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Deb Jones Sep 2017
Like a child, I am living the life given me.

I have experienced almost everything there was to experience.

I forged paths that many feared to take.
I grabbed opportunities with both hands and ran in circles with them.

In my professional life I was a force to be reckoned with. I didn't look back or, in many cases, down.

I am so proud of that woman.

I gave to everyone.
I loved making people happy.

I wanted to share everything.

It took me a while to see the resentment behind the gratitude.

I was full of pride.
I think too full.

My life came to a grinding halt one day.

I still haven't found my footing in this new version of me.

But I am looking.
Always looking.

I have been humbled.

I am humbled.
I was diagnosed with Type 1 Diabetes 4 years ago.
I wear a bionic insulin pump. I am still learning to live with it.
Deb Jones Sep 2017
For personal reasons I don't have a deep faith, like most of you have, to wrap around myself like a mantle during a tragedy like this.

And I truly believe that Ashley's death is a tragedy.

I have wrote and rewrote this. Trying to find the right words to tell you how wonderful Ashley is. "Is" because she will live forever in our hearts. There is no "was"

And I finally realized I couldn't. It would take a lifetime. Or 22 years.

This started out to be my commemoration of Ash. Instead it has turned into something I probably won't share entirely.

Because I have lived a long life already, I know how the passing years eventually make grief bearable. How it knocks you to your knees and bends your back. But over time it becomes part of you and you learn to live in a new reality.

No one forgets a loved ones death. You just learn to live with the pain. We absorb it and carry the pain around with us forever.

My new reality is a life without Ashley in it. Where she never gets to grow older. But she also doesn't have to grow sicker. That gives me little solace. As I am selfishly wanting her back.

Type 1 Diabetes killed Ashley. It's an illness that is a battle every day. You fight to get through the day. To do the best you can and then get up the next day and fight the same battle all over again. You don't get a day off. Or a vacation from it. Because if you stop fighting for even one day you will have to fight 100 times harder to get back on track.

Ashley wanted to live a normal life. She wanted to do everything that her friends were doing. And her sister, made that possible. She watched over her, especially the last 2 years. They were together almost every day and night. I am proud of her. She grew into the adult she is by loving and treating Ash like a normal young woman. Adventuring with her.

Ashley lived with me from the time she was a toddler until she was 21. She was a daughter to my heart.

She was diagnosed with Type 1 Diabetes the very same day I was. She was 18. We learned how to live with it together.

She was doing so well. Only hospitalized a few times. While I was hospitalized monthly.

Her last hospitalization, I picked her up after her discharge. She was still vomiting a lot.

I called and made her an appointment with my Endocrinologist for the next morning.

I want to go back to that minute. The one right before I reached out to touch her shoulder to wake her for the appointment the next morning. The minute before I realized something was wrong.

She wouldn't wake up. I pulled her over, her eyes were open in a blank stare.

By doing chest compressions on her, arguably the scariest experience any loved one can go through, I saved Ashley.

A helicopter landed in one of my fields and flew her to the nearest Trauma Center.

So we could have almost 6 days to say goodbye to her. We are all forever grateful for that.

She was declared brain dead the first day she was in the hospital. But I already knew that.

I am so angry at Ashley's senseless death. Losing a beautiful young girl. One who tried to wrap everyone in a kindness that was her unique specialty.

But, I know Ashley was tired. So very tired. She went 16 days without eating. Only drinking water or juice she vomited back up.

I KNOW how she was just so tired. I know that kind of tiredness. Not only of your body, but of your spirit and soul. When you want to isolate yourself from everyone because it's too much to face. To deal with. There is no bravery or sacrifice. Just the silent chant of pleas. Pleas to make it stop. Pleas for solace. For surcease.

The hospital failed her. Looking at laboratory values versus a patient's physical self.

And I wasn't there to advocate for her. The family that was there with her were scared. And helpless to fix her. How do you hold a hospital accountable, with its anonymous staff, without holding me accountable too?

There are things I should have taught Ashley. How to ask for things she needed. How to demand. How to scream.

But I didn't. I talked with her about things she needed. But I didn't see the ramifications of her not using all avenues to get help. I didn't teach her how to scream.

Even though my screams are just as silent.

I knew she was severely brain damaged the morning I first saw her. But really...I was in denial too.

It helped to be the one all the information was funneled through. But the cost to me was denial. I could explain everything to everyone. Over and over again. To family groups. To individuals as they arrived at the hospital and I walked them down that long corridor to the intensive care.

Using that walk to prepare them. To stand beside so many that came to say goodbye to her. But still suppress my grief into a hot ball that I choked on every day she was on life support.

