My son Jacob was born on January 31, 2006. He was the most perfect baby boy I had ever laid my eyes on. He seemed healthy with his ten fingers and ten toes. He was alert as a baby and didn’t sleep very much. He cried more than his sister did and seemed to always be hungry. Little did I know that all his food ended up in his lungs.
At two months, I remember standing in the garage of a shopping mall and not being able to put my child back in his car seat. His cry filled the busy garage. I tried to keep a smile on my face, but in my heart, I knew something was terribly wrong. Later that evening, we ended up in the emergency room with Jacob. I am happy I didn’t know that night how many times we would be visiting the emergency room throughout Jacob’s life.
After a few days at home, we realized we could not keep it up any longer. Jacob refused to eat. He was hospitalized for the first time when he was three months old. I remember being scared, but also being in grave denial. A million tests were ordered, but nothing was found. Three weeks in the hospital and a transfer to Children’s Hospital gave us no answers.
A month later, we were once again in the hospital for more medical tests. We felt a little slice of hope for the first time in Jacob’s life. Would we find out what was going on with our boy? Two surgeries and a brain MRI later, we knew our son could not eat via mouth. He left the hospital with a gastrointestinal tube for all his food. Jacob’s MRI also showed brain abnormalities. I was devasted. Something hit me deep in my soul when I realized we were not dealing with toes or fingers but brain issues. I envisioned a life of struggles for our Jacob. I cried and cried and cried a bit more. The news of his brain showing abnormalities [CB1] also came with a shade of shame, and a lot of fear. I remember finding it hard to not be able to tell friends and family a happy ending. Instead, medical issues became the norm of our conversations.
In the middle of preparing ourselves for having a child who would be developmentally delayed, we saw Jacob’s happiness for the first time. With Jacob finally getting sufficient calories each day, we got to know our son. He fought for anything he wanted to do. He had no fears and loved rolling around a room full of people. Jacob lived.
At age one, Jacob’s seizures started. I didn’t know at the time that Jacob would struggle with epilepsy his whole life. I would get to know all of the seizure medications on the market, and none would fully treat his epilepsy.
The first couple of years of Jacob’s life are a blur. I remember juggling a management position with taking care of my son full-time and having a toddler girl. I often had to catch up on work into the morning hours. We had no family around and didn’t know how to ask for help. The heaviness of not knowing what the future would bring for Jacob would ache in my heart. We lived in crisis mode[CB2] . From a place of exhaustion, something grew inside of me. I found a new purpose in life. It fueled me to go on. I woke up every day to care for my child who could not get through his day without me. My son needed me to live.
Jacob’s first three years of life were full of doctors’ appointments, adjustments, and a diagnosis of mitochondrial disease. I learned how to wake up in the middle of the night and have a child shake next to me in bed from a seizure. I learned how to grab for the nearest clothes at the same time I talked to the ambulance dispatcher. I learned that mitochondrial disease never takes a break. It doesn’t matter if you have a holiday or work commitment. Seizures come when they want and [CB3] break a family into pieces. Our boy lived against all odds.
When Jacob was three years old, we got to see the true ugly face of mitochondrial disease. Jacob had a mitochondrial crash. We were told for the first time to call our families to say their goodbyes. We had no idea how to prepare ourselves for the news. I remember crying hysterically in the bathroom of the intensive care unit where no one could see my tears. I remember praying to God to please let us keep our boy. I felt in every bone in my body that I would be lost without my son. I could no longer envision life without Jacob. We had found a new normal with him in it. There was no going back.
The care increased, but Jacob survived. At the time, I was told Jacob would never see his fourth birthday. A seizure or cold would kill him. I learned how to live with uncertainty, something I am still practicing today. In the face of uncertainty and losing my child, I had to shift my thinking. I had to break up each day into moments. I focused on what I had, and what I could impact. Playtime with both kids on the floor was in my control, a seizure was not. A cooked meal was in my control, but a fever was not. A glass of wine with my husband was in my control, a couple’s weekend getaway was not. Life is easier to manage when you focus on what is in your control. I still remind myself of that every day.
Jacob turned four against all odds, and that winter we mainly kept him at home. He had a wonderful nurse who came to our house every day to help us care for him. We learned together how to manage Jacob’s complex care, and slowly, he gained back his strength. You read stories about humans overcoming the impossible. That is what Jacob did that winter. I will never forget the first time we took him outside. He was still weak, but the smile on his face is engrained in my memory. I remember feeling hope for the first time in months and reflecting that I probably had suffered from depression as Jacob was fighting to come back to his life.
After Jacob survived that winter, doctors stopped telling us how long he would live. He was living against all odds, and his medical team realized Jacob was in charge. We shifted as a family. We decided to make Jacob’s life the best one possible. We smiled with our boy and cheered him on. Every little step forward was a success, every setback we powered through. We found a meaningful life where every day’s purpose was to give Jacob another day. That purpose got me through endless sleepless nights, ambulance rides, and intense hospital stays with lack of answers.
People asked us how we could do it. How could we care for Jacob and never know if we would end the day in the hospital? What few people realized is I knew I was living the best part of my life. No day was too hard when I got to do it with both my children. I let my mind slip to the other side once in awhile and thought about how life would look without him. It was a black hole. I had no idea how anything would give as much meaning as being Jacob’s mom.
