If someone asked me 13 months ago if I would be standing after losing a child, the answer would have been “no”. Today, I know differently. I am standing, surviving and trying to live a life of happiness, love and kindness.
My son, Trevor was born with a condition called Nemaline Myopathy, it is a neuromuscular disorder that can effect breathing, talking, walking, eating, etc… When Trevor was born we did not know that he had this condition, I had some complications during pregnancy but nothing prepared me for the labor and the Code being called after my son stopped breathing. He was placed on a ventilator and had a million cords strapped to him that shook the very core of my being. The NICU doctors were trying to figure out what was wrong and prepare us as parents that he might not make it.
The days ticked on and felt like years with all the emotional ups and downs. He was transferred to a Children’s Hospital with hopes of more options, but instead we were met with more obstacles when one of the doctors in the middle of the night decided to take him off of the ventilator without speaking with us and he crashed again and was re-intubated. We were told this information over the phone afterwards. We had just left the hospital 3 hours prior after he was settled in from being transferred and we were assured that they would only be monitoring him for the night. He went to being hyper-ventilated to never breathing over the machine. This was very difficult for us as parents to grasp and we started seeing him in pain more and more. We began to see the life that we had witnessed at the 1st hospital go out after only a few short hours in the 2nd hospital. This is when we made our decision to let him go because we could not watch him suffer any more and we wanted him to be at peace.
Hardest decision of my life and one that went back and forth on. Given his presentation that last day I know in my heart we made the right decision. However, the anger I feel at the doctor that made that decision is great and I wish I could sit in a room with them and allow them to witness the pain and doubt they have put into our minds. We still could have made the same decision but we will never know what the specialists would have recommended/ said or what we would have seen over the next few days if they had not done that.
370 days ago I held my 7 day old son in my arms and rocked to him, sang to him and loved on him as he peacefully passed from this world to the next. Each moment is etched into my brain and I fight to remember each second but also want to forget that it happened because the agonizing pain is too great some days.
I struggle to never have him forgotten by the world by sharing him with others, but also hurt from the exposure of sharing his story. I am learning to live with the constant yo-yo of emotions everyday. I can feel immense joy and still sadness all a the same time and it is frustrating and makes you want to pull your hair out but those are the emotions of this grieving mother.