another month gone by

This seems to be a trend in my blogging lately. Once a month type updates. I've been focusing a lot of my time and attention on my schooling and making it through this semester. We are getting into the "meat and potatoes" of nursing school now and learning a lot more in depth concepts instead of just the surface topics. It's a lot, but I am enjoying learning more about the human body and the diseases processes.

This semester I am taking Health Alterations, my first med-surg clinical, and I just completed a phlebotomy and basic lab certificate. I needed to take some extra courses to be able to use my scholarship funds so I figured phlebotomy experience would be something I can use in the future. I really enjoyed the class and got over my fear of drawing blood quickly. I think I was more worried about missing veins and causing discomfort but we were all in this class together and practicing on each other, so it wasn't as bad as I had anticipated. Health Alterations is the class that I'm spending the majority of my time on right now. It's hard because we don't have lecture IN CLASS.. we spend in class working on case studies but we have to watch the lecture videos outside class time and I'm a big note taker.. so it takes me a while to get through each video. I have a 5 subject notebook for this class.. and I'm half way through the semester and I'm on the 3rd subject part.. so hopefully this notebook will be big enough to finish out the semester!

Clinicals just started this week. We had orientation at school, so I haven't gotten on the floor yet but I am a little nervous about this one. It's med-surg, so you can see a lot of different cases in a single day. Our previous clinicals have been specific patients, with long term care facility and labor and delivery. Your L&D patients may have different things going on depending on where they are in labor or postpartum, but generally our days looked similar. Med Surg you never know.. and the unknown is what is making me a little nervous.. for a few reasons. 1 - I do not feel competent as a nurse YET. I know it will come with practice but learning about diseases and nursing interventions on paper is one thing, but remembering everything and putting it to use in the real world is another. 2- I'm worried about triggers while I'm at the hospital. My PTSD is a lot more under control these days than it was closer to Greyson's passing, but I'm just hoping nothing triggers a panic attack while I'm there.

Our NTSAD family lost two beautiful children this past week. This is the reality of being a part of the NTSAD community and it's the HARDEST part. I would have been absolutely lost without finding them after our diagnosis.. I can't even imagine how different our life would have been without them. I always refer to NTSAD as our support group, because it truly is. We have a family facebook page where you can post any question you may have, without judgement, and you will get responses immediately. You can share wins, highs, lows, whatever you have going on, and someone will be there to cheer you on and lift you up. It's just really hard being on this side of the journey, seeing new family members join... or seeing another child pass away, It's heart breaking every single time. It's like the grief scab gets ripped off and leads you to having an exposed wound all over again. Within that same breath though, it's so hard for me to "step back" from the group because I still lean on my NTSAD family and I want to be that support for the others. I still want to hear how the other children are doing and how their lives are going, but yeah, it hurts, Every time a child passes, a group of other loss mom's reach out and "did you see?" "our children just deserve so much better" "what can we do to help them?" Every person grieves differently and grief can look so polar opposite for each person.

I mean, I share my heart on this blog. This is how I process my feelings and capture memories because I don't want to forget. I don't always post every blog (sometimes it just anger that needs an outlet, or it's me crying into my computer screen and writing with pen and paper is hurting my hand/taking too long), but posting also makes me feel like if I reach one person - to let them know they're not alone- or to educate about Tay-Sachs, Canavan, Sandhoff, GM1 and NTSAD, then it's worth it. Adam is the opposite. He doesn't share always and he stays quiet. He's supportive for me but doesn't bring his grief up very often. Both are ok, as long as you are there for each other when you need. I honestly feel like I have my other half in life with Adam though. He is the ying to my yang.

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Another half finished blog. I write and then stop to go back to studying or finish laundry, clean the house, or whatever needs to be done. I've been finding it hard to just sit down and just write and complete my thoughts.

Today needs to be blogged. It's Greyson's 5th birthday today. My sweet handsome boy would have been 5 years old today. My mind keeps wondering off to what would he be like if he had been healthy. I was driving on my way to work the other day and asked out loud "Buddy, what kind of cake would you want this year?" and instantly I said "TRUCKS" after. So Trucks it is! I have a feeling he would have been into cars and truck this year - especially because Daddy just bought a new truck recently. He would have loved riding in it!

