Little reminders everywhere

I think the worst part of losing someone is the ache you have without them here with you. Like this...

Just his closet.. but there towards the back is an empty hanger. The last Tshirt my baby boy ever wore. His Lightz of Hope tshirt. It was big on him but comfy. He was wearing that shirt when he died and we chose to have him cremated in it. That empty hanger will never have that shirt on it ever again.

Then I drove to my doctor's appointment this morning. There sits his empty car seat that I'm too emotional to take out of my car. They're just small things but they invoke big emotions. I was telling my doctor this week that some days are okay, I feel the pain and the ache from him being gone but then there's that part of me that knows he's no longer suffering. I know that he is free from the body that failed him and in my mind he is running around and playing in the mud and just being the kid that he couldn't be down here earth side. But then the next day it hurts so much that I can't snuggle him, then I can't read him books, we can't play or do the things that we used to do together. And then the tears just start all over again. There's no playbook and there's no timeline for grief and I know that. I feel like our society kind of wants people to shove their grief down and move on. I feel like people want to skip grief because it's messy, and it's emotional, and it's not pretty. I know this grief will be with me for the rest of my life, and I know that eventually the little signs won't hurt this much, but right now I'm okay letting myself have those days. I'm taking some time off work so I can heal. My work has been amazing and so understanding that I need time right now. I'm not ok, and I just need some space to grieve and find a way to sew myself together.

A part of me will always be missing though. That part went with Greyson when he passed away. I will never be the same person I was before the diagnosis, and I won't be the same person that I was before Grey passed away. That's not necessarily a good or bad thing, it's just is what it is. I know I've posted about it before but Greyson really opened my eyes to the world of special needs children. Everything that we had for Greyson was a fight.. everything. Insurance fights you about the silliest things, they need a doctor prescription for everything, then the seating and mobility companies need an appointment with a physical therapist, the physical therapist needs to write a letter of necessity, they need a fitting appointment to make sure what size equipment they need to order, then it goes their insurance which most likely will get denied then it goes through Medicaid which they deny it a lot of times too. We had a lot of the equipment we had because of the Brown County waiver program. It took so long for him to get the equipment we NEEDED. No normal family is asking for a wheelchair for their able-bodied child.

Adam and I decided to take a mini-vacation back to Michigan Sunday. My parents have a home up there they rent out with VRBO/Airbnb so if it's available they let us stay there. We packed up the car and I took out the car seat. I held it together, but my insides feel like they are in a knot. As we drove out of town I realized this is our first trip without Grey. The first time we are leaving the Green Bay area without him. I didn't need to pack up the entire back with his equipment, playing jinga to make everything fit. But the biggest thing - I am sitting in the front seat. With Grey, I always sat in the backseat while Adam drove. One of us needed to sit near him incase he needed suctioning or something. I very happily volunteered to sit in the back with him, 1.) Because I'm not super fond of driving 2.) I loved holding Grey's hand and the way his car seat fit, it gave me the best angle. But now, I'm here. In the front.. wishing I was in the backseat with my buddy. Its been almost 3 years since I sat in the front. When Grey was a baby, before we knew our diagnosis, I sat in the back incase something happened and he needed me.. or to entertain him. We didn't do a whole lot of car rides but he usually did really well with them. He loved being in the car.

My handsome flirt.

There is no playbook for grief but part of me wonders if the hole in my chest will ever heal. I try to just keep it together and talking about him helps, but the tears usually start flowing as soon as I start. Seeing photos of the last day make me feel like my heart is going to shatter. I'm so thankful to have them, every single photo and every single video, but it still feels so fresh and even though I have amazing support, I feel so alone at the same time.

Being in Michigan has been a nice mental "reset". We drove in Sunday and stopped at Adam's Dad and Step-Moms house. We watched some football and played some games. After we left their house we had about a 30minute drive into town. We decided to grab dinner and then head to the grocery store. We were under a winter storm warning and they were calling for up to 2ft of snow overnight so we wanted some snacks and drinks incase the roads were bad and we wanted to hunker down. We woke up to rain, but no snow! It was really windy and cold so we headed to the Island - which is a peninsula that juts out into Lake Superior. We got some amazing photos of the crazy waves!!

The colors were beautiful out there too.

Then we saw 3 guys surfing in the lake. It was 38degrees outside!! The water had to be SO cold!

After our cold detour we headed to the brewery we are having Greyson's Celebration of Life at. We wanted to check out the space again, it's been awhile since we've been there so just wanted to see how we will set everything up. (**Also, keep an eye out this week for a blog post about the celebration of life. I will be posting the information soon. Anyone and everyone is welcome to come join us!) We grabbed a beer after we saw the space and sat down. I saw a table of games off to the right of us and went to see if there was something we could play while we drank our brews. I looked on the second shelf and saw this sticking out from in-between two boardgames...

Just a steggy sitting there. A sign from Greyson, I know it. There wasn't a coloring book near by or anything, just sitting there. So I grabbed it and took it home with me. I just know it was my boy saying "Hi Mama, I'm here!" The tears started welling up but in a happy way. After the brewery we went to the hotel I used to work at and grabbed an appetizer at their pub. I was looking at my photos of the lake and scrolled into photos of Grey. I saw this one.. when my sister gave Greyson a bottle.

He is so focused on her. Then I saw his little foot.. snuck out of his blanket. He would always find a way to get one foot out of his blanket. Always. And I just lost it. The tears starting flowing right in the middle of this bar. His little tooter out of the blanket just made me lose it. I miss him so much. I miss these moments and the little things he would do. His Grey-isms. I miss his personality. It took me awhile to get it together at the pub, and after I felt pretty drained. Grief is exhausting.

After the pub we picked up dinner and headed over to one of my girlfriend's houses. We spent some time with her and her family before heading back to our house. We woke today and no snow but more rain! We met with Joe who is making the cake for Grey's celebration, spent time with Adam's Grandparents. We grabbed dinner and spent some time with one of our friends, his new wife, and their son.

It's been so nice to be "home" and just spend time in our hometown for a change of scenery. It's difficult being here with out Grey, but it's difficult to be anywhere without him. I do feel like he's showing us signs everywhere and things remind me of him every day. The tears don't bother me, to be honest, the harder I try to keep them in, the quicker they come. So, I let them come. If we are in public and they come, then so be it. We are doing the best we can and it's helpful for me to let them out.

Once we are back in Green Bay, I will post more about Greyson's Celebration of Life. It will for sure be November 5th at the Ore Dock in Marquette Michigan from 1-5. More info to come ❤️

Thank you for being on this journey with Adam and I and we hope to see you then.

Xoxo,

Kim