First, my most sincere condolences on the diagnosis of your child. Second, hold on to your to hat, your heart, your mind, and most of all, get ready for the ride of your life. You will no longer see life as expendable, and you will never be able to go back to a time when the candles of a birthday cake mean looking forward with hope or with an eager anticipation of joyous beginnings.
I know because, like you, I was once the parent of a child who was newly diagnosed with an incurable disease. The most honest advice I can give is this: Let the dishes pile up in the sink (though mold is just plain gross) and let the fresh air in, because there is no time like the present to enjoy your child's laughter and smell his or her skin. Kick your shoes off, eat popcorn in bed, then have a good hard cry. First for your child, then for yourself. Honestly, not only is your child's life ending, but your lifetime dreams have just been "put to sail", so to speak. Feel sorry for yourself, because you deserve it. Then get up, and make the most of the incredible life lesson that you have just received. It's called, "Life is Short." You will never, ever, take a day or an hour with your child or any other loved one, for granted again. Trust me, there are millions of drugs sold every day to people who are filled with a life lacking gratitude or an appreciation for those around them. You will not be in line for those, though at times you will feel like you need some sort of pharmaceutical assistance to get through the day. Shockingly, you probably will not need them because your drive to protect and love your child will act as a drug itself.
Most important, listen to your gut, your intuition. You know what I'm talking about. Some of you already knew before you were told by your child's physician, that you were in deep, deep "doo-doo" as they say, when it came to the topic of your child's health. On those days when you look into your child's eyes, and you "know" something is wrong, listen. No one knows your child as well as you do. You have probably been "connected" way before the moment of his/her diagnosis, so trust your intuition and take seriously your role as your child's advocate, mouthpiece, and protector.
Finally, remember that you are loved by a community that is by far larger than you can possibly imagine at this moment. The "club" of parents who have had sick kids is many and we are mighty. We may not carry on our backs a placard that says "mother of dying or dead child", but we are there and we love you though we don't know you. We are in line at the grocery store and the mall. We are in the elevator, at the gas station, and on airplanes sitting next to you. We ache for you and somehow, we know of your unspeakable burden.
Reach out for help sometimes when it seems completely ridiculous or terrifying to do so. You never know who will standing beside you. It may even be me.
Blessings as you continue your journey,
Dianne Gray Dianne Gray is President of Hospice and Healthcare Communications, a company committed to improving and creating quality hospice and palliative care programming globally.
Dianne is a nationally recognized, award winning writer and speaker who presents on the topics of medical ethical decision making, opioid use in pediatrics and physician/family communication. She is also a bereaved parent. Her 14 year old son, Austin died in 2005 following a lengthy battle with a neurodegenerative brain disease. Dianne serves on the boards of Children's Hospice and Palliative Care Coalition, the Elisabeth Kubler-Ross Foundation, and CHiPPs, the Childrens Project for Palliative and Hospice Services, an advisory council for NHPCO. As well, Dianne loves to travel the globe and enjoys meeting people wherever she goes! You may contact her at: firstname.lastname@example.org
I find hope in the unexpected. Sounds trite, but its true. When I was told by nurses and doctors alike that we were "at the end" that "today is the day" "this is the hour" and it wasn't (four times), I find hope in the fact that I can't possibly know everything and that some things are way beyond explanation. I remember how I would giggle with amazement when my terminally ill paralyzed son found a way to move one foot after not moving a single part of his body for at least ten months! I find hope in the fact that I will NEVER know who I will meet, who will unlock something in my heart, who will challenge me, who will amaze me unexpectedly.
I remember watching the Disney movie, Pocahontas with my then alive son, Austin, and my first grade daughter, Christina. The song we heard was "Just Around The River Bend" and it drove home the point that we never know what is around the bend. It reminded me that if we persevere, paddle on, that we never know what magic could appear out of nowhere....that choices need to be made, life can be tumultuous, but it CAN be okay.
With that said, yes, my son did die, and yes, I feel some days that I will never ever be able to cry out all of the tears that dwell in this heart that seems to have no bottom to it. Then I tell you, out of nowhere, I have three business successes in 24 hours and I hear from two very important people in my heart .. and I feel as though, well, it might just be okay....if even for today. So where do I find hope? In the fact that I while I am shoulder to shoulder with death, I am also reminded daily of the most joyous occurrences in life....even when I'm not looking for it.
Ha... no laughing matter BUT... I first heard about palliative care long after my son, Austin, died in Feb. 2005. No kidding. The phrase "palliative care" didn't cross my path until 2008. It's ridiculous, actually.
However, the methodology behind palliative care was a part of our care plan the entire time, I just didn't know it. The goal was simply: do the best we can (hospice, family, friends, nurses, teachers, and community at large), while we can, for as long as we can. It is not a complicated concept, but complicated in practice.
I wish I would have known that palliative care was essential because no one dies "on time." When disease is present, death is a process (versus death due to an accident, for example.) I've learned it's just plain hard work to die! The spirit and body inherently fight to survive. Palliative care makes that living while dying process so much more enjoyable for everyone: the patient, the family, the friends...those that will long outlive the dying loved one. If life is made wondrous by creating memories, don't we want those memories to be happy? Palliative care, when done well, allows all involved, to savor those remaining moments with joy and less suffering. It's really that simple.
The most honest answer for me, was to step away from the treatment and from him on occasion. I couldn't do it for long, but by remembering to breathe the rest of life in, I could take a look around at the other kids in the neighborhood who were laughing and playing, doing all of those things that he "should" be doing if he was healthy. Then, by going back into his room, I could see the "spirit" of Austin, not just the "unhealthy body" of my son. His spirit needed to laugh and play, even if his body was unable to.
Then it became more about my creativity at either bringing friends and life in, or bringing Austin to life outside of his room! Laughter and love could take place no matter what environment we were in and I needed to remember that!
However, when his quality of life became so filled with pain and suffering, it was time to momentarily step away again so that I could view his situation with the lens of reality, looking to see that he truly was suffering greatly...and again, we needed to adjust our lives accordingly, making extraordinarily=2 0difficult decisions in the process.
Overall, I would say our quality of care ran the gamut from the absurd to the sublime. I have found that is true for many families and patients. Though my son had a rare, undiagnosed condition when he was two, our pediatrician told me I was an over reactive first time mom and to "take him out of his Keds" as they had rounded bottoms. Yet on the other extreme, I found the pediatric subspecialists to be amongst the most caring and attentive in the world, overall. They usually asked what "mom" felt and listened attentively. One orthopedic specialist even came to our house after trick or treating with his nephews, to set Austin's leg following a fractured femur that occured during a muscle spasm. We were so blessed in many ways. As for what could've been improved upon? The waiting room. Simple as that. Most of our kids with chronic or terminal illness simply shouldn't be around kids who have the flu or other types of illnesses.
While those kids would get well, our "very sick kids" would spiral for weeks following a simple cold. It was brutal.
With that said though, bless those most of those physicians who work at children's hospitals. They have been a Godsend.