In this journey of life before Lyd’s passing , I’ve become connected with some amazing people.

When I helped fight for the law, I worked at bringing parents together.  We talked, I heard about their lives, heard about their challenges and listened to all of it through their tears.

It brought us together in a commonality – the one where we wanted to help our children because we were all afraid of watching them die.

And then, their worst fear became my reality.

But, that didn’t stop me from staying friends, helping them. It didn’t stop me from meeting even more people and talking to them.

And friends reached out to me asking me if I’d talk to their friends and I did.  And I talked to strangers on the phone while I heard their desperate attempts to save their children. Their marriage. Their own life because I heard so many say – “I just don’t know how you do it everyday…live without her. ”

And it was ok for me to hear that.  I knew their fear. I was them before I became me.

Today, someone I’ve met in this journey weighs heavily on my heart.  Again, connected through a mutual friend she has called to talk, ask advise, or share the successes and challenges of a child with a seizure disorder.

I listen.  When I can.  And when I can’t, I go back  – listen – and then reach out.  I offer what I know, support her when I can and applaud her for her continued advocacy.

She messaged me the other day as I was finishing my work day.  She was waiting for a diagnosis for her child.  She was distraught, lost and in a fog of the Dr.’s suspected diagnosis.

Then, she said it.  She wrote the words that hurt my heart and crushed my spirit.  Battens Disease.

Most of us have never heard of it. Until fall of 2014, I had no clue either.  But, then, in Colorado of October 2014, I met parents who had fought for a law in Utah and had lost their child to Battens.

They shared their story, we shared ours. And we shared a lot of tears. Only in 2 days time we became a type of family – a family no one ever wants to be part of.

One dinner in particular we were talking about having our child die.  I remember Tom breaking down at the table, right there in the restaurant recalling ‘that day.’ My stoic, emotionally reserved husband crying in front of really –  what were complete strangers to us.

But, they got it. They lived it.  They knew this pain.

And we talked about what might be harder.  Suddenly having your child die and unexpectedly walking in to see them gone. Never to say goodbye or I love you or even give them a last kiss on their soft, supple, warm skin.

or…. knowing they would die and holding them in your arms as they took their last breath. Waiting for it to happen having your heart ripped apart as you cared for your dying child and there is absolutely nothing you can do.

Even we (my husband and I) compare death.  Only WE are allowed to do that.  Ask those questions of what might hurt worse.

So, when my friend messaged me and said Battens, she asked me….did I know Lydia would die?  I told her I honestly didn’t.  I remember that was a question we asked at her diagnosis at 5 months of age.

My friend then messaged she wasn’t sure how I functioned every day since Lyd died. She felt destroyed.  She could barely breathe.  Her husband was losing strength as well.  They were crumbling.

They were not close in proximity at the time or I would have gotten in my car to be next to her.  This pain is not one to be understood or gone through alone. That much I know.  Even if I just sat there in silence next to her.

And that pain, that sits deep in my heart from losing Lydia bubbled to the surface. Honestly, I don’t know how I function either some days.  Losing a child is one of the worst things to happen to a person.

But…thinking about this situation and the way society has acted as of late – the anger bubbles.

The individuals who think their coffee getting cold is an issue.

Getting angry at the slow waitress or the bad food at a restaurant.

People who are just mean to others for no damn good reason.

The people who have sat and cried, needing to take some time away because Trump became elected.

Those that complain endlessly about the stupidest shit.

I want to scream at them. STOP!!!

Be a parent burying your child.  Be a parent waiting to get a diagnosis like my friend is waiting for and they are almost certain her child has.

STOP!!!

Fuck, put yourself in my shoes. In my friend’s shoes. In the neighbor down the street who received a cancer diagnosis.  In her husband or kid’s shoes who feel helpless and scared.

The point – put yourself in other’s shoes of people suffering.  None of that other BS matters.  And you sure as hell would gain some perspective on what’s important to spend your energies, tears, frustration, love and compassion on.

That’s for damn sure.

Right now, I can’t process her child might die. I can’t even go to the part where she holds him and watches him die in her arms.   Even now, typing this I’m shaking my head with tears streaming down my cheeks.

How does one do that?  Of course I say that and I buried my own child.  But honestly, how does anything else compare to that?

During the writing of this blog a friend called – we talked a little about what I was writing about. She had a relative die of cancer and she had asked them if the little things people complained about bothered her…her relative said no.

She said no because she had hoped that no one ever faced a fatal cancer diagnosis. She hoped the biggest problem people had was the bad cup of coffee they ordered.

I told her I, of course, never want anything bad to happen to anyone.  I’m not saying that…but what I’m saying is that if we all had a little bit more empathy and a little perspective we might have a different outlook on life.

We might actually look at problems we deem as big and find they aren’t so big anymore.  We’d smile more.  We’d be kinder.

Life is a precious thing.  I can’t say it enough.

Today….today is the day she hears if Batten’s becomes a reality.   I ask you say a prayer. A prayer God gives grace to this family.

And if God’s plan is Batten’s pray that this mother and father can handle this fatal journey.

To my friend…if you are reading this…here are some words from a song by Kari Jobe I often listen to that I’d like to share….

 

“When I walk through deep waters, I know that you will be with me.

When I’m standing in the fire, I will not be overcome.

Through the valley of the shadow, I will not fear.

I am not alone.  I am not alone.  You will go before me. You will never leave me.  I am not alone. I am not alone.  You will go before me.  You will never leave me.

In the midst of deep sorrow, I see Your light is breaking through.

The dark of night will not overtake me.  I am pressing into You.

Lord, You fight my every battle, and I will not fear.

I am not alone.  I am not alone.  You will go before me. You will never leave me.  I am not alone. I am not alone.  You will go before me.  You will never leave me.

You amaze me.. Redeem me.  You call me as Your own. You amaze me. Redeem me.  You call me as your own. You amaze me. Redeem me.  Call me as Your own.  Amaze me. Redeem me.  Call me as Your own.

You’re my strength. You’re my defender.  You’re’ my refuge in the storm.  Through these trials You’ve always been faithful.  You bring healing to my soul.

I am not alone.  I am not alone.  You will go before me. You will never leave me.  I am not alone. I am not alone.  You will go before me.  You will never leave me. Amen”