Miss Connection

 

I look for you everywhere.

I miss the connection.

I miss the smiles.

I miss cuddles.

I miss you.

 

Everyday I look for you.

Or memories of you.

Flashbacks of you.

 

Every day Facebook shows me pictures from that day,

in years past.

I stare at them throughout the day.

I remember when I took them.

How I felt.

What we were doing.

 

At first,

after you passed,

I had a hard time eating your favorite foods.

They just made me really sad.

Sometimes so sad I was sick to my stomach.

Things have changed.

You loved Dorritos so much.

You always had a bowl full.

I had gotten to where I couldn't stand to even smell them.

You just wanted them so much.

It had been at least a year since I had eaten them.

All of a sudden,

about a months ago,

I just started eating them.

They weren't gross to me anymore.

If left up to me,

we'd eat spaghetti,

pizza,

and a few other of your favorites all the time.

Because while I'm eating your favorites,

I feel a small connection to you.

And that makes me feel better.

 

 I keep some of your toys on display.

Some cars,

stuffed animals,

and other random things.

I don't play with them,

but sometimes I touch them.

I stare at them and try to remember you playing with them.

How many times per day you filled your bucket up with cars,

carried it to another room just to dump it out.

I think of how many times you were sick,

and all you needed was your patchwork puppy baba to feel better.

How when we lost it and I searched everywhere to find it.

And when I didn't find it,

I secretly went online and purchased another one.

Then found the original a week later.

How I think you suspected the new one was different,

but decided you didn't care.

I had to always keep one hidden so you wouldn't know.

Then one day about a year ago or so,

you walked out of your room carrying both.

You had such a huge smile on your face.

I felt like I failed,

but the smile on your face let me know it was ok.

 

I miss these moments.

I just miss you.

I'm trying everyday to be strong.

I've adopted a new saying:

"Liam strong".

Because you kept going,

you kept smiling,

you ever complained.

Even how sick you were always.

I'll try everyday to be strong like you.

To be "Liam Strong".

Love you sweet boy. 

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

 



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.

 

 

 

 

 

 

 



Change Hurts

(March 31, 2015)

 

The truth is I put on a brave face.

Sometimes I fake a smile.

I fake having all my ducks in a row.

I fake being "ok".

I tell people it's up and down,

and that I'm just trying to figure it out.

 

I fake it pretty good.

I put makeup on my face most days now.

I dress in actual clothes instead of just sweatpants.

Maybe if I look fine on the outside,

I'll eventually feel fine on the inside.

 

Truth is I'm still dyeing inside.

I don't know how to cope with that.

 

Yesterday I was desperate for some kind of change.

Something to make me feel better.

I needed a distraction from the pain.

So I jumped head first into changing around the bedroom.

 

Liam's room has been boxes up for while now.

All that was left was what I wanted to keep,

and train table stuff that's going to a friend.

Since Liam's bedroom was actually just half of our bedroom,

 moved our bed completely over to his portion.

From there everything was moved around.

 

I thought it would make me feel better.

I keep thinking that if I just propel forward that things will eventually be better.

Some tell me I've grieved too long.

Others that I haven't grieved long enough.

What I've learnt is that it's not up to anyone else.

My grief is my grief.

It's mine to live with.

Mine to deal with.

And I don't know how to deal with it.

 

So I propel forward hoping that one day it'll catch up to me.

 

It's just a horrible feeling when nothing has changed,

yet nothing is the same.

At least when it comes to loss.

 

I don't know where to go from here.

I'm holding onto the only things I have left with an iron grasp.

CDH awareness.

Memories.

Pictures and the last of his belongings.

 

My heart hurts so much all the time.

I just can't escape that.

Yesterday was a lot for me.

I didn't know if changing around the bedroom would help or not.

Today I'm trying to keep the breakdowns to a minimum.

Today I've had to take every med in my arsenal to combat the depression.

And the anger.

 

There's just so much anger.

Over everything.

My printer refused to work today.

It kept saying no paper no matter how much I tried.

I trouble shot it for 20 minutes before I lost control.

I no longer have a printer.

I just wanted to print CDH awareness magnets for my car.

The printer is just broken.

I don't know how it got broken,

but I lost it after I discovered it.

I threw it.

Hit it over and over again.

Then sat there and cried and screamed at it.

I wasn't really angry at the printer.

I just needed something to take my frustration out on.

I just miss Liam so much.

And the hurting won't go away.

