It's Going To Get Harder

(Image is a photo of me holding a sleeping Liam after a long day of bike riding exactly 1 year ag today)

"It's going to get harder before it gets better"

And it is. Much much harder. 

Yesterday we received Liam's DC had delivered to us at church. It had already been an emotional day from the minute I woke up. It's like I couldn't stop the tears.

Today in no different. Loosing Liam might as well of happened yesterday. 

Life is so different now. So sad.

There's still waves of denial where I think that he will be waiting at home for me. That when I pen the door I'll be greeted with his huge bright smile saying "mommy you back" as he runs towards me to hug as tight as his little arms are able. But then as waves of the ocean crash into rocks, so do my hopes. And my heart breaks all over again.

5 weeks tomorrow since I've last held my sweet boy. 

Saying life is unfair is the understatement of a life time.

I remember one day he was outside riding his 3 wheeled baby trike and he "crashed" and fell to the ground with the trike on top of him. He laid there and laughed. He thought it was so funny. 

He didn't get to spend as much time outside as he would have liked. He was always at the doors and windows looking out. This little boy at the age of 1 wanted outside so badly but we had to be so careful with him that he hardly got to experience it. He had been on a 24 hour feed and taking the pump outside had made it harder.  He used to sit at the back screen door and push cat food out this little hole to feed the dogs. He would place his tiny little hands on the screen and the dogs would try to lick him. On other occasions Liam would climb up the couch and sit in the window looking out. He was such a determined little boy. He always found a way to adapt to get what he wanted in one way or another.

There were so many nights when Liam would fall asleep in my arms and I wanted nothing more than to stay that way all night but couldn't because of his continuos night tube feed. Many nights I cried myself to sleep over the injustice. Other nights I would lay in his toddler bed with him for hours until my body cramped up forcing me to get up. And a few nights I was so frustrated I either brought the pump closer to my bed so me could sleep with me or forgot the feed all together. 

There were so many things in Liam's life that were unfair but he didn't mind most the time. 

When he started preschool this year, he figured out quickly that he was different. The kids in his class did as well when he had to go to school with oxygen. But they didn't care. They asked their questions then said he was so cool. One kid even compraired Liam to a firefighter. Liam loved it. On those oxygen days, the teachers would take blocks and puzzles outside for Liam to play during recess since he couldn't run around. The other kids would give up their playground time to play with him. They said they didn't want him to be alone. I was amazed by their acceptance and had cried over how wonderful it was. 

Days are getting harder. His room is still set up and it's s hard to see this room ready for the little by who is never coming back. I don't know how to handle all this. I'm so lost.

From A Grieving Mother

I wish I had something inspirational or motivational to share with you.

But the truth is, I don't. 

I hate CDH.

CDH is a monster. It's chews us up and if we're lucky, spits us out.

It claims too many lives (one is too many) and devastates so many.

As parents to a CDHer, we have to pull up our boot straps and keep trudging forward even on the darkest of days because that's what our kids need from us. That's what the world expects from us.

Even when we just lost a loved one. 

People put an expiration date on grief. They feel like there is an appropriate window of time to grieve the loss of a loved one and then you should be back to "normal" again. 

They don't want to hear you talk about your loss anymore. They don't want to see you sad. They feel like there should be no trace left in your house that this person, this perfect human being, ever existed. If there is then they stop coming over. God forbid you have your sons ashes in the living room!

The truth is, they're being selfish. They don't want to feel the pain so they pretend or ignore it ever happened. It's not because they don't want you to feel sad or that they're trying to help you. In truth, they don't give a damn about you.

There's no timeline or time limit for grief. I had a friend who lost her son give me the best advice I have ever heard and I feel like I should share it.

"The pain doesn't ever go away. You just get better at hiding it"

This rings true to my soul.

