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.
These are truly great, touching and inspiring words. There is so much to learn from the lives of children..little wonder Christ said in the scriptures; Unless you change and become like little children, you will not enter the kingdom of heaven (attain and achieve true happiness in life).Therefore whoever takes the lowly position of the child is the greatest in the kingdom of heaven.-Matthew 18:3-4.
Thank you. And thank you for sharing the quote from scripture. It’s beautiful as well.
Thanks, God bless you.
Great post! Before I moved to Germany I was a Foster Care Caseworker and I also worked with emotionally disturbed children, before that I worked with at-risk youth in a residential setting. Though it was a tough job, I really enjoyed helping all of those kids, especially during my Foster Care days. I still think about them too, but obviously am not allowed to contact them since I don’t work there anymore. Though there we similarities, you worked with terminally ill children which is undoubtably harder to deal with. The world needs people like you, so if that is your calling, i’m sure you will get to do it again :)
Oh wow, really? That’s so great! I’ve worn a few different hats in my social work career but I always come back to that one. I wish you were right, but I’m not sure that’s possible living in Germany. Who knows, though. Maybe one day. :-)
Beautiful post!! I myself don’t have any experience working with children, so I can only imagine the range of emotions that would go along with working in this sort of environment. And yes, the end results are tragic, but it truly enforces that lesson of “living in the moment” and appreciating what you do have. Great lessons to live by!! :)
Thank you! Yes it definitely does. It kept my life in perspective that’s for sure!
So glad you decided to join the hop this week, and hoping you continue to do so! It’s hard to wrap your mind around what these kids and parents go through, but you pay beautiful tribute to them. My husband’s cousin was an pediatric oncology nurse for awhile. Like you, she LOVED those kids. But after awhile, she just couldn’t keep watching them die. She moved to a different nursing field. It takes a special person to care for those kids and continue to do so year after year.
Thank you so much! It is hard work and the nurses have it even harder I think. I definitely would like to link up again and will be checking out your blog more. I just read your piece about white picket fences and loved it!
Thanks for stopping by and reading!
Beautiful! I imagine that would be one of the ultimate learning experiences working with kids like that.
Thank you! Yes I think you’re right. They taught me more than I could’ve ever hoped to teach them. ❤️
Thanks for stopping by!
I’m a big fan of Emily’s too, and her co-host this week, subbing for her partner in arms, Kelly (Are you Finished Yet)… they do such an incredible job with this weekly hop, and it’s fantastic that you decided to join! I’ll warn you, it can be addictive. ;-) I have just finished my hospice training (I have my MSW, but don’t practice anymore) and agree completely, there is SO much to learn from the dying… and children have so much more to teach us than we understand. What meaningful, special work you were doing. Thank you so much for sharing this wonderful story! Danke!
Hi! Thank you for your nice words and for stopping by! I have my MSW too but not sure I will really get to use it anymore. But one can hope! Sounds like you will be doing incredible work as well. :-)
I have found that whether or not you’re using it “professionally,” you will in fact use it. Parenting, life… so many things will call upon the skills you’ve honed. Trust me. ;-)
Beautiful post. You have such a big heart! I have to say I am afraid to work with terminally ill children because I get too emotionally attached easily and I may just break down each time somebody goes. :(
Thank you. To be honest, I’m not sure how I’d do now that I have my own child but crying is okay. It’s therapeutic and it happens when you care. So it’s pretty much inevitable. :-)
Deanna, this was fantastic, the kind of writing I feel extremely full and warm after reading. I am positive that the children you served gleaned just as much inspiration and strength from you as you did from them. What a joy to have the kind of heart that yearns to serve these precious souls!
Thank you Emily! I’m so glad you enjoyed it. I do really love those kids. Hopefully I’ll get to do it again someday!
This was absolutely beautiful. It reminds me of the movie My Sisters Keeper. I thought I knew what was going to happen in that movie and I really didn’t, but when I read your words, an image of that young girl went through my mind. Sounds like you had such a wonderful experience. Children are definitely great teachers for us as adults in so many ways. Thank you so much for sharing this with us on Countdown in Style. Don’t forget to come back on Friday to see if you are featured! xo
Thank you and yes, children are amazing teachers. Living or dying they always remind us how previous life is.
Hi, I’m from the RTT blog hop too, nice to “meet” you! I hear you, too. As a pediatric occupational therapist I’m blessed with many heart-wrenching, soul-inspiring, mind-blowing kids and their families every day. You’re so right, “if spirit alone could cure their disease, there wouldn’t be loss.”
Hi! Thanks for stopping by and taking the time to read and comment! They are just amazing kids…in general I think the world could learn a lot from kids. :-)
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I spent a summer working with children with disabilities and illness at a camp. It was the best summer of my life. I will never forget the time I shared with them, their hopefulness and eagerness to learn and play. I learned so much from those children. Thank you for sharing. This was absolutely beautiful.