At the same time, we [CB4] prepared Jacob for a life outside of his medical diagnosis. Jacob went to preschool, made friends, and swam in a heated therapy pool every Monday morning. He made strides in therapy and I will never forget our boy walking around our whole downstairs in his walker. He was strong willed and determined. We felt joy for the smallest step forward in the middle of Jacob never being far from another hospital stay at Children’s.
Jacob went on from preschool to kindergarten to elementary school. He made friends wherever he went. His courage and strength surprised everyone surrounding him. I was his lucky mom who got to see him fight and battle this disease despite no one thinking he would turn four years old.
As Jacob got older, it was harder to care for his daily needs and diagnoses were added to his mitochondrial disease. I realize today that I was in the best shape of my life because I carried Jacob up and down our stairs, in and out of his chairs, and in and out of the house. I can today still feel the tiredness in my whole body as the evening came around and Jacob was in bed. I sometimes felt I was in an old person’s body. Every sprint and lift were so worth it. It was important to our whole family that Jacob was part of it. This meant that we had to be his legs every hour of the day.
A big breakthrough for Jacob was when he could start using a computer to talk. It was like getting to know Jacob all over again. He was a feisty boy who liked to boss us all around. He always tricked his teachers into playing a game or playing his favorite song instead of working on another science project.
Jacob’s last year of life got a little tougher. The medical issues started to pile up, and it was not as easy to treat each symptom. His medical team was divided. Some felt we needed to prepare for end of life, some felt they could not predict Jacob’s future. We continued to live in the moment with Jacob and supported him as much as we could.
In the spring of 2016, Jacob’s health issues continued to escalate. It felt like we were slipping behind, one step at a time. It got harder and harder to manage his care at home. The elephant in the room was back. Would Jacob continue to live? As always, Jacob did it on his own terms. He came home one last time for six precious days.
Jacob slept most of his last five days of life back in the PICU. He woke up for short periods of time. We lay with him in bed, read stories, and enjoyed every little moment we had. On June 18, 2016, Jacob started having trouble breathing. He needed to be intubated in order to continue to breathe. We knew we had neared the end of Jacob’s life. There were not enough tears for such an incredible loss. I knew in my heart that Jacob had lived a happy full life beyond his life expectancy. I also knew Jacob’s body was tired. He could not fight the good fight any longer. He decided when his time had come. He passed away on Father’s Day June 19, 2016. My love and grief for Jacob will always be there. My gratitude for everything he taught me is endless.
My son Jacob changed my life. My old motto in life was “work hard and good things will come”. I was always looking for the next thing to happen; a work promotion, a milestone for our daughter Sarah, a next vacation. I didn’t fully live in the moment. I was always planning for the next chapter in life. Some days, I simply woke up and would be in a bad mood. I never knew why. I just thought everyone had bad days here and there. I was ignorant of a lot of things in life.
How lucky am I that Jacob changed my outlook on life? I didn’t know what mitochondrial disease was before Jacob was born. I didn’t know how to live in the moment, and how important it is to have a tribe of friends and family standing beside you at the darkest of moments. I didn’t know what it meant to truly enjoy the simplest moments such as giving your child a bath or putting your child to bed. I learned how to live with uncertainty and minimize regrets in life. I was not always good at it, but it was part of my daily life.
The hardest lesson of all was to learn to live without Jacob after he passed. Living life with Jacob was not always easy, but it had meaning. I woke up each morning and knew exactly what my purpose in life was. I knew that every day I had to care for my son so he could live. It was a good fight of advocacy and compassion. To be Jacob’s mom was rewarding and put life in perspective.
I now live the nightmare of most parents. I lost my child to his disease. I am grieving and mourning my son. I have lived without him for five years. I need to find time to sit in my grief or I am not doing well. I am still learning how to keep Jacob’s memory alive and to live life without him. I am still finding my path in life, but it’s not chasing the next chapter. It’s living in the moment and staying true to myself and the people I love.
We live in a society who doesn’t know how to deal with grief and difficult conversations. I have lost friends because they simply did not know how to have that difficult conversation. Silence after a tremendous loss is going to fail any friendship. I have been hurt by simplified statements around losing my child. I have been told I am not sad enough or I am not grieving the right way. People expect my grief to fade over time. They put a label on me that “I am strong” or even “the strongest person they met”, not realizing I have had no choice. Strong doesn’t mean I don’t hurt or don’t grieve. Death and grief are enormous, difficult topics, and this is my story. I processed my deepest grief by writing. I wrote when I didn’t know what else to do. I wrote letters to Jacob the first year after he passed to make sense of what didn’t make sense. I wrote to explain what I felt and how I processed my feelings. I wrote to survive.
Five years later, I am ready to turn those letters into a book. They are letters of raw feelings, love and heartbreak. I am writing to keep Jacob’s memory alive, but to also help others know what it means to outlive your child. When I was told to prepare to lose my three-year-old child, I desperately went to the hospital library and literally borrowed every book on the topic of grief. I read about the grief process and divorce statistics. I found few stories from parents on how they continued living. I hope my words will help someone to live better with grief or someone to embrace loss with a loved one. We can’t escape loss and grief, but we can find ways to make it a little easier.Love, Maria