Grief…What a Mess it Makes

In all my years, I never envisioned living life with steadfast grief. Not grieving the loss of a child. Grieving the loss of the life I saw for my child. Grieving the loss of the life I envisioned for my family.

I am the firstborn…type A…the rule follower…a closet organizer. I appreciate and crave order. But grief has no playbook.

And it leaves behind one hell of a mess.

Denial

Zella the zebra came into this world in mostly the same way as her older three siblings. There was no fanfare upon delivery, just another silently breathed prayer of thanks followed by a slew of sleepless nights and tongue-tied nursing struggles. The diagnosis that followed her arrival nearly 18 months later caught us off guard. We were determined to make the most of it, and honestly as an infant, Zella’s delays were hardly noticeable.

ADNP syndrome was easy to ignore.

Anger

As Zella grew, we moved from not noticing to becoming acutely aware of her delays as they became exponential. Her neurotypical peers roamed the mother’s day out and preschool classrooms, easily traversing uneven surfaces on the playground, babbling to their classmates. Zella remained on her hands and knees, crawling everywhere she went, making gutteral noises that scared most kids and many adults. Her ABA tutor was ever present with her both at school and at home, chronically redirecting the many behavioral outbursts.

This rare syndrome was now affecting our family dynamic, suddenly dictating where we could go and who we could be around.

ADNP syndrome was our family’s pandemic long before COVID-19.

Bargaining

Then came the deals we made with God. Let her walk and we’ll take her to all of the therapy visits every damn day of the week. Allow her to speak and we will devote our lives to community service. Give us something she enjoys doing – an interest, any interest – something to stop the incessant screaming.

And He, in His complete knowledge and understanding of our hearts, has in fact answered in many of the ways we hoped He would.

We have also received more “no”s that we can count.

Depression

The cruelty of this world is more blatant with Zella around. Jake and I can no longer comfortably turn a blind eye to our nation’s serious crisis of faith. The otherizing of those not like us cuts our hearts in a more personal way than it did prior to December 23, 2014.

We have withdrawn from those who praise the denigration of the least of these…because our daughter is one of the least of these.

Jesus’ teachings have never been more real or more applicable. Contrary to the belief of a vocal few, seeking justice and correcting oppression is part of our mission as Christians (Isaiah 1:17). Yet these realizations are discouraging.

Zella reveals how broken this world has become and that we don’t even recognize the brokenness.

Acceptance

The journey is long and never ending, but we are moving more toward acceptance every day. We gain perspective as we bear witness to the heartaches of others. And we are finally beginning to rest in the knowledge that Zella has a valuable future despite us being too shortsighted to ever have envisioned this for her life.

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Glitter

Patrick Droney

String of lights on the door
Welcome back to your life
This is worth living for
There’s so much left in store

And we don’t
Get to choose
Who we get to love
Or who it is we’re gonna lose
Or what breaks our hearts in two

But no one really dies if the love remains
Cause nothing that dies really goes away

See grief it’s just like glitter
It’s hard to brush away
Bright light and it still shimmers
Like it was yesterday
And it falls like confetti
All of the memories explode like a hand grenade
And it’s sweet and it’s bitter
Grief it’s like glitter
Oh, what a mess it makes
What a mess it makes

Past denial and the rage
The what if and the praying on the hardest days
You accept what you can’t change

And no one really dies if the love remains
Yeah nothing that dies really goes away

See grief it’s just like glitter
It’s hard to brush away
Bright light and it still shimmers
Like it was yesterday
And it falls like confetti
All of the memories explode like a hand grenade
And it’s sweet and it’s bitter
Grief it’s like glitter
Oh, what a mess it makes
What a mess it makes

I think life’s a party
Something you should celebrate
Some people leave early
And others get to stay
And hearts they burst like fireworks
At the end of the parade

See grief it’s just like glitter
It’s hard to brush away
Bright light and it still shimmers
Like it was yesterday
And it falls like confetti
All of the memories explode like a hand grenade
And it’s sweet and it’s bitter
Grief it’s like glitter
Oh, what a mess it makes
What a mess it makes