Breaking Down

9/19/2012 Life through the bars. Liam's 13th hospital stay at just 14 months.

Just when I start to grasp some resemblance of "put together" a video pops up and I lose what little grip I have. Life isn't fair. In fact it sucks. I'm angry and hurt. It's been a rough month. I've tried to hold myself together but the glue just won't hold. Last week my iPad broke. It just turned itself off. After dealing with Apple support, they came to the conclusion that it had a hardware malfunction. I have no warranty because it ended last year so it could cost me $299 to fix it if it's fixable or I have to outright buy a new one which is like $600 for the same one. Stay with me here because I promise I have a point to this ridiculous "my iPad broke" story.

I didn't realize before it broke how much I actually depended on this thing. You see I have really bad anxiety. I have games and books on that thing that help me keep it under control. Sounds stupid I know but if you suffer from anxiety, you know how serious this is. I also HAVE to read every night before bed. There's no, and I mean NO way I can not. If I don't then I can't sleep. Not even kidding here. Since it broke, I've had to result in reading books on my iPhone, which isn't the XL. Hey at least it works.

This iPad though I also use to run my online businesses. I'm an It Works distributor as well as have my own online boutique. All info for both were on said broken iPad. I also manage and post to Liam's Facebook page as well as Shooting for Liam and Sent from Heaven. It's also the only device I used to check all my emails. Basically my whole life was on that thing and now its a pile of junk.

What frustrates me even more though is that fact that all the games I downloaded for Liam are on there. Sure I could re-download them on a different device but all his progress is lost forever. He passed away so it's not like he could just re-do it all. When you lose a kid, you tend to hang on to as much of them as you can for as long as you can. At least the pictures and videos I had on the iPad were backed up on the cloud as well as an external hard drive.

So since said iPad has died on me, I've been on edge to say the least. Then came yesterday, the hay that broke the camels back. First my car battery was dyeing on me and had to be replaced before it left me stranded. Then I hang my brand new letterboard on the wall on a hook that's been holding something heavier for years now, and not 5 minutes later it crashed to the floor bouncing off the counter then shattering into a bunch of tiny pieces. The frame is a goner. That's when I lost it, something that was unavoidable apparently because I couldn't stop it for anything.

I found myself alone, hiding under the blankets on my bed, crying. When I could finally hold myself together I got up for something. That's when I found the cat scratching up my brand new purse that my aunt had just given me for my birthday. Again, I lost it. Like seriously WTF?!?! Now that you've got an idea of how this last week has been, imagine two month of crap like that blindsiding you. Sucks right? So here's the hook I promised you....

My melt down wasn't even about any of those things. Sure I'm upset about all of it (especially that iPad) but did it deserve an all out sobbing melt down? On it's own no. But coupled with what I'm going through, hell yes!

My husband commented "Hey it's ok. It can all be replaced". Innocent enough. My reason?

"Oh we can just go replace my letterboard? With what? Oh yea like I have $299 laying around to fix my iPad. Sure why not. Lets go do that! What about my son? Can't replace him!"

And there it is folks. The root of the problem. My son whom I lost and can't replace. The one that I miss every second of every day.

Today was rough but I barely had myself put together. The hold was fragile. Then a video popped up of Liam 2 years ago today and again I can feel myself being pulled under water just like that. That's child loss. Every day I live with ups and downs. Some days are better than others but I never stop missing Liam.

Click here to see the video of Liam talking. 9/19/2015
Click here to see a video of Liam laughing 9/19//2012

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

A Second Birthday In Heaven

I sat down many times to post about Liam's would be 6th birthday.

Every time I couldn't find the right words, but I'm starting to realize that there will never be the right words when it comes to the loss of my son.

As a mom you do all you can to keep you babies strong, healthy and even happy.

So when Liam was born with CDH I blamed myself even knowing there was no blame to be made.

I had spent every moment I possibly could by his side as he fought for life in the NICU.

When we brought him home I become more than his mother.

I was his nurse.

His nutritionist.

His physical therapist.

I was his caregiver.

All of that came before being his mother because his health came first.

