Grief Journal: Priorities

21) Have your priorities changed since you lost your child?

Before Liam passed away my main goal was to keep him as healthy as possible. That was  my top priority. My second was to give him as normal a life as possible. It was extremely important that despite his many medical issues, that he be a normal boy and experience normal things.

Playing in the mud.
Going to races.
Going to school.
Having birthday parties.

(October 2015 Pumpkin Decorating)

Those are just to name a few. I didn't want him to feel any different than any other boy his age. I also wanted him to not be ashamed of his differences like:

His feeding tube (which he enjoyed showing EVERYONE).
His nasal cannula and oxygen (the kids at school said he was cool like an astronaut).
His frequent meds and breathing treatments.....
and more.

(November 2015 After having to go to school with his oxygen)

I would say that I succeeded greatly. Or that WE (my husband, daughter and I) succeeded greatly because it really was a team effort.

(2014)

However almost every minute of every day was planned out and busy. Even "free time". His schedule always came first. It was always TOP priority. His health was always TOP priority. We'd drop whatever we had to at a moments notice to rush to Valley Children's ER. Bags stayed packed with what I donned our hospital gear. Everything was meticulously planned out and there was always a back up plan.

When Liam passed I became lost. Even to this day 2 1/2 years later, I can look at the clock and tell you what I'd be doing if Liam were alive. Since his passing all our priorities changed. Yea we knew we could lose him in the blink of an eye because of what we went through in NICU and his first two years. As the years went by it became less and less likely though that it would happen. Then it did. We got a quick lesson in how quickly our lives could be over and one of us could be gone. That changed a lot of things for us, including our priorities.

Our main priority now is to give our daughter a better life. To enjoy life more than we did before and experiencing things we couldn't do because of Liam's health. We started kayaking as a part of this new outlook on life. I can tell you with almost perfect certanty that if Liam were here, we probably never would have even tried kayaking because it would have compromised his health and well being, plus my sanity because to have MY crazy wild little boy on a kayak would drive me to insanity with worry.

(August 2017 Justin, Lanie and I relaxing on the kayaks)

We try to work to enjoy life more versus work to pay bills only. I can say our lives did a complete 360. To be honest that's the only major priority.

Now I would trade it all back for my son in a hot second if I could.

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Stormy Weather

"The Coulds Around the Monster" by Alessandro Patronu

Grief is like the raging, angry waves of the ocean.

During the worst of storms the waves can reach 100 feet high during a tsunami.

When they reach land those waves can cause absolute destruction up to 1,700 feet up slope.

It destroys and it kills.

Grief is no different.

It grabs you and it pulls you under threatening to drown you.

Then it lets you up for air only to pull you under again.

The waves that reach the shore are the damage is does to those around you.

Grief changes everything.

Or really the loss that caused the grief changes everything.

You no longer are you in the eyes of others.

Those that you've known forever start to look at you differently.

Many pull away and one day stop talking to you all together.

The reason is always the same.

They say it's too hard for them to see you,

to watch you go through the loss and the grief.

It hurts them too much.

Every now and then there is a few trees that survive the storm.

A few friends willing to stick around.

Then there are the old scarred trees that you never noticed were there before.

Those are the new friends who've been through this storm before.

They offer strength and wisdom and comfort while the storm rages.

12-15-15 Me holding Liam for the last time shortly after he passed.

The rain came when Liam was born.

If you know me you  know I love rain.

The sound, the smell, even the dark clouds.

It rained off and on for nearly 4 1/2 years.

Then he passed away and the tsunami hit.

It grew and grew until I thought it would take us all out.

It's been a storm for the last 19 months.

The length of time since Liam's been gone.

There are no words to accurately describe the heart ache and pain of losing a child.

My child.

The pain is so intense I thought my heart would stop.

Grief causes your heart muscle to weaken.

It increases your chance of a heart attack.

It also causes your blood to become "stickier".

I was having anxiety attacks before Liam passed away that caused my heart to skip beats and to beat a few beats super fast and hard.

It was painful.

This started about 7 months before he passed away.

After he passed these episodes became frequent,

happening daily and sometimes multiple times a day.

I was waiting for my heart to stop.

I still don't know how it didn't.

19 months later and my heart still holds a constant ache.

