Grief Journal: Confusion

3) What has been confusing during your grief?

Grief is a "funny" thing. It messes with our hearts and our minds. So much has been confusing to be since the loss of  my son. Like how I've continued to live when my heart hurts so very much.

The most confusing for me though is the chain of events that lead to my sons death.

In November he caught a cold. He was sick yet he was his normal smiling and laughing, energetic little boy. He stayed sick for a few weeks then got better. After only 2 days he began getting sick again. On the Monday before he passed I took him to urgent care for chest xrays knowing how prone he was to pneumonia but because of how happy and energetic he was, the doctor refused.

That night he got worse. The next morning I rushed him back to urgent care, on oxygen. He was extremely exhausted but seemed fine otherwise. Suddenly in the waiting room he turned blue. They transferred him to ER where he later died suddenly of a pulmonary embolism.

Because of his weak immune system his body couldn't fight off the cold and it became a blood infection. That infection created the pulmonary embolism. If his veins hadn't been covered in so much scar tissue they would have been able to save him but years of being poked for IV's and blood draws left it impossible to gain IV access. We had just removed his mediport a year and a half prior to that.

It confuses me how he was so happy and bouncing around then suddenly he was gone. It confuses me how a cold turned into a blood infection. He confuses me that he was here and then gone the next second.


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Grief Journal: Telling About Your Loss

2) Describe a time you told someone (who didn't already know) about your loss.

The other day I had to see a surgeon. The nurse doing the intake had to ask me a series of questions. Those questions included needing to know how many children I had. That is a hard question for me since the loss of my son.

I explained that I had my 9 year old daughter and that I lost my 4 year old son.

I then braced myself for what was surely to come next. Most people get this look of pitty in their eyes and say how sorry they are for me. It confuses me because they never look truly saddened. It's always pure pitty and I hate pitty.

This girl however didn't react whatsoever. No "I'm sorry", no look of pitty, nothings. In that moment I could have hugged her. She was the very first person not to fake it. She probably didn't care one bit but she was truthful in her actions and I was so very grateful.

There are times where I can't bring myself to tell one more person that I've lost a child. Times when I can't bear to hear one more "I'm sorry" or see one more look of pitty. For instance there's a cashier at Walmart that I've yet to be able to correct when she asks where my babies are. She just assumes they're both at home or school. I haven't found the courage to explain that my son died two years ago this December.

So being confronted with someone who was real was refreshing.


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Grief Journal: What You Should Know

1) What would you like other people to know or do after someone loses a child?

To be perfectly honest the best thing you can do for someone when they lose a child is be there for them. It may be painful for you but I guarantee it's a trillion times painful for them and if you love them, show up.

You don't have to have the right words. In fact what you feel are the right words could very well be the wrong ones. Just hug them or hold their hand. Place your hand on their shoulder as their sobbing.

Little things will mean so much more than you can possibly imagine. Showing up on their doorstep with coffee or food is absolutely huge. During those first few weeks, everything is a blur. You forget everything, including to eat. If your at their house and you see the dishes need to be washed, just do them. Don't ask because they'll always say no. Do a load of laundry for them if it's piled up. It may seem trivial to you but it's extremely helpful.

Remember that after the funeral, they still need you. Just because they laid their child to rest doesn't mean they laid their pain to rest. They still need you to stop by and text them weeks after. Months after. 

Within a week or two after my sons memorial people stopped showing up or calling. After two months it felt like everyone forgot. At 3 months into this journey, I became so depressed  that I couldn't get out of bed. I didn't call or text anyone. No one bothered to check on me. I laid there without any concept of time. I was so engulfed in pain that I was sure my heart would stop at any second. Truthfully I prayed it would. At 6 months I tried to function but failed miserably. I felt completely alone in my grief. This is why I tell people that their loved ones need them long after the funeral. I had a friend who lost a child stand up and tell all our friends and family this very thing but they failed to follow through. 

The holidays are so hard on someone whose lost a child. They feel it even more because these are times for family. The birthday and day of loss are two big ones as well. Call them. Check on them. Let them know you remembered and your thinking of their angel as well. It means more than you'll ever imagine. 

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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)

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

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.

