4th of July, Independence Day

July 4th, Independence Day.

14 years ago a boy watched for fireworks out the narrow window of his hospital room. He had asked for special permission to step outside of the hospital which had held him captive for the weeks prior to this day of celebration. He just wanted to sit outside, hear the sounds, and see the lights in the sky. They said, “No.” But, at least he tried. He always tried. He learned early on in his life to ask for whatever he wanted, even if he knew the answer would be “No.” I am still learning how to do this.

So, on the 4th of July, he tried again. Being told “No” didn’t stop him. I watched as he tried again. Head cocked sideways, on his tip-toes, he tried peering out the narrow window, looking between the hospital and a giant research building that blocked his view of the world outside. He tried to see fireworks. I watched as he shifted his weight, stretching his neck and finally, giving up. Shrugging his shoulders, he put his head down, I could see he was sad. He just wanted a glimpse. He just wanted his freedom. He wanted his independence, too.

He was attached to an i.v. pole; 4 lines attached his body to this pole that controlled his existence. Three of those lines ran straight into his heart. His heart that wanted to be free and independent, was being held hostage by these lines. He, is my son Robert, and my mind’s eye still sees him on that night 14 years ago.

He was fighting hard for his freedom and independence. Forgoing fireworks seemed a small price to pay for his life. He knew that, but he still tried, I love that about him.

Robert was smart. But, he was more than just smart, he understood the words that he overheard in all the meetings he sat in on with his parents and doctors discussing his disease. Robert knew if he ever wanted to live, to be free, to be independent, he had to be attached to this pole, and survive this horrible ordeal. At 11 years old, this boy understood that this was his last chance, his final hope, it was truly a matter of life and death, his.

Yet, the gravity of his condition did not keep him from wanting to see fireworks that night. He surely never imagined that would be his last chance to watch them light up the night sky in his lifetime. It was his last 4th of July. I should have lit up fireworks every single day he was alive. He deserved that.

But, you see, when you are in the fight for your life, you believe in the unseen. You believe what you are doing to save your life will work. You do the work, and you have faith.

Little did we know, the very next day was “do or die” time. The next morning they woke us up before the crack of dawn informing us the marrow was being delivered and would be ready to be infused into Robert in the next hour. We did not know it would happen this fast, or without notice. There were no labor pains to warn the arrival of my son’s new life. What we did know was, it was his last hope. His body had been stripped down to nothing but cells dying off from radiation, chemotherapy, and countless other concoctions administered for this purpose, to seek and destroy everything that was old in order to receive new life.

It was surreal to stand by my son’s hospital bed as the doctor walked in his room holding a bag of marrow that could save him; that bag was my son’s only hope for living. And my son knew it. He wanted to see the bag. He studied it, I think he wanted to kiss it like it was the best fish he ever caught. He could not touch it, but he studied it. He asked them to turn it around so he could see all sides of it. He nodded his head, acknowledging it, bowing to its power, knowing he had to be ready to receive it-that was his job.

He laid back as he watched and listened. He was quiet. He was intentional. Robert was fully aware of every beep, every sound, and every breath being breathed in that room. He quietly stared at that bag and needle as they injected it into the line attached to his heart. I am sure he hoped for some sort of magical surge of “The Force” to bring him to life, yet, he remained quiet. He turned on his side when the doctor told him to. He listened as they watched him closely. I was glad he was on his side and could not see the panic and sense of urgency on the nurse’s face as she watched for signs of destruction; his blood pressure shot up, other expected things happened, he turned red and his skin became very hot. Robert did not move. He stayed focused and calm. No doubt he was doing his job, receiving his new life giving marrow.

The unseen hope became our only hope. Talk about faith. Imagine knowing you are at your last hope. KNOWING–you are at your last hope…

Fourteen years later I remember knowing this reality. I stood by watching as someone was at the end of their rope, their final and only hope, their last hope, their only chance at life, if this didn’t work then it was over…I stood and watched; I waited and  believed. As Robert’s mother my job was to believe. Oh, don’t think for one moment I did not have a million other responsibilities to help my son win his freedom and independence, but I chose to take it to the ends of the unseen realm called faith and believe. I believed that every single cancer cell was killed off, even the ones they warned us would hide in his big toe or testicles and try to kill him. I believed in the unseen battle that raged in his body. So did Robert.

The fight for freedom and independence is rarely won by simply fighting with what we can see. We know it is won in the dark shadows deep inside of our minds, hearts, souls and spirits. We do battle every day against things that threaten our livelihood. Insecurity, hopelessness, self-defeat, lies we were told, hurt, fear, harm done to us, lack, and my goodness whatever else we conjure up. Not only did my son have to kill off his own body to live, he had to combat all the unseen feelings of depression, lack, hopelessness, fear…Robert personified faith. That kid did everything he had to do in the physical world necessary to live; and he did everything he had to in the unseen world necessary to live. He did the work, he had the faith.

