This was my boy, my son, my child

Reporter’s Notebook

Over the last 23 years I have written many, many stories. Some have been so heartbreaking that I wondered how people managed to wake up in the morning and go on. But then, these tragedies were not happening to me. Until several weeks ago, that is.

It’s funny how life can change in an instant and all the things we previously perceived as stressful or upsetting were no more than mere blips on the radar. That is what I remember most about the day I received the call that my son Andy was in the hospital in California with liver failure.

Although I knew Hepatitis B damaged my son’s liver several years back, and although he had been hospitalized for a brief period in January with a liver inflammation, he recovered quickly and without problems. Or so I thought.

We were aware that liver failure could happen in the future and he might need a liver transplant, but since he was doing so well, that thought faded from my mind and life went on, as it always does.

I am no pessimist and neither is my son. We both live in the moment and many would say we are eternal optimists. I suppose we both thought that something as serious as liver failure would never happen, but we were wrong.

Initially my son downplayed what was happening 3,000 miles away. From his hospital room we kidded one another over the phone about the merits of our respective football teams — the Giants and the San Diego Chargers — avoiding discussion about his condition. Because he sounded so good — and because the Chargers are doing so bad — I began to breath a sigh of relief. Maybe things would be okay after all, I thought. But I was wrong.

A day later there were no more calls, no more good-natured ribbing, because my boy became so critically ill he was unable to speak, or at one point, even breath.

My only thought was to get to my son as soon as possible. Even if that meant getting on a plane, something I had not done since 1986. But all that paralyzing fear of flying seemed to melt away as the mother in me took over. I quickly made airline, rental car and hotel reservations and packed, and then I counted the hours until it was time to leave.

Left with only thoughts that did little to calm my fears, I did what any investigative reporter does when faced with a need for information: I research everything I could about liver failure and what might lay ahead for my son. But regardless where I looked, what website popped up, the picture was not encouraging. All my steely reserve as a journalist did nothing to help me keep things in perspective either. How could it?

This was my boy. The blond, curly-haired baby whose smile melted my heart, who held onto my pinky until he was 14-months-old before he toddled off on his own, led his team to victory when he played Pop Warner football, made beautiful macaroni necklaces in school that I wore proudly to work because my son was the designer.

This was my child. The one who sailed through school with straight A’s, never sweated a test, woke up with a smile every morning, and loved Star War’s action figures with a passion until he discovered girls.

This was my son. The one who grew to be six feet tall, called me just to talk about a new recipe he was trying, or a basil plant that was growing like a weed. And he was the son who never forgot to say I love you, always forgot the exact day of my birthday but considered it a real milestone this year  when he actually called the day before.

He was his mother’s son. A terrible speller, not good with names, absentminded at times and quirky. He also smiled all the time, had a sunny, happy attitude about life and rarely let anything get him down.

Although life dealt him a few blows, specifically getting laid off from his  job as a graphic artist and web designer, he took it in stride, hoped for the best and applied for every freelance job he could while I continued to assure him the economy was bound to pick up. Just a week or two before he became sick, I even said to him that despite the job situation, “at least you have your health and that is what is important.”

Those words would come back to haunt me in the days that followed, echoing in my head, reminding me how carefree we all were before this happened.

As the plane took off for California, climbing high into the azure blue sky, tears slipped slowly down my cheeks as I gazed out the window. Any fear I had of flying seemed so insignificant now compared to the pain I was feeling as a mom. I had spent a good chunk of my life trying to protect my children, to keep them from harm. But this time, there was nothing I could do. This time, it was all in God’s hands.

I will never forget how my son looked that night after we landed in San Diego and raced to the hospital. As I cradled him in my arms, my grown son was a little boy once again and I was just his mom, trying to comfort him.

The only difference was that before I could always make things better. But this time I couldn’t. There were no easy answers. No solutions. No magic Band Aids.

The reality of this shook me to my core. Three thousand miles from home, we were alone and trying desperately to grasp the scope of what was happening. Not to mention what could happen in the coming days, weeks and months.

