At Least I'm Not Her - Part One

It was a fairly typical morning during Ethan’s year-long hospital stay. By mid-morning, post breakfast, his breathing became more difficult. So I helped him put on his bi-pap mask and he settled down for a nap. I watched the monitor to make sure all his numbers were in the safe range and he was comfortable. His breathing eased and the hum of the bi-pap machine filled the room. I checked in with his nurse and then headed to the lobby for some food and coffee.

Me the tired mom getting some love from Ethan.

Me the tired mom getting some love from Ethan.

On this particular day as I sat in the lobby, I noticed a woman walking with her son in a wheelchair. If you have ever sat in the lobby of a major children’s hospital you know that at all hours the place is buzzing with people. You see everything, kids running, kids in wheelchairs, kids with oxygen and tracheostomies. You see able-bodied kids and kids that are not. You see kids with diseases you can “see” and those with some you cannot.

She pushed her son who had blondish hair. He was about seven or nine years old. It was clear he probably didn’t walk and likely had some cognitive impairment. She had all kinds of bags strapped to her and his chair. She looked rushed and tired. At this point in time, Ethan had been in the hospital for nine months and I was tired down to my bones. So, I knew a tired mom when I saw her.

As she raced by me for the main elevators, I thought to myself.

“At least Ethan walks and talks. At least he can tell me he loves me and I can enjoy his personality. At least we travel easily with him (by this time he’d been lots of places on an airplane). At least if we can get his heart healthier, he will developmentally be pretty typical.

At least.

At least.

At least.”

The reality was that Ethan was very sick. His heart was not healing the way his team had hoped and I was feeling desperate. I had just given birth to Chase, we’d been living away from home for months, and every day I was watching my son suffer. I couldn’t see a light at the end of this long, dark tunnel. I was scared.

I didn’t know the first thing about the woman I judged that day. I didn’t know anything about that boy. I hadn’t the first clue about her story, her life, her dreams, her disappointments, her support system, her sacrifice, her talents. But I was certain I didn’t want her life.

Now I don’t think my thoughts are particularly unusual. When life is frayed all around us, we grasp for something to hold on to. We tell ourselves stories about who we are and who others are around us. Survival mode does all kinds of things to our hearts and minds.

Fast forward 6 months Ethan would die after 13 months in the hospital. And two years later I would give birth to Bodey who arrived on earth with a rare muscular dystrophy. And in a split second, I became that woman. The one pushing the wheelchair. The one navigating daily life in a world that doesn’t accommodate people on wheels. A world where people look and may think to themselves “at least I’m not her”. Or maybe they are just curious, but they don’t have the courage to just ask. I also became a woman who knows the incredible bond you can have with a child who does not speak.

I don’t know why I recalled this rather simple, ordinary morning so many years later. On some level, I believe I knew I’d be Bodey’s mom. I believe that who we are and what we are capable of has already been pre-wired within us. Life’s events, whatever they are, reveal these parts of ourselves. We always have the free will, the choice of how to respond. But the ingredients are there, waiting to be revealed.

How many times have you looked at another woman and made the “at least” list?

At least I’m not single.

At least I’m not in her position in life.

At least I’m not sick like her.

At least my kid isn’t sick like her’s. I have no idea how she does it.

At least I live here and not there.

At least my husband isn’t like that.

At least I don’t struggle with ______.

At least….at least…

We all do this at one time or another. I think it is simply human nature. When life is hard (as it is) we grasp for straws. We want to feel like we have a handle on things. Even when it’s not hard, we all want to tell ourselves a story about what our life is like. We often do that in comparison to others.

That morning in the hospital I was exhausted and Ethan was so very sick. I was trying to tell myself a story about my life that made it bearable on that day. Our minds reach for “at least” when life feels out of control and not the way we hoped it to be. Similarly, stories that we don’t understand or that scare us often create distance between us and others.

Women gathering at our last Restoring a Mother’s Heart Retreat.