 

I'm supposed to resign my life to my emotional pain matching my physical pain.

I don't know how to handle that.

 

What I want most in this world,

is no longer in this world.

And nothing can fix that.

 

(2015)

I wish you were here, if you were here

Dear Liam,

I wish you were here with us. 

I wish you were running around the house laughing.

Getting into the cupcakes. 

Covered in chocolate. 

I wish you were here "helping" us get ready for the CDH awareness picnic tomorrow.

I wish I could hold you,

Kiss you,

Tell you how much I love you.

I wish you were here so I would hurt so much.

Cry so much.

Miss you so much. 

It's selfish I know. 

I'm sorry for that. 

I wish I could be stronger for you. 

Stronger for your sister. 

But I'm overflowing with so much emotion that I can't keep it in. 

It just keeps spilling out of me. 

That's how much I love you. 

More than my heart could possibly hold in. 

If you were here right now I'd be kissing your little face.

Tickling you and telling you that I love you. 

If you were here right now we'd be outside playing with glow sticks. 

You'd probably be muddy and I'd probably pretend to be upset. 

We all know I wouldn't be but it made you laugh to think I was.

If you were here right now I'd let you stay up way past your bedtime.

I'd hold you in my arms,

Sing to you,

And rock you until you fell asleep. 

I'd whisper in your ear how much I love you. 

If I could rewind and erase the past 14 weeks and change events I would. 

But only if that meant a healthy happy Liam. 

That's all I ever wanted for you.

To be healthy and happy. 

I knew everything else would come in time. 

Truth is we didn't know what the future ever held for you. 

Nothing is ever guaranteed in life,

Especially your life. 

I know your in Heaven. 

I know your healthy and happy. 

But I can't stop worrying about you. 

That's what I do. 

What I've always done. 

I'm stuck little boy. 

Sitting here stuck in the phantom memories of you being you. 

What you would be doing while we watched tv. 

How you couldn't sit still and always had your cars and trains. 

If you were here...

But your not. 

I still love you sweet boy. 

I will never stop loving you. 

Dear World

Warning: this post is heart wrenching packed with raw emotions and the very last pictures of my sweet boy. 

(Taken in urgent care before being transported to the hospital)

Dear World,

I have a son in Heaven.

His name is Liam and he was 4 years, 5 months and 1 day old.

I watched him die. 

The doctors did all they could but it wasn't enough. 

I'm angry.

I'm hurt. 

I'm lost and broken. 

There's no good days. 

Only horrible 'I can't get out of bed' days.

And zombie days where everything's a haze. 

Liam is real.

The pain of loosing him is real.

I can't just get up and walk away from that.

I love Liam with every fiber of my being. 

And now every fiber of my being hurts from the loss.

(Taken in urgent care after he turned blue and they called an ambulance) 

I remember thinking "it's over".

Liam's pain is over. 

Liam's struggles are over. 

Liam's life on earth is over. 

The fight with medical problems is over. 

And for a split second there was relief. 

From what exactly I'm not sure. 

But I have felt guilt ever since that split second of relief.

Guilt there ever was relief.

Guilt that I couldn't do more to save him.

The heartbreak is so intense I can feel myself drowning.

I had watched Liam bang on deaths door many many times and yet survive.

I thought he'd survive this.

I hoped he'd survive this.

I prayed and begged God to heal my baby boy, to help him.

He did.

He took him home to Heaven.

So there's guilt I didn't pray for God to let me keep him.

I thought I was but I wasn't I guess.

Liam looked at me and said "mommy I tired. I sleep". 

(Goodbye kiss)

I wish I had realized he was telling me he couldn't fight anymore. 

Instead I looked at him and told him to sleep.

That everything would be ok that this would be over soon.

I didn't know.

I had no idea what was to come.

I thought for sure he'd be ok.

KDH would stabilize him and transfer him to Children's where they knew him.

The moment he seized and his heart stopped, he was gone.

I believe it with all my heart.

They got a faint heart beat back but Liam was gone.

And instead of dying peacefully in my arms,

He was surrounded by strangers,

Paddling him and doing CPR and poking him.

That's my biggest regret. 

Not being able to hold Liam and tell him how much I loved him as he passed. 

(Last cuddles)

Packing up

The past few days I have been working in Liam's part of the bedroom to organize his things. Deciding what will go where. It's very daunting and emotionally difficult. 

