21 Months Later

Photo's taken September 18, 2013

I've been trying to concentrate on planning our second annual Halloween party and all the fun things I want to do next month with Buggie. Truth is, it's all just a distraction. A distraction from the fact that, yet again, Liam will not be with us for any of the upcoming holidays. Planning things usually helps me keep my mind off of the sadness but it's hit me like a ton of bricks. I can feel depression grabbing my ankle and trying to pull me under the waters I've been trying so hard to keep my head above. I want to do all the things we weren't able to do when Liam was here because he was always too sick. I want them for my daughter. But I also want to do nothing but stay curled up in bead in sweat pants and hide from the world. Every day is a battle. Some days easier than other days. Still I put a smile on my face and continue on even when I don't feel that smile. It'll be two years in December. People will say things like "you need to move on" or "you need to get over it". What they don't understand is there's no moving on from the loss of a child. You carry it in your heart and in your soul until your reunited. There is no moving on. Losing a child is nothing like breaking up with a crappy boyfriend. You feel the loss of a child every day in everything you do. When your walking through the house and your no longer stepping on hotwheel and trains. When your doing the laundry and there clothes are no longer there to be washed. When your making dinner and there's one less person to feed. When you go somewhere fun like the fair and you and your husband turn to look at each other and say that you feel you've forgotten something but you haven't forgotten a thing. Your just missing a child. I wish I could hold my little lamb and tell him how much I love him. I wish I could smother him in kisses and play cars with him. It never goes away.

❤️💙Liam❤️💙

Child loss awareness month is October. Please help spread awareness. If you have an angel, feel free to share their name so we can pray for the when we light our candles on the 15th for the wave of light.

#childlossawareness #cdhawareness #pulmonaryembolism #littlelamb#alwaysmybaby

9 Months

When you think 9 months, you think pregnancy. Your belly growing as your baby grows inside you. You think about baby showers, and nursery decorations and all those cute tiny onsies for babies. And you think about what happens at the end of that 9 month period. You give birth to a perfect, beautiful healthy baby. 

But what if that wasn't the case? What if instead of delivering a healthy baby, yours is born with a birth defect like Congenital Diaphragmatic Hernia. Can you imagine seeing your baby hooked up to, what seems like, millions of wires and tubes, each one vital to your babies survival? Can you imagine not being able to hold your baby because they are too sick to be moved and are kept sedated? Can you imagine your baby having to have surgery before they are ever laid in your arms? Can you imagine weeks, days, months and for some even years spent in the hospital before you got to bring your baby home from the hospital for the first time?

No? Well how about this next scenerio. You've sat next to your baby, watching this fight for weeks and were unable to hold them yet. Then you see another family with a baby born with the very same defect but a few weeks younger, get to hold their baby. How does that make you feel? Angry? Sad? Confussed? Think that and so much more. Now imagine you finally get to hold your baby a few days later and your over the moon. Then suddenly your baby takes a turn for the worse and one day you walk out of that hospital, empty armed yet again, only to never go back because your baby didn't make it. 

Here's another scenerio for you. You've finally worked up the courage to tell your family and friends that your pregnant. Your over the moon. Their over the moon. Everyone is in this happy bubble that seems so inpenatrible. You've waited a few weeks or months to finally tell everyone and you can't wait to start shopping for all those cute baby things or even find out the gender of your baby. Everything seems perfect and right in the world. Then one day that bubble burst and you miscarry or you walk into the doctors office for a routine ultrasound and instead of finding out the babies gender, you find that the babies heart stopped. 

Here's one last scenerio for you. You've read this far so you might as well keep reading. Like in scenerio #1, your baby was born with CDH. You sat by their side and watched them fight. You waited patiently to hold your sweet child and that patience paid off. Now your baby is ready to go home. You put their specially-picked coming home outfit on them. You've packed their things, went through all the training, have all their appointments lined up and your out the door. You think this is it. we made it. Only the journey ha just begun because the side effects of being born with CDH are horrible and for a lot, life long. You spend years tube feeding to get your child child to grow. You stay up most the night administering meds and breathing treatments and just rocking that sweet child. You've spent years, always putting them first and yourself last after everyone including the pets.

