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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7 Days Till 5

In just 7 days,

my little Liam would have turned 5 years old.

I'm having a hard time grasping the fact that he isn't here.

That I won't be waking him up by singing 'happy birthday'.

That I won't be tickling him until he can't laugh anymore.

It's hard to believe that I won't be planning a party,

or decorating the house.

 

Instead I'm trying to plan something in memory of Liam.

How is this even possible?

I'm so confused by it all.

My heart aches to see him running through the house.

To hear his laughter.

That's the one good thing about PTSD.

I get flashbacks of good memories every now and then.

I can still hear his laughter.

See his smiling face as if it's really there.

I still flashback on all the bad times.

I've tried so hard to run away from them,

but they don't stop.

So I stand there and face it head on,

wait for the flashback to go away.

It's the only way I can survive with less damage.

Here I am stuck between the world of the living,
and the world of the dead.
A piece of my heart will always be in Heaven with Liam.
Yet here I am,
stuck,
trying to find a way to live on.

Birthday parties are fun and happy.
You celebrate,
laugh,
eat cake,
and spoil the birthday boy.

This isn't a birthday party.
It's a memorial thing.
And memorial things are sad.

I have several ideas running through my head to do for little lamb.
I want to have a star named after him.
When I was a kid and my nana died,
I always looked up into the sky.
I felt that when you died,
a star appeared to represent you.
You went to Heaven sure,
but a star would appear for us to see.
It's how I felt as a kid anyway.
I've always loved astronomy,
so naming a star after Liam wouldn't be too far fetched.
And it's something the world can share.

I'm also wanting to release butterflies.
I'm having a hard time getting my hands on caterpillar's or butterflies.
At this rate,
it'll be a butterfly release after his birthday.

I would also like to get a stuffed animal in his memory.
One weighing his birthday weight of 2lbs 4oz.
One weighing his last weight of 23lbs.

Everything else is still up in the air.
Missing him is just so hard.
I still don't know how I wake up every morning.

 

Graduating To Heartbreak

This week has been such a mix of feelings.

Liam's preschool class spent the week making giant mother's day cards,

as well as preparing for their graduation.

 

These kids have come so far.

They've grown so tall compared to what they started the year at.

They're so smart,

and have learned so much.

 

As I watch them I am both proud and sad.

Proud because of how far they've come.

Sad because my Liam should be right there with them.

 

I won't be getting a giant mothers day card with Liam's handprints.

This year was supposed to be the first year.

The first year my baby boy came home with a mothers day present for me.

These little trinkets and handmade gifts seem just that.

Unless your a mom.

Then these pieces of paper and paint become this heartfelt,

most wonderful gift.

 

I still have all the little thing Lanie made me over the years.

They mean something.

They're not just paper and paint,

popsicle sticks,

glue and glitter.

Our little ones put all their love into making these sweet things.

And when I lost my son,

I also lost these precious moments.

 

He wont wake me up Mothers Day morning,

saying "Happy Modders Day Mommy"

He wont proudly present me with his handmade gifts on Friday.

And that's hard.

 

The preschoolers will be doing a graduation ceremony at the end of this month.

I won't get my son up that morning.

I won't get him showered and dressed nice.

I won't get to take before pictures.

I won't get to drive him to school and proudly hold his hand as we walk to class.

I won't get to see him presented with his "diploma".

I won't be presented with a picture of him wearing a tiny cap and gown.

Because my son is gone.

 

I'll wake up that morning.

Done my minions shirt for their theme.

Drive to the school.

Help the teachers wrangle the kids.

Walk to the cafeteria for their ceremony.

Stare at the seat they're setting a stuffed minion in and Liam's picture.

Politely clap for each child called up to receive their "diploma".

Listen as they most likely mention Liam's name.

Walk with the kid back to class.

And help them with activities.

All while trying not to cry.

All while feeling like my heart has been ripped out of my chest.

 

I didn't just loose my son.

I lost the rest of our lives full of memories.

 

My son will forever be 4 years 5 months and 1 day old.

 

 

 

 

 

 

 

 

 

 

 

 

 

Mommy Time

 

 

I remember when I was begging for "mommy time".

Back then life seemed so stressful.

So exhausting.

I hardly slept because Liam's care was around the clock.

I hardly slept because I was always worried.

 

It's exhausting constantly worrying.

Worrying he would get sick.

Worrying that we'd end up at the hospital again.

Worrying that he wasn't growing properly no matter what I did.

 

And then there's the worst part of all...

 

Worrying,

no fearing something worse would happen to him.

 

As parents of a child born with Congenital Diaphragmatic Hernia,

we learn at their birth that their lives are so fragile.

That their health is hanging from a think fragile string that can break any second.

The common cold can send them to the hospital.

