“I feel better right now than I did this morning and that is what I am going to appreciate. I have my son, husband and cat right here on the couch with me. Bella (daughter) is off, happy with a friend for an overnight, and life is good. People all over are holding us up in lots of different ways…it is wonderful and not to be underestimated.” — Lisa Waller Hayes, May 21, 2010
My friend Lisa used CaringBridge to send that message to her friends and family 5 years ago.
Lisa really, really, needed CaringBridge because when she was diagnosed with pancreatic cancer, at 45, she only had a few months to live. She had two beautiful children, an ideal partner in her husband, an interesting career writing about women’s health issues, and a life abroad that she had dreamed of.
Life was good. Dying young was not.
Thanks to CaringBridge, Lisa was able to connect with friends and family all over the world with honesty, efficiency and words. Her time was short from diagnosis to dying – just four months – so she needed to be extremely judicious with every hour.
The To Do List
There was no time to shove a few items to the bottom of the to do list for “later.”
The top of the list read:
- Reconcile yourself to dying in a few months
- Explain this to your kids
- Get them ready for life without you
- Try not to feel too guilty about leaving your beloved husband
There’s no handbook for this fate. You do the best you can, and if you are very lucky, you have an amazing family and the resources to deal with the unthinkable. Lisa had those, even a sister who was her best friend.
CaringBridge connected Lisa with her community of support – the family and friends who cared about her and wanted to support her through this difficult time.
But something that could have helped a lot was missing. Many online resources help people deal with specific diseases. But we could not find a website for mothers who are facing a terminal diagnosis to connect with each other. The immediacy of a website was critical, because sometimes, like in Lisa’s situation, there is no time for books, and the demands on your motherhood require new ideas, now.
A Place for Moms to Connect
About a year after Lisa was gone, I decided to make the website she was looking for.
To create MomAlways.org, I interviewed a wide range of experts and clergy. I found the leading thinkers on early childhood, tween and teen growth and grief counselors. The site also features a Catholic priest, a Jewish rabbi, a Zen hospice worker and a Christian counselor.
The goal was to create a website where a mom could read many ideas from a range of perspectives and start to put together a story to tell her children about why this is happening.
Humans like stories that make sense, add up or have a lesson. The story of a mommy dying is never that simple; it fundamentally doesn’t make sense. The ideas on MomAlways can help a mother make choices about how to begin to explain the facts and feelings around this unfair and inevitable loss.
Listening to these experts and distilling their thoughts, I learned a lot.
One insight: the relationship continues, even after someone dies. Less obvious: if a child is still so young when the mother is dying that he doesn’t even talk yet, use words any way. Say I love you over and over. When the words do have meaning, there will be a memory.
Over the past three years, thousands of people from all over the world have come to MomAlways.org for insights and advice. This year, marking five years since Lisa died, we opened a private, password-protected chatroom just for mothers facing a terminal diagnosis.
No one in the world could know exactly what it feels like to be leaving your kids too soon, except another mother facing the same reality.
I know Lisa did not want to burden her beloved sister, even, with some of her worries and fears. Mothers who face this harshest of realities deserve an opportunity to connect with other moms in the same situation – a safe space to share their feelings, let down their guard, find friends. When and if they want to, MomAlways.org is there.