I have several extra large boxes of donations for children's hospital that I've been collecting for the last month. I have a extra large box of Liam's clothes I'm not sure what to do with. Boxes of blankets and toys galore. I'm on overload. 

I decided to make snap decisions with mostly everything because I'm so overwhelmed. 

Today I saw his bed for the last time, set up and waiting for him. 

I was "ok",

Until a few hours later I walked into the bedroom for something and saw the empty space for the first time. 

I wanted to cry. 

All I could do was close my eyes, take a deep breath and sit down. 

Rendered useless and unable to function once again. 

With it went the bedding. 

Knowing the bed was going to a little boy who needed a bed of his own,

To a little boy that would love it and appreciate it,

I just knew that the bedding needed to go with it. 

Something to brighten his day,

Hopefully the way it did Liam's.

With the bed went Liam's scooter,

Large batman,

2 Thomas DVDs,

And a folding Thomas train track with a train. 

The act of handing these over for a kid in need wasant hard. 

The after math of seeing them gone was heart wrenching. 

More evidence that my sweet little lamb is gone and never coming back 

Two weeks ago I boxed up all his soaps and toys in the bathroom. 

They didn't go anywhere but the laundry room for now. 

I thought it was so hard at the time to do that. 

But I was wrong 

The big hitter was the bed. 

That's the tale tale sign.

I'll be I his room for so long,

Then it feels as if I hit a brick wall.

I spin around to realize it's a brick cage and I'm stuck I the middle. 

Cleaning out Liam's room makes me feel physically sick. 

I don't know how I'm going to finish this daunting task. 

It's a nightmare I can't escape. 

His favorite toys are just there,

Lonely,

Collecting dust now. 

Alone without a little boy to love them.

This is what all the toys in toy story were afraid of.

Being boxed up and forgotten. 

Strength Knowledge Wisdom

I don't understand how this little boy could be so full of life and ingrained into our lives and then just one day not.

I'm having a hard time dealing with Liam's loss. 

I've gotten so many people tell me how strong I am for being able to grieve and live at the same time. How strong I am for doing what I did for him for his short life. 

I don't know if that's strength. All I know is that my son was so full of life. He loved life and would want me to continue living and loving it as well for him. For my loved ones. For myself. 

I wake up every morning. I get Lanie around for school. Sometimes I lay back down after she and Justin are gone. Honestly most days I lay back down. I become just here. Every now and then I stay awake and functioning and clean house. I set alarms for everything because time and dates are meaningless to me. 

Days and night blur together and time is lost. 

Earlier I posted the following on Facebook: "Grief feels like being drowned. We have two choices, go down without a fight or kick like hell to reach the surface. I fight even when my lungs burn and my body wants to give up."

A fellow CDH mom and dear friend commented that it was the perfect description of early grief. That later on it would feel like being in a boat and having the waves crash into you. Eventually calm waters with storms further apart. ( paraphrased not quoted of course) 

I can only pray and wait to be pulled onto a boat and then wait for the storms to slow. 

Some days I can lie and tell you "I'm ok". Other days I flat out will say "no I'm not" because I don't have the strength to fake it. Mostly I don't care what others think of how it makes them feel when I talk about Liam or how much it hurts to loose him. On a rare occasion I'll have a moment when the walls fly up and I keep it all to myself. There have even been moments when someone's being rude or insensitive and I've said "oh it's hard for you to be around me? Oh I'm sorry I lost my son and it makes you uncomfortable" and walk away. 

My life and heart feel like the shattered glass from a mirror and now I have to glue the pieces back together even though when I do there will be a huge hole in the middle. 

Life will never be the same. Many people have said things will be better when everything is back to normal. Truth is there is no normal anymore. Our normal was much different than everyone else's with all Liam's medical needs. This was a life most didn't couldn't understand. Now there's this. It's not finding a normal. It's figuring out how to survive. 

I had someone say to me that when things go back to normal that I'd forget all of this. It'll be like it never happened. I was appalled. Truly sickened and shocked into silence. Forget my son died? Forget I ever had one? That would mean his life never mattered. That his story never touched people's hearts and changed them forever. Forget 4 and a half years on my life. Forget all the people I met because of Liam and CDH. Forget the strength and bravity he taught me. No. There will be no forgetting. Liam's life mattered and his story will continue to be told and help others. 

My advice to anyone with a friend or loved one going through such a loss is to be careful of your words and the way you say them. Choose them carefully because you can't take them back and once their out there, the damage cannot be undone. You might think what your saying is helpful but take a moment to step into the grieving persons shoes and think "if my child died and this was said to me, how would I feel?". What you say and do now will make a huge impact on the further relationship with said person. Sometimes the best thing you can do is flat out say "this sucks. What can I do for you right this minute". 

