As Time Moves Forward
- kim.rudness
- Oct 2, 2023
- 8 min read
September 15th, 2023
I lost it today. I cried, in the middle of a very busy Hobby Lobby.
I went in to find some fall decor. I went in feeling fine, kind of rushing to get home to Millie, but I felt ok. I turned the corner and saw the massive display of Christmas items already. It's September 15th.. and they have so much Christmas decorations out. Anyone who knows me, knows I love everything about Christmas. My Dad IS Clark W. Griswold and he passed that on to me. I have so many storage totes of Christmas items, it's a little ridiculous. I walked in the back of the store where more Christmas items were overflowing to.. and I felt the knot in my throat build and the tears welling. They quickly overflowed and I went down an empty side aisle to let it out. Another Holiday coming up, where I don't have Greyson.
Grey loved the Christmas lights. We had the Christmas tree up when he finally came home from the NICU and I would always turn it on during our late night feeds. He would always look for it and would be so content. Just like his Mama. There is something special about the soft glow from the Christmas tree that is just extra special.
But this display reminded me, this will be my second Christmas without my son. This will be another year without him. It felt raw today. It felt like my chest was being impaled. It was tight and I was struggling to find air.
I am thankful Grey is free of all the medical equipment, appointments, medications, shake vest treatments - but I'm so angry he's not here to be a KID. I'm so angry that he was robbed of a "normal" life and that I was robbed of a "normal" motherhood experience. A mom was in there with two young kids and you could tell she was overwhelmed and overstimulated. Both kids kept asking her for things and constantly saying "mom!" "Mom" "MOOOOOOM". I want that. I want to feel annoyed at Greyson asking for everything and get tired of him talking. I only heard Mom/Mama a handful of times, and it was the most beautiful sound I've ever heard. I can sympathize with that Mother- feeling overwhelmed. but I never experienced Greyson talking my ear off or asking me for every toy. I kept hearing her say "well, make sure you put it on your birthday list or even your Christmas list for Santa." I want that with Greyson. I know it's ok to cry and have my emotions, but who would have thought a display (and of my favorite holiday) would break me.
September 19th, 2023
Adam was gone last weekend to deer camp (hence why I was at hobby lobby.. haha he wasn't there to tell me "do we really need that?") but I was a good kid. I only purchased a few things for fall to make our house feel a little more homey. I spent the weekend cleaning the house, top to bottom. Millie is shedding and I wanted to make sure I dusted and vacuumed up as much as I could while I had the house to myself. I went through my closet and organized everything, got rid of what I haven't worn in awhile, and started to go through our basement. Time to purge of somethings. Greyson's room is still the same from the day he passed. His closet is set up exactly the same and I honestly don't know when I'll remove his clothes from there. His baby clothes are in the basement in bins.. and I do need to go through it.. but I just can't yet. I know there are some pieces in there that I want to send in to make a Greyson teddy bear.. but I just can't yet.
I found a woman on tiktok who makes beautiful jewelry and things with ashes but it's the same thing. I don't know if I can muster up the courage to open Greyson's urn and separate some of the ashes to send to her. She does make beautiful rings and I'd love to have one - one day. I can save up the money for one while working on if I can separate his ashes.
... he shouldn't be in an urn. He shouldn't BE ashes. He SHOULD be playing outside right now begging to go to the park. Asking to go see Nana and Papa to pick tomatoes out of her insane tomato plants. He would want to go see Auntie Denise, Ella, and Pete because he wants to play with Nalle.. or go to Auntie Courtney's and swim in her pool.. or travel to see Auntie Stacey and Uncle Ryan.. Grandma and Grandpa.. but instead I had to have my sweet boy cremated.
Grief sucks. It's one of those things that I'm trying so hard to stay positive.. because grief exists because love exists. My grief is so damn strong because I love Greyson so damn much. Grief is fickle. Sometimes it sneaks up on you when you least expect it to. Sometimes you can see it coming from a mile away.. sometimes it's silent and just sits next to you.. other times it slaps you across the face, making sure you know it's still there. I was definitely slapped across the face with it in Hobby Lobby. I was not prepared for it. Today, I was out walking Millie and I saw a group of young kids near a daycare all playing outside. They were in awe of Millie - "look at the cute puppy!!!" and it warmed my heart but also made me realize, Grey would be about their size and age now. Grief walked silently with me as I wondered what he'd be like today. I didn't cry or have a panic attack, I just felt the nudge of sadness and dissipated as we kept walking towards home.