I sucked it up and did whatever I had to do to help him.

After all I was his mother and it was my job to care to him at whatever cost.

When he came down with a "cold" in November 2015,

I followed all protocol we had set in place with his doctors.

I followed every step.

When it seemed he was getting better then suddenly ill again,

I took him into urgent care for chest X-rays as per protocol.

They refused saying his lungs sounded to good and he was too happy to have pneumonia.

So I took him home feeling that everything was ok.

But as the night went on I became uneasy.

He got worse each hour that past.

I wanted to load him up and take him to Children's hospital but because I had just taken him to Urgent care we reasoned that it couldn't possibly be so bad that we couldn't wait until the morning.

The next morning everything happened so fast and before I knew it I was sitting in the ER being told to call my husband and get him there asap that things were more dire than I could have imagined.

Next thing I know I listening to the doctor call TOD.

I was angry.

I was shocked.

I didn't want to believe it.

I begged Liam to come back.

And I felt like a failure.

I was his mom.

His nurse.

His caregiver.

I knew him better than ANYONE.

I should have been able to save him.

But I couldn't.

Still I blamed myself.

The moment his heart stopped,

a part of me died with him.

The me I was before ceased to exist.

And finding the words to explain the pain has been difficult.

There won't ever be the right words to explain how deep  the pain cuts.

(Liam's 3rd birthday)

As Liam's birthday approached I struggled with what to do.

Do I get together with those who loved him to "celebrate" and remember,

or do I suffer in silence and not even attempt to roll out of bed?

At the last minute I decided to give it a go and see if anyone wanted to come have lunch with me.

Honestly I didn't expect many people would want to sit with me through this day.

I honestly thought that most people wouldn't want to take time out of their day to sit with a mom who lost her baby and see her broken.

I was wrong.

More people showed up that I thought would be possible.

More people texted me to let me know they were thinking of me.

As another blogging mom says often,

"Love shows up"

That's exactly what happened.

Love showed up.

So much show that despite the heart break over losing my son and not being able to hold him and spoil him on his special day,

that it kept the tears at bay.

We laughed.

A lot.

Everyone told me how much they loved my little lamb.

Everyone sat with me and took my mind of the heartbreak for a little bit.

I watched everyone as they laughed and chatted.

I watched the kids play and be happy.

And I thought how amazing it was that this little boy of mine touched so many lives that they willingly came to celebrate and remember him on his day.

Some even brought presents for Liam's corner.

I can't even begin to tell you how special that is to me.

Some brought donations of toys for our care packages we put together for Children's hospital in Liam's memory.

LOVE SHOWED UP

(Big sister Lanie with sparklers for Liam's birthday)

At the end of the day the three of us celebrated in our own way.

We ate pizza for dinner because that's what Liam would have wanted.

And we had cake.

Then we set off a few fireworks and sparklers for him.

(See the video here)

I kept asking myself,

"what do I do? I can't buy him presents. I can't spoil him, hold him or cover him in kisses. What do I do?"

Things just fell into place.

I see that know but I couldn't see it then.

It may not have been a huge party like I would have done if he'd been here,

but it didn't have to be because love showed up.

To everyone who joined us physically and emotionally:

THANK YOU!

(Liam's corner decorated for his birthday. I found a mini pinata, a mini happy birthday cake banner, and a mini card with a goofy monster on it for him)

Stormy Weather

"The Coulds Around the Monster" by Alessandro Patronu

Grief is like the raging, angry waves of the ocean.

During the worst of storms the waves can reach 100 feet high during a tsunami.

When they reach land those waves can cause absolute destruction up to 1,700 feet up slope.

It destroys and it kills.

Grief is no different.

It grabs you and it pulls you under threatening to drown you.

Then it lets you up for air only to pull you under again.

The waves that reach the shore are the damage is does to those around you.

Grief changes everything.

Or really the loss that caused the grief changes everything.

You no longer are you in the eyes of others.

Those that you've known forever start to look at you differently.

Many pull away and one day stop talking to you all together.

The reason is always the same.