They are just amazing and their bright spirit that comes from their innocence is so beautiful. I would give so much to be able to do that work again.
An incredible, profound look at a world I’ve rarely seen before. I have a friend who was a nurse in a paediatric intensive care ward, and some of the tales she told were harrowing, especially of the grief-stricken families who tried to sue staff members after the children had died, presumably from anger at the loss, and the need to lash out - to somehow justify their child’s death, for surely, surely nothing so terrible could just…happen - there had to be someone responsible: someone to blame.
I’m glad you found such strength and beauty in these youngsters. I’m sure you will have been a strong source of light and support for them and their families. This was heartbreakingly beautiful and I thoroughly enjoyed reading it, and learning more about you.
I haven’t seen too much of parents wanting to sue in my experience and I’m glad for that. I have worked with many, many abuse cases and dealing with those parents is very difficult. I enjoy that work as well, but I’m not sure I could be as level-headed now that I have my own child.
I hope I was. I know one of the girls that I lost, a former colleague ran into her mother recently and she asked about me. It’s been 6 years and she remembers me. That alone means the world to me.
That level of care and the memory from that mother - that makes it worthwhile.
When I was working with children, I dealt with a couple of cases of abuse. Fortunately not hospital level ones, but harrowing and tragic nonetheless. The thing I remember most is the feeling of absolute powerlessness to help once Social Services got their hobnail boots into things. *sigh*
Oh, Deanna. I’m so thankful for the view you’ve given me on this. That there is empowerment and choice in the midst of tragedy, that these small people understand what it means to truly own themselves (more than many adults ever will)… thank you for putting that into my mind. You’re a wonderful individual.
Aww, thank you Jennie. There is definitely empowerment. I can’t share the whole story obviously, but I was able to watch an 12 y/o gain the courage to stand in a room full of doctors, nurses, myself and other social workers as well as her family and tell them she was ready to stop treatment and in fact, demanded it. She knew the disease was beyond control, she was tired and she was ready to die. It’s sounds so tragic, and it was, but it was also so beautiful to see her own herself, take control and be so brave on front of so many adults. It brought her mother to her knees, but we all knew it was the right decision. In the end, she thanked me for giving her the strength and I told her she was the strong one and I would forever remember that moment.
It takes a very special person to do what you did, and to actually wish you could have had more time doing it.
My brother put his whole heart into working with terminally ill children, but he would never go back to it. He found it too gutwrenching.
Thank you for this post. It puts a beautiful spin on otherwise tragic circumstances.
It can surely be difficult. I didn’t have children then so I often wonder how strong my boundaries would be now, but I definitely miss it. Thank you sweet, SW.
Having my own children, I too…can’t even imagine. But I do know what you mean. I worked at a hospital in college and had the privilege to get to know some of the patients who spent a lot of time there, and the pediatric patients were the absolute best. My favorite thing was to get to work early to play video games with the boys. The spirit that you mentioned…if only it could cure, there would be no loss. That is so true. You are such a blessing to this world, and more people should strive to be like you.
Wow, Mandi, that was very kind of you to say something like that. The irony of it all was that I never intended to work with children when I began my social work education and definitely not in the medical sense. I fell into it and loved it ever sense. Life has a funny way of doing that. I miss it like crazy some days even to the point of being sad about it, but now life has thrown me down the path of writing. And now this new path feels like one I should’ve been on all along.
I have heard this before that there is a strength and beauty that resonates from a child with a terminal illness that touches those around them. I am so glad they had someone like you to share their love with, someone who put it in a safe place to inspire others.
There really is and it’s an amazing sight. Thank you.
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Non, mais, Je parle Francais (un peu) Just enough to get me into trouble.
I can certainly relate, although second hand. My GF works at St Jude. She knows.
When I was working in Iraq building water treatment plants for the small villages, the most endearing sights were of the young children having clean water for the first time in their lives.
Your words are wonderful, as are your actions.
Oh wow…..working at St. Jude must be so tragic yet so amazing. What a privilege. And I can only imagine what that must have been like, seeing children receive something we take for granted all the time. Sounds like you are both wonderful as well. Thanks for reading.
We are kin (dred)
Deanna, what an opportunity. I can imagine the heartbreak but also the joy those children and their tenacity bring. Sometimes inspiration comes from places we least expect, I guess.
It definitely does. I kind of fell into medical social work and it turned out to be so difficult, but incredibly rewarding. Now, life has forced me onto a different path and I can only hope to someday look back and be just as thankful.
“As adults, we tend to underestimate the strength in children.”
Illuminating. Thanks for sharing. I can imagine how inspiring the children are.
Thank you for reading and glad you found something in my words to be illuminating.
Working with these children would certainly put things into perspective, I would imagine. I am beside myself with anxiety when my kids get the flu so I cannot imagine the fear, the anxiety, any of the emotions of a parent that knows they will lose their child to an illness. These little warriors are indeed heroes and I can tell you find it a privilege to have been able to share a part of their lives. Beautiful post!