I had another tell me that it's going to get harder before it gets better. She advised everyne at Liam's memorial to keep saying his name and to keep coming around. That it wasn't really right now that we would need them but in the next several months. She said at the 2 year mark things started getting a little easier and that we will cherish all the little things because we know how easy it is to loose them. And for one while things are hard and blurry that I should write everything down. More advice that rings true.

Everyone keeps saying that I need to find a way to get over this. There is no getting over the loss of your son who was only 4years 5months and 1 day old. In fact I don't believe you ever get over a death of a loved one, no matter their age. My dad died before I ever turned 10 years old and it still hurts me knowing he's gone and I can't talk to him. I just found a way to continue to live with that pain. If my father whom I didn't really know still hurts, do you think losing my beloved son is going to be any easier? No. 

Another mistake others make is comparing my sons passing to that of someone who has lived a full life or at least made it to adulthood. Loosing Liam is not the same as loosing my grandma. My son will never get to start kindergarten, or graduate college. He will never get to play sports or be a computer geek. He will never get his first kiss or date. He will neve get to drive a car, or get married or have kids f his own.

His life stopped at 4. At pizza and Dorritos and Thomas the train. At duck duck goose and hot wheels and lightening McQueen. 

Why? Because of CDH.

We can only hope and pray that somewhere in the future there will be a "cure", a way to stop CDH from claiming and devastating so many lives so that our future generations won't know the pain that we suffered. 

So spread awareness. Donate to research. What we do now may seem small and insignificant but we should do it anyway because somewhere down the line it could mean the difference between a "cure" and this monster claiming me lives.

Breath of Hope is a great organization to donate too. They help CDH families and donate to research. Nayeli Faith Foundation helps CDH families get back an forth to UCSF. Donates money to UCSF families for meals, gas and more. Or donate directly to hospitals that have CDH research teams like UCSF. 

Any action now, however small, sets things into motion. 

 

One Month Tomorrow

Do you know what I do?

I fix things. 

But I can't fix this. 

I can't make this all better no matter how hard I wish or how hard I pray. 

I'm trying so hard not to question God. 

But every day that passes my heart breaks more. 

I feel like I'm being sucked down a hole. 

The light is gone and I am alone.

I know in reality I'm not alone but grief does weird things. 

I'm sorry I couldn't save you baby boy. 

I'm sorry I couldn't fix you. 

"If my love could have saved you, you'd have lived forever"

I can't make this better. 

I can't take away this unbearable pain. 

I can't bring you back. 

Life isn't the same. 

The color is gone. 

Today school started back up. 

Amanda kept me busy until pick up.

I walked that school without you by my side.

It wasn't right. 

It was heart breaking. 

Tomorrow is one month.

One month ago my world was turned upside down and inside out. 

One month ago I held you as you turned blue. 

One month ago you were rushed to ER via ambulance.

One month ago an EMT scolded me for taking you to Urgent Care.

One month ago since you told me you were tired and wanted to sleep.

One month ago I held your hand and told you it would be alright and to rest.

One month ago  you seized.

One month ago you stopped breathing and your heart stopped beating.

One month ago I watched them do all they could.

One month ago my world came to a crashing halt.

One month ago I held your hand for the last time.

One month ago I held you for the last time.

One month ago I kissed you goodbye. 

One month ago tomorrow. 

I'm a mess without you. 

I walk around with a knife in my heart. 

I have to put on a smile for people and tell them I'm all right.

The truth is I don't give a damn about anyone else.

I don't care if they're done caring or it's too hard for them to come around.

I miss you and the pain of loosing you is by far the worst thing I've ever felt in my entire life and will probably be the worst ever. 

There's no getting over, or around or under this.

I'm drowning here and fighting like hell to reach the surface.

3 weeks

When I found out I was pregnant with Liam, I was in denial. I took 6 pregnancy test before I started to believe it. It took my sister in law to say "babe, it doesn't matter how many you take, they're all going to come out the same. Your pregnant". 