I could only really grieve the way I needed to once I was alone. My sobs were private. Thinking of Ashley when I went to sleep. And of her when I woke.

Every thing Ashley did during that 6 days she was on life support was talked about. And used to foster hope. The rare blinking of her eyelids. The few tears that coursed down her temples.

I knew they had pressure cuffs on her legs. To help keep her blood pressure up. Until I saw the damage to her legs...I still thought there was a chance. The chance I refused to say outloud. As if I challenged what I knew to be true with false hope.

I knew she had significant brain damage but I still thought there might be a chance she would recover, be a different Ashley than we were used to, an Ashley that would need rehabilitation. An outcome that would allow us to keep her here.

Then I saw her legs. I was alone and noticed the pressure cuffs were off. I lifted the blanket and saw her legs. They were blue and mottled with large sections of skin gone. I knew then that she really was not going to recover.

The surgeon even discussed taking one or both of her legs at the hip in order to save her from the infection. But he said she was too fragile and wouldn't make it through surgery. And even if they did the surgery it would not save her brain injury.

My family and I privately discussed ***** donation for Ash. We knew Ashley would have wanted that too. I called a friend of mine that works with the donor network and she said of course Ashley could be evaluated for any donation. I kept in contact with her while Ashley was in the hospital and asked when we could talk to the ***** donor advocate/liaison. That became a moot point when Ashley started spiking temperatures with the infections ravaging her body.

When she was finally completely off sedation she was unresponsive. That poor baby. That poor, poor baby.

Her brain damage was severe. And her legs were poisoning the rest of her body. She really just stayed for us. To give us a chance to say what we needed to say and what she needed to hear in her final moments. And we held her and told her we were walking with her into the sunlight.

Because I have many medical credentials, I was the one that talked for the family. And then talked for the physicians.

I asked all my family to come to a designated conference room. When I talked to my family about removing her life support there was anger. But as I continued to explain to them there was just a deep inconsolable sadness.

When 4 of the doctors came in I told them we didn't need a rundown of all the reasons to remove her from the ventilator. We had already made our decision.

When we turned the ventilator off she could breathe on her own for a little bit. I told my family that she would go fast. But seeing that she was breathing they all left the room. To smoke, to text, to make phone calls.

After they were gone about 4-5 minutes Ashley's breathing began to slow down. I was the only one in the room. I asked the nurses at the desk to call my family overhead.

They still didn't come back soon enough.

I climbed into the bed with Ash and pulled her into my arms. I rocked her and crooned to her. Told her how loved she was.

She took her last breath in my arms.

When my family funneled back into the room I heard over and over again how Ashley must have waited until they left the room to die so they wouldn't suffer more.

My heart cried. What about me? What about me.

I am supposed to tell people how loved she was. How she shined. I think they all know that already.

I keep trying to commemorate her. To write a speech detailing her life and how much she gave of herself to others. How she was the hub a lot of her family circled around. She was unceasingly happy. She was so loved.

You know what I want to do? I want to scream. I want to rant and rave about the unfairness. Point to other people, people I don't know and say why couldn't they have been taken instead? I don't love them like I do Ash. Point to myself also. Why wasn't I taken?

I will tell everyone what they already know. About how wonderful a person Ashley was and how much we love and miss her. How we will grieve the rest of our lives for her.

The night I came home after Ashley died I went right to my mother. I told her Ashley was gone. And she held me, in the dark, with my head in her lap while I cried. She didn't talk while I sobbed. Just made soothing noises.

And that was what I needed. What my heart craved.

I appreciate everyone that called me just to listen to me cry. Some would not even talk other than the first hello. Just soothing comforting sounds. I won't forget the gift you gave me of just listening to me sobbing.

I want to share something that was happening to me the first 2 months during the time she was on life support and the months after. I have never experienced hallucinations before. But I did during that period.  I would wake up with my arms out to people. In the middle of a conversation. Trying to soothe them. Help them. I don't understand why I needed certain things, like the way I woke while dragging dining chairs in my room. Arguing I needed them when my son tried to stop me. Or the way I would stop breathing in my sleep and knowingly maintain it as long as I could. Or the other private personal things I hallucinated.

I called a psychiatrist and talked to her about what I was experiencing. And she told me that it was normal. It stopped after about 2 months.

Part of me knows I was trying to carry the grief I knew my sister and her kids were trying to carry. If I could, I would take their grief and add it to mine. Just to give them some peace.

My niece, Ashley's sister had a little girl a month ago. Her name is Ashley Michelle.

There is no death, only a change of worlds. —NATIVE AMERICAN PROVERB
September 20 was the first Anniversary of Ashley's death day.

— The End —