Musings of a Marfan Mom

Death

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The past few days have been pretty rough; I’ve had 3 people I was close to pass away suddenly, 2 of who had Marfan. Having a chronic, potentially life-threatening genetic disorder taught me the harsh realities of death early on in life. I’ve put myself in a line of work where I’m more apt to experience loss, just because I’ve come to know and love many more “Marfs” than the average one of us, but death isn’t something I’ll ever get used to.

On March 6th I got word that one of the teens I worked with at conference, Erin, had died. I had spent a fair amount of time with her that long weekend and come to appreciate her tell-it-like-it-is demeanor and sense of humor. She had a maturity beyond that of even many of the older teens and understood her physical limitations but didn’t let them define her. I volunteered to write the obituary email to the other kids to let them know of her passing, and it was one of the hardest things I’ve had to do in awhile. It just doesn’t seem fair that kids should have to die.

Last night I came home from a fun day at the aquarium with mom, Menininho, my friend Kathleen and her boyfriend Mike, to an email letting me know that my friend Brandon had died. I met Brandon in the network group for people with Marfan that I ran back in Columbus. He wasn’t much older than me and his wife was pregnant at the same time I was. They welcomed a son just before Thanksgiving, then Brandon had heart surgery 2 weeks later. Everything seemed to be going well, but he developed complications and passed away a few days ago. I still can’t believe that he’s gone, when he seemed so healthy. I still have the emails and pictures he sent after his son was born and post-surgery. It breaks my heart to know his little boy will have to grow up without his daddy.

Then, this morning I received a message from my brother Matt that our family’s friend, Jack, died in his sleep last night. We’ve known Jack and his family since my brother was in 1st grade. Matt dated Jack’s eldest daughter for a while before he left on his mission. Jack was a pillar in our community and very good to Matt, even after he and Kate broke up.

So, as you might imagine, I’ve been thinking a lot about the fragility of life. After read the email about Brandon’s death and began to cry, my mother gently suggested, “Perhaps it’s time for you to get a new line of work.” I suppose I disagree. While losing friends is at time impossibly hard, I’m better for having known each one of them and I wouldn’t trade the good memories for a lack of pain.

I am also really grateful that I know families can be eternal. We all come to this earth with missions to fulfill, and our lives don’t end when we die. I know I will see Erin, Brandon, and Jack again someday, just as I’ll get to see my Grampa and my dad. It’s that knowledge that brings me comfort in these times of pain.

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  1. this is very touching!

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  2. So very sorry to hear about your losses, Maya. We shall add you to our prayer list, although I’m confident your spiritual foundation is strong and you’ve uncovered the truths that so often accompany tragedy, just like you always do.Love, Fi

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  3. I am so sorry Maya. I love the truths of the gosple and the comfort they bring with it. Call me if you need anything.

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