Tuesday, February 21, 2017


(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?"

"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?"

"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.


Sunday, February 19, 2017

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
Leg pain and/or swelling
Clammy or discolored skin
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.

Thursday, February 16, 2017

Living Again

There's this song that, for the last 10 months, has been on the radio every time I'm in the car. Every time I got in the car, this song was on. It drove me absolutely insane. I would turn the radio off or change the station. I fought it with all I had. I wasn't ready to move on. I didn't want to hear a song that told me to let my heart beat again. In all honestly I'm still not ready, but I'm trying.

Despite how much I fought this song, I realized that it was a message. Sure it's a son by Danny Gokey but the timing couldn't have been better. I know Liam wouldn't want me sad and depressed. I know he wouldn't be happy to see that there are days I can't even get out of bed. So one day this song came on and I kept myself from changing the station. It was playing far too often for it not to be a message form God or even Liam. I sat there in my car as it played, crying. Unable to see, unable to drive.

Why now? Why do I have to let my heart beat again when all I wanted was to be with my son. If I couldn't have him here on earth, then at least I could be with him in Heaven. I had just simply given up, stopped trying, stopped living. God was working in my heart by playing this song continuously until I listened. Slowly my heart started beating again. I started participating in life again. I started volunteered at the school again and slowly it built me up until I was able to start working again. As each day passed I went through the motions. Most days I'm still only going through the motions, but it's a start. It takes time to re-enter society after you decided to just stop.

Then one day I was asked if I would be interested in starting a nonprofit for child loss. My heart screamed "Yes! Do it. This is where your needed". So with tears in my eyes, I responded to the email with enthusiasm. That was the moment I started living again. Actually living. I once again had a purpose. Of course God always knew my purpose but I didn't. The future might even hold more than this, but this was that moment. The moment God had spent months, maybe years, working on my heart for. And to think, without that song hammering into me, I might have not been ready when asked.

So today, I wanted to share the song with you. Maybe it's something you need to listen too, or you know someone that should listen to it. Maybe it will help someone else who is struggling, make a change and decide to live again.

#liveagain #tellyourhearttobeatagain #dannygokey #childlossawareness #cdhawareness #lifeafterloss