I remember the last day I had with my son like it was yesterday even though it has been an agonizing 3 months. I started sleeping downstairs on the couch right next to him, or holding him..... However he was most comfortable, a couple weeks before. I had spoken to as many doctors as I could all with the same thing to say..... There is nothing more we can do. They never actually said he was gonna die. I guess it was too hard for them to admit, or they thought I would break down. I'm not sure why exactly. Finally, my primary care doctor, his primary care doctor, told me straight out that he did not have much time. He got him started with some pain meds to keep him comfortable, and I set up a meeting with our end of life care team to set up hospice. Just a couple days later, it was a Sunday, we had decided to move him, which we hadn't done in a while (more than around the house I mean). We went to Kevin's parents house. I figured his grandparents and cousins should see him one last time. It was that day that I knew it would be soon. My son was dying and there was nothing we could do for him. He was on several meds for pain..... 4 I believe. Nothing was helping. I called our specialized team of doctors to see who was on call around 7 pm. Adam was screaming. He could not eat anything at all without being sick. Should I rush him to the ER like I had so many times before? Call 911 like we had several times before? They told me last time I rushed him in that they could do nothing to help him. They were willing to admit him, but he would die in a hospital room instead of at home. Was that what I wanted for my precious child? No, he deserved to be surrounded by those who loved him. When the on-call doc called my back they added a few more meds. We basically sedated him, and they called a hospice team directly. Our appt was still a couple weeks out, and I felt certain that he did not have that long. We got set up on Tuesday with hospice. The doctors or nurses or therapists or or or... someone came every day. Sometimes multiple people sometimes multiple times per day. They brought more meds. At this point there was nothing more we could do other than keep him comfortable. We had an insane schedule of meds. I had them written down, and the longest interval was 2 hours. Not that I could sleep anyways. Always afraid he would take his last breath alone. Starting Wednesday night, I would only sleep if I was holding him. He could only be held for a short time before he had to be repositioned. Nights and Days were the same. Family and friends came in to see Adam and to help with the other kids.
Thursday night, things went from bad to worse. He was struggling for every single breath. Something no child, no person should every have to do. I called hospice. I asked them how long this would go on for. They said from 12 hours up to several days. At that point, I did something I never thought I would do, and something I wish nobody ever has to do. I prayed to God to take him as soon as he could. I could not watch my baby suffer any longer. My husband was working nights at the time, and as he quickly deteriorated throughout the night, I knew I had to call him and tell him to come home. I called immediate family and friends. This would be their last chance to say goodbye.
They wanted to hold him, but I could not make myself let him go. Finally, only because I literally had to get up and go to the bathroom, I let a couple of people hold him and say goodbye. I came right back and took my limp baby into my arms. He was still struggling, but he held on. I know he did it for me. He fought for me! I wasn't ready! You cannot prepare for something like this. Some people may say that I only had him for 9 months. I was with this sweet child of MINE for almost every minute of 9 months!!! We were rarely more than a room apart, and only a few times did I leave him with his loving Grandparents. Even then I would not go more than 5 miles away so I could be back to him quickly. He was delicate and fragile from the minute he came home. The damage they had done by not providing medical care for 6.5 years was irreversible.
Several times throughout the day on Friday, I thought about changing my mind. I could revoke hospice and rush him to the hospital. They have to make it so he can live a little longer. Maybe just maybe they will find a new cure. Maybe they will be able to fix the damage after all. Then my love for my son won out over my own selfish desire to keep him with me for longer. I could not let my child. My precious and tiny 7 year old son, suffer another minute.
I knew I had to let him go. I also knew it would be the hardest thing I could do.
Friday afternoon came around, we had passed the 12 hours, he was still suffering regardless of how many meds he was on. He was miserable. I prayed and prayed for God to let him be free. At 7 pm his heart began to slow. His breathes were getting further and further apart. I knew his time was near. I tried to be strong for him. I told him over and over how much I loved him. My sister, who had worked in a hospital, had seen people die. She knew the stages. She lovingly walked us through the process. My husband and I, our best friends, my sister and her oldest daughter, my parents..... we all sat waiting, watching and crying.
Then it happened. He stopped breathing. His pulse was weak and fading. We all gathered close and said our goodbyes. Then suddenly, as if he just couldn't bear to leave, he gasped. It startled me! Then slowly and steadily, he started breathing again. It was still very labored and agonizing, but he could not let go. We decided next time this happened we would all be quiet and still.
A couple hours later, sometime after 9pm, it started happening again. I held his hand while he was in my arms, and I softly whispered "It's ok. Go ahead and go."
His breathes grew further and further apart again. His pulse slowed. His breathing stopped, but I could visibly see his heart beating. It was slowing. Everything seemed to be in slow motion. At one point, my heart was beating so hard that it shook both of our bodies. My heart was seemingly beating hard enough for both of us. Then it happened. His heart stopped. My baby boy was gone.
Have you ever held a person, a child, as they died?
The strangest thing happened. The fluid/blood that was bulging visibly out of his head went away.
The pain was gone out of his face.
He was finally free from pain. Possibly for the first time in his entire life.
He was an angel here on Earth lent to us for a short time.
He changed the lives of all who knew him.
He couldn't walk, crawl, talk, or hardly move, but he had an impact on the World.
He definitely changed my family..... He blessed us far more than you can imagine.
I miss you little man!!