It was almost too much for me to bear, but bear it I did thanks to the wonderful, loving support of my husband, friends, family and owners of my newspaper back home. These loving people were always there to listen, support, encourage and offer words of comfort when I was at my lowest. I would have been lost without them.

The days that followed were hard and emotionally grueling. Instead of getting better, my son seemed to grow steadily worse. One crisis left him gasping for air, kidneys shutting down, jaundiced and incoherent. And yet, despite all the terrible complications of liver failure, he lived through it. He was strong, the doctors said, and he wanted to live.

Still on Jersey time, I woke at 3:30 a.m. every morning and stood outside our motel room, staring endlessly at the beautiful palm trees silhouetted against the pre-dawn sky that eventually began to brighten hours later. During that quiet and reflective time I searched for answers, screamed silently that this was not fair, cried a million tears and begged God to not let my son die.

During the day I listened to doctors explain over and over that my son’s liver was no longer functioning, his kidneys had failed and he would need a transplant. Their clinical words, so devoid of emotion, left me reeling and unable to understand how they could say such things about my son.

What had we done to deserve this? Even though I muttered these words over and over, I knew the answer. Sometimes this was just the way life went. Most of the time the wheel landed on someone else, but this time it didn’t. This time it was our turn, my son’s turn.

As the days passed, my son’s condition became stable, thanks to miraculous medicine that take over the work of the liver and kidneys, wonderful doctors and a hospital that could not do enough to help. My heart broke, though, as I watched my boy struggle weakly to his feet, clinging shakily to a walker while trying bravely to take a few steps. Turning away so he would not see my tears, I could not help but recall his cautious first steps as a toddler. Was it really that long ago?

To say I was broken by my son’s illness is an understatement. But knowing I had to eventually get back on that plane and go home made it even more heart wrenching. How does a mother leave her son when he is so sick? What mother would, could?

As I wrestled with this, other nagging thoughts plagued me day and night. Questions like what if he died before his name came up on the list for a transplant? What if he had the transplant and his body rejected it? Everything, including whether he would even live long enough to get a transplant depended on so many variables. Too many. But the reality is there are just not enough available donors for the number of recipients waiting.

The statistics are mind numbing for those whose loved ones need a new liver. This year alone more than 17,000 people will need liver transplants, but only between 5,000 and 6,000 will ever get the opportunity to have the surgery. The rest will either continue to wait while medication tries to do the 125 important things a liver does or grow steadily worse and die.

As of July, 114,712 men, women and children currently need life-saving organ transplants, including heart, kidneys, liver and pancreas. Last year there were 28,535 organ transplants performed throughout the country. Far fewer than needed.

But this story is not unique. The need for organs in general is critical.

Every ten minutes another name is added to the national organ transplant waiting list, while an average of 18 people each day die as a result of a lack of available organs for transplant. But these are just numbers.

What about those waiting for transplants and their loved ones? The mothers, fathers, sisters and brothers, wives, husbands, children, extended families and dear friends? Statistics rarely reflect the deep concern, love, pain, and grief they go through.

Despite statistics not in their favor, potential transplant patients and their families continue to hold out hope for a second chance at life. Even though the likelihood of such a transplant is a miracle at best, there is something every healthy person out there can do to help.

The next time you renew your drivers license, think about checking the box on the back of your license. The one that says you want to donate your organs if you should die in an accident. It’s such an easy thing to do and it can save so many lives. Give it some thought, please. There are  so many people out there depending on your decision.

You never know whose life you might save. It could be someone like my son.

Until then I will wake up, put one foot in front of the other and just keep breathing. I have found in these last weeks that we are, after all, incredibly resilient human beings. Somehow we manage to deflect the shock of tragedy, put our faith in God and trust that somehow, even the bleakest situation will all work out.

I have no clue what will happen in the coming weeks and months, but I have discovered there are some amazing “angels” out there. With just a touch, hug or kind word they have let me know that none of us walk alone. Just realizing this makes the journey I am on right now so much easier to bear. That and knowing God never gives us more than we can handle.