RSV puts them on oxygen and in worse cases,

cause them to require a breathing tube.

We learn that there is no way to see into the future.

No way to guarantee that the future will be bright.

No way to foresee how long they will survive.

 

We learn to cherish every moment,

every breath they take because it could be their last.

 

This was always in the back of my mind.

That fear that today could be the last.

And yet faith and hope always won.

This war inside my mind was exhausting.

 

I needed,

I begged for me time.

Time to myself.

To do something for myself since I never did.

Everyone else always came first.

I was always the last on the priority list.

 

Today it all feels so stupid.

So petty.

I can't have that time back.

Time I wasted fighting for me time could have been spent holding my son.

Playing trains and cars.

Jumping in muddy puddles.

 

I hardly every got me time,

but it seems so stupid now that I even wanted it.

Now that I don't have my son.

 

This is weighing heavy on my mind today.

Justin and Lanie took off to the lake and I'm just sitting here.

Back then I would have been thrilled to have this time.

Not I just want my baby back.

We used to spend this time together playing,

and watching TV.

 

We used to pick a movie,

pop some popcorn,

and cuddle on the couch until he fell asleep.

 

My new reality is that it's just me,

alone on the couch,

with Netflix,

two cats,

and my blog,

wishing for my son.

 

 

 



Irrationally So

          Sometimes life is downright scary. Frightening. Horrible. I've learned a lot yet not near enough in my lifetime.

I'm scared.

          I have no clue what's going on with me medically and I'm getting worse. This last two weeks vertigo and dizzy spells set in. Last night I started getting shaky at signs on stress. The more stressed out I got during a very important meeting, the more my body shook. Uncontrollable shaking. By the time the meeting was over it was bad and easily spotted by anyone who glanced at me. My friend was sitting across from me and noticed. By the end of the night it looked like I had been sitting in the snow a 20 below for hours on end. 

          I wasn't cold though. I sat there fighting my muscles trying to keep them still. That resulted in being extremely sore today. I thought it was a one time occurrence but this morning I started getting stressed and the shaking started again. It took 2 hours to stop this mornings light episode of shaking. 

          Then a little while ago I got a call from my doctors office and became stressed again (irrationally so) and the shaking began again. She informed me that the neurologist I was supposed to be seeing next week was a neuro-surgeon not a neurologist. This set me off. It was irrational I know but I couldn't help it. My stress level escalated, the shaking began and I started crying. I couldn't help it. I have no idea what's wrong with me and I can't control it.

          My brain processed this info as,

What's wrong with me?

When did thing's go from ok to neuro-surgeon?

Does this mean there's something serious and I need surgery?

I just can't deal with this, why won't it all go away.

          I know that I have to go to these specialist. I have to get better. I can't give up. There's no other options in my book. 

          To think that my doctor diagnosed everything wrong with me as Fibromyalgia is preposterous. 

Finding My New Path

When my world came crashing down on me I felt broken.

I was so broken I didn't think I could be fixed.

The world I once knew no longer existed and I didn't know how to handle that.

The family I once had wasn't the same.

I went from being surrounded by those I loved,

to being surrounded by strangers I knew nothing about,

in a city I knew no one.

A city I had never been too.

I found myself in a world I didn't recognize.

with a sick son I could do nothing for.

I felt alone.

Completely and utterly alone.

Broken.

Shattered.

Unrecognizable.

Unfixable.

I spend the last 3 1/2 years riding this wave.

Trying to find a way to make it work,

in a world of the complete opposite of anything I had once thought to be normal.

My new normal consisted of hospitals,

Doctors.

Meds.

Breathing treatments.

Surgeries.

Schedules.

I lost myself.

And now after 3 1/2 years I am trying to find myself once again.

Who I am.

What I like.

What I don't like.

I'm not sure yet who I am,

It's a confusing process.

A long hard process full of ups and downs.

When you've been living in a cave for so long,

it can be scary to see the sky and the sun.

Last year was the closest year we've had to "normal".

I've been finding myself lost in the mix.

I know I need to find my path again.

I can't continue to be this way.

So I've decided to jump in with both feet.

Try something new,

and if it doesn't work then try again.

This time I jumped feet first into PTA.

I jumped to far that I landed myself on the board of executives.

I guess it's fitting.

For the moment anyway.

I need to connect with people.

Remember what it's like to socialize.

It's scary.

I'm way out of my comfort zone.

Maybe that's a good thing considering my current comfort zone consist of sweats,

treatments,

feeds,

and alone at home with only the kids.

Actual interaction with other adults that weren't medical professionals was far and few between.

I know that this new journey will take a lot of work.

Patience.

Will power.

I just want to find a new way in this world.

One with less medical needs.

One with more smiles.

Maybe even find a friend or two.