Just the next step.. yet another thing.

*Inappropriate language ahead*

When we got the diagnosis- Adam and I did a lot of digging and researching what our future was going to look like. We knew that Grey would continue to regress, we knew seizures were in our future, we knew we would more than likely need to get a gtube surgery, we knew that he would eventually lose the ability to support his head, his muscle tone would become weaker, and that we would need a lot of equipment to help support our son and keep him comfortable. We knew these things were coming, but it doesn't make them happening any easier.

Grey used to roll over the minute he was on his back. He loved being on his tummy. He loved sleeping on his tummy and the minute we laid in him his crib, he'd roll right over on his tummy. Now he can't roll over anymore. He can't move his body like that. The seizures have started and we got confirmation on his EEG this week. He is having frontal lobe seizures and a lot of them seem to be happening at night while he's sleeping. We knew he was having them.. but still hearing your son is having seizures is incredibly hard to hear. You can tell when he is having them. His eyes flutter quickly and his arms shoot up and just shake. It's heartbreaking that I can't fix it. I can't fix this. So we are getting put on Depakote to help and a vitamin called carnitine to help protect his liver from the Depakote. So there is just another thing. Another step in this shitty journey for our son.

The next step is the gtube surgery. We are scheduled for his surgery on July 1st. We had plans to head back home to be in Michigan for the 4th of July, but now we will be in a hospital while they place a feeding tube into our beautiful boys stomach. My Grandma's memorial is July 6th and I may not be able to attend. Depending on how Greyson is doing.. I can't leave him or make him travel if he isn't doing ok. 4th of July is the one holiday my entire family is in one place.. and it's always a big deal in our family. We missed it last year because of COVID. Everything was cancelled and we didn't get together. Now this year, it's not happening again. It feels selfish, but I'm really disappointed we can't be home. I know Greyson needs this surgery and I would never NOT be with him, but I really wish our surgery could be after. On top of this, I'm also a little terrified for him to get the gtube. It's a surgery. He will be going under anesthesia and they will cut a hole in his stomach for the tube to be placed into.. and I will never see my son's sweet little belly without that tube ever again. I honestly am struggling with that right now. This diagnosis is so unfair. It's so unfuckingfair.

I've been trying to be strong lately and just stay in the moment. Enjoy the moments with him.. but then these things, these steps, creep into my mind and I can't keep it together. I'm tired. I want to take my son to the park and watch him run around. I want to take my son to his friends house and watch them play. I want my son to reach up to me, asking for him to pick him up. I want to be able to watch him grow up. It feels like every thing we knew was coming is coming so quickly and it's terrifying. He's doing good right now, but it's like the things that seemed further away, are now here... staring us in the face. And I just feel scared. I know what is coming- but I don't WANT it to come. I don't want his stomach to have this tube in it for the rest of his sweet life. I want my son to just be ok.

xoxo,

Kim