Where do we go from here

Life has been busy and I'm still trying to find that balance between work, school, grief, self-care, therapy, spending time with Adam and my family/friends, trying to allow myself to have "me" time... it's a lot. I've been really focused on my classes lately because it's a huge adjustment returning to college after all these years. I've been out of school for so long.. reading for retention and reading for pleasure is so different. It's hard for me to read and focus and try to remember everything I just read. I'm currently taking two courses. I'm in Developmental Psychology and taking my CNA class. Right now, I am getting 98% in both classes, I'm pretty proud of that. My desk has been so nice. I have little reminders of Grey everywhere and items to bring comfort while I study. I have his Tiny Superhero card right at the base of my second monitor so I can see him while I'm working. Remember WHY I am doing this to myself :) Classes are an adjustment, but I'm feeling confident. I know I can do this.

I'm still working with my therapist weekly. I'm still doing EDMR therapy and it's slowly getting better. I honestly have no idea how it works or why it works, but it's working. Things that would have been big triggers are still triggers but smaller. One example is in my CNA class- we are wrapping up the "lecture" part of class and we were reading the chapter on end of life. There is a discussion in there on what happens to the body when someone is actively dying. I knew this part so well and glazed over it because sadly, I witnessed a lot of it with my two year old. Things I never thought I would have witnessed when I was pregnant. Things I never planned for when I gave birth. Greyson taught me so much without me even realizing how much I was learning. He is going to make me a better nurse. HE is getting me through nursing school.

I was in our bedroom the other day and realized - I don't think I've really shared this poster that was made for Greyson. It's through this amazing program called The Superhero project

(their website is here: https://www.superheroprojectkids.org/home) and they meet with you to learn about your child and take their favorite things and ask what superhero power would they have. The artist drew this after we met and it turned out perfect. Grey's steggy with balloons and water, lights, and his ppod chair.

During my therapy appointment today, my therapist asked me what Grey liked. Greyson loved water. He loved drinking water, swimming in water, splashing.. he loved his water. He loved his lights, he loved when I'd sing to him, he loved being outside, the sounds of birds, his books (especially his train book and the one that plays bird noises). He loved to snuggle - and he was the best snuggler. He loved his bubblegum toothpaste, the grape flavored tyelnol (he did NOT like the cherry flavor), he liked cotton candy, he loved his drum set, balloons, and fighting his naps :) She suggested I write these things down so that as time goes on, it won't become muddled. He was such a sweet boy and despite losing a lot of abilities, he still found ways to communicate with us. He showed us he liked things by cooing and making his noises. He'd wiggle.. like do a happy butt dance and if he wasn't fond of something, he'd make an icky face or turn his head away. Even before Tay-Sachs took a lot from him, he was such an easy baby. He was so sweet and so brave.

I start my CNA clinicals this weekend and I'm feeling really anxious. The last time I was near a pulse-ox machine, I had a panic attack. I'm worried about the noises reminding me of Greyson's and losing it there. I'm worried about triggers setting me off. Somethings that I never thought would be a trigger have been.. like the oral swabs (apparently aka toothette) made me tear up in class. It's used to wet down someone's mouth that may have trouble swallowing, or in our case, we used it as a tooth brush because it was easier to get in Greyson's mouth. We were talking about how it's used when someone is actively dying to keep their mouth moistened because their saliva production slows down. Que the welling in my eyes. I held it together but I'm worried about what I'm going to see there and how I'm going to handle it. Thankfully my therapy is helping but it's not like I can just turn it off. My therapist said my PTSD will slowly get better with this EDMR and it caught me off guard that yeah, I have PTSD. I mean I knew I was depressed and I have had some pretty severe anxiety, but the term PTSD felt like it wasn't correct for me. But yeah, I lived through something traumatic. I watched my baby boy die in our arms. I watched my son take his last breath. I watched him turn blue. I placed him in a van that took him away from me forever. I picked out an URN for my 2 year old. Yeah, that's pretty fucking traumatic. And that was just his last moments. His diagnosis was traumatic, him losing his abilities and getting a gtube, and hospital stays, and being enrolled in hospice.. all pretty traumatic.

February also starts Rare Disease Month. The message this month is rare is real. Rare happens. Rare may seem like a small statistic until it happens to your family. Tay-Sachs was nothing I was concerned about while I was pregnant. I wasn't worried about my son dying before his 3rd birthday. I wasn't worried about all of the medical equipment I would have in my house or the fact that there is only ONE hospice in my area that will take pediatric patients... and they technically don't take our insurance. It's nothing I thought about until it was my reality. When something like this happens, your eyes are open to so much. I have learned more about how to care for rare children, how to choose my words more wisely when speaking with others, better ways to show support and care, and honestly, how to just love deeper. Life is too short. Greyson taught me that. Life is too damn short- so do what makes you happy. Travel. Read. Rest. Hell, return to college after 14 years and start a new career :)

I posted this quote on my social media pages- but it's been something on my heart. This quote is from the show Yellowstone. I've never watched a single episode but I was mindlessly scrolling TikTok and someone posted this quote and I lost it. Instant tears streaming down my face. It's so true. Greyson lived only knowing his family and only knowing how incredibly loved he is. We know his life was short and we know how broken we are now, but Greyson didn't. He was loved from the moment I peed on that stick and he will be loved until I take my last breath (well and beyond when other people who love him live longer than I do!) but these kids who go through these diagnoses are special. They all have an angelic quality to them - every single one of them. They are brave and despite everything, they show us love in return. When I'm having a particularly shitty day, I think of this quote. I think about how much Greyson is loved. People who never met him, love him. I'm so proud of this kid. I'm so proud to be his Mom. I'm so proud.

Ok- I've been holding something in for the past 3 days and time to spill the beans. Adam and I welcomed a new family member into our home this weekend. Meet Millie!!

She is a 10.5 week old corgi mix puppy. She came from Oklahoma with her siblings but I don't know much else about her story. Her Mom was a corgi and not sure about Dad but she looks a little Heeler/terrier to me. She is the SWEETEST girl. She loves to snuggle, she loves to be near us, and she is so well behaved. We are working on potty training and she's doing SO well. Her foster Mom said she did well at her house and Millie is getting used to our house now. She's currently napping in my office with me while I work on this and my homework. I can hear her little snores. She loves to be held and she is opening up. We took her to the pet store today and picked out a new bed, some new toys, her food/water dishes, a collar, a leash, and some treats! Adam and I kept going back and forth if we were ready for this responsibility and we weren't sure to be honest, but we love her already and having her to snuggle has been so therapeutic for me. She requires a lot right now but she will continue to grow and learn. So for now, we keep an eye on her (so there is no more poopies in the house!) but she is really getting comfortable here.

I think overall- we are doing the best we can be. I still tear up often.. I won't lie. I cried while writing about the PTSD but it's almost like I know that the tears are because of how much I love him. I'm sad and I miss him, but boy, do I love him. He is one amazing kid and I'm proud to call him my son.

xoxo,

Kim