This is an extremely personal, exceptionally painful account of life, death, and choices. I had not planned on ever posting this here as it deals with my and my son's souls. If you judge me, revile me, or hate me for my choices, know that I've heard it all. My own mother and father called me a murderer. My best friend took me off the street when the lover I lived with threw me out for the decisions and choices I made. Having said that, realize I will answer any of your comments, hate filled or supportive. I am not ashamed or guilty.
Just after my 16th birthday I found out I was pregnant. I wanted an abortion, but at that time, it was illegal for me to have one without parental permission. My parents flatly refused. Abortion was murder. To this day I have resentment for that. Not because of my child, but because they took my choice from me. I fully support a woman's right to choose. My opinion on that will NEVER change.
I was still 16 when I gave birth to my son Johnnie. The pregnancy had been easy, if long. I went the whole 42 weeks. Johnnie was born 8lbs 12oz. Bouncing baby boy and only 4 hours of labor. He was dark blue when he was born, but the doctors said not to worry and gave him oxygen. He pinked right up and started crying.
When we went for his six week check, the doctor was concerned. He didn't respond to visual stimulus and seemed very still. I didn't know any better, I just thought he was a sweet sleepy baby. That day, my world changed.
My son was blind. Optic Atrophy Hypoplasia. This birth defect happened in the first weeks after conception. In addition, more tests revealed brain damage. Severe cerebral palsy caused by the blue when he was born. In less than 24 hours I, a 16 year old single mother of a sweet, happy, healthy baby boy, to a blind, spastic quadriplegic, who, according to the doctors, was having severe petit mal seizures.
We lived with my mom and dad. While I went to school my mom took care of Johnnie. In addition to high school, I took classes on how to care for my baby boy. I never flinched or hesitated for his care. I learned how to give and measure medicines, orally and later through a feeding tube, and even later through a gastric button.
Time went on and I met a nice young man, another single parent and we set up household together. I worked as a homecare provider, attended college for nursing and played happy families. As I was paid to work, so was my mother, to care for my son. It worked out well financially and emotionally.
Because Johnnie was not active or mobile, he was prone to colds, bronchitis and pneumonia. Late in his 4th year, he developed a productive cough and started to run a low grade fever. I brought him to his doctor immediately. Doctor Graves said it was a cold and he would be fine. I didn't really agree. It felt... Different. Colder somehow. He never seemed to get better and his cough got worse by the hour. Every day for 7 days I brought him in to see Dr. Graves. On Friday at 8:30, she refused to see him. By 9:00 he was in the ER in respiratory distress. By 10 he was in heart failure brought on by fluid in his lungs. Dr. Graves transferred him to Children's hospital without ever speaking to me about it in person. She called and said that he was having heart failure and that he was critical - he could die. Hell of a phone call, and the last time I ever spoke to her.
Thanksgiving week they admitted him to children's hospital ICU. Doctors I didn't know told me that he had something called ARDS - Adult Respiratory Distress Syndrome, basically the alveoli in his lungs were so badly damaged that they had sloughed. He had very little ability to move air in and out of his lungs.
Months passed in a blur. I truly have no recall of most of that time. I was staying at their critical patient family housing. They even gave me a voucher for meals at the hospital. I was there around the clock. I don't remember my 21st birthday. Not because I was drinking and partying, but because I was holding my baby boy. More time passed and he wasn't getting better. If anything, he was getting worse. He'd started having Cerebral Fevers of up to 105 degrees. It was soul destroying to see more and more of him slip away, even as he fought to hold on to me.
A few days before Easter, I looked at him and I... Really saw... The pain, the exhaustion... The anguish on his face. I went to him and kissed him and told him that he needed to stop worrying about me and think of himself, if he needed to be free to be with the angels, to fly away, I would be okay. I meant it with every beat of my heart. His pain, his agony, was clear to his soul, and it burned like acid in mine. I spent the rest of that day singing songs to him, never letting him out of my arms. When I left that night, I knew... I knew he would leave. The exhaustion was still there, but the fight was gone.
The next morning they told me he was doing well, for the first time he was breathing easily and the doctors felt he'd turned a corner. I felt that too, but in my heart, I knew it was his swan's song. Overnight his heart and lungs failed completely. They had intubated him and had him on full life support. I requested the removal of all life support. That Easter Sunday, surrounded by candy, bunnies, and symbols of childish joy of the resurrection I held my son as he left this earth.