They say it's too hard for them to see you,

to watch you go through the loss and the grief.

It hurts them too much.

Every now and then there is a few trees that survive the storm.

A few friends willing to stick around.

Then there are the old scarred trees that you never noticed were there before.

Those are the new friends who've been through this storm before.

They offer strength and wisdom and comfort while the storm rages.

12-15-15 Me holding Liam for the last time shortly after he passed.

The rain came when Liam was born.

If you know me you  know I love rain.

The sound, the smell, even the dark clouds.

It rained off and on for nearly 4 1/2 years.

Then he passed away and the tsunami hit.

It grew and grew until I thought it would take us all out.

It's been a storm for the last 19 months.

The length of time since Liam's been gone.

There are no words to accurately describe the heart ache and pain of losing a child.

My child.

The pain is so intense I thought my heart would stop.

Grief causes your heart muscle to weaken.

It increases your chance of a heart attack.

It also causes your blood to become "stickier".

I was having anxiety attacks before Liam passed away that caused my heart to skip beats and to beat a few beats super fast and hard.

It was painful.

This started about 7 months before he passed away.

After he passed these episodes became frequent,

happening daily and sometimes multiple times a day.

I was waiting for my heart to stop.

I still don't know how it didn't.

19 months later and my heart still holds a constant ache.

Like a tree that's been through the tsunami and struck by lightening many times,

I'm damaged.

But like the old Sequoia trees in the National forest,

I'm still standing.

There is no timeline for healing.

No guide book to tell you what to do and how long it will take.

I hurt constantly but I am also healing.

One I'll wake up and realize that the healing is done and wonder when it happened.

The scars will always be there.

They'll always hurt but they'll make us stronger.

When you endure a severe injury your body will try to heal it any way it can.

The more severe the injury the more scar tissue it creates.

The scar tissue is meant to be stronger than the skin that was previously there.

It's your bodies way of trying to prevent the injury from happening again.

Personally my scars have never bothered me like they do some people.

The difference with these scars are that they are on my heart.

They are on my emotions and my soul.

You can never go back to the person you were before.

That person will never exist again.

That time to be that person is over.

The storm still rages for me.

The waters still drag me under until I have no air left in my lungs.

Then it lets me go before pulling me under again.

Even though the clouds are pitch black,

the sun still shines through every now and then.

For 18 months I didn't see the sun.

It didn't matter how brightly it shown,

I didn't see it.

I was too far under water to see.

Then one day things just changed.

The sun broke through and I laughed.

Not a fake laugh I've been using to hide behind,

but a real one.

That was just the beginning.

It started with my husband trying to get me active and off the couch because the doctors keep saying that's what I needed.

Then we went on a anniversary trip to the beach.

A few times the sun shone through the darkness and I laughed.

It wasn't enough to cause a break in  the storm though.

One day about a month ago he drug me up to the lake.

Said I needed to get out.

Mind you I find the lake very boring and it only aggravates my allergies so why would I want to go.

This day I gave in.

I don't know why because I never go.

About 2 hours into watching him fish and I couldn't take it anymore.

He could see it so he tried one last thing to keep us from leaving.

That's the day I tried kayaking for the first time.

Read all about it here...

That day things started changing.

The sun started shining through and I started feeling something I hadn't felt in a long  time...

Happiness.

Since then there have been moments.

Even some caught on camera and frozen forever.

How I've survived this long I can't begin to tell you.

I know I counted 1-10 a lot.

I focused on 10 seconds at a time.

Told myself that if I did good and tried another 10 seconds.

I still have days or moments when I survive 10 seconds at a time.

I put one foot in front of the other with no destination other than going through the motions to survive.

But then there are days or moments when my soul feel freer,

my heart feels lighter.

Me laughing at Chilli's after being made fun of for turning bright red after being sung Happy Birthday to by staff.