Women gathering at our last Restoring a Mother’s Heart Retreat.

Gratitude is, of course, thankfulness. But it can also be judgment masked as gratitude. We are always invited to crawl inside the stories of others. No, we cannot absorb the pain of this world. If we did, we wouldn’t leave our beds. But we can see with more compassionate eyes. We can seek to know more about our neighbors and those we cross paths with each day. We can be honest about our own sadness and disappointment in life. We can make a call, bring flowers, send a note or just a direct message. We can choose to “see” each other in a new way.

When we feel the urge to look at someone else and say “at least”, we are invited, instead to look inside ourselves. To piece through the parts that hurt, that don’t we don’t understand, or want to see. In those spaces, we have the opportunity to sift, learn, and grow into a more beautiful version of ourselves.

I find it interesting that we are able to hold the collective pains of the world so much easier than the individual ones. We band together to help with fires and famines and shootings. We donate money, share the cause on social media and talk about it with friends. But it’s just that, it’s collective, it’s at a distance. Individual ones are harder because we have to face what these pains manifest. We have to see what these “at leasts” look like with skin on.

This holiday season I invite you to do two things:

Number One :

Crawl inside someone’s story. Consider that she is so much like you. She probably wants so many of the same things you do. Think to yourself, “This is her calling. In this space is her invitation. It seems hard, but within her is already the person needed to answer this call. What can I do to support her? Can I listen? Can I encourage? Can I just drop off a note or a coffee and tell her that I see her?

If you don’t know her, you can just send her love, you can open the space of your heart that connects all of us and whisper a prayer for her, send her some of your strength.

Number Two:

Examine the areas in your own heart where you often look at others and say, “at least”. Journal about the spaces within you that need love, healing, and understanding. Work through them in writing or reading or even sharing with a friend.

May this Holiday Season be one of reflection and fulfillment as we seek to become more whole women who love others well.

Sunday Love to you.

Dear Heart Community

Dear Heart Community,

We are long time, dear friends. You took me in and made me one of your own when I was 29, pregnant with my first child, and scared out of my mind. I thought I’d have healthy children, I never considered I wouldn’t. The moment I learned my son would have HLHS, you came along side of me and let me know I was not alone. When my dreams of bringing my son home from the hospital days after his birth and thinking his biggest “owies” would be his vaccines were dashed, you were there. You shared your stories, your children inspired me and gave me hope for my son Ethan.

When I grasped that my experience of motherhood would not be typical, you reminded me yours was not either. You made me part of something bigger than just my story. I grew up with you. I became a mother amongst you. I learned from you. I leaned on you.

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Eight things you can do this Christmas Week to honor your child and care for yourself.

This is a hard time of year for those of us who live with the death of our children. We often fumble for ways to be present in this Holiday Season. We know a seat will be empty at Christmas dinner and that there is a spot under the tree where some other presents would be. At the same time wedesire to feel joy and to engage in the magic of the season with our other children and with our family. The dance between joy and pain, fullness and continues. And is magnified this time of year. 

Today I'm sharing 8 things you can do THIS WEEK to honor your child and to take care of yourself. 

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Happy Birthday Ethan.

Your arrival into my life, into our family was and is the most transformational gift. You gave us many gifts, but the greatest one is you taught us to love deeper and wider and bigger than we ever would have. Because of you Ethan, our lives are expansive. We’ve met the most incredible people, the most dedicated nurses and doctors, the most beautiful children. The intricacies of our experiences I could have never imagined. You taught me to swing open my chest and just love. You taught me to accept what comes. To take it in and to own it. You showed me it’s worthy to expend myself, to sacrifice, to give my all to someone. You knocked on the door of my heart and I let you in. I jumped in and gave you my whole heart. You and I are soul mates. From the very beginning we had a connection, a bond that felt centuries old. You showed me a love deeper than the deepest oceans, a love that survives death, a love that extends to eternity. A love that never, never, never ends.

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Choose Brave.