On the 4th of July, Robert asked the powers that be to let him go outside to watch the fireworks. When they said, “No.”, he didn’t give up. Instead, he dragged his weak, hurting body and i.v. pole and tried to peer out the narrow window in his hospital room for a glimpse of the life he was missing.

He never gave up.

Robert, thank you for never giving up and having faith…10400446_102926083710_255878_n

Slurping Some Soup

Slurping chicken noodle soup, Robert looked up from watching Saturday morning cartoons, “Robert, I need to leave for a bit, will you be okay for about an hour?” “Sure Mom, I’m feeling a lot better this morning. I hope I can get out of here today.” “I hope so too, I love you, I won’t be long.” “Love you too, Mom.” I leaned down and kissed Robert’s scruffy head of newly grown hair-I breathed him in a bit holding my face there for just a moment. 

Five minutes prior, I had been sitting with a doctor who informed me that Robert’s leukemia was back and he would die inside of 6 weeks.  As he spoke, I stared at my 11 year old son watching cartoons and eating soup; the doctor’s words traveled from his mouth, hovered in the air finally, piercing my ear. He offered no mercy, there was no hope, no clemency in his words. They were a death sentence for my young son. Robert had no idea what his mother had just been told. His fate was being sealed on the other side of a glass window…

I stepped out of the cold hospital to be greeted by a clear, crisp cloudless fall day. It was early October and as much as we hated being in Tennessee, the idea of watching the seasons change seemed inviting. Robert and I would drive around the winding roads taking in the lush green landscape and talk about how it will look once the season changed. It even smelled like fall that morning. I sat on a bench, looking into the cloudless sky, the words of the doctor resonating in my ears, the image of Robert sitting in his bed just like any 11 year old boy would on a Saturday morning watching cartoons.  All I knew was, I had to call his Dad and repeat the words of the doctor. 

Robert was elated to learn that his dad and older sister were coming back early. “Jessica is coming too? She will have to miss school, I can’t wait to hear about school, heck I can’t wait to get back to school!” They arrived late that day. The drive from the airport was silent except for the short conversation where the 3 of us agreed not to say anything to Robert until after his bone marrow aspirate on Monday. I did not know who I ached for more, Robert, his Dad, or my 12 year old daughter, the oldest of our 4 children. I did not even bother to factor myself in the equation of pain. There seemed no grace for a Mom at a time like this. It seemed my fate was sealed as well. 

Robert’s excitement to see his sister and Dad warmed our hearts. He quizzed his sister about school, told her about his new backpack and school supplies, how it felt “kinda cool” to be in Tennessee this time of year, fall, back to school time. “They had a big party for us, they gave us school supplies, some dumb Barbie dvd and there was this girl dressed up like Barbie.” Robert talked and talked to his sister, they did what any brother and sister would do, acted like kids excited for new things. 

The 4 of us spent Sunday together. Robert wore his mask to protect himself from as many airborne things he could, he had no idea we were told it did not matter what he did now. We had as much fun and laughter as we could that day. At one point Robert kicked us out of his room so he and his big sister could watch one of his favorite dumb movies. His Dad and I stood outside the room listening to them laugh like fools…we cried and laughed when they did. Robert and Jessica were thicker than thieves, my “Irish Twins.” They loved being called that. I do not know how my 12 year old daughter kept the secret of her brother’s fate those days, but she did. She wanted to enjoy his laughter; her bravery humbled me and made me stronger. 

 Monday came too quickly. It was October 7th. The hospital had begun decorating for Halloween. The kids talked about their costumes and wondered if Robert would be home for trick or treating. Robert’s bone marrow aspiration was finished by late morning. His Dad and I were delivered the confirmation that his marrow was full of cancer cells. His transplant had failed. How were we going to tell him? Robert understood, as best as an 11 year old could understand, what it meant if his transplant failed. We all went back to our apartment. I knew I had to be the one to tell him. I also knew his Dad could never tell him, he could not even tell himself. No one offered us any hope, there was no mercy to be extended. Relapsed leukemia offered no leniency, and handed down a hefty sentence. 

Robert, Jessica and I were lying on the bed in our room, Robert’s Dad listened quietly in the other room. I had no words. What or how do you tell your 11 year old son he would not be attending the art school he had been accepted into with his sister, or that he might not be alive for Halloween? There we were, the 3 of us, huddled like puppies. Our heads together, me in the middle, my “Irish twins” on either side of me lying there anticipating an afternoon nap.               

                       “Robert, I have to tell you something…                                                                         Robert, your cancer is back.” 

As the words left my mouth they hovered above us as we hoped they would vanish into thin air, but they didn’t; they landed right where they were intended to land… 

                          ”Mom, my transplant didn’t work?”                                                                            “No Robert it didn’t work.”  

My heart slowed, I was gasping without making a sound…I could feel tears on my left shoulder where my sweet boy always laid his head. 

                          “Mom, I don’t want to die…                                                                                                I don’t want to die…”                                          

His words breathed out quietly, softly a plea for mercy sent into the thin air hoping not to vanish but to be heard to change his fate… 

*Robert lived to trick or treat that Halloween, he died 6 weeks and 1 day later.