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.

Click Here for the entire list of journal prompts.

Processing

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

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

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

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

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

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

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

"So he needs that to breathe?"

-Yes

"Does it hurt him?"

-Not at all. It just helps him.

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

-Yes

"So that makes him like an astronaut!!"

I just stared at them letting that sink in.

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

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

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

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

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

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

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

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

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

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

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

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

          

The Tight Rope

2/2/2015 Little Liam was exhausted so he climbed up in my lap and fell asleep. It seemed by lap was his happy place. I'm glad I could give him that.

Today has been emotional. Liam's big sister is getting ready to turn 9. We're throwing her a surprise birthday party. On my way home from work I thought about how much fun it would be. Then a dark fog descended. Liam wouldn't be there. He will miss all the fun and we will miss his smiling face and his laugh.

How am I supposed to do this? How am I supposed to cope with this kind of pain and continue to live? I sat there in my car crying uncontrollably. My baby boy was gone. Just like that the scab was ripped off and I'm once again bleeding.

I sat there and thought about my daughter. I sat there and thought of what my husband would say once he saw all the party supplies. Especially the pinata. He's so predictable that I imagined he'd tell me that I was going overboard. I imagined my response to him. "She's the only baby I have left and despite whatever you may think, I'd do anything for her. I only have 1 now. My boy is gone. I can't have anymore kids and we will never be in a position where adoption is an option. She's all I have so yes, I'm going to spoil her on her birthday and any other time I feel like it."

All day I've been thinking about how every happy time, every holiday, every celebration will always have this shadow lingering in the corner for me. Last October, we threw Lanie her first Halloween party. We invited a ton of kids and our friends and family. The yard was full and over flowing with joy as the kids danced to the monster mash, gorged on sweets and played games. I imagine that Liam would have been right in the mix playing and laughing if he had been there. I could almost see the shadow, about his size, weaving through the crowd.

I'm at that "stage" in my grief where I walk this tight rope strung from two skyscrapers. As long as I keep moving forward, don't stop and balance correctly, I won't fall. It sounds easier than it really is. I think walking a real tight rope would be easier than the emotional one I'm walking now.

When The Fog Has Lifted

The last year since Liam's passing was a fog. A fog of denial, anger and pain. I kept waiting for Liam to walk through the door of his room and say "Morning", or to wake up to find this has all been a nightmare. Every morning I woke up to relive the heartbreak all over again. It's been a vicious cycle.

I did all I could to keep busy so I wouldn't just lay there crying and useless. I did what I had to to survive this past year. Including months spent hiding in bed refusing to face reality, jumping in head first at church, and even returning to the workforce. Each move I made had it's own motives and implications.... to survive.

Losing Liam shattered my soul to the point I wasn't sure I could be put back together again. I was sure even God himself couldn't find all the pieces to make me whole again. All I knew with absolution was that I loved and missed my son, that I needed him still.

When Liam was born, huge changes happened in our lives. I was so broken that I thought there was no coming back. When Liam survived CDH and came home from NICU, I quickly picked up the pieces and went into survival mode. We all went from living to just surviving. For the past 5 1/2 years all we've done is survive. We didn't even realize. Our world became focused on Liam. What was right for Liam. What we had to do to keep him healthy. Even retreating into our own bubble and shutting others out because that's what we had to do to make sure Liam survived. For us to survive, he had to survive.

I didn't know if I would survive this last year without Liam. The pain has been too great. I was for sure I would die of a broken heart long ago. I would say that I don't know how I made it, but as of yesterday, that's no longer true. For years everyone has asked me how I dealt with having a chronically ill child like Liam. I always said I wasn't sure that I just did. Sometimes I would joke and say things like "lots of coffee" or "if Liam could smile through it all then surely I could too". A few times I went as far as to state "it's what any parent would do for their child", despite the fact that I knew that it wasn't true. My mothers wouldn't have taken care of me. As it was, she gave us. If i'd been born like Liam, she would have surely walked out that hospital the first chance she got and never looked back. (And honestly I could care less at this point in my life)

While enduring everything we've gone through, I didn't have the answers, but now it seems clear as day. I was already suffering from depression and PTSD long before Liam was born. His traumatic birth only made my PTSD worse, more complex. My brain shut off certain parts of my brain and went into survival mode. I was constantly on alert and aware of my surroundings. Survival mode is a pervasive sense of fear, stress, and anxiety, it's a overactive response to stress. My muscles have been tense for 5 1/2 years and as a result have not been able to relax, no matter how many muscle relaxers I take. I survived because my brain shut off emotions in intense situations. There were ratification's like flash backs and extreme insomnia. The inability to get motivated or lose weigh and so much more. How I survived his passing, is much how I survived his life. Survival mode.

