This is probably the hardest story that I have ever attempted to write, and do so because of another blogger on Newsvine who asked me my story, and to whom I gave no answer. I write it because of another story she wrote that dealt with the subject of letting go, something that touched me, and caused a stirring of warmth just large enough to allow me to attempt this. She'll know who she is if she ever reads this.
My son was four years old when he was diagnosed with leukemia. The shock that his mother and I felt at that moment is a feeling that I don't believe time will ever erase. Sure, we knew he'd been feeling a little tired and under the weather, but leukemia? Of course we had to have a second opinion, which confirmed the first, and our two year descent into hell itself was cemented in stone, a ride for which there was no off switch, nor even a way to pause the wreckage that ensued.
When they first started him on chemotherapy, he didn't immediately show the side effects that we were warned about, and so our hopes rose that possibly he wasn't really all that sick, and this would make every ok again. We would get through this relatively unscathed, and would be able to return to our normal routines.
But alas, we deluded ourselves with these false hopes , because before long, he started to show all of the classic symptoms that all people generally do when undergoing one of the harshest treatments ever known to man. He started vomiting everything that he ate, and his beautiful dark hair started to come off of the brush in clumps. Assured by the doctors that this was normal, we silently cried inside as we stood helplessly watching our baby degenerate into a malformed caricature of his former exuberant self.
It didn't take very long at all for the hospital visits to turn into a full time hospital stay, with one of us in his room at all times. Schedules were rearranged, jobs changed, and a 300 mile move was undertaken in order to be right near the hospital where he was being cared for, one of the best children's hospitals in the country.
Times would come during this two year period wherein he was able to come home for a few days, but even during those times, the sickness and the treatment had already taken their toll to such a degree that walking was difficult for him, and the games we used to play were no longer feasible, and so the Playstation became our constant companion. Meal making was an endeavor in and of itself, due to strict dietary necessities, and the orders from the doctors that all meals had to take into consideration a nutritional guideline designed to boost his immune system.
The second year saw things turn for the worse. Completely bald now, and barely able to speak at times, we were pretty much living at the hospital by now, as different variants of chemo were introduced, and more strict regimens were attempted. His little body rejected these invasions of chemicals that were introduced into him through a catheter that was implanted directly into his heart, and the pain and the cries breaking my heart, the morphine drip of little consequence even at maximum dosage.
I sometimes drifted off to thoughts of the days of yesterday, when he was healthy and playful and full of youthful pranks, such as the time he tried to feed my younger daughter worms that he had dug up in our yard. I remembered how we would prance around the living room calling out "Jerry! Jerry! Jerry!" in parody of his mother's love of the Jerry Springer show. Or how we snuggled up under the blanket to watch the Giants, and how I trained him to answer my question of who the greatest team that ever lived was, and he would answer in that all knowing child's voice, "Dad, it's the Giants of course!" But then I would shake myself, and come back to the anesthetic smell of the hospital room, and the realization that he was indeed going to die.
The worst part for me was that he knew it also, and he was the one who refused to see any tears in the eyes of his mother or myself, who would tell US that everything was going to be ok, and to stop worrying.
In early October of that year, the doctors told us that they didn't think there was anything more to be done. They spoke of bone marrow transplants, but a donor search had turned up negative, which I refused to accept, but his siblings were from a different mother, and therefore not compatible. Plans were made for experimental chemo, something they called 'Orange', and we were hit full in the face with a horror that no parent ever wants to hear.
Someone from the children's terminal ward contacted the Make A Wish Foundation. We would never have even thought of them at that time, we were concerned with comforting our dying child. A team from the local chapter showed up at the hospital one day, asking if they might visit with our son. They spoke to him at length about a variety of subjects, including his awareness of his situation. These were volunteers, but these people were the most caring and professional people I have ever met.
The choking sound was coming from me before I realized it, because the subject had gotten around to what he wanted most in the entire world. He told them that he knew he didn't have long to go. A six year old boy told them that he knew that he wasn't going to make it much further, and that he wanted to have one last Christmas before he went to see God. Leaving the hospital, I walked to a nearby park and raged with all of my heart at the same God that my son believed he was going to see soon, then returned to the ward to pray that He spare him and take me instead.
Within a few days, my son's hospital room looked like a display in Macy's store front. There was a tree decked out with all sort and manner of lights and baubles. Christmas lights were strung all over the walls, the windows, and his bed. There were even lights in the bathroom that he could not get out of bed to see. But Make A Wish wasn't done yet. Santa Claus walked into the room, and my son's eyes lost that old man's look for just a little while, as Santa had a line of helpers with him, carrying arm loads of presents, wrapped to perfection, and I mean a truck load of presents. Every game, every toy, every doll, and every possible thing that a child could ever want were eagerly torn open by my son, and the joy in his eyes made it seem for just that day, that everything was the way it was supposed to be. There are no words to express how I feel about the Make A Wish Foundation, a group dedicated to comforting dying and extremely sick children. There can be no greater calling than that, I think, to show love and compassion for children that did not come from you or yours, and these people are so full of love, that they take their time to do this.
My son refused any further treatment after this. He was done with the battle, done with the sickness and done with the pain. He refused to accept the experimental treatment put forth by his doctors, who were also the picture of compassion. And so, with a hospice worker and a gaggle of morphine, we went home. We played video games, me helping him use the controller, and watching him slip away a day at a time.
The day that he died, I was holding him in my arms, when he suddenly turned a sickly grayish color, and whispered to me "Daddy, I'm scared," exhaled, and simply left. They must have heard my outraged howls all the way down the street, or maybe it was the hospice worker, because the next thing I knew, there were paramedics and police there, one of whom gave ME a shot of something. I imagine it was meant to calm me down.
I won't go into all of the details of funeral arrangements or the aftermath. Suffice it to say that time does not heal all wounds, but I wrote this to try to make up for not writing about the Make A Wish Foundation before. I wrote this because the Giants are in the Super Bowl, and wherever my son now resides, he knows that the greatest team that ever lived is in the big dance, and when I watch that game, he'll be cheering along side me. I wrote this because I would like for you to know that not all charities are corrupt, even though I have blasted several of them recently. That the Make A Wish Foundation is a charity that is there to ease a child's mind when death calls, and that they should be supported by everyone. Please visit their web site, and if nothing else, send them an email of encouragement. Batmanchester