Raising a terminal kiddo is f*&king hard!!

Yes in all the obvious ways but also in so many ways that no one can prepare you for. The piece I wasn’t ready for was the grief that would set in, a deep rooted ache I had never felt before.  A grief that ebbs and flows and sometimes is so painful you're not sure you can handle it.  This grief is sadness over what is to come and grieving what will never be.  

We call it anticipatory grief, It is present when you are caring for or love someone who is ill.  It’s a dance you have no choice but to learn, this is not a public grief, it is pain that is hidden.  It is tears that come when it’s quiet and everyone is sleeping, tears in the shower or in the car on a solo ride home in the dark.  

It comes with pressure, pressure to make the most of your time and not to let the grief take away any of the joy or potential memories that you do have. It’s one of the emotions you wish you could ignore, that you want to bury deep down and pretend it’s not there.  To keep it locked up so that it doesn’t affect your ability to love and cherish the one you're caring for, but Grief is too big to be contained, it needs to be acknowledged and felt, it can’t be ignored.  

Before I knew what anticipatory grief was I would beat myself up, thinking I was failing at life, I thought I was lazy and depressed.  I would try my best to pretend that everything was okay and to not waste one moment, to suppress the hard emotions so they wouldn’t interfere with our joy.  Time was not on our side and I didn’t want to waste one second.  But that was not realistic, my soul wouldn’t have it and would force me to bed.  It took me a long time to learn that grief had set in.   What I know now is that I am sad, I am mourning my child while she is right beside me.  Let that sink in a moment, how can any parent expect to go on as normal with that in their heart.  

Having grief in no way means you have given up hope, that is the thing about grief in general, it lives together with hope.  It co exists with all the other emotions, off to the side but still very present even in times of great joy and happiness.  

“Grief can’t be shared.  Everyone carries it alone; his own burden in his own way”

• Anne Morrow Lindbergh

If you are experiencing grief please know you are not alone!  One of the best things I did was find a community of people in my area that were also raising terminally ill kiddos.  We now meet once a month and it is so nourishing for my soul, with this group of people I don’t have to explain myself, they are already familiar with the pain.

Another thing that has been instrumental in levelling out the ups and downs is working on my own knowledge and familiarity with my emotions.  To really lean into what I am feeling and to acknowledge it.  Here are some of my favorite comfort items and books to help with this journey!