But instead of crying in my car after loading up my Target purchases, I sat there and took a deep breath. I smiled at my kids then headed for Starbucks to treat myself for begin a brave mama. Sometimes just the little, normal things require us to be brave. I’m so thankful that my Ethan taught me how to be brave. This time around I’m challenging myself to see more gifts, and less limitations. I’m leaning into my role as a teacher. Instead of feeling defeated, I’m reminding myself of all the incredible ways Ethan touched our family and our community. Bodey will be no different. He will shine. He will teach and I will help him be the best Bodey he can be, just like I helped Ethan. I’m reminding myself to hold my head high, and to be proud of the life I have, instead of the life I planned for. Not easy, but worth the challenge. I’ve come to know that I’m here to learn, grow and teach. Some days I’m brave, some days I am not. And both are okay.

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Giving from the place of our pain.

Ethan’s life and death have taught me to really listen to myself, my intuition, God, my soul. To really listen. As these thoughts of fear and failure raced through my mind, one of my greatest realizations of the last three years screamed to me. “IT’S NOT ABOUT ME.” My life is really not about me. My life is about loving others, making a difference, and impacting change. My life is not a container with 4 sides, but rather it’s a fluid river that’s ebbing and flowing and desiring forward motion. My spirit years for connection to you, to others. It yearns for meaning, purpose. It yearns for love.

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The Mom After Me.

You are the mom before someone. The dad before someone. The friend, the student, the scientist, the doctor, the teacher, the business person, the author, the someone before someone. Someone will come after you. They will stand on your shoulders. You can make a difference for them. You can stand tall and help make their story better. Even if you cannot make yours better. You get a choice. You always get a choice. I have come to a place in my life where I believe there are no coincidences. Ethan in the hospital for 13 coincidence. Our coincidence. Your coincidence. You hate the outcome of your story? I get it. I do. But you get the choice. Make a change, make a difference. It doesn't have to be in a loud, sweeping way. It can be quiet and's still making a difference. Love the people who tried their best, even if they came up short. Love them into doing something different next time. In the process of all of yourself. You are a beautiful creation. You are created to make a difference. 

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Choosing Love.

Choosing love is not easy. I would not have been able to choose it fully had Ethan not been my son. I loved him so much that it became my only choice, my only option. In choosing Ethan I have been broken and transformed. When I connect with another mom whose child is sick or a mom whose child has died, when I see a friend in a tough spot, I whisper “thank you Ethan”. It’s because of him that I can see these people and love them and feel so deeply with them. 

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Walk by Faith.

I have come to know deep in my soul that it all belongs. Life, death, joy, sadness, accomplishment and failure. It all belongs. It all shapes us. I also believe that it's not random. And that there is purpose in all of it. There was GREAT purpose in Ethan's life and there is purpose in his death. You see we are souls that never die. And so my love for Ethan never dies. His love for me never dies. If I could strong arm God or the Universe to hand me back Ethan I would. If I could negotiate my way into having him back I would. But I cannot. And so in this broken place that I have crawled through these last 3 years and I have discovered that I am held. That I am loved and though it does not make sense, it belongs. 

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Seeing each other.

Spring has turned to summer and I find my body physically aches. I’m often not consciously thinking about being sad or about the fact that another school year has finished without Ethan and that another summer is upon us and we will make memories without him. I’m reminded that grief is physical and at times all encompassing and that it demands my time and my attention. I’m reminded that more time is passing and that healing is a process. That I'm still a student and that I have more work to do. 

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For quite sometime I've wanted to continue writing. I had a hard time giving up writing on Caringbridge, but sensed it was time for something new. So here I am writing again, but in a new home. To be totally honest, I'm not sure what this blog will become. But I know I have a lot to say...a lot to here is where that will happen. Over the past three years I have not shared in writing physically as much as I've written in my head. The last three years of learning to live with the death of Ethan have been...well I'm not sure what word I'd pick. They've been hard and they've been fascinating. 

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