Grief Journal: Priorities

21) Have your priorities changed since you lost your child?

Before Liam passed away my main goal was to keep him as healthy as possible. That was  my top priority. My second was to give him as normal a life as possible. It was extremely important that despite his many medical issues, that he be a normal boy and experience normal things.

Playing in the mud.
Going to races.
Going to school.
Having birthday parties.

(October 2015 Pumpkin Decorating)

Those are just to name a few. I didn't want him to feel any different than any other boy his age. I also wanted him to not be ashamed of his differences like:

His feeding tube (which he enjoyed showing EVERYONE).
His nasal cannula and oxygen (the kids at school said he was cool like an astronaut).
His frequent meds and breathing treatments.....
and more.

(November 2015 After having to go to school with his oxygen)

I would say that I succeeded greatly. Or that WE (my husband, daughter and I) succeeded greatly because it really was a team effort.

(2014)

However almost every minute of every day was planned out and busy. Even "free time". His schedule always came first. It was always TOP priority. His health was always TOP priority. We'd drop whatever we had to at a moments notice to rush to Valley Children's ER. Bags stayed packed with what I donned our hospital gear. Everything was meticulously planned out and there was always a back up plan.

When Liam passed I became lost. Even to this day 2 1/2 years later, I can look at the clock and tell you what I'd be doing if Liam were alive. Since his passing all our priorities changed. Yea we knew we could lose him in the blink of an eye because of what we went through in NICU and his first two years. As the years went by it became less and less likely though that it would happen. Then it did. We got a quick lesson in how quickly our lives could be over and one of us could be gone. That changed a lot of things for us, including our priorities.

Our main priority now is to give our daughter a better life. To enjoy life more than we did before and experiencing things we couldn't do because of Liam's health. We started kayaking as a part of this new outlook on life. I can tell you with almost perfect certanty that if Liam were here, we probably never would have even tried kayaking because it would have compromised his health and well being, plus my sanity because to have MY crazy wild little boy on a kayak would drive me to insanity with worry.

(August 2017 Justin, Lanie and I relaxing on the kayaks)

We try to work to enjoy life more versus work to pay bills only. I can say our lives did a complete 360. To be honest that's the only major priority.

Now I would trade it all back for my son in a hot second if I could.

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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.

7 Days Till 5

In just 7 days,

my little Liam would have turned 5 years old.

I'm having a hard time grasping the fact that he isn't here.

That I won't be waking him up by singing 'happy birthday'.

That I won't be tickling him until he can't laugh anymore.

It's hard to believe that I won't be planning a party,

or decorating the house.

 

Instead I'm trying to plan something in memory of Liam.

How is this even possible?

I'm so confused by it all.

My heart aches to see him running through the house.

To hear his laughter.

That's the one good thing about PTSD.

I get flashbacks of good memories every now and then.

I can still hear his laughter.

See his smiling face as if it's really there.

I still flashback on all the bad times.

I've tried so hard to run away from them,

but they don't stop.

So I stand there and face it head on,

wait for the flashback to go away.

It's the only way I can survive with less damage.

Here I am stuck between the world of the living,
and the world of the dead.
A piece of my heart will always be in Heaven with Liam.
Yet here I am,
stuck,
trying to find a way to live on.

Birthday parties are fun and happy.
You celebrate,
laugh,
eat cake,
and spoil the birthday boy.

This isn't a birthday party.
It's a memorial thing.
And memorial things are sad.

I have several ideas running through my head to do for little lamb.
I want to have a star named after him.
When I was a kid and my nana died,
I always looked up into the sky.
I felt that when you died,
a star appeared to represent you.
You went to Heaven sure,
but a star would appear for us to see.
It's how I felt as a kid anyway.
I've always loved astronomy,
so naming a star after Liam wouldn't be too far fetched.
And it's something the world can share.

I'm also wanting to release butterflies.
I'm having a hard time getting my hands on caterpillar's or butterflies.
At this rate,
it'll be a butterfly release after his birthday.

