From John, because I have no words…

After May 29, 2013 I struggled with a question off-and-on, the answer to which I’m pretty sure I knew, and probably because I didn’t like the answer, I continued struggling with the question. The question was: What’s worse, having a child whom you know is going to die and having to deal with all the horror that itself presents; or, actually having him die?

At the time, the feeling of being “buried alive” while we struggled to make the most of each day we had with Sam seemed to be the most difficult. How can you “enjoy” life with such a dark cloud hanging over your head? But, of course, we did. We had many absolutely wonderful times with Sam after we were told he was going to die. But at the end of each day (and many times throughout the day) we had to inwardly confront the reality that our little boy was dying. So each day was a struggle, a mental and emotional obstacle course that exhausted us and left us terribly conflicted and, well, just so sad.

But then, on October 20, 2013, he died. He actually died. It is, even now, incredibly hard to fathom. It still just doesn’t seem possible. How could it possibly be that our incredibly sweet, oh-so-huggable and kissable, bright, shining, inquisitive and inspiring darling little baby boy—is dead? He isn’t coming back. We will not see him sitting in his chair, or lying on the couch anymore; we won’t get to wake up next to him in the morning; we won’t get to kiss him goodnight and say “nighty, night; you have sweet dreams; I love you very much; and I’ll be seeing you in the morning”, as we did every night before he went to sleep. Unfathomable.

And right there is the answer to the question: What’s worse, living with a child you know is going to die, or actually having him die? It’s the dying part. Believe me…it’s the dying part that is worse. And now, 49 days later, it’s only now that I am finally beginning to remember the “old Sam”. The vivacious Sam. The healthy Sam.

I had a dream the other night about Sam. He and I were playing—what else—Cow! It was awesome. There we were just like old times in our imaginary wonderland. In the dream Sam was healthy and happy and perfect, and was speaking like the Sam we all know, with inflection and character and imagination. And then he laughed! Oh, that laugh! That visceral, infectious laugh. His whole body would laugh. His whole being would laugh. It came right from his soul. That smile and that laugh just seem to embody for me the whole totality of knowing Sam, in all his wonder.

It was an incredible gift to have known Sam. Even though he was my son (of course you would expect me to say good things) he was just so engaging and interesting and fun…I just adored him. And though I can’t have him here with me, to play with and laugh with, and just be a father to, I finally have him back in my memories and in my dreams. And as much as it hurts, I think it’s the first step towards some healing. This wound will never go away—it’s just way too big and there will always be some scar tissue—but it’s getting a little easier to breathe and walk and talk again.

  • bevbird
    Posted at 13:47h, 09 December

    Dear John, Dreams are a first step toward healing. Your mind is preparing you to say goodbye every time you dream of him. Treasure the happy dreams.

  • mveenhuis
    Posted at 21:58h, 09 December

    I also, had a dream, after my daughter passed away. But, my dream was of holding onto her, telling her, no begging her, not to leave. She had to get angry and yell at me( she never was mean or disrespectful), to let her go. I woke up sobbing, missing her. She kept telling me that she will be ok and that she is in a better place. I still miss her every moment of every day, but yes, it does get easier to breathe….just breathe John.
    As many other people that supported you and your family through this horrific ordeal, I don't know you, your wife and children and especially that special boy, Sammy, but, I know the pain that you are enduring. Like I have said to Sabrina, the parents of children, NEVER forget the pain. We just learn to cope.
    Remembering my daughter, Melissa, and all that she brought to my life, helps me.
    I hope that all of what Sammy has brought to you and yours, also helps you in the journey of the "new" life that you have to live, in order to survive the pain.
    As always, I am thinking of the bright star that you and your family have had for those short years.
    Take Care.

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