I would never wish this on anyone. And praying for no one to ever have to feel this pain again would be fruitless. So I pray for strength, wisdom and knowledge. May you find your way even in the midst of tragedy. 

49 Days Ago

7 weeks. 

49 days. 

Everything changed. 

That was the last time I held you. 

You looked at me with utter exhaustion in your eyes and you said "mommy I tired. I sleep"

"You sleep baby. Rest. It'll be ok. Mommies here. I love you. Just sleep" I told him. 

I didn't know those were the last words he'd ever say to me. Or that I'd ever say to him. 

"Sleep baby. Just sleep"

He didn't even have the energy to cry as he was being continuously poked as the ER staff tried to get an IV but failed over and over again. 

He closed his eyes. Then they opened minutes later and the seizure started. 

They lost his heart beat. He wasn't breathing. 

It was the scariest moment of my life but still I had faith because it wasn't the first time. 

I prayed so hard. 

"God please just help my baby. Heal his little body. Please Lord I need him" I prayed over and over again. 

They got his heart to beat again but it was so faint. They had to intubation him and bag him the entire time. 

For a bit he breathed on his own yet it was weak and they kept bagging. 

I didn't know as I sat there that I was watching my son die. 

He couldn't die. 

I needed him too much. 

But I watched as he slipped away. 

It feels like it just happened. 

I'm so angry. 

I'm so sad. 

I'm lost and broken. 

I don't know where to go from here. 

I don't know how long I can go on. 

No more "huggies" from my son. 

No more sloppy kisses from my little boy. 

No more "cuddled" from my little lamb. 

No more stories. No more baths. No more hot wheels and sore feet. No more of everything that I love about my baby boy. 

But for Liam,

No more medicine. No more hospitals. No more tube feeds. No more owies. No more pain. 

He's free from all the torture this world through at him. 

That should bring me comfort. 

In a way it brings a small bit of comfort but the pain is so intense that it makes no difference in my dark heart or broken soul. 

I miss my baby. 

From A Grieving Mother

I wish I had something inspirational or motivational to share with you.

But the truth is, I don't. 

I hate CDH.

CDH is a monster. It's chews us up and if we're lucky, spits us out.

It claims too many lives (one is too many) and devastates so many.

As parents to a CDHer, we have to pull up our boot straps and keep trudging forward even on the darkest of days because that's what our kids need from us. That's what the world expects from us.

Even when we just lost a loved one. 

People put an expiration date on grief. They feel like there is an appropriate window of time to grieve the loss of a loved one and then you should be back to "normal" again. 

They don't want to hear you talk about your loss anymore. They don't want to see you sad. They feel like there should be no trace left in your house that this person, this perfect human being, ever existed. If there is then they stop coming over. God forbid you have your sons ashes in the living room!

The truth is, they're being selfish. They don't want to feel the pain so they pretend or ignore it ever happened. It's not because they don't want you to feel sad or that they're trying to help you. In truth, they don't give a damn about you.

There's no timeline or time limit for grief. I had a friend who lost her son give me the best advice I have ever heard and I feel like I should share it.

"The pain doesn't ever go away. You just get better at hiding it"

This rings true to my soul.

I had another tell me that it's going to get harder before it gets better. She advised everyne at Liam's memorial to keep saying his name and to keep coming around. That it wasn't really right now that we would need them but in the next several months. She said at the 2 year mark things started getting a little easier and that we will cherish all the little things because we know how easy it is to loose them. And for one while things are hard and blurry that I should write everything down. More advice that rings true.

Everyone keeps saying that I need to find a way to get over this. There is no getting over the loss of your son who was only 4years 5months and 1 day old. In fact I don't believe you ever get over a death of a loved one, no matter their age. My dad died before I ever turned 10 years old and it still hurts me knowing he's gone and I can't talk to him. I just found a way to continue to live with that pain. If my father whom I didn't really know still hurts, do you think losing my beloved son is going to be any easier? No. 

Another mistake others make is comparing my sons passing to that of someone who has lived a full life or at least made it to adulthood. Loosing Liam is not the same as loosing my grandma. My son will never get to start kindergarten, or graduate college. He will never get to play sports or be a computer geek. He will never get his first kiss or date. He will neve get to drive a car, or get married or have kids f his own.

