An Open Letter

It's not my job to hold your hand and help you through my grief.

It's not my job to consider your feeling while I grieve. 

It's not my job to make you feel comfortable after I've lost my child.

My grief doesn't end when yours does.

My pain doesn't go away when yours does.

My life doesn't go back to "normal" like yours does.

I won't ever go back to being the person I was before my great loss.

You... You will move on quickly.

Your life will continue just as it once did.

You'll have days,

Weeks,

Months,

Maybe even years where you won't even think about it.

You will be whole again.

I will hurt long after your pain has ended.

I will mourn long after you've moved on.

There will always be a huge piece of my heart missing.

I will never be the same as I was before.

Because my world was flipped off its axes.

I won't be able to see the world as I once did.

I won't be able to do the things I once did.

I won't enjoy the things I once did.

The sun doesn't shine as bright.

Ice cream doesn't taste so sweet.

The cold isn't as cold as it once was.

I can't help you understand how I feel.

I'm confused and don't know up from down.

It's not my job to help you through your grief.

It's yours to help me.

And if you don't want to that's fine.

I don't have the energy to reach out to anyone anyway.

I'm tired.

I'm always tired.

I'm sad.

And I'm angry.

And I'm just really really sad.

I can't think of you while I struggle to live each day.

I can't help you when all I can do is cry.

I can't be the friend that you need me to be.

You have to be one for me.

You shouldn't stay away because it's hard for you.

It's harder on me.

The person you thought you knew died with my child.

It's a major life change to comprehend.

It's a major life change to live.

You can spout all the stereotypical lines you want  but they won't help me.

Be gentle on me for my heart is broken. 

** I wrote this as a grieving mother speaking to those who have not lost a child. It's to no one in particular, yet to everyone. I'm still struggling with my words, spoken and written. I find I fumble more than I succeed. I'm struggling always. Life will never be the same without my son. I will never be the same.  

   

 

April 26 2016

(April 26,2015)

 

I did something today that I haven't done since my son was alive.

I volunteered in his preschool class.

...

...

...

 

You may not recognize it,

but that was HUGE.

 

Every time I had to go in there,

I'd go in before the kids got there.

Then I would sneak out before they all arrived.

 

(April 26 2014)

 

I was scared.

I was nervous.

I was a wreck.

 

There are so many emotions.

 

I saw how far these kids have come.

The two little girls who wouldn't even talk,

and when they did it was Spanish,

they giggled,

laughed,

said hi,

and they talked a lot.

In perfect English.

 

Most the kids got really excited to see me.

Most of the hugged me.

One little boy wrapped his arms around me as I read to them.

He kept saying "I'm hugging you",

and refused to let go.

Several little girls latched onto my arms while in lines.

I had a kid attached to me almost the entire time.

And when they weren't attached,

they followed me around.

 

(April 26 2014)

 

I sat there and watched their morning routine.

I smiled.

I wanted to cry.

I could feel Liam there.

His square sat empty,

but I could feel him there,

participating in everything they were going.

 

I wanted him to be there.

I needed him to be there.

 

I thought maybe if this was a nightmare,

this would be the time I'd wake up.

When I'd look up and see him sitting there in class.

 

But it wasn't a nightmare.

I wasn't asleep.

This was just more reinforcement that this is my reality.

Not a reality I want,

but mine all the same.

 

I know it's not going to change.

I know I won't wake up from this.

I know it's not a nightmare.

But I can't help those little slivers of hope that work their way into my heart.

 

(April 26 2014)

 

I watched as these kids learned.

As they laughed.

As they showed us how far they've come.

I was proud of them.

And I had wondered how far Liam would have come,

if he was still here.

 

It's a parents worst nightmare.

Loosing a child.

Then trying to live without them.

A nightmare I've been so scared I might have to live for so very long now.

I've been scared since my first pregnancy when I miscarried.

I was terrified from the day Liam was born.

I let my guard down in his last 5 months.

I let myself believe he was out of the woods.

