Do you have a “memorable” Christmas you’ll never forget?
Christmas 2016 was for me. Not because it was wonderful. It was by far my worst Christmas ever. But it changed the way I look at that beautiful season going forward. Actually, it’s changed the way I approach every single day.
I received a gift I wasn’t expecting. The gift of “entering the heart of wisdom.”
THE DIAGNOSIS
Near the beginning of December of that year, I went to a long awaited appointment with a rheumatologist.
Through tons of research during my wait, I had stumbled across Ehlers Danlos Syndrome (EDS). I was positive that’s what was going on. EDS wouldn’t just explain what was happening to me at the time. It would make all my childhood health issues make sense too.
I wasn’t too stressed about it. I understood it meant a life of pain, but I had already been secretly doing that for many years. An explanation as to why would be good, validating my bizarre health issues. So I was pretty mentally prepared for an EDS diagnosis.
Sure enough, that’s what happened. She was dumbfounded no one had mentioned connective tissue disorders to me before. To her, it was as obvious as the sun in the sky. She told me,
“You have EDS, Marfan, same thing.” And she shrugged her shoulders as if there was no difference.
Interesting. I hadn’t come across Marfan in my research. I went home to investigate.
IT’S NOT THE SAME!
Even among specialists, connective tissue disorders are not well known or understood. As I started to read about Marfan, I didn’t understand how she could casually lump EDS and Marfan together.
I could definitely see why the rheumatologist mentioned it. I had the physical characteristics for sure— long legs compared to my body, super long fingers, my wingspan is longer than my height, I can wrap my pinky and thumb right around my wrist till they overlap, I have deformities in some of my bones.
But what I was not expecting hit me one day when I stumbled across a chart following people with Marfan and how long they lived. Or more accurately, didn’t!
If I had Marfan and this chart was correct, I was at the end of my lifespan.
As “prepared” as I thought it was for an EDS diagnosis, it was still hard to deal with. My husband was working away and I didn’t really know who to talk to about it.
Dying in the very near future? And there was nothing I could do about it but just wait for it?
I went into a tailspin. My thoughts were plagued about dying prematurely. I was constantly bursting into tears. I desperately tried to not let my boys see but they caught me a few times. I couldn’t imagine not being here for them. Or for my husband.
Each day we inched closer to Christmas, the worse my inner turmoil became. Christmas is my favourite time of year, but it didn’t bring me out of these dark thoughts.
What if this was my last Christmas? According to that chart and how horribly sick I felt at the time, it very well could be. And my husband had to be away for it.
Christmas Day was unbearable. The boys and I opened gifts. I kept it together for that, but I secretly cried on and off for the rest of the day.
In the afternoon, the boys took off to go sledding at my parents. I promised crepes would be ready when they got home.
I was relieved for a chance to cry openly.
The measuring and mixing took my mind off things for a while. But as I stood waiting to flip crepes, the darkness returned.
As my dismal thoughts swirled, the weeping began.
What if this was the last time I made crepes for my family at Christmas?
I knew I had to put a stop to this. Tears splashed on laminate in front of my stove.
And then I just decided to be present. To be thankful for THIS moment.
To stop the morbid, intrusive thoughts, I whispered my gratitude out loud.
“Thank you God that I get to make crepes for my family today. Thank you for THIS Christmas.”
A peace swept over me. My eyes dried. The heaviness surrounding my heart began to lift.
And then the boys came barreling into the house to regale me with their sledding stories. Now it felt more like Christmas.
THE HEART OF WISDOM
The truth is any moment can be our last. We are not promised tomorrow. We are not promised health and happiness.
But as morbid as considering our eventual deaths may seem, God’s word says that knowing how short our lives are helps us enter the heart of wisdom.
I like the Aramaic Bible in English version best:
Psalm 90:12
Teach us to number our days that we may enter the heart of wisdom.
I may have won one battle while flipping crepes, but my wrestling with this wasn’t over. Over the next few weeks after that, battle by battle, God took me through a process. A process of surrender where I had to relinquish everything.
My hopes.
My expectations.
My health.
My dreams.
My family.
My very life.
It truly became “well with my soul” if my life wasn’t going to be much longer.
These last few years have also been lessons in being grateful for things I used to take for granted. I’ve posted about how incredibly bad my shoulder has been. I couldn’t even scramble fry meat without crying. Through supplements and specific exercises, it’s doing soooo much better. But no joke, I whisper a prayer of gratitude to God EVERY time I scramble fry meat because it’s no longer excruciating.
I mentally thank God when I wake up and my shoulder wasn’t out of place all night.
Through all these mental and physical battles God is helping me enter the heart of wisdom.
What have you been taking for granted? Your time? Your health?
I encourage you to look at your life differently. Are you living it from the heart of wisdom? I pray that you do.
P.S. — A later visit with a geneticist revealed I don’t have Marfan. But I’m still living from “the heart of wisdom” lessons I learned thinking that I did. ❤️