Choo Choo Goes the Train

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

(Image is of Liam playing)

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

(Image is of Liam playing)

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

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

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

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

(Image is of Ozzy sniffing the track)

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

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

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

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

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

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

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

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

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

9 Months

When you think 9 months, you think pregnancy. Your belly growing as your baby grows inside you. You think about baby showers, and nursery decorations and all those cute tiny onsies for babies. And you think about what happens at the end of that 9 month period. You give birth to a perfect, beautiful healthy baby. 

But what if that wasn't the case? What if instead of delivering a healthy baby, yours is born with a birth defect like Congenital Diaphragmatic Hernia. Can you imagine seeing your baby hooked up to, what seems like, millions of wires and tubes, each one vital to your babies survival? Can you imagine not being able to hold your baby because they are too sick to be moved and are kept sedated? Can you imagine your baby having to have surgery before they are ever laid in your arms? Can you imagine weeks, days, months and for some even years spent in the hospital before you got to bring your baby home from the hospital for the first time?

No? Well how about this next scenerio. You've sat next to your baby, watching this fight for weeks and were unable to hold them yet. Then you see another family with a baby born with the very same defect but a few weeks younger, get to hold their baby. How does that make you feel? Angry? Sad? Confussed? Think that and so much more. Now imagine you finally get to hold your baby a few days later and your over the moon. Then suddenly your baby takes a turn for the worse and one day you walk out of that hospital, empty armed yet again, only to never go back because your baby didn't make it. 

Here's another scenerio for you. You've finally worked up the courage to tell your family and friends that your pregnant. Your over the moon. Their over the moon. Everyone is in this happy bubble that seems so inpenatrible. You've waited a few weeks or months to finally tell everyone and you can't wait to start shopping for all those cute baby things or even find out the gender of your baby. Everything seems perfect and right in the world. Then one day that bubble burst and you miscarry or you walk into the doctors office for a routine ultrasound and instead of finding out the babies gender, you find that the babies heart stopped. 

Here's one last scenerio for you. You've read this far so you might as well keep reading. Like in scenerio #1, your baby was born with CDH. You sat by their side and watched them fight. You waited patiently to hold your sweet child and that patience paid off. Now your baby is ready to go home. You put their specially-picked coming home outfit on them. You've packed their things, went through all the training, have all their appointments lined up and your out the door. You think this is it. we made it. Only the journey ha just begun because the side effects of being born with CDH are horrible and for a lot, life long. You spend years tube feeding to get your child child to grow. You stay up most the night administering meds and breathing treatments and just rocking that sweet child. You've spent years, always putting them first and yourself last after everyone including the pets.

You get to a point where you forget how tough a life you and your child are really living because you'd do anything for them. The sleepless nights and endless doctor appointments don't matter anymore because you have that sweet child to love. You spent years building a bubble around your own corner of the world. You take every precaution you can to not expose your child to germs or people who are sick because you know if you baby gets sick, they could end up back in the hospital. Despite everything you've done, your child still gets sick. At first it seems like a common cold. You hook your baby up to oxygen and change their tube feeding rate as needed. You do everything you can to help them get through this set back. Then suddenly they wake up and seem perfectly fine and life goes back to your own normal. Just a week later, you baby ends up sick again with the same symptoms. You follow your protocol and do what you did the lest time only after a day or so, you feel something else is wrong. So you load them up and take them to urgent car because your sure they have pneumonia and need an xray and antibiotics. Imagine fighting with the urgent care doctor because he doesn't feel your kids lungs sound bad enough for an xray and is too perky to be that sick. Finally you return home with the order to return if they get worse. That night they get worse. Back on oxygen, feeds have to be stopped. The next morning you take them back to urgent care, hooked on oxygen to demand that xray they wouldn't give you the day before. You sit there holding your sick child, who doesn't want to be anywhere but your arms and sleeping. You look down and their lips, ears and fingers are blue. They rush you back, start a treatment and call for an ambulance. The ambulance driver scolds you for not going straight to ER. You bite back telling him you have protocol set up with the babies doctor and you know what your doing. If things had been that bad, you'd have called 911 instead. 

Your child heads to ER in the ambulance and you follow behind as fast as you can safely drive. You get there to find your child sitting up in the gourney and they smile at you. Your anxiety calms a little and you smile back and tell them how good they're being. They wheel you into a room where they order xrays and ekg to come to them. They try for an IV but couldn't get one. They break for the ekg a xray to do their job then your right back at your child's side, holding their hand and brushing their air from their eyes, telling them whatever you have to to soothe them. Then something happens, that;s never happened. Your child starts seizing and they loose his heart beat. They're able to get it back but it's weak. Your in denial about how serious the situation is when a social worker walks in the room and tells you to call the babies dad and get him down there. You look up and see the Chief of Staff and 20-30 people standing outside the room just watching and you know. You know it's bad. You call your husband telling him to get there quick because it's bad. You text your entire family. You call your pastor. And you sit there and wait for what seems like eternity as they continue CPR and trying to get an IV started. 

Your pastor shows up and you think for just a moment that everything will be ok because your pastor will help you pray for your baby. Then your husband shows up and tyhe doctor takes a moment to explain that your child is septic and they can't get an IV because his veins are so calicified from years of IV's and blood draws so they're doing a bone IV. He's positive your baby has a blood clot and that if he could just get the meds in him to break it up then he can save him. So you put all your faith in a basket and hand it to God with a neat bow on top. Your begging God to save your baby. Your even bartering with him to trade places. Then the doctor looks you in the eyes with despair and pain, looks at the clock and calls time of death. 

You beg him to keep trying and when he says he's sorry, you loose it. You scream "no
", you hit the wall, you run past everyone trying to comfort you, to reach your babies side and you beg them to come back. You can't stop the tears. They just keep coming. Then the guilt sets in because you don't the last words to your baby to be begging them to come back so you tell them it's ok, even though it's far from ok. 

Can you imagine that? No? 

The above scenerios are real. They happened to someone. The first and last scenerios happened to me, to my son. 9 months ago yesterday I lost him to a pulmonary embolism. His last words were "Mommy I tired. I sleep". Naturally I told him to sleep, that this would all be over soon. I feel guilty because I didn't know he was this sick. I feel guilty because I couldn't save him. I feel guilty because without knowing, I gave him permission to sleep and go to heaven, therefor putting my family  through this horrible mess. 

I feel angry because I put all  my faith in God to save my son. He was saved, but not the way I wanted. Angry because I need my son and he was taken from me. I feel angry because life didn't go as planned. I feel angry because I'm angry. 

9 months ago yesterday, was the worst day of my life. I miss my son everyday. Everyday I get up and pretend that I'm ok, but I'm not. How can I be? I lost my son. The fact that I can even wake up every day, baffles. Keeping my faith through this had been so difficult. I can't imagine 9 months without my son, yet I've lived it. The radio keeps playing the song about how he can't believe it's been 9 months already and now his baby is finally here. How if his kids are going to be like him, he wants to be like God. I get frustrated every time I hear that song because my focus is on the 9 months and having a baby. Other parents who've experienced loss have found some comfort in their rainbow babies (baby born after the loss of a child), but I won't have that after Liam. I can't because I can't have anymore kids. So where is my comfort. I keep praying God will heal my broken heart. Everyday, a thousand times a day, I pray this. I can't lose all hope yet. I won't.

Taken 2 years ago today.

Standing Tall

(Taken September 9th, 2012)

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

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

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

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

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

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