I stopped writing months ago. We were home. We were always together. There wasn't a rotation of who was caring for Sam so there wasn't a rotation of the keyboard. I never stopped writing in my head, I just had enough strength to focus my attention on caring for Sam and the rest of the family. I knew Phyllis could say it for us all. I trusted her words to speak for me too. The weeks and months were challenging, all living in Milwaukee and all living at home. So many people made it possible to breathe.
Between the fluids and all the pills and the level of attention that was needed I wasn't sure I could keep it all straight (I am not a medical professional for some very strong reasons).
So I stopped writing. Time was incremental. The end of the day when all the kids were tucked in for a night was a time when the entire care team at home would just crumble onto the couch, watch a lot of television and pray that everyone slept well through the night. Sometimes our prayers were answered, sometimes not so much. I barely had strength to think let alone take a turn typing.
This is what I wrote Sunday night and wanted to say if I had stood up yesterday and spoke at Sam's funeral. I trusted Rabbi Lowenstein to say it all. I felt Phyllis and my kids needed me more.
For 18 months I feared that my hands were never clean enough to be near Sam, that my runny nose wasn't just allergies, but was something that would force me to stay away from my Sam for an unforgivable week or more. I feared every bath, that I hadn't prepared him well enough, that dirty water would reach his central or picc line and complicate matters beyond our control. I feared that his chemotherapy would kill him, taking out his heart, a kidney or his liver. When he was microwaved, like leftover mac-n-cheese, for three days in a row in preparation for his bone marrow transplant, I watched and dreaded the cataracts the radiation would have caused if he had reached sixteen. For 18 months I lived in fear that I would somehow contribute to the cause of Sam's death.
I breathe can breathe a lot easier now. I cry a lot, but I no longer fear that my care won't be enough. The worst has happened. Somehow beyond our wildest dreams we did everything right and yet Sam still died. And yet he is no longer in pain, he is no longer furious at the world and thinking that God hates him. He is gone, hopefully at peace, knowing how much we all loved him and will always love him.
I cry for all I miss. I cry for all Sam will miss. I cry for the loss my other children have suffered. I cry for the hole in my wife's spirit. I cry for the insanity, the injustice. I cry for all the things I can remember and all the things I can't remember. I laugh at who Sam used to be and the short films or pictures this friend or that friend bring to me and share with me. I laugh at private jokes David and I have been collecting for the last several months. I laugh when Solomon says something way above his pay grade and age and when Yael is being silly. I may not always have tears because often they are flowing on the inside.
Sam was an amazing child. He was the best baby in the world. So much so that Yael was born 16 months later so that someone could share in how amazing a baby Sam was. Sam's smile always lit up any room he was in. Sam's laughter was contagious and caught anyone present up in the fun he was having. Everyone who knew Sam loved Sam no matter whether he was having a good day or a bad day. Sam embodied love even if he hated being kissed all the time, hugged all the time or touched often. And yet the secret was if you let Sam approach you he was the most huggy, kissy, affectionate child around. He just wanted it all on his terms. The deeper secret is that Sam let me hug and kiss him whenever I wanted. I was his person. I spent six of his eight years staying home and taking care of him and then Yael and him together.
Of course during his terrible threes and furious fours we nearly killed each other. There were days I wasn't sure either of us would make it through them. But somehow no matter how much we yelled or fought, at the end of the day I wanted to convey to Sam how much I loved him and would always love him no matter what. I wanted each day to end with a moment of peace and an "I love you" on our lips. So at the end of each day I would lay in bed with Sam pressed tightly against me. I began making up stories without reading from books so that he could rest in my arms without them being occupied. I made up several songs with him as the central character in the song so that he could hear his name sang lovingly in my voice at the end of each day. We ended each day peacefully snuggled gently against each other so that he always knew I loved him. And when we finished I would always try to give him close to a hundred kisses on the top of his head so he knew I never really wanted to stop kissing him. My secret goal was to someday have planted ten thousands kisses on his little head.
For 18 months I only ever kissed Sam on his head fearful of what my germs would do to his compromised system. Even up to the end I would only plant kisses on his cute, little bald head when I put him to bed. He said to David last Wednesday or Thursday night: "David, Dad's kisses on a bald head are the best. You gotta try this sometime."
Sam was always an amazing kid. He hated being in the middle. His four-letter word was "fair" because life wasn't fair. But he was always an amazing kid who taught us something every day he was alive. He will be missed by everyone who knew him and even those who never got the chance. He was like a Sabra (Hebrew for Prickly Pear), warm soft love embodied in the center of the prickliest fruit.
I will miss hime forever. May his name always be a blessing.