About a month after Liam passed I posted the following picture along with these words:

When Liam was born, I forgot who I was. Who I was and what I wanted didn't matter any more. All that mattered was what Liam needed to be healthy and happy. When Liam passed I lost part of myself again. Right now it feels like all of myself. My heart will never be whole again because part of it is in Heaven with Liam forever. But is not just a broken heart. It feels like a shattered soul. I don't know how to fix it. I don't know how to be better. I gave Liam my best. I keep moving forward because I don't know any other way. My entire life since the day I was born has been about surviving. I don't know how to not survive so I just keep moving. I keep moving yet in stuck. Like I'm on a treadmill. I just have to wait. And keep surviving.

Flash forward to now and I'm still confused.

I'm confused and I hurt but I haven't given up and have no plans too,

but maybe,

just maybe,

I will find my footing and my purpose again.

Struggles

We miss our son. We're struggling with his loss. My husband made a comment that your supposed to miss him then move past that and move on. I wasn't offended by that. That's how everyone thinks loss and grief is supposed to be. If it were a parent or grandparent or someone whose lived a full life, then yes that's how things would work. The loss of a child, your own child however is much much different.

It's not even that you have your good days and your bad days. You have your good moments and your bad moments. Its a jumbled mess. It's not clean cut. It's sticky. It's messy. It's ugly. And just to really mess you up, sometimes your sad, happy and angry all at once and your not even sure why.

It's been 15 months and 1 week and 5 days exactly today that we've lost our little Liam. We have moments when we think we are going to be ok. Then we have moments that we aren't even sure our marriage will survive. It's not uncommon for couples to divorce or breakup after the loss of a child. Each person deals with the grief their own way and sometimes it's just much.

We seem to forget the fathers when we talk about the lose of a child. Everyone is always concerned about how the mother is doing that we often forget about the father. The one whose trying to keep his wife from shattering. The one who is trying to keep his family from falling apart. The one that goes back to work way before he's ready just to ensure his family has food to eat and to pay the bills while the mother is broken and unable to function. This takes a toll on them that they aren't willing to admit.

It weighs them down until they are so far under water that they might not be able to resurface for air. Then one day they reach a breaking point. They start questioning their beliefs, their marriage, their entire lives. If both aren't willing to fight to keep their marriage then it's crumble beneath them. They won't ask us for help but sometimes they need us to help pick up their pieces and put them back together again.

We know better than anyone else that tomorrow isn't promised. That feeling can make you feel like what your doing is not worth doing anymore. Your marriage not worth saving. Sometimes you just want to walk away from it all. You have to be willing to help each other pick up the pieces.

When Liam passed away I was so angry. I remembered what it felt like when he was born sick and I never wanted to feel that way again. I had been angry at God and blamed him. It took a lot of work and time to work through those feelings and get rid of them. When he passed away, I was scared I'd slip back into that. The way I saw it, I had two choices. 1) trust that God would get me through this and throw myself into church or 2) Be angry and walk away from him forever.

I chose to throw myself down at Gods feet and beg him to heal my broken soul. My broken heart. My husband was there for me when Liam was born and I was struggling with my faith. He wouldn't let me lose faith. He reminded me that it wasn't God doing that Liam was sick but that we had to keep our faith. Now he's struggling with his faith since Liam's passing. I could walk away and just focus on my own faith since it seems so fragile itself, but I can't. I need to be there for him and remind him how great our God us, like he did for me. I need to bring him back to God, like he did with me.

We are struggling but we are struggling together. Trying to hold onto what little shreds of our lives that we can.

"What is impossible with men, is possible with God"

Luke 18:27

Pulmonary Embolism

On December 15th 2015, I lost my son to a Pulmonary Embolism. It took everyone, even his doctors by surprise. At the end of November Liam caught a cold like virus. Because of CDH his immune system couldn't fight it off. His body tried for weeks but because of his weakened immune system, the cold like virus caused an infection in his blood. The blood infection in turn, caused a blood clot that traveled to his lungs. By this point his body was too weak to fight. The ER doctor suspected the blood clot when Liam quickly went down hill. One minute Liam was sitting there and a few minutes later he started having seizures and his heart stopped. The doctor used an ultrasound machine and found a blood clot in Liam's neck. The clot had got lodged there and cut of the blood supply to the brain causing a seizure. The nurses tried over and over to get IV access but Liam's veins were too calcified from years of pokes and IV's. As a last result they tried to get a bone IV to delivery the adult strength medicine to break the clot up. The meds had never before been delivered via bone IV so they weren't even sure it would work, but they had to try something. They never got the chance. After Liam's heart stopped for the 3rd time, they couldn't get it to restart and we lost him. With Rare Disease Day coming up on February 28th, I wanted to share one of the rarest diseases Liam suffered.