A few days ago things changed. Something clicked. I realized then that at that moment, the fog of denial was gone. He wasn't going to walk through the door of his bedroom or I wasn't going to wake up from a nightmare. He was gone and that was that. I wrote the following on Sunday:

Somehow, the pain, feels different. Like losing all hope that I would wake up and the last year was a nightmare, has changed things. The the pain is there and it's more raw than ever before, but somehow things are different. As if this it's not just a thought in my head, but something concrete I can touch. Like the denial has been lifted. In accepting that this isn't a nightmare, I think I've inadvertently accepted Liam's passing. Maybe accepted is the wrong word because I'm not ok with it by any means. I just know he's really gone. I won't wake up one morning to see his face smiling at me. It's just real. No more fog of shock, or fog of denial. It's raw pain. It's like a gaping and open wound that has been open for so long you've become so used to the pain that you don't cry constantly but only when the pain gets worse. Like when missing him gets worse (and it still happens a lot). I miss Liam constantly. It's when I'm flooded with emotions of missing him, loving him and memories that I can't hold back the thick tears and the sobbing. I was sitting in my car yesterday at church when I realized this. The post before this was what I wrote on my page yesterday. You can see the second I realized when it all be concrete. What comes next? I have no clue. I'm still lost in my grief, it's just different now.

Today I came to another realization. We've been in survival mode for 5 1/2 years. It's time to start living again. Time to work our way towards living at least. If it doesn't make us happy, we shouldn't do it. If burring our feet in the sand just to feel it between our toes makes us happy, then that's what we should do. If riding scooters, reading pointless books or painting rainbows makes us happy, then that's what we should do. We have to figure out how to enjoy life again, how to really start living and stop living in survival mode.

Posted earlier on my Facebook:

For so long we've been trying to put square pegs in round holes. Meaning we've been trying to make things fit when they just don't and it's time to make changes. Work with he cards we've been dealt and do what works best for us. I'm sad to see certain things change but for years, since Liam's birth, all we've done was survive. Our motto was to do what ever we had to to survive. At the end of he day, that's all that mattered. It's important that we try to do more than just survive now. We need to find a way to live again and that includes doing things that make us happy in the moment. This isn't just some New Years resolution. It has nothing to do with that. When things clicked Sunday and the denial lifted of Liam's passing, with that brought the notion that it was time to start living again, or at least put ourselves on the right path. Trying to live again will help us to heal, something we desperately need.

We won't ever be the same people we were before Liam was born. It's impossible to forget the love we have for him. We have to find who we are now. Together.

Liam holding a string of lights December 2014

Just 4, Only Ever 4

We are officially in the holiday season.

A season that I once loved and was excited for.

A season that use to bring me great joy.

A season that now brings me great sadness and heartbreak.

Yesterday I plastered a smile on my face as I went to work.

My heart broke as I watched the kids watch Charlie Brown and the great pumpkin.

It was a tradition to watch it with the kids before Halloween.

A tradition that I couldn't bear to do this year.

Yet there I was put into a situation where I couldn't walk away.

I delivered treat bags to my daughters class.

All the kids were so excited.

I smiled for them.

Thought about how nice it would be to be able to smile without faking it.

To be able to be so innocent again.

My husband and I have been struggling with Halloween without Liam.

I relented and took our daughter to our church's carnival.

I relented again and took her trick or treating because she was sad we weren't.

All I wanted was to stay in bed a day and wallow in my heart break.

I wanted to hide from the world until Halloween was over.

Instead I had to suck it up for my daughter while her dad got to stay home.

I'm an emotional wreck today.

I can't even put into words how yesterday felt.

How today feels.

It's like I'm in shock all over again.

Liam's Halloweens are summed up with a mere 4 pictures.

4 Halloween's.

Only 4.

Just 4.

That's all we have.

That's all we will ever have.

4.

Four.

Just 4.

Trust in You

Hubby made a comment earlier.

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

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

My brother in law,

nephew,

and husband,

all stopped working to listen to the lyrics.

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

and on the radio a million times,

they never stopped to actually listen to it.

The song talks about how God is always with you.

