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.