You get to a point where you forget how tough a life you and your child are really living because you'd do anything for them. The sleepless nights and endless doctor appointments don't matter anymore because you have that sweet child to love. You spent years building a bubble around your own corner of the world. You take every precaution you can to not expose your child to germs or people who are sick because you know if you baby gets sick, they could end up back in the hospital. Despite everything you've done, your child still gets sick. At first it seems like a common cold. You hook your baby up to oxygen and change their tube feeding rate as needed. You do everything you can to help them get through this set back. Then suddenly they wake up and seem perfectly fine and life goes back to your own normal. Just a week later, you baby ends up sick again with the same symptoms. You follow your protocol and do what you did the lest time only after a day or so, you feel something else is wrong. So you load them up and take them to urgent car because your sure they have pneumonia and need an xray and antibiotics. Imagine fighting with the urgent care doctor because he doesn't feel your kids lungs sound bad enough for an xray and is too perky to be that sick. Finally you return home with the order to return if they get worse. That night they get worse. Back on oxygen, feeds have to be stopped. The next morning you take them back to urgent care, hooked on oxygen to demand that xray they wouldn't give you the day before. You sit there holding your sick child, who doesn't want to be anywhere but your arms and sleeping. You look down and their lips, ears and fingers are blue. They rush you back, start a treatment and call for an ambulance. The ambulance driver scolds you for not going straight to ER. You bite back telling him you have protocol set up with the babies doctor and you know what your doing. If things had been that bad, you'd have called 911 instead. 

Your child heads to ER in the ambulance and you follow behind as fast as you can safely drive. You get there to find your child sitting up in the gourney and they smile at you. Your anxiety calms a little and you smile back and tell them how good they're being. They wheel you into a room where they order xrays and ekg to come to them. They try for an IV but couldn't get one. They break for the ekg a xray to do their job then your right back at your child's side, holding their hand and brushing their air from their eyes, telling them whatever you have to to soothe them. Then something happens, that;s never happened. Your child starts seizing and they loose his heart beat. They're able to get it back but it's weak. Your in denial about how serious the situation is when a social worker walks in the room and tells you to call the babies dad and get him down there. You look up and see the Chief of Staff and 20-30 people standing outside the room just watching and you know. You know it's bad. You call your husband telling him to get there quick because it's bad. You text your entire family. You call your pastor. And you sit there and wait for what seems like eternity as they continue CPR and trying to get an IV started. 

Your pastor shows up and you think for just a moment that everything will be ok because your pastor will help you pray for your baby. Then your husband shows up and tyhe doctor takes a moment to explain that your child is septic and they can't get an IV because his veins are so calicified from years of IV's and blood draws so they're doing a bone IV. He's positive your baby has a blood clot and that if he could just get the meds in him to break it up then he can save him. So you put all your faith in a basket and hand it to God with a neat bow on top. Your begging God to save your baby. Your even bartering with him to trade places. Then the doctor looks you in the eyes with despair and pain, looks at the clock and calls time of death. 

You beg him to keep trying and when he says he's sorry, you loose it. You scream "no
", you hit the wall, you run past everyone trying to comfort you, to reach your babies side and you beg them to come back. You can't stop the tears. They just keep coming. Then the guilt sets in because you don't the last words to your baby to be begging them to come back so you tell them it's ok, even though it's far from ok. 

Can you imagine that? No? 

The above scenerios are real. They happened to someone. The first and last scenerios happened to me, to my son. 9 months ago yesterday I lost him to a pulmonary embolism. His last words were "Mommy I tired. I sleep". Naturally I told him to sleep, that this would all be over soon. I feel guilty because I didn't know he was this sick. I feel guilty because I couldn't save him. I feel guilty because without knowing, I gave him permission to sleep and go to heaven, therefor putting my family  through this horrible mess. 

I feel angry because I put all  my faith in God to save my son. He was saved, but not the way I wanted. Angry because I need my son and he was taken from me. I feel angry because life didn't go as planned. I feel angry because I'm angry. 

9 months ago yesterday, was the worst day of my life. I miss my son everyday. Everyday I get up and pretend that I'm ok, but I'm not. How can I be? I lost my son. The fact that I can even wake up every day, baffles. Keeping my faith through this had been so difficult. I can't imagine 9 months without my son, yet I've lived it. The radio keeps playing the song about how he can't believe it's been 9 months already and now his baby is finally here. How if his kids are going to be like him, he wants to be like God. I get frustrated every time I hear that song because my focus is on the 9 months and having a baby. Other parents who've experienced loss have found some comfort in their rainbow babies (baby born after the loss of a child), but I won't have that after Liam. I can't because I can't have anymore kids. So where is my comfort. I keep praying God will heal my broken heart. Everyday, a thousand times a day, I pray this. I can't lose all hope yet. I won't.

Taken 2 years ago today.

Letting Go Of The Anger

This post warrants a warning.

It starts out angry. There are statistics.

But I promise you it gets better. That you should keep reading.

Because the end if worth reading.

But it doesn't mean the same unless you read from the beginning.

 

Picture taken May 5, 2014

 

The movies lie.

TV lies.

They show scenes where someone needs CPR.

Most of the time they're able to save the patient.

It happens quickly,

and the patient is fine afterwards.

Life doesn't happen that way.

 

CPR isn't a cure all,

medical miracle.

The patient doesn't miraculously recover within seconds.

 

I find myself angry because I wanted TV to be true.

I wanted to wake up,

and these last almost 21 weeks to have been a nightmare.

That none of this ever happened.