How you ask God to give you miracles,

but it's not always how you wanted them,

or when you wanted them.

It's about always trusting in God,

no matter what hardships you face.

When I choose this song for Liam's memorial,

it felt right.

I was so broken and so lost.

Truth is that I still am broken.

I will always be broken.

I had two choices when Liam passed.

I  could be angry and deny God.

I could fight his every push.

I could turn away.

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

at His mercy,

and give him all of me.

I choose to throw myself at God's feet.

I choose to offer myself up to him.

I choose to follow God's path for me.

Why?

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

I needed to trust that my son was safe.

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

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

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

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

The very truth of the matter is that,

if it wasn't for God,

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

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

It reminded me that God was always there for us.

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

We aren't navigating this world without a map.

He has seen everything.

He knows everyone's futures,

their paths.

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

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

October 2014

Capture Your Grief Day 2

Capture your grief day #2: Your angel's name.

Liam Michael Bryant 

It was a bit difficult naming Liam. When I was pregnant with my daughter, we agreed on the name Landon if we were having a boy. I just figured we were to use that name but for my husband,nit didn't seem to fit. The whole family had a say when it came to his name. At least we welcomed their opinion. We weren't naming him Andy, like his grandpa and uncle. After all, we had given Lanie that namesake. One day, as we watched a movie, Justin suggested we call him Liam. I rubbed my belly and said the name a few times. A smile crept over my face and I agreed. Liam it would be. It was perfect. 

It's kind of funny when we explain our kids names to people. Both names came from movies, or actors. Lanie was from 'She's all that'. Liam was inspired by Liam Nesson. A few years ago during one of Liam's UCSF stays, I busted out laughing at how appropriate the name was. His first name being Liam and he had underwent a procedure called a Nisson Fundiplication to fix his Hiatal hernia. For days I'd laugh at this. Nurses laughed at this. I still kind of giggle over it. 

Then there's Liam's middle name, Michael. We wanted his middle name to mean something. To be honest I fought for Bevin, so he'd be named after my dad. I knew it was a long shot suggesting it, but I tried. Liam Michael was just too perfect for him. Michael is a family name. He was named partly after Justin's uncle who passed away and partly because I had remembered I had a Michael on my side as well. 

From the time Liam was a tiny 2 pound 4 ounce baby in NICU, until the day he passed, I would rock him and sing "Liam Michael. Liam Michael. Liam Michael" over and over again. It started out as me not knowing what to say to this tiny baby fighting for his life but him needing to be talked to so he would recognize my voice. Also because talking to babies who are in the NICU, helps them thrive. Late nights, sleep exhausted but trying to soothe a crying baby, I would rock him and sing his name over and over. It worked like a charm. This was the go to lullaby. I remember rocking him that last night, trying to soothe him. I sang his name over and over again. I told him I wasn't going anywhere. I told him I loved him. I find that that lullaby goes through my head so often, like it's trying to soothe me. 

I hear his name, Liam Michael, and there's so much power in those words. They can make me smile, or bring me to my knees. I miss my son so much. I miss his laugh and tripping on his cars and trains. We were just talking about how sometimes we still feel the tug at the back of our shirts, like he used to do. And how sometimes we can even hear his laugh. I had never told anyone that before. Then at the memorial service at Children's hospital last Friday, our good friend Manny brought it up. He said one day he laughed and said "where are you?" And he swore he heard Liam's laugh. My jaw had dropped. My niece then said its happened to her before. In tears I proclaimed the same, saying I didn't want to say anything because I was afraid everyone would think I was crazy. 

I'm Supposed to be...

(Taken December 14th, 2015. The day before he passed)

Last Sunday God gave me just the tiniest piece of peace in my heart.

It's made dealing with the grief of loosing my son, easier I guess. 

It didn't take away the pain, but it made most moments bare able. 

Tonight the grief is overflowing. 

I'm crying fat tears that I can't stop.

It hurts. 

My heart hurts. 

I'm missing him.

How could I not miss him?

Tonight I'm just letting it out. 

Letting it flow. 

I don't understand how we got here.

How I could love this little boy so completely.

And now he's gone. 

Just like that.

The bad thing about PTSD is that no matter how much faith you have, it still rears its ugly heard. 

It still taunts you.

It still makes you relive the pain over and over again.

I've been watching videos of Liam today.

I could almost pretend he was asleep in his bed. 

Instead of playing in heaven.

I hear myself talking to him on the videos and I can hear how happy I was.

