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Living the life of Riley
by Amy Kenneley

On June 18, two days after this Father's Day, our grandson Riley will have a birthday. He will be seven years old. But there will be no parties this year, no presents to open or photos to be taken. Riley died on March 21 from a brain tumor.

Instead of a party, I will go to the grave that just now has been newly planted with grass-- a tin pinwheel, a little hockey stick and puck, and a vase of flowers marking the spot.

When he was born on Father's Day, 1995, our son told me he would be called Riley. "What kind of name is that?" I asked. "We don't have any Rileys in the family" He soothed me with "It's a good name and we like it."

When I first saw him, with his shoe-button eyes and fuzz of black hair, I cooed his name, "Ril-ee, Ril-ee" and the first of many wonderful smiles was bestowed on me. I was smitten. Riley it was.

It was easy to love this sweet child, who was himself a lover of songs and sports, hugs, kisses, floor-tussling and McDonald's French Fries. As he grew to toddler-hood I planned in my head the things I would be doing with him. With so many doting family members, I had to carve out a niche for myself somewhere.

I decided I would be the "Garden and Cookie Grandma" When he came over, he headed for the bottom cupboard door, where I always had a stash of cookies waiting for a curious child. I carried him through the herb garden, naming the flowers, crushing lemon balm, and rubbing lavender for him to smell.

It was his 3rd New Year's Eve, when he was two-and-a-half, that life changed for him and for us all. He started having terrible seizures. His parents rushed him to a hospital. There were tests and MRIs and finally the diagnosis: Riley had a brain tumor. There was a long operation, followed by lengthy hospital stays, chemotherapy and later, radiation.

I thought of that old movie, "The Life of Riley" where William Bendix as Riley turned to the camera when an impossible situation happened to him and said with a dead-pan expression in his perfect Brooklynese "What a revoltin' development THIS is!" The life of our Riley had taken a revoltin' development.

Sometimes the medicine and therapy was able to keep the tumor acquiescent, but seizures took away so many of his skills, it was a struggle just to come to terms with this diminished capacity in such a bright boy. Still, hope was the order of the day.

If Riley needed special help, his parents were ready to give it. Leg braces, oversized stroller, special dining chair, special belt, physical therapy, therapeutic riding-nothing was denied if only his life was made a little easier.

In January of 2001 he began radiation treatments. Everyday for seven weeks his mom drove him from Brunswick to University Hospitals. Next were steroids and he swelled like a little sausage.

He looked uncomfortable in his skin, but still had a wonderful chance to play Challenger baseball. His dad did a lot of the work when Riley was up at bat or in the infield, but Riley loved putting on his cap and shirt like a real baseball player, just like his hero Jim Thome.

It was shortly after his birthday last June that the doctors told Riley's parents that their little boy had only a short time left to live.

A lot was squeezed into those last months: Indians baseball games, hockey games, a visit from Santa, a trip to Disneyland, a month of kindergarten. Riley's weight dropped to a normal size, and by November he was really slim. By December he was too thin. His energy failed. He slept for long periods, sometimes only waking for a few minutes each day.

We chuckled when we realized that he roused himself for holidays, for holidays had presents. How he loved parties. When he had opened a present in great excitement, his mom coached him with "Now, what do you say?" Riley replied, "I LOVE presents!"

He sang songs with the music therapist. Sometimes he was so worn and tired, but he loved having people around and would fight sleep to be a part of any group. He loved his Disney movies, especially The Mighty Ducks. The nurses at Rainbow B&C always had that video ready for him when he came for chemo.

Most of all he loved kids and being around other kids. It was sad that some of them couldn't play with Riley on his own level for a few minutes. They wandered away when they saw he could no longer play as he used to.

So many people prayed for him. For four long years I told so many people about him and asked for their prayers. I think I wanted to bombard Heaven with words, and make God "relent" and let him live. I sent his picture to those who prayed for him, just in case they needed to put a face to their prayer requests.

Suffering has a human face, and that face was Riley. Look, God, how many people want him to live. It's not just me, it's lots of people...so, please? It wasn't very "theological" but nothing about me was "logical" those days.

On March 21 of this year at 4:10 pm, our son called us to say that Riley had just died a few minutes before. As they had hoped, Riley died in his parents' arms, on their bed, in his own home.

His legs were long, like his dad's. His cropped short hair-dark like his mom's-still showed the scar from his brain surgery. He had lost his baby front tooth. He was so terribly thin, like a skeleton, his beautiful dark eyes the biggest part of him. He was 6 .

What do we do now with this great sorrow? Right now we are working this out in our heads and our hearts.

Sometimes there is a great anger. Why him? Why this little boy who was so innocent? Why not--fill in the blanks here: a terrible murderer, a terrorist, a "bad guy"? We may cry "Why Us?" but the world answers, "Why Not?" Were we so special that life's tragedies would not be visited on us?

I was surfing the television a few weeks ago and was captured by a program in progress. The tale was one of a mother who brought her dead child to the Buddha, begging the Buddha to bring him back to life, because she loved him so much. The Buddha said he would, "But first, go back to your village and bring to me someone who has not lost a family member or a friend. Then I will bring your child back to life." The woman went from door to door in vain. She returned to the Buddha and told him "Everyone has lost someone. I can't find someone to bring you." "Yes" the Buddha replied.

Everyone loses someone. Our "someone" was our son, our grandson, our great-grandson, our nephew, our cousin-a small little branch of our family tree that bloomed so quickly and was gone.

Besides anger there is regret. Regret for all the "firsts" he will never have: first communion, first grade, first crush. I will trace Riley's would-have-beens by every little boy I see.

I will ask his age and if he says: "almost seven" or "almost ten" or "almost thirteen" I will look in that child's face and wonder if Riley would have had that same expression, the same haircut, the same smile if he had lived.

We are getting through our own firsts now: first Easter, first Mother's Day. Soon now, Father's Day and his 7th birthday...if he had lived.

Healing? What is that? I say goodnight to him, and good morning, too. His picture on the mantle with that sweet, questioning smile, his head cocked as if listening to something you are saying, brings both joy and pain. A hundred times a day he comes to mind in ordinary things.

I feel I am bleeding from sadness, and yet return to thinking of him as a safe haven even in the pain of remembering him. If I remember him daily, hourly, he won't be dead. I will keep him alive in my mind by sheer constant thought.

It is like pulling off a scab and forcing the blood to flow, forcing the pain to come. "Stop picking at that," my mom used to say, "It will only take longer to heal if you won't leave it alone" That may work for wounds of the body, but not of the spirit.

I will never heal--not in that cosmetic- surgery kind of healing, where all the lines and wrinkles are poofed away with a few nips and tucks. Do any of us forget the scar we have on our skin and how it got there? The sled accident, the slip of a knife, the bullet that tore through our flesh....we remember very well the how and where of our wound. Sometimes, it is merely the tiniest line, barely visible, from some long-ago hurt. Long past the time it is no longer visible to others, it remains seared into our own memory.

So shall it be with losing this little boy. No healing. If we are lucky, the lessening of the pain of his loss as time passes. But we will never be healed. We will always be wounded by the remembrance of this sweet child once here and now gone.

Acceptance. Will that day come? I know it will, but for now there is just a numbness and a kind of floating sense of my spirit, wishing to touch his spirit in some way. I believe we will meet again.

I know where he is, and that he is "okay" But will I ever be okay...will any of us?


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