When sleep evades you

It's currently 5:12 a.m. on Tuesday morning. I've been awake.. and I mean WIDE awake since 3:00 a.m. and I cannot find sleep. I was tossing and turning in our bed so I went into the guest room and tried to sleep there. I gave up and decided to do something with my time instead of scrolling TikTok.

My biochem class is wrapping up and I can't believe it. I only have 6 more classes left. Two of those days are exam days and then I'm done. This is the last class I need before I can officially start the nursing program! I'm taking a summer class too, another class I need outside of the nursing program. All I have after that class is the nursing courses. I'm really excited to get going. I keep thinking how much Greyson has changed my life. I was a little lost before him- just in the sense of I have a great job but I don't feel like it's my life's purpose. I love my company, I love my coworkers, and I'm good at what I do... but I need to do more. Greyson gave me the push to get it done. The medium I went to earlier this month mentioned that Greyson is my catalyst. That phrase keeps coming back up in my mind. He absolutely is. He makes me want to do more, to be better, to help others like him. He taught me so much in the 2 years he was here with us. I have a feeling he is really proud of his Dad and I for doing what we are doing.

With class and work, I'm trying to make sure I find time for "me time". Right now, my go-to is reading a book in the hot tub. I get the jets going and grab my book and just soak and turn my brain off for a minute. I've finished 2 books in the past 2 weeks. The first one was Then She Was Gone By Lisa Jewell. It was really good and a really easy read. The other was Verity by Colleen Hoover. Very unpopular opinion, but I didn't like it. It's the second book by Colleen Hoover I've read and I didn't like either. It was a little predictable and it felt like it was set up for a really great story and just fell flat. The ending annoyed it- it just felt very like "of fricken course.." I just ordered two more Lisa Jewell books so hopefully those will be better. Up next is The Night She Disappeared which had pretty good reviews on amazon. It's nice to just go soak and relax.

I'm also trying to figure out how I want to make Greyson's legacy. I know nursing will help, but I want to do a foundation of some kind. I want to create something in his name. Right now my two main ideas are having the main foundation- Greyson Kent Foundation (or something) and have one part help families with expanded genetic testing. Help cover the cost, help educate families and physicians on the importance of it, help fight insurance companies to cover the costs, help make it accessible.. I'm not sure exactly. All of the above? Then the other part I'm thinking is creating a care package for newly diagonsed families. Things to create memories, things to do together, things of comfort (for both parent and child), things that make hospital stays easier on us, food gift cards, information on all the wonderful programs we found in our journey. Something to say hey, you're not alone in this. When we got Greyson's diagnosis, Adam and I felt lost. It was before we connected with NTSAD in a real way, but we were unable to get a social worker or anyone to really help us navigate the healthcare system. We were basically thrown out in the middle of the ocean and told to swim to shore. No direction of which way shore was or how far it was. Just figure it out. We asked for a social worker from our local hospital but it's "not something they do". It was bizzare and frustrating. Then came our application for social security benefits. We thought we would be approved because our son was terminal- but they also take into account your income and assets. Well, we owned both of our cars and they denied us immediately after because we could "sell one of the cars" for income. *insert eyeroll here*. It took me over 5 hours to fill out the medical portion of their application. 5. HOURS. It took them less than 3 minutes to deny us. Then trying to find programs in our local area for help, trying to find specialists to help, trying to find a hospice for my baby.. it was just messed up. It was SO frustrating and time consuming. We spent most of the week after diagnosis on the phone trying to find help. I can remember sitting at our dining room table on the phone with an agency and the woman asking me "well, what are you looking for" and us being like "I don't know!! What do you offer?!" We just needed help.

I want to try and help give some of those answers because we already did that work. I'd love to just pass on the knowledge and work we put in, so other families can spend that time focused on their child.

I think another way I'd like to do some outreach is with the Child Life Services in our local Children's hospital. We have a really small little Children's hospital - Greyson was there for a week last year after Denver when he had pneumonia - and they were wonderful. Child Life Services was so kind and he did get some special items because he was on hospice. We got a beautiful hand mold of his little hand, we recorded his heartbeat and put it into little teddy bears (they gave us 4!) and a big mold of his hand with mine. Things that are truly irreplaceable now. I think more children and families could use things like that. I think once I get a break from school in the next couple weeks, I'm going to sit down and figure out how to make this a reality. I'm not in a rush but I know I am meant to do this.

I've been doing ok with my grief. It comes and goes. Sometimes it feels like I'll never feel "normal" again. I feel guilty sometimes when something makes me happy or excited. I know he would want me to be happy, but man alive, I miss him so much. Parents shouldn't have to watch their kids take their last breaths. Parents shouldn't have the last photos of their kid they will ever take. I still can't look at those photos without crying. That day was really hard. My therapy is focusing on that day a lot still and it's getting better but it's really difficult. I'm currently snuggled up with his dino blanket and all I can think of is he should be using it in his bed right now, not me. I sleep with it every single night, but he should be using it still. I miss his noises. I miss his coos. I miss his snuggles. I miss holding his hand and playing with his hair. I miss when I didn't know what Tay-Sachs was. When I thought I was going to have my son with me forever. I miss being able to SLEEP, but grief has robbed me of that too. It's almost 6am now and I've been awake for 3 hours. Thank goodness I'm off today but this whole insomnia thing is getting really old. I hate how quiet the house is and I hate alone it makes me feel.

xoxo,

Kim