I could hear how much I loved him.

I wonder, why me?

Why my son?

God didn't do this. 

It's not punishment.

He's didn't take my son because he needed another angel.

He saved my son when his body couldn't continue any longer. 

God knows how much I loved my son. 

He knows how much it hurt to see him sick.

God knows I would have laid down my life to give my son a long health one.

God knows what's in my heart that I can't put into words. 

As I sit here trying to stop crying and failing, all I keep thinking is,

"I just want my baby back" 

"Why am I being so selfish?"

I'm supposed to be happy for him, that wasn't forced to live a long life of suffering. 

I'm supposed to be happy that he got to go straight to heaven, never having sinned. 

He never had his heart broken, truely broken.

He never felt unloved or unwanted.

I am happy for him. 

But I still miss him so much that it just hurts beyond words sometimes. 

I know that I'll continue to put one foot in front of the other,

Count to ten,

And find my way. 

I know every second of every day will be tinged with the loss and the pain it's caused.

I'm just trying to survive every ten seconds until I can wrap my arms around my son again. 

Sue and Liam

5 years ago today, we traveled back to UCSF for follow up appointments. A clinic for kids born with CDH ran by the specialist that treated our babies in their NICU. I went in praying for good news, but knowing in my heart that we would receive bad news. One day I will learn to trust my heart (or gut) because the news they gave us brought me to tears.

5 years ago today, I sat in a room with 3 CDH specialist and listened to them tell me that my son was failure to thrive. They told me he wasn't gaining weight properly, and that he needed a feeding tube. Despite exhausting myself in an attempt to get Liam to eat and gain weight, I had failed. I felt that I hit rock bottom. I had failed as his mother. The specialist tried to tell me it wasn't my fault and that they could tell by the detailed records I kept of his feeds and meds that I had done more than any normal mother. I had, at some point, stopped being his mother and became his nurse. It was how I coped with my PTSD and anxiety, After it was set that we would once again travel to UCSF for a feeding tube, we left. I felt broken. Broken and hurt.

There was something we couldn't leave SF without doing.  We couldn't not stop and see our favorite NICU nurse and primary Sue. We had to take Liam to see Sue. Sue became like family to us while we were in the NICU. Liam and Sue had a special bond. Liam loved to fake being asleep (under the paralytic) but when Sue would turn her back to him, he would open his eyes to try and see her and he would smile. Before she turned back around, his eyes would close and he would be back to pretending. I tried to tell her but she said he couldn't be awake because they had him under the paralytic. She'd turn her back and his eyes would fly open again. I could swear he was laughing at her. Finally she believed me and sat there staring at him for so long, he couldn't help but open his eyes. We all had a great laugh. Of course after that they had no choice but to increase his paralytic.

When Liam would cry, she would place her hand on her hip, shake her finger at him and say "hey! there's no crying in baseball!". Liam would stop crying and smile at her. She knew that when he didn't stop crying that things were serious. In the picture above, Liam is snuggled into Sue's arms, happy as can be. Shes softly talking to him, telling him what a good boy he is. He of course, smiled at her. 

As Liam grew, I would tell him about his NICU nurses Sue and Cindy. I'd show him pictures of himself as a baby and he'd say "awe cute baby". When he found out it was him he'd say "What!? No! I no baby" and I'd laugh. I would tell him how amazing his nurses and doctors at UCSF were and how they "fixed" him. He was always so proud of his scars. 

Thanks again Elizabeth Nelson and Nayeli Faith Foundation for helping us make this trip and this memory possible. The Nayeli Faith Foundation helps families with kids at Ucsf born with CDH. They help with parking passes, food cards, hotel rooms, gas cards and more. If your looking for a foundation to donate too, this is a good one. Check out their Facebook page for more of the good work they do.

Blowing Dandelions

                                  

(Liam September 21st, 2015)

Dear Sweet Liam,

My little angel,

I don't understand this life without you.

Your pictures,

Your things,

And this hurt,

Are the only reason I know you really existed.

I go through each day like a zombie,

Never really living,

Just existing.

I'm trying to see the light in this storm.

It should me simple.

It is simple. 

You were hurting,

And now your not.

You lived a life of pain,

And now your suffering has ended.

I wanted so badly to believe that you were ok.

Every night I prayed for your health.

Lord please make each day better than the last.

Each day was better,

Even through the set backs.

It was better until it wasn't.

I know your suffering has ended.

I know your healthy and happy in heaven.

