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.