Like a tree that's been through the tsunami and struck by lightening many times,

I'm damaged.

But like the old Sequoia trees in the National forest,

I'm still standing.

There is no timeline for healing.

No guide book to tell you what to do and how long it will take.

I hurt constantly but I am also healing.

One I'll wake up and realize that the healing is done and wonder when it happened.

The scars will always be there.

They'll always hurt but they'll make us stronger.

When you endure a severe injury your body will try to heal it any way it can.

The more severe the injury the more scar tissue it creates.

The scar tissue is meant to be stronger than the skin that was previously there.

It's your bodies way of trying to prevent the injury from happening again.

Personally my scars have never bothered me like they do some people.

The difference with these scars are that they are on my heart.

They are on my emotions and my soul.

You can never go back to the person you were before.

That person will never exist again.

That time to be that person is over.

The storm still rages for me.

The waters still drag me under until I have no air left in my lungs.

Then it lets me go before pulling me under again.

Even though the clouds are pitch black,

the sun still shines through every now and then.

For 18 months I didn't see the sun.

It didn't matter how brightly it shown,

I didn't see it.

I was too far under water to see.

Then one day things just changed.

The sun broke through and I laughed.

Not a fake laugh I've been using to hide behind,

but a real one.

That was just the beginning.

It started with my husband trying to get me active and off the couch because the doctors keep saying that's what I needed.

Then we went on a anniversary trip to the beach.

A few times the sun shone through the darkness and I laughed.

It wasn't enough to cause a break in  the storm though.

One day about a month ago he drug me up to the lake.

Said I needed to get out.

Mind you I find the lake very boring and it only aggravates my allergies so why would I want to go.

This day I gave in.

I don't know why because I never go.

About 2 hours into watching him fish and I couldn't take it anymore.

He could see it so he tried one last thing to keep us from leaving.

That's the day I tried kayaking for the first time.

Read all about it here...

That day things started changing.

The sun started shining through and I started feeling something I hadn't felt in a long  time...

Happiness.

Since then there have been moments.

Even some caught on camera and frozen forever.

How I've survived this long I can't begin to tell you.

I know I counted 1-10 a lot.

I focused on 10 seconds at a time.

Told myself that if I did good and tried another 10 seconds.

I still have days or moments when I survive 10 seconds at a time.

I put one foot in front of the other with no destination other than going through the motions to survive.

But then there are days or moments when my soul feel freer,

my heart feels lighter.

Me laughing at Chilli's after being made fun of for turning bright red after being sung Happy Birthday to by staff.

About a month after Liam passed I posted the following picture along with these words:

When Liam was born, I forgot who I was. Who I was and what I wanted didn't matter any more. All that mattered was what Liam needed to be healthy and happy. When Liam passed I lost part of myself again. Right now it feels like all of myself. My heart will never be whole again because part of it is in Heaven with Liam forever. But is not just a broken heart. It feels like a shattered soul. I don't know how to fix it. I don't know how to be better. I gave Liam my best. I keep moving forward because I don't know any other way. My entire life since the day I was born has been about surviving. I don't know how to not survive so I just keep moving. I keep moving yet in stuck. Like I'm on a treadmill. I just have to wait. And keep surviving.

Flash forward to now and I'm still confused.

I'm confused and I hurt but I haven't given up and have no plans too,

but maybe,

just maybe,

I will find my footing and my purpose again.

Processing

(Imagine is of Liam holding a brand new toy. His first Ugliest Pet Shop toy, taken Fall 2015)

          Liam's passing was hard on everyone. It was hard on us as parents. Hard on his sister and other family members. It was hard for our church and our friends. One group of people I've not really written on is the preschool kids and families. Yes it was hard for them.

          Liam started out the 2015-2016 school year with his class and gained a class of friends. He got to know them and they got to know him. Everyone was his friend. The parents also got to know Liam because we were all required to volunteer at least once per month. They got to see his smile and his crazy antics. Liam loved to make people laugh just as much as he loved to laugh. They got to see him grow and develop and change before their eyes.

          Then one day we threw them for their first curve ball when Liam showed up on oxygen for the first time. All the parents looked at me questioningly and confused. All they saw was this little boy, seemingly normal but smaller than the rest of his classmates. They had no idea he wasn't normal, or that he wasn't healthy. A few parents even had the courage to ask me why he needed oxygen. It was then, on that day, that I stood in front of a room full of Liam's classmates and parents and revealed the truth that Liam was special.