I let myself believe that the worst was over.

 

I always say "if I'd only  known".

There are so many things I would have done if I'd only known.

So many things I would have changed.

But I didn't get to know.

 

Why can't we choose our own journeys?

Why can't we go back and change things?

Why can't we have what our hearts truly want?

 

Because that's not how life works.

 

If only that sentence alone could change everything.

How we feel.

How we act.

 

 

 

 

 

 

 



Bright Light

 

Because life is confusing.

It's not perfect.

It's not pretty.

It's ugly and cruel.

 

Except for those little glimpses of light within the darkness.

 

Liam.

My bright light.

My happiness.

My reason.

 

And now it's all gone.

I'm left with only the memories of my bright light.

 

Both my children gave reason to my life in their own way.

 

 

 

Lanie was my rainbow baby after a miscarriage.

I had wanted to be a mom so badly,

and was devastated after the miscarriage.

Lanie brought back my happiness.

 

She was the little girl who wore bows,

smiled for the camera,

and wore dresses to play in the mud.

 

Her imagination trumped all others.

She was the little girl who made huge messes.

 

 

She changed me.

I loved (and still love) her with all my heart.

 

But there was still something missing.

My little boy.

My little lamb.

 

 

His birth wasn't ideal.

His health far from perfect.

But he was my perfect little boy.

 

My little boy who loved his cats.

And his dogs.

His cars.

Football.

NASCAR.

 

 

He was the missing piece.

The missing link.

And I needed him.

 

He was the little boy I always wanted.

And now he's gone.

 

The bond we shared is unlike any other.

Unlike the bond I share with my daughter.

I'd like to think that bond could never be broken.

Even though he's in Heaven.

 

Though his life brought us a lot of heartache.

A lot of stress.

He brought that bright light.

 

Even though he is in Heaven,

his light will still shine in my heart.

In my memories.

 

I know that right now I'm grieving,

but one day my heart will open up again.

Until then I grasp at the small moments of bright light that reach my broken heart.

The light that shines through my daughter,

and through the memories of my son.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My Own Grief

Weeping may endure for a night,

but joy comes in the morning.

Psalm 30:5

 

 

 

Nights are the hardest.

I don't sleep well due to nightmares,

flashbacks,

and physical pain.

 

Nights are quiet and lonely.

That's when the tears come.

I can't stop them.

Though I wish I could some nights.

 

I miss my son more than anything.

 

This bible verse says that joy comes in the morning.

I wish it did.

I wish I could be full of joy

and happy for my family.

But I struggle everyday.

Every minute of every day.

 

I've yet to take a deep breath.

I've yet to smile where it wasn't at least partially forced.

I've yet to have one day where I don't cry.

That's my grief and I own it.

 

I feel so alone in it.

People avoid me.

No one wants to come around the sad lady who lost her son.

It's just too hard for them.

No one wants to come to the house where there are reminders a little boy used to live there.

Its just too sad for them.

 

Too hard for them.

Too sad for them.

 

The problem with being strong for other people,

is eventually they forget how much pain your really in.

They forget how much you need them.

They get lost in their own emotions,

their own grief over your lost son,

that your feelings no longer matter.

And when you can't be strong for the anymore,

because our grief is too much,

they act like your crazy.

Like you don't have a right to feel the way you do.

 

Eventually even the closest of people walk away from you.

Slowly they become more and more busy so you see them less.

They avoid your phone calls,

or talk less.

Even when you want to talk about anything but your grief.

 

Even when the last thing you want to talk about is your grief,

no ones there.

Because just talking to you remind them that you lost your son.

And that's too hard for them.

 

I tried not to be that grieving mother,

who didn't care how it effected others.

Every one's emotions mattered.

Everyone grieved in their own way.

And that was important.

I went out of my way to make sure people understood,

that I understood their grief,

and the importance of it.

 

That was really hard for me.

To care about someone elses pain when I hurt so horribly.

But it was important so I did it.

 

All those people that I comforted,

even though it was too hard for me,

where are they now when its too hard for them?

