some teachers along the way because this stuff is hard. I love to listen to Megan Hale’s version of this on her Wild & Holy podcast. Episode 12: The Underbelly of Expansion was all about how parts of us contract in the middle of expansion.

You know I always use myself as the guinea pig when I’m trying to figure something out, so I am going to use a recent anecdote to illustrate.

Back to School Night happened recently. The day of, I worked at my genetic counseling job, ran to the parking garage at 3:30pm, had my usual two hour long commute home, picked the kids up at their after care, brought my daughter over to gymnastics and then found myself in my kitchen with my husband and son. It was time to go to school for the event, but all I wanted was to sit down with them and rest. Going to school events can be challenging for me. No matter. I left with 10 minutes before the start of the session I was attending, plenty of time given the school is one mile away. Except I forgot about parking at school events. You would think we lived in Times Square. I parked about five blocks away, got out in my heels and started running. My good girl reflex kicked in and I didn’t want to make a bad impression on the teacher that might reflect poorly on my kid.

By the time I got the classroom I was dripping sweat and panting. Great first introduction. The teacher was lovely and calm, which eased my stress and I was feeling good by the time I pulled into the driveway back at home 90 minutes later.

Then my phone rang. I looked at it and saw the name of one of my mom’s caregivers. My stomach dropped, quick and hard. A very big part of my wanted to throw the phone into my bag and stride into the house to start the bedtime routine with my family, ignoring the call. Having been on the receiving end of these phone calls for the eight years since my mom’s diagnosis of a rare dementia, I have a strong hit of intuition when something is wrong. I just knew that answering the phone would lead to more action that evening. I didn’t want more action.

Let me pull apart here some of what I was feeling right in this moment:

Utterly exhausted from this marathon day and stimulated from a big shot of adrenaline knowing something has occurred with my mom.

Shameful that I wanted to ignore the call and proud that I can handle these moments of extreme stress.

Gratitude for having helpers that lovingly take care of my mom and resentment towards this disease that has taken over our lives.

I could go on. I think it’s so helpful to acknowledge and, as I’ve done here, write these feelings down. I don’t feel any shame now about these feelings. Processing them in this way is so helpful to me.

I did pick up the phone. There was an emergency. We dealt with it. Until the next phone call.

Your turn: Describe a scene where you had conflicting feelings. Then write out the actual feelings.

Dementia Made Me My Mom’s Mom, And It’s Devastating. Here’s Why It’s Also A Gift.

The Dark Night of the Soul and You

Sometimes the road we are traveling down becomes bumpy. The path narrows, the sunshine gets pushed out by the brush surrounding us. We trip over rocks that pop up out of nowhere. We can find our way through, but it feels like real effort. Every step takes thought and consideration and your mind feels full to the brim and overflowing. Am I going the right way? Did I remember to pack water? Did I pay the electric bill and find a sitter for the kids' day off and call the doctor's office again because they never called me back? 

Sometimes this is a stage of life we are passing through. It's a tough climb but we know that after we get through this tricky portion of the path we will see the sun poking through the trees in the distance.

Other times, though, we find the brush getting thicker. The rocks are becoming boulders that we need to scramble over to get by. A mile takes hours. The trail markers have disappeared and we are out in the wilderness alone. We are hungry. Hungry for sustenance and light and ease. 

We think to ourselves: One more night alone in this tent on the edge of the cliff and surely, the path will clear tomorrow. 

But it doesn't.


This is the Dark Night of the Soul from Joseph Campbell's Hero's Journey. I love teaching the Hero's Journey because it feels so relatable. If you reflect on your own life, have there been times of the Dark Night of the Soul? 

The thing about the Dark Night of the Soul is that what comes after it can be life-changing. Curious about that part of the journey? Sign up for my Hero's Journey workshop where we will be talking all about it.

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.