Life Out of Order

There's an order to this thing we call "life."  It's the way it's "supposed" to go. 

As kids, we watch our great-grandparents, or sometimes grandparents grow older, weaker, needing more help.  Our parents are strong, in charge, know everything (okay, until we're teens anyway). 

I remember coming home from school one day and finding my mom curled up in her rocking chair, crying.  She'd gotten a phone call saying that her grandma, my great-grandma, had died that day.  I knew her, but not that well, and felt a little sad and kinda awkward.

A couple years later, as I got up to go to school, my mom came and wrapped her arms around me to tell me that my grandma, my dad's mom, had just passed away.  That was harder.  It felt wrong, the day felt colorless and strange because time should have stopped, but no one else at school seemed to even realize that the world had changed. 

The years go on.  My other grandparents also passed, although my children knew two of them.  My mother-in-law no longer drives.  When I talk to Mom, I hear Nana's voice.  My father's hands have been replaced by my grandpa's.  It's strange to see them on my father, but that's the way things go.

My children are growing and grown.  I have an adorable granddaughter.  Now I'm the one getting older, and worrying about my parents and my mother-in-law.  I'm the grandma.  And this is how things are supposed to be.

Adult children bury their grandparents and parents, and eras end, and it hurts, but life goes on.  Babies are born.  Old people die.  The Circle of Life.

But sometimes it's not that way.  Not always.  Not nearly enough.  And I'm still trying to figure out how to process it.  I'm at the point where I'm about to throw in the towel and cry that it's just not fair.  It never will be.  And there's nothing I can do about it.

We special needs moms are scary.  Honestly.  Other moms are afraid of us. It's almost like our life is contagious.  Our children die.  They don't grow up.  And it feels so, so wrong.  And in the fierce way moms have of protecting their children, other moms don't want to know this pain.  They don't want it to be real. 

We don't either.

I've lost count of how many children have died, just since 2020 began.  But two in particular have devastated me.  Zane was one of the few boys with full T18 older than Aaron in the whole world!  His mom has been a mentor to me from the beginning.  He went into the hospital just after the New Year and was gone so fast. 

This week, sweet Emarie got sick.  She's 12 (now forever 12) and I think we've known her family for almost ten years.  She didn't have T18, but she was part of the Chromosome 18 family.  She coded on Wednesday, and hung on until today.  I just can't seem to wrap my head around this.  She was so happy, doing so well.  A wonderful big sister, and now she's gone. 

Her dad took family pictures for us before Matthew's mission.  Her mom and I sat together at so many school events before they moved farther south.  I love her smile, her younger siblings.  And I have no idea how to process this.  I never figured out how to process Zane's passing. 

This seems so wrong.  So out of order.  My mom used to say she wanted all of us at her funeral, because that meant she wouldn't have attended any of ours.  I said that to my kids, too.  Until ten years ago. 

Most of my posts manage to end upbeat.  This one won't.  I'm sorry.  But I just can not seem to find anything positive today about a child dying.  It just feels so wrong.  So out of order.

“For no soul can ever be replaced, and death claims a beauty and a magnificence that will always be missed.”

― Jocelyn Soriano