Death is not a game with the ones I hold close

Let me preface this blog by saying I woke up emotional, lonely, and angry as hell. This blog is one I always debate posting because it’s not rainbows and butterflies, but I owe it to myself to get my feelings and the added bonus - if someone reads it and feels less alone in their own journey. This blog contains anger and foul language. The ENTIRE blog,

I have a really hard time saying how I feel sometimes, because I’m afraid how it will be perceived. I am not suicidal -I’m not done changing this world for my son, but I hate my fucking life. Again, I hate saying that, because I have the most wonderful husband, family, and friends. I have support. I am loved, I own a home, I have a job, I am in nursing school, I am doing good things.. but I am a childless mother and I fucking hate it. I hate how mundane my days often feel. I hate how empty I feel without my son here. I hate feeling this way. I fucking hate that I am waiting to have more children because I’m overweight. I have been hitting the gym 4-5x a week, meeting with a dietician, making smart choices and I even cut out Diet Coke. Which, if you know me, I love my Diet Coke. But I want children more. The scale was finally going down, then I step on the scale this morning and BAM it went up again. I am so incredibly frustrated. Why is this all on my shoulders? Everything is held up because of me. I want children and I’m terrified it won’t happen. It’s literally all on me. I’m trying but if losing weight was easy, I wouldn’t be in this position. I hate it. I hate how helpless I feel. I hate taking care of fucking everything all the time. I hate feeling empty and like I’m wasting time. I hate today.

I am also very aware that our D-Day is coming up soon. The day that we got Grey’s diagnosis. The day our world crumbled. I’m so angry that this happened to my beautiful boy. That day is a blur of bits and pieces. I remember vividly sitting at the stark white, round table in the genetic office hearing “I’m so sorry” and holding Greyson tightly. He was wearing his white and black plaid shirt and carharrt tan hat. I remember taking in his smell and thinking they had it all wrong. They had to. This doesn’t happen to people.. children aren’t supposed to die. This was things of nightmares, not my life. I did everything right. I did everything I was suppoed to do. I went to college, I got married. I had a child. My child isn’t going to die, they read the results wrong. Here I am, 3 fucking years later and they had it right. THREE YEARS. Three years of anticipatory grief, holding our breath and trying to find a balance between living and keeping Grey healthy and safe. I was a flight or fight response for 3 years and then all of a sudden, it just abruptly stopped. It’s like you are on edge constantly, I never slept deeply for fear I’d miss Greyson needing us. I would be in this light sleep hearing every little noise and sound, ready to run into his room if he gave the slightest notion he needed us. I would only truly sleep well when he was on my chest because I could feel him and feel his chest rising and lowering with each breath. Now, I still struggle to find sleep because it’s too quiet. Our house is empty. Millie fills a portion of the void but it’s not the same. More children will help, but it will never be the same. My heart aches and I am wondering how long it will feel this raw. It’s been 554 days without my son. 554 without a snuggle, a smirk. 554 feeling this way.

I know I’m not alone and I have support but this journey is lonely as hell. Even people in our NTSAD family, who have walked in our shoes, who absolutely feel the same way as I do, it’s still lonely. Grief is just love with nowhere to go.. but it shouldn’t be this way. It SHOULDN’T BE THIS FUCKING WAY. Greyson would be getting ready for school and I know he would be so excited. What would he be into? Trucks? Dinos? Bluey? Sports? Music? I want to know his personality more because the small amount of time we had to see it, it was wonderful. He was so smart and sweet. He loved snuggles and reading books. He LOVED water and playing with his toys. Then fucking Tay-Sachs came in and took everything away from him. Away from us. I know I can speak for Adam on this part too, Tay-Sachs flipped our lives upside down and left a miserable crater in my soul. It’s there and days like today I can feel it.. and I’m absolutely shocked that people cannot physically see how empty I feel. I keep waiting for this nightmare to end and to wake up. What I wouldn’t give to have Greyson jumping on my bed to wake me up instead of his empty room. We still turn his lights on every night and when I turn them off in the morning, I always say “good morning Grey” but he should be in his bed, snuggled up with his stuffies under his dinosaur comforter. Instead his body is in a hand painted urn. It feels like I can’t take anything else.. I just can’t handle anything more. My heart is shattered and I don’t know if it will ever be back together. I know a piece will forever be missing but how am I supposed to just keep moving like I didn’t hold my son while he died, like I didn’t have to watch the funeral home take his body away, like I didn’t see his beautiful face turn blue 3 times that day. How does society continue like nothing happened? I’m not the only one who has lost a child or lost someone close but how does everyone function? One day at time, I know, I know.

Adam and I are going to Florida for spring break this year and I’m also emotional because Greyson’s should be here. We should be taking him to Disney, to go see Nana and Papa, to see alligators and explore with him. I should be packing his suitcase and carry-on. I should be stressing out over what to bring and if I am overpacking for forgetting something for him. Instead, I’m word vomiting online, and trying to keep my emotions in check because it’s such a slippery slope. This blog is word vomiting for me today and very unorganized thoughts. Sometimes when I feel like this, I write and the tears are overwhelming. The burning in my chest rises up and I can't control it and I hate losing control. I hate when you cry so hard aren't sure if you will ever stop. How do you get all your emotions out when they feel endless?

I feel grateful that I am Greyson's Mom. He is my greatest accomplishment. But how can he be gone? How can I still be here and he not be? How could he only have 2 years on this earth? Why do we not have a cure for this yet? Why isn't there more being done? Why couldn't I protect him?

I hate today.

xoxo,

Kim