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Alcohol and thinking of you = bad combination

11.09.2017 - Wednesday - Trump

Donald J. Trump will be our next President and I feel nothing.

Thanks Tay-Sachs.

My heart is already so shattered this seemingly devastating news does not phase me one bit.

Triggered

I have Grayson's picture as my home and lock screen on my phone. I see him every day. I think about him every day. But it's not every day that I get triggered. Where the wave of emotion is too overwhelming to stop. Usually I "self-trigger" when I'm at home and I let my thoughts go places I know I shouldn't.

And then sometimes it happens at work when I least expect it.

I was scrolling about on Facebook and I saw that my cousin's boyfriend posted a sonogram picture of their baby. In the caption he said the baby's name. And the baby's name is Grayson. I yelped when I saw it. It took my breath away for a second. I tried to keep it in. I tried to stop the tears. My co-worker came back in to the office so I was forced to hold it but when I knew I wouldn't be able to I went outside and let it all come out.

How am I supposed to have my heart not break every time I look at her son and say that name.
I asked her about it and there was no real thought behind it. They just liked the name. All I can do is hope they change their minds. I want to say something but it's so selfish to do so. I just don't need another fucking reminder ...

One thousand seven hundred and seventeen point 3

is how many miles away Grayson is.

I wonder if he can feel my love from so far away.

Bulletproof

Watching Speechless, the son asked the Dad why he didn't care about what other people thought about him. The Dad responded that after he learned about his other son's disability he realized everything else in life was unimportant and that he was bulletproof.

Shortly after Grayson's diagnosis, I had a revelation.

For the rest of my life, NOTHING will hurt as much as this.

It's kind of nice living with that knowledge. This whole thing has brought this profound perspective on everything. When I'm bitching and moaning about something so insignificant, I think of him.

Forgiveness

Ten years ago someone walked into an Amish school and killed 5 children and injured 5 others before taking the coward's way out.
His mother was speaking on NPRs Story Corp today. She said that at her son's funeral, the Amish community came out and showed their support and forgiveness for her son, a murderer.

It was such a moving story. It wasn't months or years after; it was days. They found forgiveness in their hearts.

And I asked myself this question: do you think you could ever forgive God?

I believe that once we die, we die. No heaven or hell, just gone. Losing Grayson challenges those ideas because I don't want him to just be gone. I want him in the arms of his Gramps and playing with Tina and Bella. I want to know that when I think of him, he will feel it and he will know. And that one day when I die I will see him again and he will be just as he was and he will run up to me and hug me and tell me he heard me all those times he was in my thoughts.

Oh but my heart ... it's so broken and I feel so betrayed.

How can my heart be so full of love for Grayson and still so full of hate for God?

Though I've been muddling this over in my head all morning the immediate answer to my question was maybe.

Maybe ...

Ronan

Three pages into Emily Rapp's book and it's almost unbearable to keep going.

But I will ...

Dream

I don't always have dreams of Grayson, but when I do, he's absolutely perfect.

Guarantee

There is none.

In life, when you say goodbye to someone, it could be for the last time. But it's different with Grayson. As I sit in the Sacramento airport waiting for my flight home I wonder if I will ever see him again.

Saying goodbye was awful. I lost it. I had held it together the whole trip (minus listening to love songs I attributed to him while at Tryphon). But in that moment giving him lots of kisses, I could not stop the tears. I told him to hang in there and that I would see him in March (for his 3rd birthday). And I WILL. His Mom made a comment on Saturday that she hoped he made it to 3. That is a thought that has NEVER crossed my mind. After 3, yes, every day will be a gift but I never fully realized that when it come to him, it's day by day.

I knew I had to stop crying before I got back in the car where his older brother was waiting. His Mom came in because she had to pee so that helped break up the sadness. I told myself to get it together; grabbed my things and off we went. I thought I might cry more at the airport. I thought about how people were going to be starring at me wondering what was wrong. I filled my sad thoughts with the Nerdist podcast which provided me much needed laughs.

Grapes

At a vineyard in the Sierra Foothills. In the clear air of the morning. I thought these thoughts:

He'll be perfect.
Forever.

I have no hope. I have no prayers. I have no faith. I have no peace. All I have is love.

I would die for him.

Gone

I think about this a lot. What are we going to do when he's gone?

How are his parents going to get through it?

