Thursday, April 27, 2017

Bloody Blessings

You make plans for the future. You feel confident and safe. Problem is that there isn't always a future to make good on those plans. We learned that the hard way with Liam. We had so many plans with him. We wanted to make so many trips, do so many things, teach him so many things. I planned to see him grow both physically and mentally. I planned to see him running around playing soccer and football with his friends. I planned on teaching him to drive and how to text and use a computer. How to read and do math. How to cook and mow the lawn. I wanted to see his preK graduation and his High School graduation. I wanted to talk him through his first heart break and be there when he found the love of his life.

Then there are other types of plans. Like just trying to survive the loss of our son and raise our daughter and keep a roof over our head. Plans to go to work daily and maybe squeeze in a trip to the beach other the summer. Simple plans but plans all the same. We've yet again learned plans change. Just like that, our lives can change.

Tuesday morning, Justin went in to get two teeth extracted. It's a routine procedure that people have done every day without complications. This one had huge complications however. He ended up bleeding from his nose profusely and his face swelled up so huge he started instantly bruising. We had to call for an ambulance because he was bleeding so badly that we thought he was bleeding to death and from his nose no less. Very long story short we spent 9 hours in ER. It took 7 hours to stop the bleeding. His sinus cavity was exposed and he was left with two fractures in his face on each side of the exposed sinus. The sinus cavity is filled with blood. Yesterday he followed up with an ENT surgeon and they were able to determine he didn't need surgery like they originally thought. He has to follow back up with them again next week and if the swelling is still there, they will have to drain the blood out so that sepsis won't set in.

Because of this injury, Justin isn't allowed to work for 3 weeks. He also can't sneeze, or blow his nose for 9 weeks. He also was diagnosed with high blood pressure and had several doctors sit him down and have the talk with him. They told him that he's beyond hypertension that he's a ticking time bomb. As soon as this trauma to his face resolves he's to get into a PCP and get on meds. So it's my job to get him a PCP and make sure he goes and gets meds because we want him around for a very long time.

Again, that's the ting about plans. We can make them all we want, but they keep getting ruined. We will suffer financially from this and not be able to do things we wanted but at least we have him still. It was so scary to see him bleed like that. I hadn't seen that much blood since the day Liam passed and it brought back flack backs I didn't want. Feelings I didn't want to face. When I was trying to explain to the nurses how much blood he lost just while inside my house, I described my kitchen sink looking like the scene of a murder movie. They also saw the bathroom towel drenched in blood when he went into ER. I'm really glad Lanie was at school and didn't see any of it. Thank God I still have my husband.

Monday, March 27, 2017

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


Tuesday, February 21, 2017

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.