I would also like to get a stuffed animal in his memory.
One weighing his birthday weight of 2lbs 4oz.
One weighing his last weight of 23lbs.

Everything else is still up in the air.
Missing him is just so hard.
I still don't know how I wake up every morning.

 

Graduating To Heartbreak

This week has been such a mix of feelings.

Liam's preschool class spent the week making giant mother's day cards,

as well as preparing for their graduation.

 

These kids have come so far.

They've grown so tall compared to what they started the year at.

They're so smart,

and have learned so much.

 

As I watch them I am both proud and sad.

Proud because of how far they've come.

Sad because my Liam should be right there with them.

 

I won't be getting a giant mothers day card with Liam's handprints.

This year was supposed to be the first year.

The first year my baby boy came home with a mothers day present for me.

These little trinkets and handmade gifts seem just that.

Unless your a mom.

Then these pieces of paper and paint become this heartfelt,

most wonderful gift.

 

I still have all the little thing Lanie made me over the years.

They mean something.

They're not just paper and paint,

popsicle sticks,

glue and glitter.

Our little ones put all their love into making these sweet things.

And when I lost my son,

I also lost these precious moments.

 

He wont wake me up Mothers Day morning,

saying "Happy Modders Day Mommy"

He wont proudly present me with his handmade gifts on Friday.

And that's hard.

 

The preschoolers will be doing a graduation ceremony at the end of this month.

I won't get my son up that morning.

I won't get him showered and dressed nice.

I won't get to take before pictures.

I won't get to drive him to school and proudly hold his hand as we walk to class.

I won't get to see him presented with his "diploma".

I won't be presented with a picture of him wearing a tiny cap and gown.

Because my son is gone.

 

I'll wake up that morning.

Done my minions shirt for their theme.

Drive to the school.

Help the teachers wrangle the kids.

Walk to the cafeteria for their ceremony.

Stare at the seat they're setting a stuffed minion in and Liam's picture.

Politely clap for each child called up to receive their "diploma".

Listen as they most likely mention Liam's name.

Walk with the kid back to class.

And help them with activities.

All while trying not to cry.

All while feeling like my heart has been ripped out of my chest.

 

I didn't just loose my son.

I lost the rest of our lives full of memories.

 

My son will forever be 4 years 5 months and 1 day old.

 

 

 

 

 

 

 

 

 

 

 

 

 

Life is Different

For the first time since Liam went to heaven, I went to read a book. 

That says a lot about me. I opened my kindle app to read more in a book a started reading weeks ago but I just stared at the words. My heart felt heavy and I felt guilt. I always read because I enjoy it. I also read to de-stress and to escape the worries of every day life. However this isn't something I can just get over. This tops the list of life altering situations of epic proportions. 

I don't what else to say. "Life is different" does t even begin I cover it. 

I've had moments when I could go into his room and pack up medical supplies or put some special stuff into his keepsake trunk. But mostly I just wish I could build a wall up between our room and his and have I forever stay. 

I still have phone calls to make and stuff to get rid of or pack up and I'm finding it harder the longer I wait. I just want to hide from the truth. I want to hide from the fact that my baby boy is gone forever. That I won't see him again or hold him again until I get to heaven. 

I don't sleep. I pass out for a few hours every night. Sleep brings ptsd flash backs of what happened that day. I don't want to see that tragedy over and over again. I want to remember his smile, and him running through the house. I want to hear his voice as if he's right here. I want to remember all the cuddles and his sloppy wet kisses. I don't want to remember the blue lips, ears, fingers and toes. I don't want to remember the seizure. I don't want to remember the intubation or the cpr or the blood or the doctor with tears in his eyes as he finally gave up after Liam's heart stopped for the second and final time. 

I thought my tear ducts were broken and dried up but I was wrong. The emotions are so intense they're spilling over. 

I watched Lanie ride her scooter today, well yesterday since its past midnight. I kept remembering all the times he was right out there with her on his scooter. He loved being outside. After years of being locked inside he had enough and would spend all day every day outside and still cry when it was time to come in. He didn't care what the weather was like. He just knew he wanted to be outside.