What is a Pulmonary Embolism (PE)?
A pulmonary embolism is a blood clot in the lungs.
Most times, a pulmonary embolism is caused by blood clots that travel from the legs or, rarely, other parts of the body (deep vein thrombosis, or DVT).


What are the symptoms of PE?
Shortness of breath
Chest pain
Cough
Leg pain and/or swelling
Clammy or discolored skin
Fever
Excessive sweating
Rapid or irregular heartbeat
Lightheadedness or dizziness

Can it be treated?
Yes but it's important to get immediate medical treatment. Without treatment, PE can cause death. Treatments can include blood thinners, meds to break up the clots and certain procedures.

Are PE's fatal?
If not caught, yes. It's very important to seek immediate medical treatment if you suspect you may have a PE. The mortality rate for adult who suffer a PE is 15% overall. That's 42 in every 283 PE patients.

Can a child suffer a PE?
A pulmonary embolism in children is rare but can happen. 0.9 in every 100,000 children with a 10% mortality rate.

Scars

I use to think that Liam was the only one that came out of this journey with scars. After all, he was left with a large scar on his stomach from his repair surgery at 7 days old, A scar in the middle of his chest from his broviac. I scar from the ECMO cannula's. That's just the beginning of his scars.

I never took into account my own scars. The internal ones I suffered from being separated from my baby the moment he left my body. From being interrogated right after a emergency csection because the small town hospital didn't know what he had or what it was called. From not seeing my son until he was 7 hours old, then seeing him hooked up to so many monitors. Then having him once again ripped away from me and flown 4 hours away to UCSF. Scars from having him turn blue on my the first time I help him. Scars from watching him knock on deaths door, time and time again. Then the biggest scar of all. The scar from watching my son die without realizing I was losing him until it was too late. The scars from holding my son's cold, lifeless body. That one makes me angry. I had to say goodbye to my son.

I spent so much time worrying that Liam would one day look at his scars and be ashamed of them. I worried he would be made fun of for them. I worried so much that I took every opportunity I could to build his confidence in them. Make him proud of them. All the while, I hid mine like they were something to be ashamed about. I earned every scar. I walked through what felt like the fires of hell for my son, by his side. I shouldn't hide away from them. The ones that need to be treated, should be treated, but I should never feel ashamed of them.

I've been living with depression and PTSD because of what I went through with my son. It's changed me so deeply and left behind so much scar tissue that I can never be the same. Instead of pretending to be the same person I used to be because I'm afraid of what others will think, I need to embrace the new me, scar tissue and all.

Living with PTSD and depression is ugly. I hide behind a pretty smile all I want, but that only fools others and does more damage to me. The hardest part is the stigmatism surrounding PTSD. Most people think that everyone with PTSD has seen combat and is ready to blow every second. It doesn't work like that for everyone. My "freak outs" mean me in the fetal position either crying or starring at nothing, unable to function.

Employers don't want to hire anyone who had PTSD because of the stigmatism.  People look at you weird when they know you have PTSD. I've even had people physically distance themselves from me. It would come out and their eyes would grow bigger and they'd take a step back. It was hurtful. I was still me. The same person willing to lend a hand to anyone who'd ask. Someone they knew yet the title scared them. But these are my scars that I gained in this CDH journey. They tell a story. That I've walked in the fires of hell and I've survived. They remind me everyday that I survived and I will continue to survive.

Everyone has scars. Scars they hide away because they're ashamed. Just remember, they mean you survived something and that is something to be proud of. 

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.