His life stopped at 4. At pizza and Dorritos and Thomas the train. At duck duck goose and hot wheels and lightening McQueen. 

Why? Because of CDH.

We can only hope and pray that somewhere in the future there will be a "cure", a way to stop CDH from claiming and devastating so many lives so that our future generations won't know the pain that we suffered. 

So spread awareness. Donate to research. What we do now may seem small and insignificant but we should do it anyway because somewhere down the line it could mean the difference between a "cure" and this monster claiming me lives.

Breath of Hope is a great organization to donate too. They help CDH families and donate to research. Nayeli Faith Foundation helps CDH families get back an forth to UCSF. Donates money to UCSF families for meals, gas and more. Or donate directly to hospitals that have CDH research teams like UCSF. 

Any action now, however small, sets things into motion. 

 

One Month Tomorrow

Do you know what I do?

I fix things. 

But I can't fix this. 

I can't make this all better no matter how hard I wish or how hard I pray. 

I'm trying so hard not to question God. 

But every day that passes my heart breaks more. 

I feel like I'm being sucked down a hole. 

The light is gone and I am alone.

I know in reality I'm not alone but grief does weird things. 

I'm sorry I couldn't save you baby boy. 

I'm sorry I couldn't fix you. 

"If my love could have saved you, you'd have lived forever"

I can't make this better. 

I can't take away this unbearable pain. 

I can't bring you back. 

Life isn't the same. 

The color is gone. 

Today school started back up. 

Amanda kept me busy until pick up.

I walked that school without you by my side.

It wasn't right. 

It was heart breaking. 

Tomorrow is one month.

One month ago my world was turned upside down and inside out. 

One month ago I held you as you turned blue. 

One month ago you were rushed to ER via ambulance.

One month ago an EMT scolded me for taking you to Urgent Care.

One month ago since you told me you were tired and wanted to sleep.

One month ago I held your hand and told you it would be alright and to rest.

One month ago  you seized.

One month ago you stopped breathing and your heart stopped beating.

One month ago I watched them do all they could.

One month ago my world came to a crashing halt.

One month ago I held your hand for the last time.

One month ago I held you for the last time.

One month ago I kissed you goodbye. 

One month ago tomorrow. 

I'm a mess without you. 

I walk around with a knife in my heart. 

I have to put on a smile for people and tell them I'm all right.

The truth is I don't give a damn about anyone else.

I don't care if they're done caring or it's too hard for them to come around.

I miss you and the pain of loosing you is by far the worst thing I've ever felt in my entire life and will probably be the worst ever. 

There's no getting over, or around or under this.

I'm drowning here and fighting like hell to reach the surface.

The loss

Tuesday was a nightmare. We're still in shock. On Tuesday December 15,2015 we suddenly lost our son Liam. He was fine, the suddenly not. The doctors are saying they believe he caught a virus that caused an infection and the infection caused a pulmonary embolism. The blood clot from the lung traveled to the corotid artery, stopping the flow of blood from his heart to his brain. They say it couldn't be predicted. 

The ER doc and staff went above and beyond the call of duty to try and save him. 

Two weeks ago Liam got sick. He developed a small cough and a fever. After 3 days was perfectly fine except the cough never went away. It only got worse. Monday morning be woke up with another fever and the cough worse. I took him to urgent care for X-rays to make sure he wasn't developing pneumonia, like I always do. We have protocol in place for a reason. Liam was very active and the doctor said his lungs were clear so the doctor didn't want to do X-rays. So we went home with instructions to return if he got worse and then they'd do X-rays. 

We went home. Liam played and acted relatively normal. He ended up taking a nap, something he rarely did but I knew he wasn't feeling well so it wasn't a big deal. At 7pm he crawled up into bed where I was relaxing and asked for cuddles. We layer there, me holding him as he fell asleep. After he was fast asleep, I put him in his bed.p, hooked him up to his pulse ox and feeding pump. 

At 10pm, he stopped tolerating his feed and de-sating. After hooking him up to 1 litter of oxygen he was fine. It's not unusual for Liam to require oxygen at random because of his asthma, chronic lung disease and sleep apnea. His temp had risen to 103.4. Still it was a long night. He kept waking up every hour or two wrenching and vomiting up stomach acid. I couldn't get his fever to go away. 

