As the day approaches

I've been writing a blog about once a month. It's been hard to find things to write about lately. I feel like I'm a little further in my grief where I just feel... empty. I feel blank and drained. I know a lot of it is the grief but between class, work, balancing life, and trying to just take care of everything... it's been a lot on my shoulders. I feel like I’m often repeating myself and I don’t know if people really want to constantly hear about the same thing over and over. I realized the other day that the blog was started primarily for me to process my feelings - over Greyson’s diagnosis and now my grief. I want anyone going through similar journeys as us to know they are not alone and to know what they are feeling is normal. As time continues, emotions fluctuate, life changes, grief shifts, and you personally go through so many transitions.

I just completed Advanced Anatomy and Physiology - which is my jam. I love anatomy and I love physiology, but man.. it's been SO long since I've taken the basic class and this is supposed to build on top of basic anatomy and physiology. I originally took anatomy at Northern Michigan University probably in 2007.. physiology was after that. They were taught by two different professors at a different University and it's been 15 years since I've taken these classes (ok, that's disgusting.. how am I that old?!) Now I'm taking Advanced and some of this should be a review but it's been so dang long, I don't remember this stuff. I haven't had to use it in my banking life. Some of it jogs a little memory buried way back in there but it takes awhile for it to come forward and not much is left from 15 years ago. I've been putting in a lot of hours studying and it's been overwhelming. I love my teacher though, you can tell how passionate he is about the subject and getting us interested in it. It makes going to class easier having your teacher care so much about what he is teaching and his students. It was hard but it's done and I passed!

I had my official nursing orientation last week and started my first semester of nursing school Monday. I am taking Nursing Skills, Nursing Fundamentals, and Microbiology. It’s only day 3 but I’m excited for this semester. My teachers seem awesome and I’m excited to see what comes next.

Work has been going well. I've been picking up extra hours here and there to help out and also have a little help with my paycheck. It's been 3 years since Adam left his job to be Greyson's caregiver at home and I went part time. 3 years of ONE part-time income for our family. We also decided to start the IVF process to try and have another child. I'm not sure how much of that journey I want to share upfront- just in case things happen of course, but if anyone out there is considering IVF and needs someone to talk to, please feel free to reach out. We are JUST beginning, nothing fancy happening yet. We just know we are not done being parents yet and I know that Greyson would want us to have a sibling. IVF with genetic testing is our only way to feel comfortable having a child because they can test the embryo before implantation for Tay-Sachs and other conditions. I want to have more children, I just know that I can't watch another child go through Tay-Sachs. My heart cannot handle losing any more children. I can't. Adam can't. Our families can't. It's not fair to the child either. IVF will be our safest way to make sure our child has the best chance of being born healthy.

I know with this pregnancy, I will probably be overprotective. I plan on taking every vitamin I can to help the fetus, eat all the pregnancy super foods, limit caffeine (I did all this with Grey too) but probably a little more strict this time around. I plan on listening to my body more and making sure I take breaks when I need them and rest more. I was so concerned with getting everything done and done now - grief has taught me a lot about letting things go. Things can wait, you can ask for help, and often, people WANT to help. I've been working in my therapy about how I will feel having another child. I never want to "leave" Greyson out. He is our first son. He is our oldest child. He is my son and I love him more than I could possibly put into words. His siblings will know him and we will share stories about him.. but therapy made me realize, I am a damn good Mom. I love fiercely, I protect fiercely, and I would give up anything to make sure my child has the best life they possibly could. Mom is my favorite title I have ever earned in this life. Tay-Sachs was something I couldn't protect Greyson from but he taught me how to advocate for him, my husband, and myself. I learned "no" is not an acceptable answer when it comes to my child's needs. I learned that I NEED to take care of myself because dealing with medical professional (sometimes, not always), the insurance companies, and programs designed to "help" are often a fight. You need to be ready to dig your heels in and say I'm not taking no for an answer. I will do what I need to do and I won't back down. Greyson taught me how to grow from being a Mama bear to a Mama dragon.. and you bet your ass I won't ever forget that lesson :)