Ramblings of a Grieving Mother

I haven't forgotten to post, I've just started several post but never finished them. It's like I can't ever finish a thought. All I seem to finish typing are ramblings. The ramblings of a grieving mother. Maybe that's the post I should share. The ones that start out so strong and with a point and then just like a snap of fingers, the thought is gone. Not gone but unable to grasp it in the sea of emotions and floating thoughts fighting to break free.

I've been so busy lately. I've purposely took on so much more than I know I should have just so I don't have time to truly sit and think. Or sit and feel the pain at its rawest. I get done with one project and add two more in it's place. I need to slow down, I know I do, but I can't. I literally can't. I don't  know how and I don't really want to if I did.

We had a Sweet Sisters birthday party at our church. It kept me busy for a few weeks. Team Kids and Simple Supper started back up so that leaves my Wednesdays chaotic at best. We have our first event this Saturday for Sent from Heaven. I've been busy shopping for supplies, creating centerpieces and writing speeches. I'm excited that  our nonprofit has come so far in such a very short time. I have no doubt that Saturday will be hard when I have to get up in front of everyone and tell my story of loss. I've yet to tell it without crying. Then it's all statistics and facts from there.

Lanie's 9th birthday is coming up quickly. I'm also busy trying to plan a surprise birthday party for her. I didn't realize how hard that would actually be. In the midst of this, I'm also trying to plan a baby shower, a gift for my husband's birthday and a revamp of my daughters bedroom that includes a new bed. One I have to order and put together. Plus I'm already planning this years CDH awareness picnic, organizing our toy drive and helping run a nonprofit. I'm not bragging. I'm just emphasizing how busy I'm trying to stay because when I stop, the pain sets in.

I don't want to feel totally broken inside. I can handle feeling physically broken but emotionally broken is a whole new level of pain that hurts beyond imagination. I have my moments. I can laugh with my coworkers. Enjoy a cup of coffee. See a movie. Read a book. There was a period of time when I could do none of those things. I would sit there crying uncontrollably or I was frozen, starring into nothing. I could easily be that again, on my worst days I am, but I don't want to be.

God's promise states that Liam is in heaven. He is completely healed and made new. God's promise states that I will see him again when I get to heaven. I cling to that promise like a life preserver in the middle of a harsh storm in the ocean. That promise gets me out of bed each morning. That promise got me to rejoin society and return to working. I'll never tell you it's easy. I'll never tell you that I'm over it. None of those things are true. I will tell you that things get different. The change isn't easy by any means. It's like surgery, it hurts and it's cutting a piece of yourself off your body. A piece you didn't want taken away. When you heal, it leaves this huge "ugly" scar. You'll never be the same.

You spend the rest of your life missing that piece in every moment. Especially holidays, birthday and any other celebration. There will always be that shadow that follows you around. You can't run from it because it's part of you now. It's in everything you do. Let me let you in on a secret though; that's not always a bad thing. Because of Liam Sent from Heaven was born. He's not the only reason but he's my main reason. We all have our own reasons. We do it for our own angels.

I had a choice. I could have ignored God calling me to be a part of this. I could have stayed home, comatose and shattered, where I would never heal. The truth is I wanted to heal. I wanted to get better. I don't want to "get over it", I want to live with it instead of ending my life to end the pain. Helping others going through what I'm going through is my band aide. It's aiding my healing. When your grieving you have to find your band aide unless you want to live with a gaping wound.

I won't begin to tell you that I know how this life will play out. I won't tell you after such and such time, things will just be better. There is no timeline. No expiration. No finish line to this pain. Like I've said a million times, it doesn't go away. It changes and becomes something different. Like energy. You can either choose to let that energy burn you, or you can choose to focus that energy and make it fuel you. My hope for anyone struggling with the loss of a child is that you let that energy fuel you to do something good.

Remember, God knows his plans for us. He's seen all and knows all, more than we can even begin to fathom. He wants good for us. He wants us to prosper and grow. He doesn't want us harmed or hurting. He doesn't take our babies from us. Yes he could have saved them, but he sees all and knows how any and every situation would play out. He chooses the best. Don't be angry at him, be angry at the devil who decided to pick on our babies. That is the hardest thing to remember when your hurting. Trust in God and his plans. One day they will be revealed to us.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

Beautiful Life, Beautiful Mess

I hated to see my little lamb sick.

