No One Said it Was Easy

I read a post this morning that reminded me of a particular experience in my life.

For just over a year in my mid teens, I volunteered on the oncology floor of a children’s hospital.

Upon arrival each Sunday, my job was to open the playroom to the kids on the floor that were able to make the walk down the hall. Usually three or four of them would make it, pulling IV stands behind them and adjusting the masks strapped across their pudgy faces, swollen from steroids. All of the toys in the room were made of hard plastic to withstand the constant washing in bleach solutions in order to prevent the spread of infection. I had to watch carefully to make sure that after any toy was handled, it was carefully sanitized and dried before being returned to the bins or into another child’s waiting hands. You realize how much toddlers change their mind when each decision requires a two-stage sanitization process!

After the playroom was closed for the afternoon, I would pack up a cart with toys, games and puzzles and make my way down the hall to visit with the kids who were too ill to make the trek to the playroom. I would sit beside them on the beds and assist with puzzles or challenge them to a Nintendo game on their TV. With the kids undergoing bone marrow transplants, our visits had to occur through glass panes, the toys left outside for the nurses to carry in.

Although some faces were familiar from week to week, the oncology floor was a revolving door. Some kids were only there periodically for treatment. Others traveled to San Antonio for special care and then went back to their home hospitals. On the good days, the kids would be released with the hope of remission.

And, of course, many never made it out at all.

Those kids, with their scarf-wrapped heads, bloated or emaciated bodies and blistered lips, were powerful. Their bodies may have been broken and frail, but their spirits were stronger than any I’ve ever seen. I would watch them walk down the hall with only the slightest sharp intake of breath to indicate their pain before breaking out in a huge grin at the sign of the playroom.

Many of these kids had never known life without cancer. All they knew was days of pain, some more and some less. They grew skilled at navigating the endless cycle of hope and bad news.

And through it all, they accepted.

The first one shocked me.

“Miss Lisa. I’m not gonna see you next week.”

“Oh, why’s that?”

“I’m gonna get to fly with the angels!” exclaimed the three-year-old girl, her face lighting up and her hands clasped beneath her chin.

I was taken aback. My initial reaction was to deny. Or to become sad. Or to distract her with something else.

But then I looked at her. And decided that I would let her tell me what to do.

“Flying with the angels sounds lovely. What do you think it will be like?”

We chatted for a few more minutes, the girl telling me all about her angels, until her mom came back towards the room. The girl leaned in and whispered, “I can’t talk about the angels when my mom is here. It makes her sad.”

I gave her a hug and left the room. I wasn’t surprised to see her picture on the memory wall the following week.

She was the first, but by no means the last.

“I need to give you an extra-big goodbye today cause this one’s for real.”

“Do you want me to tell the angels ‘hi’ for you?”

“Take care of the other kids for me.”

They were always right.

Each one came from a child between the ages of 2 and about 8. After that, and they reacted more like adults.

I watched those adults too. Often when I entered a room, the parents used that time to take a little break. I would see their posture fall as soon as they passed the threshold of the room’s door as though the strings on their puppet had been suddenly cut. They would sob, letting it out after holding it in for their kid. They would talk with each other and with the doctors, desperately looking for a way to make their kid okay.

But the kid usually was okay. Not physically, but in spirit. They knew when to fight and when it was time to let go. Much like my first experience, many of them would volunteer that they felt they needed to protect their parents and siblings.

“Tell my mommy I’m going to be okay.”

“I’ll have the angels. My mommy won’t have them.”

“Will you give my brother my teddy bear when I’m gone?”

What the kids sensed but had no words for was that they had acceptance. They were not fighting against what could be. What should be. All they knew was what was.

What the kids sensed but had no words for was that their parents were trying to find acceptance. To try to understand why their baby was being taken away so soon. They were fighting against the unfairness of it all. They were mourning the loss of their child and of the person he or she would become.

It was tragic to witness the adults.

So I focused on the kids.

And, in so many ways, their lives were terrible. All too brief and filled with so much hurt.

But they didn’t dwell on that. Didn’t waste energy on saying that it was unfair. They didn’t hold back their giggles or their grins.

Instead, they shared their spirit with each and every person they met. They became the angels here on earth.

During periods of loss and struggle in my own life, I have thought back to those little angels and tried to remember their lessons of peace and acceptance.

To all the families who have lost children due to cancer, my heart goes out to you. I saw your pain but I cannot imagine its depths. I hope you have received the gift of an angel from your child, watching over you to make sure that you’re okay too.

Preventative Medicine

 

There is one question that I am frequently asked that I find difficult to answer.

 

“What advice can you give to others to keep this from happening to them?”

 

I wish I could dispense some nugget of wisdom that would alert to an impending tsunami divorce. I would love to be able to provide a talisman against deception and betrayal. It would be wonderful to give people the security in knowing that if they only said or did certain things that this could not happen to them. I wish I could. But I cannot.

 

There are no guarantees. The cancer of a compulsive liar can metastasize in even the most visibly healthy relationships. There are no guarantees but there are some signs that something wicked may be coming.

 

In my case, I had been with my husband since we were 16. I knew his family. I knew his childhood friends. I was with him as he grew into an adult. I saw him through struggles and triumphs. I thought I knew him as well as it is possible to know another. I was wrong. Just because you knew someone does not mean that you know them.  It is natural to be more alert at the beginning stages of a relationship and then to slowly settle as you develop a comprehensive picture of who your partner is. It is not healthy or beneficial to remain on that higher state of alert for the long haul but that does not mean that one’s eyes should completely close either. We all change. It is important that your mental construct of your partner be flexible to change as well.

 

It was different for Amanda, my husband’s other wife. They married within three months of meeting. She had never been to Atlanta, where he lived, nor met any of his friends and family (their wedding had a couple hundred people – all on her side). That would have been a little too awkward since they all knew me as his long-time wife. He told her stories of great sums of money he was to earn from the sale of a company that he owned (actually, it was his friend’s company, not his) while he maxed out her credit cards. He was ready to leave his established life and move to Uganda with her without hesitation.Perhaps it’s just my insider perspective here, but I see huge warning signs that she could have spotted.

Health
Health (Photo credit: Tax Credits)

I think my answer to prevention can be best thought of by comparing it to physical health.

 

I would like to never face the ravages of cancer. I read research on the disease to educate myself about its known causes. I work to mitigate those causative factors within my life: I eat well, I exercise, I don’t smoke, etc. However, I do not let the fear of a potential disease prevent me from a day in the sun or enjoying a glass of wine. There is balance between knowledge and preventative medicine and continuing to live. I try to find that sweet spot. Regardless of how healthy I try to be, there is no promise that I will never face malignancy. All I can do is try to lower the risk factors and make sure that I am as healthy as possible in case I do have to fight that battle. And, in the meantime, I’m not wearing armor for a war that may never begin.