I wish I could see it.

I wish you were happy and healthy here.

Everyday I wake up and pray.

Lord please let me make it through today.

Throughout the day I pray.

Lord please let him be ok.

Lord please tell him I love him.

Lord please hug him for me.

A mother should never have to say these prayers.

I mother should never have to lose a child.

But here I am,

Where you are not.

Lost and broken inside.

Part of an exclusive club of heartbreak,

That should never exist.

If I could hold you,

I would.

If I could kiss you,

I would.

If I could whisper in your ear that I love you,

I would.

Instead I tell the butterflies.

I tell the sun each morning.

I blow dandelions and wish for you.

I love you sweet boy.

Until I get there,

Please hold that piece of my heart close.

(Image found on Google that I edited using PicsArt)

Choo Choo Goes the Train

I don't even know how to begin this post. I'm feeling very sad and missing my son right now. About a week or two ago I asked if our church would like Liam's train trable for the kiddos. They said yes. I knew it would be hard. I expected it to be hard. After all, it was one of Liam's favorites. 

(Image is of Liam playing)

His love for trains started in January of 2013, when I purchased his train table on clearance. He was immediately drawn to it and spent hours a day driving trains around the track. 

(Image is of Liam playing)

As soon as Liam could speak, he started asking for new trains, so we started collecting them. I remember how adamant he was about wanting that Rosie train. We were at Toys R Us, just the two of us, browsing. I always spoiled Liam with extra little toys because of all he had to go through. I felt so guilty that he was so sick, even though it wasn't my fault. I never flinched when I bought a new train, car, whatever. He deserved it. 

(Image is of a troublesome truck, Rosie and fatbed)

I can't tell you how many times we rebuilt the track and how many different ways. I use to sit there on the floor with him and just watch as he happily played. He always wanted me to watch as he pushed the train and said "choo choo". Many times, he'd start driving the trains across my legs and sometimes even my face.

After Liam passed away, I didn't know what to do with the train table. I wasn't ready to get rid of it yet. For months it sat there, set up and ready for a little boy, who would never come back, to play with it. When it became too depressing to look at, I boxed up the track and trains and threw a table cloth over the table. For the last few months it's been used to hold picture frames and battery operated candles and a basket of kids books. Liam's books. It's always just been in the way, taking up space. For awhile, I needed it there, taking up space. Proof Liam was really here. I still need that reminder. I knew I couldn't keep putting it off. 

(Image is of Ozzy sniffing the track)

Today, I decided I had to stop procrastinating. I dug the track out of the closet, uncovered the table and set to once again put together Liam's favorite toy. I wanted to cry. Ozzy was once again confused and had a sad look on his face. He sniffed the table and track,then laid under it like he always did. He looked up at me like "where's my Liam?". 

(Image is Ozzy laying under the train table looking up at me as if asking where his Liam is)

I wanted to ask him the same. Where's my Liam? Shouldn't he be running into the room asking me what I was doing with his toys? Shouldn't he be saying "play trains mommy?" 

I look at this table, void of a little boy, and see another broken piece of my life. Another reminder that our home, and our hearts, are missing a wonderful little boy with a beautiful soul and a giant heart. And it's not fair. Why couldn't my son be saved? Why do we have to hurt so much? Why can't we have our lives back, our little boy back? 

(Image is of Liam playing trains while sister watches him and tv)

I sat there in ER, watching them try to save my son and I prayed harder then I ever prayed. More than when he was born sick. I had more faith that God would save him the day he died then I had those days after he was born. So why when my faith was at its highest, why shake it and test it? I'm so angry and I'm so hurt, but I'm still here praying. I'm still here refusing to stop believing. 

So now, here we are, having to give away yet another item that was my sons. I'm not sure if I'll ever be ready to let something go, but the logical part of my brain tells me that I can't keep it all. That Liam won't be coming back for it. And I pray that he won't be mad at me for it either.

I showed up early to our Wednesday night kids program, table in tow. I wanted to make sure I had it in the nursery, put a safe distance between it and myself, and had my emotions under control before people started showing up. Today I peeked my head into the nursery to watch the kids playing with it. I don't know what I thought would come from it. Maybe some peace. I don't know how I felt as I watched one of the little girls play happily. I didn't cry. I wasn't completely overwhelmed with sadness. Just a little sad as I remembered all the hours Liam spent playing with his trains. I walked away knowing that this toy would bring joy to many kids in the next coming years. 