At 8:30am on Tuesday the 15th, I got Liam and I around to head back to urgent care. Liam was so exhausted. As we were sitting in the waiting room, me holding him, I looked down to see him a little pale. I looked up and maybe a minute later looked back down at him and his mask had fallen off. His lips were slightly dis colored. Paler than normal. I looked down again a few minutes later and his ears were suddenly blue. I pulled his mask down and so were his lips. I immediately grabbed his hands and his fingers were blue. I turned his oxygen up to 2 liters and as I went to stand the nurse called him back to take his vitals. I got in the room as fast as I could, explained the situation and how he was changing color. Liam was still awake and able to talk. She tried to get a good read on the pulse ox but couldn't get a good read on his heart so couldn't trust the oxygenation.

We rushed to an exam room and they immediately called for an ambulance to transfer him to the hospital. They started a breathing treatment while we waited but with 5 minutes the amublance was there. One of the EMTs thought he'd scold me, telling me that I should never take a kid with such medical to urgent care that you always take them to ER. We have protocol for a reason so I was pissed that he was wasting time and telling me how to do my job as his mother and care taker. 

I followed the ambulance to ER where I found Liam sitting up on the gourney waiting for a room. He looked pitiful s he said "mama". We got him into a room then the nurses tried their first attempts at getting an IV into his right arm  it failed. They took X-rays and EKG with portable machines then tried again for an IV in his left hand. Liam never fought it because he was so tired. It was like he couldn't feel it. I stood there holding his other hand and rubbing his head, talking to him. He looked at me and looked more tired than I had ever seen him. It's like the light wasn't really there anymore. He said "on my I tired. I sleep". I kissed his cheek and told him "I know baby I know. Just close your eyes and sleep. It'll all be over soon". 

Liam closed his little eyes. Next thing I know the nurses head peeked up at the Monitor. Her head shot back to be and asked if he was seizing. I looked down and watched as his eyes opened up, his pupils displayed and he began seizing. His tongue poked out and his little body shook. The nurse yelled for help and I jumped out of the way. Code blue was called and suddenly the room was full. Liam was intimated and bagged and chest compressions started. He had stopped breathing and his heart stopped. 

They tried for IVs but quickly realized the problem was that after years of IVs and blood draws, Liam's veins were just too scarred. They're last resort was a bone IV. They shocked his heart with the baby pads and got his heart working again but he wasn't breathing. I remember someone e approaching me saying he was a social worker for the hospital and asked about dad. Said I should call him and get him down there asap that it didn't look good. I was in shock but grabbed the phone and called Justin telling him to hurry. That Liam wasn't breathing and they had started cpr and it was serious. I called our pastor and told him to pray. Then texted my friend to tell her I needed her. 

When he started breathing it was irregular. The doctor got a portable ultrasound and started looking for a blood clot saying that could be the only thing that could cause him to go down hill so fast. He found what he thought was the blood clot and tried and tried to break it up. 

Our pastor was there in minutes and I remember I ran to him as soon as he rounded that corner. We prayed and prayed and prayed. Then Justin came and we prayed more. I sat there crying and begging God to heal my baby boy, that I needed him and don't take him. 

The room was so full of people. Probably around 20 working on Liam or those getting things for them. I remember turning my head seeing the hallway full of staff watching and praying. The doctor was upset and refused to give up. I remember him asking what time they started cpr and a nurse saying 11:11a. They tried all they could then he decided to try something more drastic. He wanted to use adult meds on Liam, something not usually done on a child and his only way to deliver it was through the bone IV which was unheard of. 

Liam's pulse was so weak. Before they got a chance to use the meds, Liam's heart completely stopped. With tears streaming down his face, the doctor called time of death. I didn't believe them. I said "noo!!" Then he looked at me and Justin started crying and I lost it. I remember hitting the wall and  wailing. Then running to Liam's side saying "no no no no please come back Liam. I need you baby. You can't leave me. No!i need you.... It's ok it's ok baby. I know. I love you so much. I understand. Mommy loves you". 

Everyone was saying they were sorry but I couldn't take my eyes off my baby. Then my friend Amanda was there, with her arms around me and the crying only got worse. I remember not wanting to see him like that, feeling like I just had to take everything off him. I carefully hooked the leads then tried taking all the lads off. They kept saying that they'd do it when they got the clear that they couldn't do it yet but my brain didn't hear them. Finally the one girl nurse that had been there the whole time since we got there placed her hand on mine. I looked at her as she told me they would do that. 

My baby was gone. I felt lost and broken. I still feel lost and broken. 

(More to come)