I keep thinking of the future- how will it look. It's a little blurry and there is a piece that will forever be missing, but I just have this feeling in my gut, Greyson has everything under control for us. I know he's playing a huge roll in Adam and my success in school. I know he's watching out for us. I know he hears me when I talk to him and when I say how much I love and miss him. I know he's there. Auntie Courtney bought a house with a pool so Adam and I have been swimming a few times this past week for a break and both times, a chickadee has been right there. I know deep in my gut, that's my baby. He's saying Hi Mom! I'm hanging out with you and Daddy! He would have loved getting in that pool with us!

My grief has been coming in waves. Every day is a little different and some days I have triggers that brings everything back up to the surface. Some days, it feels just like a dull ache. Some days it’s a stabbing pain, just a constant reminder of how much I miss him. It feels like I have a hole in my chest and that void is substantial. It’s a part of me that will never be replaced, it will always be a vacant. I was reading a book and I saw this passage and I was thinking how perfectly it explained grief vs physical harm. ”When people get hurt physically, you can see it in the bruises and the scars, but when they’re hurt emotionally, mentally it runs deeper than that. You can see every sleepless night in their reflection of their eyes; you can see every tear stained into their cheeks, every bout of anger etched into the creases in their foreheads.” (A Flicker in The Dark - Stacy Willingham) I don’t know if can always see the emotional scars like you can the physical. I wouldn’t say that you can see every tear that has rolled down my face, and sometimes that is because I hide it well, but I will forever carry the emotional scars of losing my son. Holding him tight to me as he took his last breath will forever be etched into my soul. I was there when he took his first breath of air and when he took his last. His Angelversary is coming up on the 6th of September and I’m struggling with the realization that it’s almost been a year without holding my baby boy. A year without reading his books with him, singing his songs with him, and snuggling with him under his dinosaur blankets, listening to his coos. I’m not sure how I have survived to be very honest. Every day is different. I don't know how I'm still standing and some days I don't feel like I should be.

I’ve also noticed that my grief has affected my motivation. There are days my to-do list is simply too overwhelming. I just can’t focus long enough to complete it. It feels like that is happening a lot lately. Every small task feels like such a huge undertaking. Even if it truly isn’t. I’ve been looking more into creating Greyson’s foundation- but that is another task that I just feel like I need more time with. I need to create the official mission and narrow down ideas on how I want to help. I think I’ve come up with the main name and then working on a sub-name for half of the mission‘s focus. This past week I've had this productive cough that I couldn't seem to shake. I felt awful for a few days and then felt fine but the cough got worse. I was scheduled to work all day until 5:30pm and I headed into the walk-in clinic. The doctor said he's seen a few patients with the exact same thing and he thinks it has something to do with the air quality. He gave me an inhaler to help try and open up my lungs. Well, Adam ended up texting me shortly after he was going to the ER because he wasn't feel well either. Thankfully he's ok, but it made for a very long day and night. I honestly couldn't take anything Wednesday. I had an acupuncture appointment and that is all I did. I could NOT handle anything else.