          I was scared to death as I drove him to school that morning. I was worried that the other kids would look at him like he was a freak. I was scared they would make fun of him and shun him. I was frightened to my bones that Liam would become self conscious. I had worked so hard to make Liam proud of his scars and his "button" (feeding tube), and comfortable with wearing oxygen. We just began to not have to tape the nasal cannula on. I didn't want all that work and progress to be ruined.

          I stood in front of this large group of kids and parents and explained that Liam's lungs didn't work as well as our lungs did. I explained that the big canister following Liam around held oxygen that we need to breathe. I explained how the tubing from the canister to his nose allowed the oxygen to travel from the canister, into his nose and into his lungs. I explained that Liam's lungs just got so tired sometimes that he needed a little help breathing. Then I stood there and waited for the questions.

          I stood there as the children stared at me, processing what they heard. I stood there as the parents held their breath and waiting for their reaction. Then tiny little hands flew up in the air.

"So he needs that to breathe?"

-Yes

"Does it hurt him?"

-Not at all. It just helps him.

"So he has to wear that thing on his face and stay with that thing?"

-Yes

"So that makes him like an astronaut!!"

I just stared at them letting that sink in.

"That's so cool. Liam's an astronaut! He's so cool!!!"

          I could have cried right there on the spot. I wasn't expecting that reaction. I looked up at the parents and a few smiled back at me. I didn't know what to say. I just smiled at them. I realized something in that moment. Little kids are so accepting of things that are different. They want the facts because their curios. Some stare because they're just trying to figure it out. Not one kid in that room said a negative thing about Liam being on oxygen.

          When it came time to go for outside play, I worried again. There was no way he could run around. I wanted to keep him inside but his teacher easily came up with another alternative. She took building blocks outside and sat Liam at a table. He happily build whatever his mind could think of. All  the kids took turns hanging out at the table with him because they didn't want him to be alone. Each took turn sitting right next to him. He was the happiest boy in the world at that moment.

          Liam going to school on oxygen the first time was nerve wrecking for another reason. I didn't know how his teachers would navigate moving him from one station to the next with the tank. I stayed in case they needed my help. Like the amazing people they are, they quickly figured out how to move him effectively as well as check the flow setting on his tank to make sure neither he no the other kids changed it. They knew the moment he got pale to either grab me if I was there, or call me. They knew the moment he was quiet that something was wrong. Because of their willingness to learn Liam's needs and work with him, he was able to attend school and effectively learn.

          Liam went from seemingly "healthy" to sick and needing oxygen quickly, but no one ever expected the phone call I would one day have to make. The phone call to inform them of Liam's sudden passing. That morning I had called to explain how I was keeping him home to take him to the doctors. They wished him well and asked me to keep them updated. The next day I had to tell them that he was gone. Class was in session already. I know it wasn't something they wanted to hear let alone get the news while trying to teach 27 other littles. I know it was hard for them to tell the kids what happened and to tell the parents.

          I know the parents held their babies tighter and did their best to explain what had happened. I know because so many times I've read about the passing of a fellow CDHer and held my son tighter as I fought the tears unsuccessfully. It's a pain that sticks with you but hides away until something triggers the memory. Seeing me, or hearing his name probably triggers their pain all over again.

          Since Liam's passing, I have become Facebook friends with several of the parents of his preschool friends. I've watched as they've changed so much over the last year. I attended their preschool graduation, where I watched every one of Liam's friends walk across that stage for their metal and diploma. I clapped proudly for them, even as I broke more inside because Liam wasn't with them. I saw pictures from their first day at Kindergarten as their parents dropped them off at school. Those proud faces smiling back at me through the computer screen. I've watched as they've grown taller and their personalities become more developed. I see them every day I pick up my daughter from school and they smile and wave at me. "Hi Ms Aubin!" they greet me as they walk past.

