This post is part of The On Coming Alive Project that was launched yesterday. Please take a moment to read about this beautiful project. There is hope and we are all here to share it with you. It's a huge honor to join 71 other beautiful souls as we share how beauty has emerged from ashes in our lives.
The oldest of five children, mothering is in my blood. Caring for, calming, arranging, protecting, nurturing all come very naturally to me. I’m hardwired to mother. I’m also an idealist. I imagined myself as a mother for as long as I could remember. I had an idillic picture in my mind of what motherhood would look like for me. I practiced on my dolls and my little sisters and brothers. I distinctly remember carrying around my youngest brother Joseph with such ease and natural ability. I knew I was created to be a mom. With that natural instinct comes all the dreams of what your children will be like. Will they be boys or girls? How many will you have? What will they be when they grow up? Where will we live? I grew up on a street with a best friend. I never imagined living away from her. We write our story in our minds. It’s not just fantasy, it comes from deep with in us, from our soul.
Fast forward to 2005 when I gave birth to my firstborn, Ethan Markus. I learned during my pregnancy that Ethan had a very severe heart defect. I even agreed to a very innovative in utero intervention to open one of his heart valves in hopes of salvaging the left side of his heart. I spent the second half of my pregnancy on bed rest, living away from my family and close friends, and preparing for a baby I did not know if I’d bring home.
After Ethan came Blake, then Chase, then Bodey. My four boys. Never imagined I’d have all boys, but as I’ve learned life unfolds in a way that teaches and stretches us. Holding each of my boys as newborns, swaddled tight in their soft blankets, rocking them forward and back, forward and back, I made plans for them. I hoped for them. I envisioned our life with them. I prayed safety and a future over them. Each time, with each of them it felt different because each of them is a different soul with a different purpose. So mothering each one is a unique job. But mothering them was my mission, my life’s call and so I listened hard to my heart about what that would look like.
Ethan had 4 open heart surgeries by the time he was two. His surgeries were done in Boston, 1,000 miles from our home. For the first two years I lived back and forth between home and Boston. I became part of the heart community of moms with children with heart defects. I watched children die. I cried, I wondered how this could possibly be my life. I watch Ethan endure more than any child ever should. He developed into a smiling, happy boy. He had a unique way of spreading joy to everyone who met him. He captivated his nurses and doctors. I would often think “who is this child and how did I get him?”. He was extraordinary. I learned to mother a baby covered in wires that I often couldn’t hold. I learned to mother a baby who was fed through a g-tube instead of a bottle. I learned to mother a baby who may not have a future. Though I always believed Ethan would be the exception, I watched children die around me and wondered if that would ever be me.
Blake came along when Ethan was 3 1/2. Their bond was instantaneous. Blake was a bad sleeper, but a lovely cuddly baby. He was smart and quick from the moment we met. He began studying his hands and toys at a very early age. His fine motor skills were fascinating to watch. Blake and Ethan would sit on the couch to watch a show and they’d hold hands. We’d ride in the car and I’d look back and see them holding hands across the backseat, each in their own carseat with a hand extended to the other. I was amazed at the gift of a healthy child. Development just flowed with Blake with little effort.
I learned to mother a sick child and a healthy child together. I wondered if they would grow old together. I wondered if Blake would be left without Ethan. Blake watched Ethan go through therapy to improve his gross and fine motor skills, to learn to eat by mouth. Blake tagged along to many doctor appointments and ate lots of hospital food. Blake lived between home and the hospital from 18 months old till 3 1/2. I struggled to mother my boys in two different places, hospital and home. I felt inadequate. I felt like I was failing Blake. I was Ethan’s advocate and the keen keeper of all his medical information. I constantly felt torn and worried I was not giving adequately to either. I faulted on the side of Ethan. Blake often got seconds. I felt guilty, like I was failing as a mother.
Ethan went back into the hospital at age 6. Blake was 2 1/2. I was 10 weeks pregnant with our third son, Chase. We moved our family to Boston for what we planned to be one month. We ending up living away from home for over a year. Ethan spent the last 13 months of his life in a Cardiac Intensive Care Unit. My boys never slept under the same roof. I was either with Blake missing Ethan or with Ethan missing Blake. Blake walked each day through the CICU. He saw things no human should see. He became quieter and a more picky eater. Life was turned on its head. Ethan went through 4 open heart surgeries that year and countless other procedures. He lived that year in the perfect storm of hope, innovation, unknown data and an engrossed treatment philosophy. Ethan died on June 12, 2012. My 7 year old left for heaven. I had parented him the last year of his life in a hospital bed. My dreams, my hopes were gone. I intimately cared for every detail of his body and for each body system. I knew each one better than any doctor. I was the Ethan expert. We fought each battle hand in hand. Like war comrades, no one was closer.