How are they going to keep going?

How are they going to be able to have another kid?

How are they going to stay together through this?
Will their marriage survive? Should it survive ... I can't believe I used that word. Survive. None of us survive this life. But at least most of us get to live.

The stress of the inevitable must be getting to them. On social media everything is as bright and rosy as can be but behind the scenes, who knows?

There is no way I would ever be strong enough to handle this. He's not even my son and it's like the end of the fucking world.

How am I going to get through this?

How am I going to keep going?

How will I ever be able to have a kid at all?






The answer ....

together.

We will get through this together.

Grief

My family has been posting this article on FB about grief. Felicia started it because well, it's everyday for her. Typically when people talk about grief it's the loss of a parent or spouse. Thankfully it is very rarely about the loss of a child. Because that should be something that NEVER happens be it to disease, illness, a drunk driver. Children should by law be given the opportunity to grow and learn and live and talk and laugh and say I love yous. After 18 all bets are off but up and until then death should never be an option.

So I think of Grayson and how whatever words I read will never capture what this loss will feel like. There are no words to describe this and nor should there be. Who wants to put into words these feelings? After having just read Patton Oswalt's post about his late wife, I was in the mood for a soul wrenching commentary on how to handle everyday. I clicked on the link and realized it was something I had read before. Except this time I read it differently. My perspective changed instantly. Usually when I read these things I get mad because the people who are dying actually got a chance to live. And Grayson will never get that chance and that is absolutely unacceptable. 

And then the me that talks back to myself when I'm conflicted or sad or angry, the other me chimed in. "yes but the number of people he has impacted reaches further than most people do in an entire lifetime. He has changed your whole life. Name someone else who has done that. Try it. You can't. This tiny person will leave a crater of an impact and that's not nothing."

And actually, that's everything. 

Felicia holding Grayson. His hand on her heart. It will be there forever. 

I should have known he was too good to be true ...

June 5, 2015:
The day I found out about Grayson.

We knew something was wrong. At Christmas 2014, when he was 9 months old, my cousin said he couldn't sit up unassisted. I sat him up and he did okay until he moved his head forward and that's the direction his body went. He had (has) a HUGE head so we kind of just laughed it off. He was the chillest baby ever ... which should have been the warning that something was wrong because while I love my cousin to the moon and back, ain't not way her and her husband have a chill child ... no way.

Four months later and after numerous doctor appointments Grayson had an MRI. His results indicated that the white matter in his brain was not as white as it should be. A quick google search and I read about the potential for developmental disorders. Well, that's okay, it's something we can deal with. After additional blood tests a ray of hope appeared. His delay could be because 1) the child is simply on his own schedule 2) child has structural problems/stroke issues or 3) child has metabolic issues.

SEEEEEE FELICIA ... he's taking his sweet time. Nothing is wrong with him, just leave him be. Since the day he was born I knew this kid was special. And the day I met him he stole my heart so there's not fucking was anything is wrong with this perfect creature.

In the midst of all this we were planning a family trip to Galveston. It's become an annual tradition especially since we only get to see the Kemps a few times a year. I had been talking with Felicia about activities we'd be doing while there. So when she texted me and asked if I'd be home later to chat, I thought nothing of it. I figured she wanted to talk about the vacation. Instead of a phone call I got a text. And that may seem a little cold but honestly, I couldn't have handled the phone call.

When I read the words Tay-Sachs my heart shattered. I ran to my room to cry in my bed but I didn't make it. I hit the floor and sobbed and sobbed and sobbed and screamed and sobbed and screamed and sobbed.

The next day I told my Mom. It took a long time. She knew something was up but let me take my time. She didn't react the same way I did but my connection the my cousins children is deep. I doubt I'll ever have any of my own so I give all my love to them.

No words

A little girl named Lily died from complications of Tay-Sachs.
Felicia commented on that post so I saw it.
I see these kinds of posts once in a while and of course they make me sad about Grayson but this time was different.

There was this quote: " ... she taught us patience, she taught us sacrifice, she taught us endurance, she taught us grace, an she did it without saying a single word."

These words felt like a mack truck through my heart for making me realize something I had yet to.
Grayson has never said a single word. His mother will never hear his voice. His mother will never hear him say. "I love you." I cannot imagine being a mother and never hearing your child say those words to you.