Not offering the same support for me.

 

Yea my grief lasts longer.

It'll probably never go away.

I lost my son.

The one person I spent 24-7 with.

The little boy I devoted 4 years 5 months and 1 day too.

The little boy I had to be a nurse for.

The little boy that I loved with every fiber of my being.

 

And now I grief alone.

And I don't know how.

 

Tuesday were the worst because it marked the one week anniversary.

Then I started spending the whole day trying to hold it all together,

because Tuesdays shouldn't hold so much power.

That's when Wednesday's became bad.

I spent so much energy keeping it together on Tuesdays,

that I had nothing left on Wednesdays.

I started breaking down emotionally.

It made teaching a kids bible study class difficult.

I realized that I wasn't emotionally ready to not spend Tuesday crying,

and lost in grief.

 

 

Blessed are those who mourn,

for they shall be comforted.

Matthew 5:4

 

 

I have a bad habit of not mourning.

Or of rushing through the grief.

I don't know how to handle it,

because it's not something I can fix.

I have to fix everything,

and I can't fix this.

 

Trying to help others deal with the loss of Liam was like me running away from my own grief.

I didn't want to feel it.

If I made the grief go away then maybe none of this ever really happened.

Maybe my son would still be here,

and this would all have been a nightmare.

 

But its real.

It happened.

And I can't change it.

 

That doesn't make this easier.

It doesn't make anything better.

 

Figuring out how to grieve has been hard.

No one to tell me what I should do.

No one to explain how this works.

 

I have no gravesite to take flowers too.

I couldn't do it.

I couldn't see my son in a casket.

And I couldn't visit him at a cemetery.

So we had him cremated,

and his ashes placed in a beautifully carved wooden "urn".

It depicts God with a grown sheep and holding a baby lamb.

It was perfect for our sweet little lamb.

But I can't even hardly look at it.

There's just a flood of emotions when I do that I can't process.

 

So I stare at his pictures instead.

I see his smiling face.

I remember the day the photo was taken.

I remember the joy.

 

That's all I have left.

 

And I think how cruel life is.

How a small innocent child was born with the odds always stacked against him.

How he never had a chance to live a long,

healthy life.

And I get angry.

And then I remember how he was never even supposed to live this long.

How he was never supposed to survive his first week of life,

let alone ever make it out of the NICU.

And I remember how blessed I felt to have him.

How blessed I was to be the mother of such a strong little boy,

who didn't care about the odds.

And then all the times his pediatrician praised me for how well I cared for him rang through my head.

"If it wasn't for you he wouldn't have lived as long as he did"

"If he's had any other mother he wouldn't have made it"

I always thought it couldn't be true.

Any mother would do what I'm doing.

Any mother wants to see their child healthy and happy.

I'm not dong anything different than any other mother.

 

And then it dawns on me.

I've surrounded myself with other CDH moms on social media.

I created a virtual world where flushing mediports,

and tube feeding was a normal thing.

 

So now what?

Where do I go from here?

Everything used to be planned out.

Almost every minute of every day (and night) came down to a schedule.

Meds.

Tube feeds.

Breathing treatments.

Home therapy.

Doctor appointments.

School pick up and drop off.

 

Now everything is being played by ear.

Things are planned.

There's no strategy for the day or days to come.

I just sit here alone every day until I pick Lanie up from school.

And then I sit here some more.

 

It shouldn't be so hard for me to process.

But the again I shouldn't of had  to say goodbye to my son.

 

 

But those who hope in the Lord will renew their strength.

They will soar on wings like eagles;

They will run and not grow weary,

they will walk and not be faint.

Isiah 40:31



For Liam "gone too soon" by Daughtry

Liams Memorial Video

Changed

 

 

Life...

It's a "funny" thing.

A crappy thing.

It's a rollercoaster ride of emotions.

Life brings you up.

When you're at the peak,

it brings you crashing back down.

Sometimes you hit rock bottom,

other times your safe.