For 4 years, 5 months and 1 day I sat my his side and watched him struggle one issue after another.

It broke my heart.

At times it felt like my soul was breaking.

It took a long time for me to see the beauty.

The beauty in the struggle.

The beauty in the fight.

The beauty in survival.

We fought hard.

With every breath we had and every bit of energy we had,

we fought hard.

All of us.

I can't deny that we gave our all.

I can't deny that there's beauty in the mess.

I watched as he quietly took his treatments and his slew medicines.

I watched as he smiled at countless nurses, doctors and surgeons.

I watched as he quietly struggled to breath more times that I can count.

He cried to play outside.

He cried when he wanted something he couldn't have.

But he never cried over being stuck in a hospital room.

He never cried when he had to go to the doctors.

Instinctively he knew what he needed.

He took it with more grace and dignity than a grown person.

There's something about watching someone who is broken,

rebuild themselves one piece at a time.

It's like a phoenix rising from the ashes.

Liam was like that.

A presence that demanded attention.

A light within the darkness.

His lowest point was moments after he was born.

I watched as he rose and survived.

I watched as he spent his whole like trying to survive and live each day to the fullest.

His little hands grasping hotwheels.

Singing along with Mickey Mouse.

It was beautiful.

It was our beautiful mess.

(January 5th 2015)

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.

Gift A Book

I want you to take a good look at this picture. I want you to look at these two kids and their smiling faces. Often times when we talk about child loss we can't imagine a face. We can't fathom how painful such a great loss is. Some even imagine how painful it would be to lose a child. I use to imagine it when a friend on Facebook would lose their child. Truth is whatever we imagine it would feel like to lose a child doesn't come close to what it really feels like. I know because I lost my 4 year old son last December. That little boy in the picture below was 4 years, 5 months and 1 day old when we lost him. The little girl in the picture is his sister. Siblings are often "forgotten" when a child is lost. We forget that they are grieving too. We forget that they are in pain too. We also forget that because they are young they are having a hard time understanding and processing what's happened. The last thing a grieving parent has is words to explain to their child what happened to their sibling or where they are now, or even what happens now. We forget that the loss changes everything. As parents grieving the loss of our son, we had a hard time putting into words what exactly happened. We had and still have a hard time trying to help her process her emotions. When it came time to explain what her brothers memorial would be like, we were all tears and no words. She was given a few books right after her brother passed. I sat down and read them with her. They gave me the words to explain things and her more understanding of the situation. They became a comfort, something that was tangible she could grab when we didn't have the words she needed. As part of our care packages, we want to provide siblings with a book to help them through this storm. You may think that a book isn't important at a time like this, but in a child's eyes it's huge. My daughter was 7, almost 8, at the time her brother passed. When asked if the books she was given brought her comfort, she would tell you yes. She would tell you how she used to snuggle up with the stuffed bear she was given and read those books. Will you help us offer the same comfort to children who lose a sibling? Any amount you can give will be greatly appreciated. Please help us reach our goal! http://www.youcaring.com/sent-from-heaven-659180 

#childlossawareness #pregnancylossawareness #sentfromheaven

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 7

Day 7: What song reminds you of your angel?

When Liam was in the NICU I used to sing to him.

I sang "Baby Mine" by Allison Kraus,

and "Godspeed" by Dixie Chicks.

After Liam passed away I was looking for a song to use in his memorial service video.

A good friend came to me with a song that she had heard on the radio.

She said it was perfect and played it for me.

I remember sitting on the porch listening to this song and crying.

It summed it up.

"Trust in You" by Lauren Diagle.

I kept watching videos of Liam and staring at his pictures.

Once again I decided to make another video.

I came across Daughtry's "Gone Too Soon",

and decided to use it.

**Note: If you click on the each link, they'll take you to a video I made using each song**