(Image is Liam's train table, being played with in our church nursery and it's beautiful mural) 

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.

Standing Tall

(Taken September 9th, 2012)

Yea I know he's crying but I took a moment to capture this moment in a picture. What appears to be nothing out of the normal to you, was something huge in our world. The aftermath of CDH was tremendous. Sure he flew through NICU at a "mere" 48 days when he wasn't expected to make it but we lived with the devastation of CDH every day from the moment he was born. 

So here is my son, 14 months old at the time. Just a few months prior to this, right before his 1st birthday, he learnt how to sit on his own. He was still wobbly and fell over more often than not, but it was a huge feat for him. Then at 14 months old, he graced us with another trick and pulled himself into a standing position all on his own. 

We were in the hospital and I had "mistakenly" taken a moment to use the restroom. Because of this he had to be put back into the crib. He was fine until I got out of sight for longer than 30 seconds. When I didn't show my face after his grace time, he started crying. Now remember, Liam still did not talk. I rushed out to find he pulled himself into a standing position. I then started crying. 

I snapped the picture then ran to his side. I hugged him, but left him standing because I couldn't get enough of this wonderful sight. The nurse walked in to find us both blubbering away. I started laughing through my tears and Liam followed suit. Soon the tears were gone and it was all laughter. I explained to our nurse what had just happened. She excitedly told Liam what a good boy he was then explained how we forever more, would have to not only keep the bars all the way up at all times, but put a hood on the crib to prevent climbing. I laughed. Liam's great feat resulted in a full on cage to keep my monkey boy in. 

Some of the after effects of CDH were low muscle tone, delayed development, poor fine motor skills and more. Being in the hospital as much as he was, also affected his development. Liam spent more than half his life stuck in a hospital. If you were to adjust for that, he would only be around 2 years old. Because of hard work and determination, he began catching up. It took daily activities at home but we made it fun. By the time he started preschool in 2015, he appeared "normal"*. He was running and jumping with the other kids. He couldn't keep up, but he tried with all his might. 

*The term "normal" here is a realative term. I know that normal isn't really a thing so when I use this, I'm referring to health wise. You have the "normal" kids who are healthy. Then you have the other kids who aren't healthy, like Liam. When I say things like "we wish we had a normal life" to referring to the fact that we wish for healthy. And now that we've lost Liam, our lives are just even farther from normal as you can get. 

Cold Hard Truth

The truth is, 

having a child changes you. 

Loosing a child destroys you.

I honestly don't think I'll ever ok again. 

I will always be a broken,

Shadow of my former self. 

And that HAS to be ok. 

I lay here on the couch.

The first night in a week I've started falling asleep before 4am. 

I close my eyes and I see Liam. 

And again sleep eludes me. 

My sweet boy laughing because I'm tickling him. 

Him crawling into my lap at bedtime for snuggles and a song. 

His middle of the day naps in my arms because he refused to fall asleep anywhere else. 

Me whispering "I love you Liam". 

The millions of times I whispered in his ear as he slept,

"I'm so proud if you little man. I love you so much. I need you so much. Just keep fighting". 

And I'm broken all over again. 

No I not ok. 

My heart is broken. 

My soul shattered. 

It hurts so much, I don't know if I can take it. 

But I do. 

Every day I do.

Every night I do. 

I feel so lost during the day. 

Feeling as if I should be doing something.

That I'm forgetting something 

I'm always looking at the clock worried about the time. 

And today it clicked. 

I'm still on his schedule. 

I still get up to feed him before I realize, he's not here. 

Sometimes I find myself in the baby aisle, starring at the diapers.

Hand stretched out to grab them. 

Then I remember. 

I catch a glimpse of a cute boys outfit,

I still stop in my tracks to look at it.

Then I remember. 

I'll have his favorite foods in my hands

Then I remember. 

A few times I opened the back door to unbuckle him from his car seat. 

But he's not there.

His seats not there. 

Last night I was up in the middle of the night. 

On my way back to bed I stepped on what felt like a Hotwheel.

My heart expanded in joy,

And I smiled. 

Then I remembered. 

I feel like my life is a cruel joke. 

You like I've been stuck in a dream that's so realistic. 

There are moments I don't know which reality is real anymore. 

But the wooden box,

Sitting on the shelf,

That's real. 

That's my reality. 

I can't hold my son and hear him giggle anymore. 

All I have is a box. 

A cold hard box,

To match this cold hard reality.