 

Or in my case,

the peak is only 5 feet off the ground.

Then life slams you into the earth a million miles an hour.

Barely lets you lift off,

just to send you crashing back down.

Makes you feel like every bone in your body is broken.

Makes you feel like even your soul is broken and distorted.

 

The goal is to find something to grasp on too.

Something that makes the ride enjoyable.

Something to help give and grow your faith.

Faith in life.

Faith in humanity.

Faith in God.

 

I'm having a hard time finding anything to grasp onto.

I'm having a hard time not being angry with life.

With God.

After all my baby is gone.

An innocent,

perfect little boy that was much wanted,

much needed,

is gone.

And I can't gain grasp on that.

 

My heart tells me it's my PTSD that makes me feel this way.

My heart tells me God would never do this to hurt me.

My heart tells me that even though God has a plan for everything,

the devil can weasel it's way in and change things.

But my heart hurts so much.

I find myself questioning so many things that shouldn't be questioned.

Because after all we are supposed to be faithful.

 

Why was my baby born sick?

Why did he have to spend his entire short life fighting to survive?

Why didn't God heal him?

Why did I have to loose him?

 

All questions I shouldn't ask.

 

The pain of loosing a child is so intense.

It changes everything.

Makes you question everything.

 

When you loose a child,

you loose more than just a child.

You loose birthdays.

Easter's,

Christmases.

 

You loose those morning moments when you wake up and everything feels right in the world.

You loose that first perfect smile of the morning.

You loose early morning cartoon cuddles on the couch.

You miss out on those serine moments of water play in the front yard.

You miss out on future school field trips,

learning how to read,

learning math,

learning to tie their shoes.

You miss out on catching them feeding the dogs cat food through the screen door.

You miss out on a life time worth of memories and moments.

 

Your world is turned upside down,

inside out,

sideways and well all ways.

Everything is changed and nothing is the same.

 

The pain changes you.

You don't look at the world the same.

You don't feel the same.

You have to fight for every moment you get,

not filled with tears.

The pain is so intense,

it feels like something heavy is on your chest,

making it hard to breathe.

 

This is my life.

Complicated.

Frustrating.

Heart breaking.

Changing.

 

Bedtime photo of Liam April 15, 2015

 



Inspirational True Story

Post from April 11, 2011 from an old blog I no longer use.

Today (April 11, 2011)  I talked with an older man. He was unbelievable nice and open. He told me how just about a year ago he was diagnosed with lung cancer and given only 3 months to live. This man was a truck driver who went in for his mandatory physical and that was how he found out. He was sent to a specialist in the area and they found several large spots on his lungs. The doctor decided that they needed to try something that was newly developed and only been testing for 6 months. It's kind of like chemo but genetic. He explained to me that it's a new kind of chemo that actually goes straight to the cancer to kill it off. Unlike the chemo we're all used to that they shoot into your body and pray it lands in the correct area to kill off the cancer. Just a few weeks ago, after only 2 sessions of this new genetic-chemo, this man went back to his specialist for his check-up and found that the spots were dead. When he went back a second time the doctor walked into the office grabbed the mans hand and shook it. The doctor continued to shake his hand as he congratulated the man letting him know that not only was the cancer spots dead but they have disappeared. He was declared cancer free. It's amazing the breakthroughs that are happening. Just a month ago I was depressed because here my husband just lost his aunt to cancer, then my aunt had to be tested for cancer and then we found out my husbands buddies son was diagnosed with cancer. I was angry and mad that we haven't found a way to fight the cancer more effectively or found a cure. It seems everyday we're getting closer. This man agreed to receive experimental treatment and because his bravery he is now cancer free. It's amazing. I felt his story should be told, that we should all take it in and know that even when life seems to be dark and glum that there is light. There is good and there is hope. When a doctor looks at you and says "you have cancer" and only have so long to live means you should fight harder. Don't give up. Doctors don't know everything. They can estimate but its never a sure thing. Miracles happen everyday. Sometimes you just have to take a chance. Follow your heart.