** Inappropriate language and difficult discussion ahead, proceed with caution**

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Thursday July 27th we headed to Michigan for our family vacation for the annual Art On The Rocks/Outback and Blueberry festival. It was a wonderful weekend at home, but yet, another constant reminder of what I am missing in my life. Seeing kids that are around Greyson's age or younger- things he should be doing but isn't. Seeing kids who progressed more than he ever was able to, continuing to grow and thrive. How is this my life? How is this my fucking life. How is this my reality? I held my son as he took his last breath before he turned 3 - yet I'm expected to continue living and being a "productive" member of society. I'm expected to be able to function and survive. I WATCHED MY SON DIE IN MY ARMS. I watched as my husband carried our boy out to a mini van that took him to a funeral home knowing I would never hold him in my arms ever again. HOW AM I SUPPOSED TO DO THIS? Other families can continue to snuggle their babies, read them bedtime stories, have more children without this fear that we have, watching kids play at park... Grey never even got to play at a park. How is this my fucking life? It's almost been an entire year without my son in my arms. 365 days. The past 365 days have been the absolute worst days of my entire life. There is a hole in my chest and my heart feels like it's literally broken.. like it physically hurts. It feels like my chest is tight and my muscles ache. I feel like I will never have any reprieve from this pain. I'm so angry. I know I'm not the same person I was before- and for the most part, it's been ok. I've been ok with that, but I hate how angry I am. I hate how broken I am. I hate that I'm still here and Greyson isn't. I hate that my baby had to go through this. I hate that my husband and our families are going through this. I fucking HATE this. I wish I could just rewind time and have a way to save Grey from this. Trade places, do SOMETHING to keep him with me. I want to be chasing a 3 year old around at a park and teaching him things, playing with toys and reading books. I just want my son. I want to hear his voice and have him tell me stories. I want to be annoyed with how long it takes him to tell me those stories. I want him to ask me for new toys. I want to hear him call me "Mama" again. Why is this my life. I'm tired of being sad - like I know I will be sad for the rest of my life at times because I lost my son. I just wish this wasn't how life was.. it shouldn't be this way.

If I'm being honest, I'm terrified IVF won't work. I'm so scared that I won't be pregnant again. I'm also scared that I will be pregnant and I'll be afraid to connect with another child - because of what we went through. I want another child but I feel like when I *want* something, life finds it hilarious to rip it away from me. You want a baby? Suuuuure, but guess what? He won't survive past 3 years old. You think you're doing ok? Well we better change that and have the grief wave come knock you on your ass to remind you you're not ok. I feel like I'm almost on edge all the time.. waiting for when the rug is going to get pulled out from under my feet. I think I find my footing and life comes by to reminds me I'm wrong. I'm just scared to get my hopes up I think with IVF. I want more children - and what if we don't have them? I don't know how I'll feel about it. I am so angry that we have to do all these steps in order to have a healthy child - yet other people can just HAVE children. No worries, no looming death orders in their genetics. I'm so fucking angry - and I HATE that I'm angry. It's not AT anyone or anything, it's at the situation.. it's at the stupid fact that I'm a carrier of this awful disease and I had no idea.

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I don't know- it's been a lot on my shoulders this past few months between school, work, grief, trying to take time for myself, make room for emotions.. I'm feeling drained lately. I'm trying to keep up with everything and just stay above water if I'm being honest. We really wanted to do Greyson's garden this year, but it's slipped away from us. We spent the past few days ripping out the weeds, digging out the beds, getting better soil and moving it in. This Saturday my Mom and I are going to get some plants if we can find any this late in the season. We decided to plant just around the hot tub. We have space along side the sidewalk we made but we are going to just do planters there to make it a little easier on us with up-keep. Easy sounds good right now.

I know that Grey's angelversary is a day I want to do all his favorite things to honor him. I am currently creating fundraiser with Bonfire to help our family and NTSAD for their day of hope. I feel like my grief has increased 10 fold because his angelversary is coming up and I just can’t seem to wrap my head around the fact it’s been a year. It hurts. It feels like the original grief wound is reopening back to how deep it was right after we lost Grey. I’m struggling with sleep again and I dont know if I’ve gone a day without crying at some point the past few weeks. It feels like the work I’ve put into myself has been pushed back down deeper and the wound is so fresh again.

The other day I realized I still can’t say ”Greyson died.” ”My son died” I always say ”Greyson passed” ”my son passed away” and I’m not sure why. It feels like saying he died feels so final and abrupt. In my nursing skills class we had to introduce ourselves to the class and why we are in the nursing program. Well, obviously my reason is Greyson. I said ”we lost Grey” and it felt werid to me too. Tay-Sachs stole him, I know where he is, but Tay-Sachs robbed him from us.

I am trying to just survive right now. It feels so fresh and re-opened.

The next post I’ll do will be more photos and videos of him. I just feel so broken the past few days.

xoxo,

Kim