This is not a political post. This is not a post to take sides. This is not a post about right or wrong.
This is a post about compassion and heart for the hardest decision a caregiver has to make. This is a post about knowing what a mom's eternal love for their child feels like. This post is about making decisions for a loved one that will hurt so very bad for you. Decisions that can't be reversed or regretted. This post is for the utmost respect for parents who have had to say farewell to their child, and wake up every day with a void where their child should be laughing, screaming, and living.
None of us know the conversations or decision that took place in Charlie Gard's hospital room except his parents and his doctors. The media might think they know, but they don't. Period.
What I do know is that there is today no cure for mitochondrial disease. There is no miracle treatment in the US or anywhere else in the world. There is hope for drugs that can prevent the disease from progressing, but there is yet a miracle drug to be found that can restore failed mitochondria.
What I also know is that the heart breaking decisions Charlie Gard's parents were faced with, I have been faced with. My friends have been faced with these decisions. We didn't appear in courts or social media. We fought next to our children and loved ones at the bedside of a hospital room in an intensive care unit. I have hold my child's hands, and the hands of other very sick children, who I knew the most difficult decision had been made for. I knew it would be the last time I hold the hand still being warm.
These decisions were never made in a vacuum. They were never made by either the medical team or the parents. They were made together, not always in parallel. Most often not in parallel. The medical team seeing the signs earlier than the family. The medical team carefully bringing up the topic of quality of life. The medical team trying to feel out where the family stands. Trying to bring options to the table. Tears, hugs, and anger all bundled up into one crazy mess. Denial, hope, despair. Achy bodies from too much tears and muscle tension. Blurry eyes from too little sleep and too many tears.
When I understood the magnitude of mitochondrial disease and the devastation of the disease, I feared for years that I would have to make a decision like Charlie Gard's parents. I feared that my child would end up on life support, and that taking out the breathing tube would mean no more breaths for my child. I feared that I would struggle with the right decision, and knowing when the end had come.
In the end, I knew. I knew like Charlie Gard's parents knew. I knew that the only right decision for Jacob was to remove his breathing tube. He had slept for days. He wasn't sick with another pneumonia or virus. His body simply couldn't take another breathe. There was no medicine in the whole wide world that could change that.
I will never forget what unfolded in the PICU room that last weekend of Jacob's life. We were surrounded by Jacob's circle of friends who loved him so very much. There were tears and laughter from all the stories and memories our boy had created in his ten years of life. There were doctors by our side who didn't just care about medicine, but cared about our boy and knew they would miss him dearly. There are memories from that day that will make me start crying any time I think about them. When his long standing best friend and nurse hugged him like she could never let him go. When Sarah refused that this was the time to let go because she needed more cuddle time with his brother. When my dad called me right before we had to make that dreadful decision reality. When I laid next to you in the hospital bed your last night tracing your face with my fingers, so I would never ever forget a single piece of your beautiful face. And I will never forget your last breathe.
There are too many Charlie Gard angels to count them. They are happening every day in hospital rooms around the world. There is no right or wrong. There is no taking sides. There is just tragedy to have to say goodbye to a child where there is no cure in sight and no more medicine to help. What I hope for Charlie Gard's parents is that outside of the media they had time to be with their Charlie, and that they came to peace when the most devastating decision was finally made.
This post is for Charlie Gard's angels and all the parents and caregivers out there who had to make the most dreadful difficult decision in their lives. They did it out of love for someone they loved more than life itself.