DIY Mini S'more Campfire

Lanie just recently found out that she couldn't attend this years Girl Scout camping trip. She had been looking forward to this trip and talked about it all the time, and was upset she couldn't go camping. I wasn't sure what I was going to do to make this up to her. 

So in the spirit of trying to be better for her I decided Friday family fun would be a great idea. This weeks fun I decided would be s'mores. Since she can't go camping, I brought the campfire to her. Here's how to make your own indoor mini s'mores campfire:

What you'll need:

Ceramic pot

Potting soil (optional)

Rocks

Tea light candles

Lighter

Skewers

S'mores ingredients

1) take the ceramic pot and fill it halfway with soil. I decided to to this because I already had soil on hand. You can skip this step if you'd like. 

2) fill the pot the rest of the way with rocks. If you didn't use soil then fill the whole pot with rocks. I used the rocks from the candle section at Walmart. They were .97 cents a bag and I took 2 to fill half the pot. 

3) next take a tea light candle and place in the center and secure it in the rocks. Make sure it isn't wiggly. You can place how ever many tea light candles you can fit in whatever size pot your using. I recommend one per person if possible. I only used 1 for this. 

4) light candle and enjoy!! Just remember fire safety. You don't want to leave the candle burning unattended or with small children or let's near. 

(Look out for the next post containing our indoor camp out)

Positive or Negative

 

 

I used to think of myself as a positive person.

In fact I know I was the most positive person I or anyone I know have ever met.

I was perpetually positive.

Life has a way of weighing down on you.

Of changing you.

I've lived a hard life.

My childhood wasn't the best.

I suffer from chronic constant migraines for years now.

I am in constant pain from Fibromyalgia,

degenerative disk disease,

and arthritis in my back.

I have depression,

PTSD,

and anxiety.

My son was born with Congenital Diaphragmatic Hernia,

and was chronically ill his entire life.

Still I stayed positive.

Granted not as positive as I was before that,

but still positive.

 

In December when my son passed,

it felt like the world was crashing down on me.

Any positivity I had flew out the window.

For months I haven't hardly been able to function,

let alone feel positive about anything.

 

Today I feel different.

I feel sad.

I feel empty.

Just like every other day.

But today,

for the first time,

I felt some hope.

Some positivity again.

Not about my grief over loosing my son.

But for my health.

 

After weeks of trying to get into the lab for doctor ordered test,

yesterday I finally got in.

I parked in that underground parking garage,

despite my unreasonable fear and anxiety.

I stayed in that crowded waiting room meant for 6,

yet filled with 20,

despite the anxiety building.

It took 2 1/2 hours for 5 minutes of blood draw.

But I sat through it.

 

The doctor was testing me for h pylori.

I had decided a while back,

after Liam's passing,

that I didn't care about my health.

Or rather that I didn't have the energy to worry.

Last night I decided that even though I knew that h pylori was an infection,

I should do more research about it.

So I sat down and spent hours researching.

 

I found that this could be a major reason to my fatigue,

vitamin deficiencies,

headaches,

allergies,

and so much more.

Turns out you don't show symptoms of h pylori unless it's been in your system for years.

If you don't get treated as soon as you notice symptoms,

then it only gets worse over time.

H pylori can even give symptoms of fibromyalgia,

or at least that's what I read.

 

Today for the first time,

I felt optimistic,

positive about something.

Optimistic that there could very well be an answer to what's wrong with me.

That there could very well be a cure.

 

It won't help my PTSD.

It won't help my pain over loosing Liam.

But maybe in getting rid of the physical pain,

I'd be able to work on the emotional pain.

Find a way again.

Or a start anyway.

 

I had counseling today,

and I explained to my counselor that I keep moving forward,

in hopes that one day something will click,

and things will start to feel better.

Things can't be right again.

We just have a new reality that we have to find a way to get through.

Or I have to find a way to get through.

Because it seems that I'm the only one struggling.

That's my reality.

 

 

 

 

 

 

 



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.