          I watched as each one turned 5 and parents posted pictures celebrating. And now I watch all over again as they each turn 6 years old. It's bittersweet. I'm happy for their parents that they don't have to know the pain of losing a child, but I'm broken for myself as my son will forever be 4 years, 5 months and 1 day old. I see some of their sad smiles when they look at me. Most choose to "ignore" me until I'm within a certain distance. I know it's hard for them to see me and that they fight their own demons each day. It's hard for me too. Some days I pretend I didn't see them. I don't want them to go through it all over again. Other days, I just stay in my car and hide so they don't have to see it. The few that do say hello in passing or actually attempt to talk to me, I make a huge attempt to put a smile on my face and pretend that I'm happy even when I'm not.

          I hear the emotions in their voice. I hear when their voice cracks. I see the tears build in their eyes and the look that they want to say more, but aren't sure it would be ok. They struggle with the mentioning of their children, like they aren't sure they should. The conversations always start out awkward and most end awkwardly, though I try to ease their fears.

          I struggle every day with the loss of my son. I want people to remember him. I want people to be able to talk about him with me. I want those preschool parents to not be afraid to mention their children to me. Yes I went through hell, but I can also celebrate the living. Sure the celebration or joy is much more muted than it was before I lost Liam, but you can't expect me not to be changed. I struggle every holiday not to sent treats to every kindergarten class that has one of Liam's preschool friends. I don't do it because it seems so weird. I don't send treats to the new crop of preschool kids for that same reason.

          I know that I'm probably already labeled that weird mom, you know the one who lost her son. After Liam passed, it seemed that news spread very quickly through the school and to the parents, Whether they knew Liam or not, they all seemed to know. When staff members started wearing CDH awareness shirts with Liam's name on the back, I'm sure lots of parents asked why. They still wear the shirts every Thursday so show their support and their love. To this day, parents all look at me weird. Before, I was just another mom at pickup. Now I'm that mom who lost her kid but still has to come pick up her other kid. Many times I've even heard hushed whispers. They weren't quiet enough for me not to hear them. One mom even tried hard to get me to rejoin PTA. Three days she asked me and tried coaxing me. When I laughed and said I'd never rejoin PTA again, she stopped trying. She never said a word to me again or even waved hello. That probably solidified my status as the weird mom but I don't care.

          Losing a child changes you. Things you once thought were important, you begin to see as a waste of time. Your time becomes more precious and you refuse to waste any because you know just how short life can really be. I understand why people avoid me. They just don't understand why I avoid them. Some days seeing Liam's friends causes so much pain that I can't handle it. Watching them celebrate birthday's seems to be the hardest. Some days I watch them walk in their little straight lines at the end of the day and just think how Liam should be right there with them. Some days the tears fall, some day's I can keep it all in. I don't expect anyone to understand what I'm going  through. It's safe to say that I only expect them to hug their children a little tighter each night like I wish I could do to my son.

          

Trust in You

Hubby made a comment earlier.

He said that this last year has been the hardest year of his life.

He said "Trust in You" came on the radio the other day.

My brother in law,

nephew,

and husband,

all stopped working to listen to the lyrics.

They said even though they heard the song play in Liam's memorial video,

and on the radio a million times,

they never stopped to actually listen to it.

The song talks about how God is always with you.

How you ask God to give you miracles,

but it's not always how you wanted them,

or when you wanted them.

It's about always trusting in God,

no matter what hardships you face.

When I choose this song for Liam's memorial,

it felt right.

I was so broken and so lost.

Truth is that I still am broken.

I will always be broken.

I had two choices when Liam passed.

I  could be angry and deny God.

I could fight his every push.

I could turn away.

Or I could throw myself down at God's feet,

at His mercy,

and give him all of me.

I choose to throw myself at God's feet.

I choose to offer myself up to him.

I choose to follow God's path for me.

Why?

Because I wanted to trust His promise that my son was in heaven.

I needed to trust that my son was safe.

I needed to now that he was now forever loved and sheltered from pain,

thanks to God sending His son to die on the cross for us.

This past (almost) 10 months have been so painful.

I won't ever say that I don't miss my son to the point it's physically painful.

The very truth of the matter is that,

if it wasn't for God,

I wouldn't have made it through this last year.

That song got me through the toughest time in my life.

It reminded me that God was always there for us.

We haven't been thrown into a cruel world without protection.

We aren't navigating this world without a map.

He has seen everything.

He knows everyone's futures,

their paths.

"When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You"

Listen to the song and watch Liam's memorial video by clicking here

October 2014