25. Bit by Bit

25. Bit by Bit

From Chicken Soup for the Soul: Find Your Inner Strength

Bit by Bit

Life is a flame that is always burning itself out, but it catches fire again every time a child is born.

~George Bernard Shaw

“Bad news, it’s a tumor.” These words, spoken to me matter of factly by an ER doctor, changed my life forever. I knew I would never find joy in life again.

My five-year-old son was dying. There was nothing that could be done to save him. The tumor in his brain was inoperable. A doctor looked me in the eye and said, “Your son will die.”

I begged my surgeon husband to find some place, some hospital that could perform a miracle and save him. His silence night after night as he researched and read e-mail responses gave me the answer I dreaded. There was no hope.

Joey was a vibrant child. I knew that from the moment he was placed in my arms for the first time, his wide eyes already taking everything in. He was energetic and joyous and laughed often. He had a child’s passion for life. He had three younger brothers who worshipped him as he was so good and kind to them. He was the thinker of ideas, the player of games, and the doer of good things.

But there were the headaches that would stop him short, intense pain and vomiting interrupting his five-year-old play. Never in a million years would I have imagined that a beast was taking over in his brain.

After his diagnosis, he was still curious and happy, but different. His razor-sharp memory was gone — the tumor had stolen it. His interest in new games and toys waned — the radiation treatments took care of that. His slim, energetic body that could run and jump and leap was replaced by a bloated, sore, uncomfortable shell — the steroids saw to that.

For fourteen months I watched as my sweet little boy became unrecognizable to me. Day by day, he faded away and there wasn’t anything I could do about it. I wanted to cling to what was left of him; but that meant neglecting the rest of my family. They needed me too.

I had to let go of him in pieces — his energy, his infectious laugh, his wonderful ideas. We took him out of kindergarten and eventually stopped the chemotherapy. Soon, he was merely a fragment of what he had been.

And during one summer night, I lay with him all night long and held him as his breathing slowed until it ceased altogether. My sweet little firstborn child was gone.

The rest of the summer found me falling asleep on the couch with the television on. I didn’t want the silence and darkness to remind me of the pain and sadness of losing my son. When I did crawl into bed, I didn’t want to leave it. I would sleep late, listening to my three other sons taking care of themselves downstairs.

Cancer had robbed them too. It had robbed them of their brother, friend, and idol. Joey was the fun-maker, and without him, I had no desire to do anything that would make me remotely happy. The long, lazy summer days of setting out on adventures with my sons were gone. Everywhere we went, everything we did, reminded me of Joey.

That fall, life was moving forward. The boys were back in school and, out of necessity, I had to keep busy. But I was still depressed, aching for my son, and not taking care of myself.

And then, I was pregnant again. But I didn’t want another baby.

I had turned forty the month before Joey died. The month after he died, I gave away all of our baby things. Part of my depression and misery was accepting the fact that I would only have three children—not four like I had always wanted.

Because of my age, because of three previous miscarriages, because of Joey’s cancer, because one of his brothers was born with a birth defect, I was terrified to have the baby. I was sure something would be wrong with it, and I knew I wasn’t strong enough to handle that. All of my strength had been spent on the cancer.

I prayed for a miscarriage. I prayed to God that He would take the baby away and give it a better home. But ultrasound after ultrasound revealed a strong heartbeat, a perfect baby with no defects. Only, it was another boy, and I didn’t want another boy. I didn’t want a replacement son. I wanted the one I had lost.

I never looked at the ultrasounds. I didn’t want to get attached to this baby. I didn’t want to love someone that much again because I knew it would be too painful. But the day of his birth came, and he was perfect.

And he, like Joey, had his eyes open wide as he was placed in my waiting arms.

As he grew, I noticed so many similarities to his brother. “Look,” I would say to my family. “Look at how he curls his toes around his toys like Joey did.”

Or I would say, “Look at the baby. Look at how he is bouncing forward on his bottom. Joey used to do that.”

In the dark and quiet of his room, as I was rocking and nursing him, I would look down at him and whisper, “Joey?” I was certain that my son had been sent back to me. I needed to believe that.

As time went on and Baby Evan grew older, he became happy and vibrant, curious and verbal — all traits Joey had as well. But I noticed him developing his own little personality too. He was becoming a little person apart from who I thought he should be. Bit by bit, I accepted that.

And over time I let go of the notion that he was supposed to be Joey sent back to me as some kind of Karmic compensation. I accepted the fact that he was simply a gift meant to heal me and teach me how to love again. He was meant to bring back the joy in our every day.

It has been almost four years since Joey died. Not a day goes by that I don’t think about him and feel a sick sadness in the pit of my stomach. But now I look around me and I find joy in the memories we have of Joey. When my older boys hug and help Evan, I see what they learned from Joey. When they beg me to tell stories about when they were younger, they laugh the hardest at the parts about Joey. And Evan joins in the laughter too. Even though he will never know his oldest brother, he will hear the stories and see the pictures and make memories of his own.

Bit by bit, with the help of each other and our memories of Joey, we are all healing.

~Kathy Glow

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