I'm trying to keep my mind active today. I do have to work in a few hours for a short shift, I have an exam tomorrow so studying will need to happen, but I am also going to take Millie for a walk, maybe jump in the hot tub, and sit in Greyson's room with his lightz of hope on. We are going to go out to dinner with my sister and niece on Saturday to celebrate. We are going to Mackinaw's here in Green Bay because it's the first restaurant Grey was ever at. I remember being petrified to take him in public, but he slept like an angel the entire meal. He was wonderful!

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November 18th, 2024

I have such a problem sitting down and finishing a blog lately. It's difficult to stay focused without finding something else that needs my focus right now. The days leading up to Greyson's birthday were extremely hard on me. I struggled hard this year. I know part of its, our NTSAD family has lost so many children this year.. and each one is just a reminder of Greyson being gone. When I met with the medium the April after we lost Grey, she told me that Greyson takes it very personally to be the one who welcomes the NTSAD kiddos in Heaven. I can picture him there, waiting to be the one they see so they aren't alone. Him showing them the best spots to made mud pies and get the dirtiest. It's just hard knowing what the families are going through because I feel like the months immediately after his passing, I was just in a fog. I tried to function but I just couldn't. I wanted to jump into creating Greyson's foundation, starting nursing school, and throw myself into channeling to ignore my grief. Grief just has a really great way of reminding you it's there. You can't ignore it or shove it down, because it will find it's way to the surface. When mine hit me, it hit me hard. I felt like a huge failure because it was my genes that gave Greyson Tay-Sachs in the first place. It was my fault that he got sick with pneumonia from Denver (or the plane, hotel, travel, or I brought it home from work, or something), and I blamed myself for the fact that he passed away. I wasn't sleeping, I wasn't eating properly, I was NOT drinking water, and I was suffering panic attacks. I didn't see that I wasn't taking care of myself, but I wasn't. I tried to, but I wasn't. There are still days, 2 years later, that I just don't have the motivation to do things and all I want to do is lay down and just shut my brain off.

Those first few months after Greyson passed, I hid my grief. I let it out once and while but I wanted to hide it. I didn't want people to see me cry.. I didn't want pity or the "I can't imagine how you feel" comments. It honestly pissed of me off. You can imagine how I feel.. imagine your child died. Imagine you will never see your child again because they died, in your arms, after watching them deteriorate for a year. Yes, you can imagine, you just don't want to. I lived through the nightmare of every parent.. and some days I am shocked that I am still standing. I HATE knowing the parents of children who recently passed are at the beginning of their true grief. They've been living in their anticipatory grief, but now it's true grief without being able to cuddle their baby. That was the hardest part for me, because at least with anticipatory grief, I could squeeze my baby, read him his books, and kiss his chonky cheeks. Once he was gone, I was alone in my grief.

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December 1st, 2024

Well, talk about a delayed post. I started this post in October. It's now December. My time has been mainly focused on school. I am usually better at finding time to just sit down and write, but it's so hard when I can feel my focus being pulled in other directions.

Christmas is coming and I'd like to continue the tradition of filling Greyson's stocking with photos, drawings, cards, and whatever makes you think of him. If you'd like to send him something this year, please let me know and I will send you our address. You can email me at greysons.brave.story@gmail.com or you can reach me under the "contact us" on the blog. I'm also going to start raising funds to create Greyson's Foundation in 2024. I am ready to get the ball rolling on this project and to pour my heart into it. If you are interested in donating to help the foundation, I do have veno, zelle, and I'm trying to find a platform for donations that doesn't take a huge chunk of the top (like gofundme does). I'll keep you posted!

I think my first project, if I can get some funding to help me, is "adopt" a boy around Greyson's age for Christmas to help buy presents for him. Completing part of an angel tree is something I am feeling a pull towards and I'd like to help another child in need in honor of Grey.

Ok, back to studying - I have an exam tomorrow BUT I promise I will work on uploading photos from Thanksgiving and things soon. I still need to update photos of Greyson on the main pages too!

xoxo

Kim