Have you heard of Emily who is the author of the blog, The Waiting? If not, you have been missing out. She is witty, funny, down-to-earth and presents a style and charm through her online presence like no other. She is an excellent writer and has the credentials to prove it.
Well, once a week she hosts a link-up called “Remember the Time” with each week having a different theme. I have never joined in and I’m not sure why since I am such a big admirer of hers. This week’s theme is last days and it really got me thinking so I decided to join in.
Once upon a time, in my pretty distant past, I had the blessing and opportunity to work with children who had both chronic and terminal illness. The diagnosis could range from behavior issues such as Attention Deficit Disorder or Oppositional Defiance Disorder to seizure disorders and cancer. I started on this path in 2007 before I knew I would move to Germany for the first time in the early part of 2008. Sadly, I was only able to work with these amazing children for approximately 9 months. It was the best 9 months of my social work career. Granted, I loved working in the hospital and that too was both hard and wonderful work, but working with these kids on a regular basis is inspiring and not just in the moment, but for a lifetime.
Hardly a day goes by where I don’t remember the children that I came to know, but most importantly, the ones that I lost. People are typically shocked when I say how much I love working with terminally ill children. I’m sure you are shocked just reading that statement. It couldn’t be more selfish or more true. And here’s why: those kids are AMAZING.
As adults, we tend to underestimate the strength in children. We see them as innocent, beautiful creatures who also lack the life experience to make big, bold decisions. It’s in our nature to want to protect them, to shield them from the nasty evil in the world. So what do you do when your child is diagnosed with a terminal illness? More importantly, what do you do when you know your child is dying? It’s an unfathomable question, I know. Having my own child, I can’t even begin to think about it without my stomach doing all sorts of flips and being on the brink of tears. But it happens and these poor families struck with this tragedy have to deal with it.
So you’re probably still wondering how in the world I could enjoy such heart-wrenching work? Well, like I said, these kids are amazing. They have a spirit like no other and if spirit alone could cure their disease, there wouldn’t be loss. They fight the hardest fight anyone could have and they do it with smiles. They are still children and show it through the hope in their eyes, but they become so wise in a short time. They understand their illness and they know when they are ready to stop fighting. But until then, they will make lemonade out of lemons.
They will decorate their hospital rooms for Christmas. They will go trick-or-treating in their hospital ward. They will play games and laugh. They will remind you how precious life is and how much is taken for granted.
Of course there are bad times when they wonder what it’s like to die. When they realize they will never get married or have children. When they know their disease is winning and they are just tired. When they cry the tears of a child who just wants to be a “normal kid”. Those days are brutal, sad, heart-wrenching.
There aren’t enough words to describe the pain.
There aren’t enough words to describe how inspiring they are to others.
No words can accurately describe their hope, their dreams, their love.
In the end, these children accept their fate and their only concern is their loved ones. They become the protectors. They become the strength as their family is brought to their knees in despair. They become their own voice in telling the doctors to stop treatment. They become empowered. In the end, they get to have that last bit of control over their beautiful short life.
It’s like nothing I have ever experienced and I feel so privileged that I was ever allowed to share those moments in a child’s life. They are my heroes, my inspiration, my hope. They aren’t here anymore and I am not there, but they have never, never left my heart. They changed me just as I’m sure they changed everyone they met.
They are angels here on Earth.