Or that we were back in the hospital,

and they were able to save him.

But that can't happen.

Not unless I'm truly delusional.

And as everyone around me tells me,

I'm not imagining it.

 

Did you know:

Only 23.9% of adult who suffer cardiac arrest while in the hospital,

and receive cpr survive.

40% of children who suffer cardiac arrest while in the hospital,

and receive cpr survive.

Wikipedia says only 15-23% overall survive cardia arrest.

 

According to the US National Library of Medicine,

95% of patients who suffer from a pulmonary embolism,

and have cardiac arrest at the hospital do not survive.

 

They say CPR can be go on for 38 minutes,

and still show favorable brain function after being revived.

The odds of surviving severe brain damage drop 5% per minute.

Death can occur within 4-6 minutes.

 

When Liam was in the ER,

they did CPR for over an hour before stopping.

An hour.

When most doctors call it after 38 to maybe 45 minutes at the longest.

An hour.

Even though Liam would have suffered severe brain damage if he had come back.

They still tried.

Because he was a little boy.

Only 4 years old,

who had an entire life ahead of him to live.

So they tried even when logic told them to stop.

And after they realized he wasn't coming back,

they cried.

They mourned the little boy they couldn't save.

Their hearts broke for the parents whose lives turned upside down.

For the mother whose heart was shattered into a million pieces.

And for that,

there are no words to accurately describe how it felt,

to have a room and hallway full of strangers,

instantly bonded to you.

 

There are a few things I remember from that day.

 

One being that in the midst of all the chaos,

my brain picked out specific noises.

One specific one was when they called a code blue on another patient nearby.

I remember looking around and seeing 30 or more people who didn't move.

I looked at the case manager who was sitting beside me.

He told be there was an adult who coded but that no one wanted to leave.

No one could leave.

No one could stop watching and praying for my son.

It hadn't hit me until that moment how very serious the situation was.

I was being delusionally optimistic.

I thought in my heart and soul that my son would come out of this.

That he would be saved.

I was in shock.

That's when I started making phone calls and texting everyone.

Asking for prayers.

Selfishly asking some to come be by my side,

because I just couldn't go through this alone.

 

The doctor sticks out in my memory as well.

He had been racking his brain on what could possibly be causing this.

He took the time to try to explain to us as he went.

I remember how he looked at me with hope in his eyes,

and he explained how he was sure Liam had a blot clot.

He felt it was the only thing that could of acted as fast as it did.

The problem had been that Liam's veins were so "calcified",

so scarred up from years of IV's and blood draws,

that they weren't able to get an IV into him.

Therefore they couldn't administer they meds he needed to break up the clot.

My husband had been there at this time,

and without looking at each other,

we both told the doctor to do whatever he had to do to save him.

So they put in a bone IV.

They had never heard of a child receiving this adult medication they were going to try.

And they had never heard of it being administered through a bone IV,

but it was our last shot.

Liam's last chance at survival.

It was mere moments later when the doctor was forced to call it.

They had lost the pale weak heartbeat they had gotten.

Before the doctor called it,

he looked me in the eyes.

I could see he'd lost all hope that was there before.

He looked up at the clock and he called time.

He looked at me with a stricken

heartbroken look.

Told me he was sorry and walked closer to the door and stood there.

I was just repeating "no no no".

I watched at those who were working on him,

slowly back away.

How the lady who was doing CPR at that point,

climbed off the gurney,

eyes starring at the ground.

I remember hitting the wall and screaming.

Then running to his side.

I was crying telling him how sorry I was.

At one point I started to become numb.

I looked up and saw the doctor standing outside the room.

I slowly approached him.

I could tell he wasn't sure what to expect from me,

so he was expecting the worst.

I looked at him with tears in my eyes,

and a tear streaked face.

I thanked him for trying everything he could to save my son.

I hugged him.

Then I away,

back to my son.

 

I was told later on that the doctor had to leave the ER floor for a break.

I was told that the loss of Liam was too much for him.

He wasn't a doctor that cries.

ER doctors don't cry.

But he cried.

Several nurses needed breaks as well.

 

I started writing this to vent out all my anger.

To try and work through my pain.

As I wrote this I was able to connect with a greater feeling than angry.

I started feeling thankful.

Blessed even.

When most people would have given up,

this group of amazing people kept trying.

And when they didn't succeed,

they were heartbroken.

They felt the loss of Liam.

It was significant in their hearts.

So even as my son laid there dying,

he changed the world in many strangers eyes.

 

I know that doctor and those nurses will never forget my son.

And that is a gift.

One day I hope that I can share his life with them,

so that they can know his love and his smile,

and remember that more than his passing.

That he was a strong little boy who spent his life fighting,

and by the time he got to them,

he was just too tired to fight anymore.

And that has to be ok.

One day.

 

Picture taken May 2, 2014

 

 

 



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