So I called that same day and got an appointment to be sure. 

Justin was out of town for work and I wasn't sure how I was going to tell him. I was so nervous. I thought he would be mad. You see Liam wasn't planned. In fact the plan was to wait until the following fall to get pregnant. Liam came an entire year early. 

When Justin came back home a few days later, he wasn't expecting this news. He walked in the door with a huge smile on his face "I'm home!"  Lanie was so happy, she ran into her daddy's arms. He could tell something was off because I didn't give a happy greeting. 

"Honey, I have something to tell you". I couldn't even muster a smile. I was on the verge of tears.

"Oh come on, it can't be that bad. It's not like your pregnant" he said. 

I lost it. I busted up crying and couldn't stop. He laughed, then hugged me and said asked why I was crying. I didn't know. I didn't really. Was it the pregnancy hormones kicking in? I don't know. I end up being further along than we thought, which was also a shock. 

Through the months I talked to my belly like I did when pregnant with Lanie. I promised to always take care of it and love it and protect it. I read books to it. When he finally became active, we played this game where I'd tap on my belly and he would tap back exactly where I had. Then I'd move to a different part of my belly and he'd follow. 

We grew a fast and fierce bond. 

I told him I hoped he'd be a boy because I really wanted a little boy who'd climb trees, play in the mud, love racing and football. But if he turned out to be a girl then I would love him all the same but I'd put 'me in frilly dresses with matching bows that I was sure it'd end up in the mud in just like big sister always did. 

My belly didn't grow fast like it did with Lanie. In fact people started questioning if I was really pregnant. If it wasn't for all the kicking I probably would have questioned it too. 

The day we found out he was a boy was such an amazing day. It was Justin's birthday and I got to surprise him with a baby boy onsie that said "daddy's fishing buddy" and the ultrasound pics that said "boy". We were on cloud 9. But we didn't expect Liam to be born with Congenigal Diaphragmatic Hernia. 

When he was born sick, we didn't think it could get any worse. He wasn't even expected to live. Yet he did. 

At Liam's memorial his pediatrician stood up to speak and said that he believed that Liam lived as long as he did because of me. Because of my sheer force to keep him alive. Because of the care that I gave him. He believes that if it hadn't been for me, Liam probably wouldn't of had these 4 years and 5 months. 

I see pictures I took of Liam with shirts I made him that said "CDH survivor" and I laugh at the irony. And I get angry. 

Survivor? 

When they give the survival rate, do they consider those taken later on down the road after NICU?

A year ago today Sir Isaac grew wings all because he caught some virus. 

Liam grew wings because he caught some virus that would harm someone with a healthy immune system or healthy lungs. If it wasn't for CDH, Liam would have had a healthy immune system, healthy lungs and would still be here with us. Even his DC says extenuating circumstances of CDH and Chronic Lung Disease. But no the CDH monster still found a way to claim my precious boy. 

I'm angry. It's not fair. 

I'm sad. I'm hurt. 

The little boy that I had waited for for so long and had such a special bond with, is now gone and I just can't "get over" that. There's so much injustice there. 

We didn't get to watch him open up his Christmas presents. I didn't get a chance to sit and play with his ninja turtle sewer set with him. that was wrapped up. Growing up I played with one and loved it. When Liam finally got into ninja turtles, I was so excited. When I saw the half shell heroes sewer set, I had to buy it for him. It was something I looked forward to doing and now I can't. 

He won't get to graduate preschool and move on to kindergarten. Won't get a chance to break a bone. I was t looking forward to that but I knew my little boy very well and it wasn't a matter of if but when. He never got a chance to be feeding tube free, or play on a sports team. He will never get to date, get married or have his own kids. Although the NICU nurses called every other girl that went through their section his girlfriend because he was the only boy. He also got to have his first Valentine. We had choose another CDHer, Princess Alexandria, to be his Valentine and sent her a package full of goodies. We thought it was fun. 