During the year in Boston, Chase was born. Ethan talked about Chase every day. He could not wait for his arrival. Chase was born at the woman’s hospital just over the bridge from the children’s hospital where Ethan lived. The day Chase was born Ethan, his doctors, nurses and medical equipment came across the bridge to meet Chase. The newspaper was there. We told them we were just thankful to be together. Chase didn’t come home to a cute room made just for him. He came home to our two-bedroom apartment. Our nanny lived with us and so Chase shared a room with Blake, my husband and I. His tiny co-sleeper right next to my bed. There was no preparation for his arrival other than washing the sheets and clothes. His dresser was a plastic bin. He spent the next 6 months of his life visiting a CICU each day. He snuggled with Ethan in his hospital bed. He drank pre made formula. I rocked him in a hospital chair. It was nothing I imagined. There were no newborn pictures or matching outfits for my three boys. I have only one picture of them all together.
I recall the day we spent as a family in Ethan’s room. Ethan was on ECMO, Blake and Chase in my lap. My husband Erik next to me. I wondered if our family would ever be home as a family of five. It wasn’t looking good. This was certainly not the motherhood I pictured in my head. I hugged my boys, and kissed Ethan.
We left Boston without Ethan and I now had to mother two little boys who desperately needed me. I need to mother Ethan who had left his body suit here and flew to heaven. I struggled to do the basics each day. I’d go into the bathroom and sob. I’d go into the laundry room and sob. I cried when I drove my car. I could barely get through each day. I felt guilt again as I was inadequately mothering my boys. I was barely caring for their basic needs, forget the extras.
Three and a half years later, we now have Bodey. Bodey is now stretching and shaping us. He is a happy, contented, easy little boy. He’s also been diagnosed with a form of congenital muscular dystrophy. So I open a new chapter of learning to parent Bodey. Though not acutely ill like Ethan, he will have physical challenges. Ethan taught me that I can do this, I can learn to parent my Bodey in just the way he needs. I can adapt to and learn from what life will teach our family though Bodey.
Blake, Chase, and Bodey live in our home with us. Ethan lives here too, just not in his physical body. We are all a family. I mother each of my boys in a different way. Each of them are different souls, with different needs and paths. I no longer pray for healing, as I used to beg for Ethan. I pray for each of them to be their best selves. I pray for them to be loving and kind to others. I pray for them to use their gifts and talents to disrupt the pain of this world, to make it better and more loving. I pray for their courage. I pray for them to discover the purpose of their souls, their life.
While I physically mother three of my boys, I also need to mother Ethan. I am now at the place where I can answer people that I have 4 boys. Even if that means they will ask their ages and schools. Even if that means I have to say that Ethan died. To me, that’s mothering Ethan. Giving him his place in our family. At Christmas we have an Ethan tree. We decorate it with Ethan ornaments. That’s mothering Ethan. I talk about Ethan, tell stories about Ethan. My boys count him as their big brother. When they play a game they will even say, “Ethan is on our team”.
My experience of living in a hospital with my children was, well extreme. Ethan’s path and care provide many opportunities to learn and change how we care for children and families facing complex disease. I founded Ethan M. Lindberg Foundation to serve families in the congenital heart community. In this I parent Ethan. When I advocate for and care for other families like mine, I parent Ethan. I need to mother Ethan, just like I need to mother Blake, Chase and Bodey. Each of my 4 boys are unique gifts. Each comes with their purpose, their plan for this life. As a mother, I’ve learned that my assignment is to help each of my boys live out their purpose, their’ life’s plan. If I mother nothing else in the way I planned to, I must mother them in this. I must walk with them through the good and bad of all that is to come in their life. I hold their hands, tell them it’s okay (even when it’s not). I fight for them, advocate for them. Love them. Just as they are.
In mothering my 4 boys, I come alive and live into the purpose of my life. They are my teachers. I’ve learned to open my hands and surrender to what is. Not to what I wanted or hoped for. I can say without a doubt that I am in awe at the wonder of life.
Mothering is not just the cute outfits and dreams of dancing at weddings. It’s looking deep into each child’s soul and feeling, finding, uncovering their individual purpose. It’s urging that purpose to blossom and take shape. Even if that shape is ugly and painful. It’s taking that story, that’s sometimes horrid and making it beautiful. As mothers, we have the primal need to mother all of our children. Whether they are healthy or sick, typical or special, live physically in our home or in spirit. I am the mother of 4 boys, Ethan, Blake, Chase and Bodey. I pray I have the strength to keep mothering each one just as they need, and just as I’m called to.