          

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

Rainbow

.

11 months ago today my world stopped.

I watched my son take his last breath.

I watched my sons heart beat its last beat.

I watched the doctor proclaim time of death with tears in his eyes.

My world was never the same.

On Tuesday December 15th, 2015 I said good bye to my baby boy.

My little lamb.

He was 4 years,

5 months,

and 1 day old.

He fought until he had no fight left in him.

But he was tired.

So very tired and needed rest.

"Mommy I tired, I sweep" he said to me.

I didn't know when I told him it was ok to sleep that it wasn't what he meant.

Part of me feels that he knew.

God was right there in the room.

Guiding the doctors.

Making sure that at the end of the day I would have no doubt they did all they could.

God knew I would be broken.

He knew my soul would shatter.

But he knew I would be put back together.

He saw all outcomes and choose the best for Liam.

He did his best to comfort me.

I went from being in the ER room watching them work,

to being surrounded by loved ones.

God knew what I needed and he gave it to me.

As I type I sit here crying.

Tuesday are not good days.

They've been dreaded since Liam passed on a Tuesday.

This particular Tuesday has been extremely difficult.

It also happens to be the 15th.

The very day Liam went to Heaven.

I spent the day refusing to look at the date.

I kept telling myself that it was Wednesday.

I tried to spend the whole day in denial.

But God had a different plan.

It was made very apparent to me what today was by several people.

Everyone just wanting to make sure I was ok on this particular day.

So then I was forced to face the dreaded fact that today was indeed Tuesday the 15th.

There are certain numbers, days and months that will forever be hard for me.

#4 Liam's age

#15 the day and year he passed away.

Tuesday, the day he passed away.

There's a whole slew of things that will forever effect me.

I could have ignored everyone.

Truth is I tried at first,

but when reminders kept coming,

I knew I had to face it.

Good news is that I survived.

My emotions may be goo right now,

my anxiety and depression on high,

but I survived.

I haven't yet moved on from survival mode to living again,

but there's hope.

Finally hope.

On Sunday evening my friend Amanda and I presented Sent from Heaven to our church.

We started SfH in the wake of our tragedies.

She had had 2 miscarriages in the last year.

I had lost Liam and my first pregnancy of twins.

SfH is such a God thing.

She woke up with this idea for a nonprofit that gives care packages to parents when they lose a child.

This includes miscarriage,

illness,

birth defects,

adoption,

suicide and more.

She then decided to ask me to join her.

There was no hesitation.

I knew the moment I heard what she was doing that I was meant to help.

I needed something to help heal my brokenness and felt lead to this.

So Amanda,

her husband Joseph,

and I went to work.

Last week Amanda and I met with a lawyer about helping us with paperwork.

The meeting didn't go as we had hoped,

but it put us on another path.

Sunday we attended our churches business meeting,

stood in front of everyone present,

and explained what SfH was,

our purpose,

and our hope for  the future.

We asked them if they would accept us as one of their ministries.

This would allow us our nonprofit status and allow us to continue giving families care packages.

We knew going in that this was a HUGE thing to ask of them.

We went in hoping for the best yet expecting to be back to chasing our path.

After many questions and discussion it was time to vote.

Not only did one of our pastors make the motion,

but a couple playfully "fought" over which would second the motion.

We all had a great laugh over it.

Then they voted.

They voted anonymously and approved us.

I was in shock to be honest.

I sat down and was utterly happy yet in utter shock.

On the drive home I cried.

God always promises a rainbow after the storm.

Because I can't have anymore kids I was struggling with the fact that I would never have my rainbow.

As I cried I thanked God.

I suddenly knew that this was my rainbow.

SfH was my rainbow after the storm.

My purpose.

What I belonged doing.

I felt a change in me.

Like being stitched up.

Another piece of me was being mended.

I may have had a horrible day today,

and I struggle with things daily,

but I'm healing.

I'm on the path that God wants me on.

I find that life is better when you stop fighting God and follow his path.

So even though I'm sad and hurting,

there's comfort and love and healing.

I feel so blessed to be able to be a part of something that has already done great helping others,

and will continue to do great things.

I feel blessed and so thankful to be surrounded by so many people who love and support me.

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.