For the past two years I have hosted an online chat room for kids with chronic and terminal illness. I love my job and am extremely lucky to have the opportunity to chat daily with some of the most inspiring human beings on the planet. Some of my kids have passed away and some of them have fought their illnesses against the odds. They have healed themselves with the power of their courage, optimism and faith. Their stories are beautiful, a testament to the human spirit and the power of love.Some of the children in the chat room have rare illnesses that paralyze them, keep them bed-ridden, have no cure. Many of them were born with HIV, Cystic Fibrosis, Cerebral Palsy. Many have Cancer. Recently I have grown close to one girl in particular. She has been in and out of the hospital for several years and has the rare form of chromosome-defective Leukemia. Her sister died from the same disease ten years ago and her mother has lived in and out of hospitals with both daughters all the while. She flies from Los Angeles (where her family lives) to St. Jude hospital and back, weekly. I have never met this mother. I have only heard her story through her daughter, who is sick and who I chat with. Today she got some bad news and her mother was a basketcase. The girl told me that she wanted her mother to feel better so she fixed her a bed in her hospital room and warned the nurses to stay away so she could sleep. The image in my head overwhelmed me. Little girl in hospital bed, taking care of her mother. I started to cry.
When I asked her how she was feeling, she said that she was okay with whatever happened to her. She was as fearless as all of the children I have met, embracing death and the idea of mortality with the kind of wisdom adults are not capable of. "The only thing that worries me is my mother. I keep fighting for her."
As a parent I can't imagine what it would feel like to lose a child. I cannot imagine how it would feel to lose a child and then hear bad news about your second. What struck me most about our conversation was the love this girl had for her mother. She did not take it for granted like most teenagers. "My mom is the coolest mom in the world. I am so lucky," she said. And she is lucky. So many of the children I have met are not. Loving parents are hard to come by these days. It's amazing how many sick children do not have the love and support they need. It breaks my heart. It makes me fucking scream.
I don't know where I'm going with this post. Maybe to remind myself and all who read here that with all the technology and advancements in medicine, health is still something to be grateful for.
Hug your babies tight.
GGC
16 comments:
My sister is a pediactric ongology nurse so she sees a lot of the stuff you are talking about. It breaks my hear to hear some of the stories that she tells about work. It seems to me that kids that have things like that happen to them have a little something extra special about them that allows them to deal with the hardships with such grace. My son has been through so much with his heart defect and yet he is the most loving and forgiving child. He will get shots and seconds later he will try and give the person that gave him the shot a hug. It amazes me how trusting he is.
This brings back so many memories. I also remember being in chat when I was on treatment while you were hosting and you always made me smile. I love those kids to pieces and you too! I'm glad I met you. =)
I hear ya. I think about this stuff a lot, and I don't even do what you do for a living. Scary stuff, parenting.
Man, this post killed me, GGC. Brought back a lot of sad memories of my cousin losing a battle with leukemia when we were both 12 years old. He was amazingly stoic throughout the whole ordeal. Kids are amazing.
Excuse me while I go hug mine.
What a beautiful story.
You may want to consider linking to your organization - you guys are doing great work, and you never know, someone out there may want to help.
I was moved by your blog. What a wonderful opportunity to be involved with these children! My niece has CF, she is four years old. She goes through 3 hours of treatment a day, and a feeding tube at night. She is wise beyond her years. My sister is unbelievable as well. I am in awe when I watch her parent throughout the day. She is a pediatrician, who now spends her day raising her three little ones. For she knows how precious life is.
Thank you!
P.S. Love your dad's sense of humor, mom too!
You're right, RH. I will go back and add a link. Organization is called Starlight, Starbright:www.starlight.org.
Thanks for sharing your stories.
I'm just about to walk out the door and was just checking a few last minute things online. I came here and now I don't want to leave. I feel so bad! You're right though ~ some kids are unfortunate enough to have crappy parents. One thing I pride myself on is being a caring, patient mom and I want to thank you for reminding me that it's all I need to be right now.
This post brought tears to my eyes. That's not an easy thing to do. You may not have known where this post was going, but I think we, your readers, know very well. Straight to the heart.
Thanks for the beautiful reminder that life, and our children, are sacred gifts.
Thanks so much for posting this. what a tough job for you and what a tough life for the kids, parents, everyone involved. I've met some truly inspirational ones in my line of work, too, and it just makes you appreciate parents even more.
My friend (a music therapist) did this cd - all proceeds go to charity:
http://www.cdbaby.com/cd/sarahperry
All the songs are written by kids with various illnesses.
Oh wow, Kristen. Thanks for the tip!
it's wonderful that people like you are making a difference and helping others. children in need, whether it be of a home, of food, of safety, of love, of health, or any other thing we may take for granted, breaks my heart as well. hopefully i'll be able to make a difference one of these days, too.
you have made an amazing addition to my day with this post. it is remarkable how giving a child like this is in light of their own burden.
Thanks so much for this post, and thanks for the work that you do.
My nephew is dying of/living with Duchenne's Muscular Dystrophy, for which there is no cure. I posted about him recently on my blog (The Heart is a Muscle), and then immediately felt mixed about it because, well, talking about dying children is a bit of a downer for any parent. But I felt that it was important, because, first, if it got even one person to follow the link and find out more about the disease and how to help kids, then great, and secondly, because it never hurts to give parents more reasons to - as you put it - hug their babies. Hard.
And finally, I guess, to put out there what you put out in this post - that those kids are miraculous, brilliant, life-affirming beings who we can and should all learn from.
Again, thanks.
Beautiful post. I couldn't read on without saying thank you for sharing.
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