I often think "what would Greyson do?" or "what would Greyson want us to do" and try to follow my gut. I want to do things that would make him proud. I want to do things that are productive and things to support who he has made me into.
With Greyson's foundation I am thinking of having two missions to focus on. I want to have a fund set up to help educate individuals, health care workers, medical providers, and students on the importance of expanded genetic testing and share our experience with them so they know rare is real. Rare happens. I want to help educate them on how *sometimes* in these cases, parents know their child best. We are with our kiddos most often and we only see our medical providers for such a short period of time. It's a blip in a single day. I want to educate families on the importance of *EXPANDED* genetic testing before they have children. I am working with Northern Michigan University now to speak to their nursing students. I've reached out to some local Wisconsin colleges/hospitals too.
The other mission I would like to do is provide a care package to children in the hospital, children who are diagnosed with rare diseases, and provide them (and their parents) items we found of comfort. I want to provide the programs we found that helped us along the way. We didn't have a social worker when we were first diagnosed so Adam and I had to do all of the research ourselves. It was awful. Trying to navigate the health care system, find programs to help us, what equipment we needed, all while working + school, grieving, and trying to take care of ourselves and Greyson. It was exhausting. If we can help share some of what we learned and take that off other families plates, I think that would be incredibly rewarding.
I'm working on creating some fundraising ideas to get Greyson's foundation started. I'll make another post when it's ready :)
September 27th, 2023
I noticed today how disjointed I've been feeling. I start something and then get distracted by something else. Hence this blog.. started back on 9/15. I've been focusing on school a lot lately. With my leave of absence from work that I'm currently on, I'm trying to be kind to myself and just take it easier than I have been before. I've been trying to read for enjoyment, along side my reading for classes. I've been trying to take more hot tubs and I have been taking Millie for walks every day. It's been a lot but having time during the day has been good for me.
I'm also incredibly proud of my husband, Adam. He started a new job as an LPN with Aurora medical and I'm so impressed by him. He left his job in 2020 to become Greyson's full time caregiver and I think he missed working. I'm really proud of him and how far he's come. He is working towards his RN while working but I know Aurora and his patients are lucky to have him as their nurse.
October 2nd, 2023
Man, I get started with the blog and then something distracts me and I completely lose focus! School has been pulling a lot of my attention lately. It's going really well and I'm really proud of myself. I've been working hard to learn everything and work ahead of schedule. I never thought I would say this - but microbiology is my absolute favorite class right now. It's SO interesting and my teacher makes it more fun then I remember it being the first time I was in college :) but I'm studying for our 3rd exam (which is Thursday) and I actually enjoy learning the material. My nursing classes are both going really well too. All 3 of my teachers and my check off NP for skills are all amazing. I got really lucky with my instructors.
My grief has been at bay for the most part this past week. I had a few moments of tears - one being tonight- over seeing spilt gauze of all things - but it was just a few tears before I composed myself. We are learning wound care in my nursing skills class and we are using spilt gauze for wound drainage. Greyson had spilt gauze we used over his gtube to help keep his tummy clean and free of any infection. I don't know why I felt triggered by something so silly, but I felt the tears welling up instantly. Thankfully, it wasn't enough to make me feel anxious and we kept moving on. I'm on leave from work right now and I'm really glad I am. I think this break has given me a mental leave.. just to allow myself to have my feelings in the safety of my home and not at work. It's been nice to focus on just school for a minute. I'm heading back to work next month but I still have some time off.
Next week we have a break off school too- so I won't have work OR class.. and I am really looking forward to getting somethings done. I want to clean out the house, work on Grey's foundation ideas, get ahead in my classes (nerd, I know), and fix the website photos. I have so many more videos and photos I need to upload and figure out what happened to the blog photos that disappeared. I am going to start making videos to share Grey's story for TikTok too and answer questions we've received - so if you have any, please feel free to reach out too!
xoxo,
Kim
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