Even though I'm angry my baby is gone, I still recognize all the good. 

Liam was so full of life, more than anyone else I'd ever seen. He smiled through the worst illnesses. When he was on ECMO he'd wake up from the paralytic drug and would look around and smile. He would wake up after surgery all smiles. It always surprised the doctors and nurses. He was definitely a warrior. He fought to be happy, was determined to be and succeeded. He even died with a smile on his face. 

Liam's smile was infectious. You couldn't help but smile back. And when he didn't smile, things were beyond bad. There were plenty of tears from being sick as well as being mad he didn't get his way. Mostly just when he didn't get his way. Me he only didn't get his way when it would cause harm. 

But even those fits were short lived (usually), and he would be back to smiles. 

To see such a huge spirited, full of life little boy pass is.... There aren't even the right words. 

3 weeks today. 3 weeks since I held my sweet boy, kissed his head and whispered in his ear that I loved him. My heart is still breaking. I can't begin to mend my breaking heart until it stops breaking and I don't think that'll ever happen. 

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. 

01/02/2012

I remember the day I found this hat at the grocery store. I just had to buy two. This Dalmatian and a brown bear. It was really big on Liam's tiny head but so cute. I laughed so hard when I put it on him and he pulled it off. I had to put it on 5 times before he finally looked at me like this picture. I laughed even harder. He always had lots of charisma and attitude ❤️❤️❤️ #cdhawareness

New Year Without You

The new year is here and I don't know what to do without you. 

I had to be stronger than I ever thought possible to be at your side these last 4 years 5 months 1 day and now that strength has nothing on what is required now to go on without you. I keep going through the motions thinking one day it'll mean something. Right now it doesn't. 

I miss you. I can't stop missing you. I can't stop loving you. I will never stop. 

I can't stop bottling it in. It hurts so much to feel the pain that my brain is trying to protect itself and my heart.

We watched the Rose parade this morning. When the Disney float came on and preformed I broke out crying. I couldn't stop thinking about how much you'd have loved and and been screaming excitedly at the tv. Then everything else you'd be missing out on flooded me and I couldn't stop the tears. I changed it shortly after. 

Home care came and picked up your concentrator and oxygen tanks. Even though I was glad to see it go, it was hard 

I took back a lot of your Christmas presents the other day and exchanged them for a fire/water proof safe and a portable hard drive to store all your pictures and videos. I kept a big box full of presents to donate to Children's hospital in your honor. I haven't decided if I'm going to do it for your birthday in July or CDH awareness week. I'll be adding lots more to it before then though. Blankets, pjs, stuffed animals and toys. 

I feel horrible that you didn't get your big birthday party this last year. 

I wish you had gotten to do more. I wish you could have stayed here with us longer. I know it's selfish and I'm trying so hard not to be. I keep reminding myself that for the first time ever, your not sick. You can run around without coughing. I bet your really fast now. You no longer need a feeding tube and I bet there's endless supplies of Doritos, pizza, spaghetti, sausage and beef jerky just for you. And even though I always thought you were perfect, your truly perfect now. 

What I'd give to hold you right now. 

I don't know who I am anymore sweet boy. When you came along, everything was all about you 24-7. I always did things for Lanie too but it was always around your medical needs. These last 4 years 5 months 1 day wasn't fair to anyone. 

I thought we had beat the odds little lamb, but I was wrong. I thought you had a whole long life ahead of you, but it wasn't to be. You flew through NICU and shocked everyone. We weren't supposed to even have these last 4 years 5 months 1 day with you. I'm greatful for them though, even if they were hard all the time and we had to evolve and adapt with them. 

I'm glad your no longer in pain, and I thank God for that. But I can't grasp why you couldn't be healthy here with us. I'm not meant to understand. Only to place it in Gods hands. Please know, baby boy, that when I finally get to heaven, I'm going to hold you close and probably never let you go ❤️💔❤️