My mother and father fought me, but could do nothing. My lover walked away and never looked back. He threw my things in the street and told my family to come get them or the trash collector would pick them up. They all called me a murderer. My four brothers... Two of them supported my right to make that decision even if they did not agree.
Needless to say, I was at an all time low. My reason for living, my son, was gone. My lover and my family abandoned me. My best friend invited me to stay with her to get my head together. My parents paid for the funeral and arranged it, for which I am eternally grateful. As my mother said at the funeral. Johnnie was her grandson, even if her daughter was a murderous slut.
After his funeral, graveside service and dinner, just as the sun was going down, I finally resolved what I was going to do. I was empty of everything but pain and the driving need to be with my baby boy again. I had to hold him, to smell the sunshine on his hair, to feel his arms clinging to me. I hurt so much, needed him so much, it was as if blackness of sunset had swallowed the world and I couldn't find a way back to daylight.
I resolved that if Johnnie couldn't live here in this world any longer, I would join him where he was. Remember, I still had all of his meds. Depakene, Phenobarbital, Depakote, just to name a few.
I didn't want to distress my best friend so I rented a hotel room, bought a fifth of Johnny Walker Red, and spread out the bottles of meds on the hotel room bed. I was determined to be with my son again. I want to make this plain, it was my intention to never leave that hotel room alive again. I knew very well what I was doing. My son had over 30 of each pill and one was a liquid that the bottle was completely full. I was going to chase it down with alcohol. Yes, I would have died.
I looked at the clock and thought that as it was 7:30 pm, that if I hurried, I would be dead today, the same day as Johnnies funeral. It seemed right somehow.
As I ran my fingers through the pills on the bed, mixing the colors up, making myself smile at the rainbow effect, thinking that now I'll be able to show Johnnie the colors on the other side, something very odd happened.
It was like my consciousness split in two. I was there, sitting on the bed and then I was... Somewhere else. And as I looked around, seeing a giant green terrace ringed with massive trees that I could hear sighing in the warm breeze I could feel on my face. The sky was an expanse of blue that went on forever, deep and rich, cloudless. I could feel the sun, but I didn't see it. The light was warm, and bright, but somehow soft. I stopped looking around when I saw the group in front of me.
A line of beings, I want to say masculine because that was my feeling, but I don't recall anything gender specific about them. In fact I don't recall their features at all. They were wearing long white robes with hoods that hid them for the most part. They stood almost in a chevron formation, with the point nearest me. The being that formed the point was holding Johnnie. Without a single hesitation I ran to him and scooped my son into my arms.
He gripped me tightly, nuzzling into me. It didn't strike me as odd that he was exactly as he had been, even wearing a diaper - but ONLY a diaper. He was naked except for that. I can't say how long I stayed there holding him, rocking him, breathing in the scent of his hair, feeling his light body in my arms, reconnecting with the love that flowed from him to me. It could have been hours or days. I never wanted to stop.
Then strangely, I felt something move across the light, like someone stepping in front of the sun, and a feeling of fear washed over me, a knowing, that the being that shadow belonged to, disapproved of my desire to stay, that my time was done. I clutched Johnnie tighter, my hand cupping his bottom, to pull him closer, and I noticed he was wet.
The point being stepped forward and removed Johnnie from my arms, taking him into his. Both Johnnie and I resisted, until I realized that my resistance was causing Johnnie pain. I released him, saying "He's wet he... I can..."
The point being said softly, gently, "We will take care of him now."
In a dizzying blink, I was back in the hotel room. I shook my head to orient myself and looked around. I was still sitting on the bed, but the pills, the meds, even the alcohol were gone. When I looked at the clock it read 7:35. Not five minutes had passed. I checked all around the room. Nothing. I sniffed the comforter and I could still smell the odd scent of the pills, but not a single pill to be found. I checked the bathroom to see if I'd maybe flushed them. The bowl was dry and still had the 'sani-paper' across it to show that it had been cleaned.
I was confused, but strangely I wasn't. I took a deep breath and closed my eyes, then slowly opened them when I realized the darkness that had consumed me was gone. I hurt, I missed my son, but I wasn't going to die. It wasn't my time. Johnnie had someone to care for him and I... I had things to do. That much was obvious if the Being that Blots out the Sun thought so.
The next day I enlisted in the Navy. I have had 2 more children, which you will hear about by and by.
Occasionally, I will glance over into the passenger seat of my car and see my Sunshine-scented little boy sitting there enjoying the ride. Even more rarely, I'll hear a soft giggle and know my Johnnie is happy.
I welcome your comments, even if you hate me for my decisions and choices.