My son’s mother Marlo posted some old pictures on FB as a way to celebrate Father’s Day. One of the pictures was this one.

 

It hit me like a freight train and out of nowhere I started to cry. How could a photo taken 12 years ago affect me so profoundly?

For those of you who have ever had a sick child on the verge of death, you will understand. Everyone else can just read this and wonder.

Orion was riding in the car and I remember he got quite cold. It was a winter day and he probably wasn’t dressed warmly enough, I was that kind of father. I sent him to his mother with what seemed like a cold. She called me several hours later telling me that she was going to the hospital because Orion’s urine was black. I thought it was a strange joke, although I couldn’t figure out the punchline. When I arrived at the hospital I realized that it was no joke. I was a trained EMT at the time and could see that he was yellow and jaundiced and he was incredibly weak. Marlo was in a place of deep fear, she had never heard of anyone peeing black, I couldn’t believe it myself until I saw it. I couldn’t understand what was happening. We met with the doctors who had taken blood for tests and they explained that Orion had an incredibly rare ‘disease’. His white blood cells were systematically killing off all his red blood cells and there was very little they could do about it. They transferred us to Syracuse as there was a specialist there who had dealt with this before.

Marlo and I drove up there and I stopped by Toys R Us and bought about $1000 worth of Lego. I would normally never do such things but suddenly it became possible that these might be the last hours I spent with him and building with Lego was his favorite thing to do. The clerk must have thought I was mad buying so much Lego with tears in my eyes and panic in my voice. I returned to the hospital and didn’t leave his side again until he was released 3 weeks later. I never thought about working or money or anything at all, I just felt like I needed to be present for my son in his final hours if that was what this was.

They took one vial of blood from him at Cayuga Medical Center and afterwards his condition rapidly deteriorated. Almost all his red blood cells were brand new and very tiny and not very capable of carrying very much Oxygen. He was so sick that he could barely lift his head. The black urine was dead red blood cells that were saturating his blood stream. Usually dead red blood cells get passed in the stool but his body was so thick with them he was filtering them out in his kidneys. His liver shut down and that was causing the yellow skin. He was dying right in front of my eyes and there was very little I could do about it.

That first night was a hard one. There was a female doctor from India who said she needed to take blood from Orion. She wanted 6 vials, I told her no. She went ballistic on me. She raised her voice and started telling me about how I was going to kill my son. I calming and serenely told her no. She said that she would get the security guards, I told her that I knew my rights. At that point I knew that if they took 6 large vials of blood from Orion he almost certainly was going to need a transfusion which was risky for anyone, but especially risky for a 3 year old. Looking back on that incident I realized that was what being a parent really is. In the face of great storms, being the calm and forceful voice that advocates for your children in an intelligent and thoughtful manner.

The administration and other doctors apologized for her behavior the next morning, but it was not necessary. She refused to deal with me from that point forward and instead I interacted with a very nice Ukrainian doctor who helped to educate me about Orion’s condition.

One day blurred into another. They were filled with building lego models that were designed for children 14 and up. One set took us over 3 days to build. I would look for the pieces and Orion would patiently put them together. He was happy, every day I pulled out a new set and we would spend the whole day building. At night I would stay up till odd hours in the morning researching his illness and trying to understand what Cold Activated Autimmune Hemolytic Anemia really was. The more in-depth I researched it the worse the prognosis got. For severe cases like Orion’s most people were given Autoimmune suppressants. I read a lot of horror stories on the internet from parents whose children got this disease and before they could really react they were dead. Many of the medications ended up killing half the people who took them. Without an immune system the body is incredibly vulnerable.

Christmas in the children’s cancer ward was pretty surreal. There was lots of people who showed up dressed as Santa or elves bearing gifts and exciting positive energy. It was hard for me to smile when I knew that my son was dying. There was a little girl who had cancer in the same room as Orion. Her parents had to work and could only visit a few hours every day. I could sense her jealousy as I stayed with Orion day after day and night after night for over 3 weeks.

In the end his body corrected itself, but something inside of me never did. Everything in my life seemed so pointless and stupid. Work seemed like something that was nowhere near as important as spending time with my son. I wanted to be on my deathbed and have my dying words be “I wish I had spent more time at work”. I wanted one thing and one thing only, to be the very best father to my child for as long as I could until one of us passed on from this life. My only prayer, my one wish for this life is that I leave first.

Buddhist monks define happiness as:

– Grandfather dies

– Father dies

– Son dies

Perhaps that is the most we can hope for.