Merry Christmas to all, and to all a good night

It's the most wonderful time of the year. My favorite time of year!

My parents flew back from Florida to spend Christmas in Wisconsin with us. My oldest niece who lives in Finland also flew here, so we have my entire immediate family here. My middle sister and her husband came and stayed with us. My other sister and her whole family were here (her husband, and my two nieces), plus Adam's sister! Unfortunately, my middle sister caught COVID and we all decided to celebrate Christmas another time to keep everyone healthy. My sister felt so sick, so she slept most of Christmas. Her husband, Adam, and I spent the day watching Christmas movies and doing our National Lampoon's Christmas Vacation puzzle.

Before my parents got home, my oldest niece and I snuck into my parents condo and decorated for them.

One of our Christmas tradition is walking around the Green Bay Botanical Garden Christmas light show too. We took Greyson there one year and have been back every year since. We bring a photo of Greyson for Santa to hold too.

They do such a beautiful job. It's a nice easy walk. One of my favorite traditions we made since moving to Wisconsin.

This was from 2021 when Greyson met Santa Claus for the first time. It's the same Santa every year so far and he's truly magical.

This season has been hard for me, but it's been more than just missing Greyson. We've had a lot of loss in our NTSAD family this year. Recently we've lost 3 beautiful children, and one young woman is currently in the hospital fighting aspiration pneumonia and sepsis. It's so much in our NTSAD community and it's felt really overwhelming. It puts me back to the day we lost Greyson and remembering how numb and empty I felt right after losing him. I was exhausted but couldn't sleep. My doctor wrote me a prescription for sleep medication but I felt hungover the next day - all day - and couldn't wake up. But then night came around and I couldn't sleep. It was horrible. I tried everything from melatonin, lavender, reading, tea, steam showers, essential oils, magnesium, nothing really worked. Until one day, I felt like I started getting back into a normal sleep cycle. That sleep cycle has been disputed a few times and I'm still not on a normal schedule, but it's not as bad as it was. That pure exhaustion I felt isn't like it was. I don't feel as numb or empty.. but there are times some days I do. The waves of grief. Losing so many this year in our NTSAD family has brought the waves back to the surface.

On top of that, this semester was a long semester for me. It's hard when you don't get a real break between semesters. I think I only had a week and a half off for summer before the fall started. I had to jump right back into things and by the end of this semester, I was OVER it. Plus, I caught COVID for the first time. perfect timing! Finals week and I tested positive for the first time EVER. Honestly, I cannot believe I made it 4 years without catching it, but we were also so careful because of Greyson. I'm so glad he never had it because I felt terrible.

I'm so thankful we have Millie too. She always knows when I need her. She has been my shadow lately. She's either snuggling with me or near me. Sometimes I have to ask her to back it up and give me a little space because I'm worried I'll step on her! I'm currently in my office and she's laying on the guest bed snoring right behind me. It makes me feel less alone having her and I'm so happy she's our girl!

On Monday 12/23 - Adam was able to score us Packer tickets from one of his wonderful coworkers! She has amazing seats and we had a blast. Courtney, Adam, and I bundled up in our snow pants, layers, jackets, boots, hats, mittens, and scarves and headed to Lambeau Field to see the Packers Vs. Saints (they kicked their ass!) and we ended up having to remove some layers it wasn't as cold as it usually is in December in Green Bay. We saw Jason Kecle in his Santa suit - tried to scream to him but he didn't hear us.

It was a fun night. Christmas Eve was spent with my family (minus Courtney because she was sick) and we did a charcuterie board lunch -Thanks to my sister Denise and her family! - and spend time with my parents at their house. Once everyone went home, I sat by our tree, just wishing Greyson was there to see it. I put extra lights on it this year and it's really beautiful. He would have loved it.

Grief sucks. On one hand, I'm thankful it's there, because that means Greyson was here. Greyson matters, his life matters and my grief hurts so deeply, because I love him so deeply. I just feel really angry that he's not here. That he wasn't healthy his whole life. He was only earthside 2 years and 10months. There is never enough time, but that truly is not enough. I want to know what his personality would have been like. I want to see him walk, I want to hear him be sassy, I want to write letters to Santa together, I want to see him play with Millie.. but that will never happen and I'm angry. I'm so angry. Not at him or anyone, just at the situation. I want a re-do with him. I want Greyson. I want my son here, with me, safe in our home, sleeping in his bed, and waking him with him to play on my day off tomorrow. I want the life I envisioned. I wat my son.

I know life isn't fair, but this journey just seems exceptionally unfair. Grossly unfair. I would give anything to have Greyson back in this world, healthy and happy. I would give anything. I feel robbed - of my motherhood experience. I feel robbed of getting to witness Greyson's firsts.. and robbed to watching my son grow up. It's unfair. Heartlessly unfair. The grief comes and goes in waves, but missing Grey is an every moment of everyday. It's a constant and I don't know if that will ever change. The holidays just add fuel to that fire and make it more and more apparent that he's not here, physically.

Another loss Mom posted "I'm not okay. I'm not fine. But I'll probably say I'm good when a stranger asks." and that sums up exactly how I've been feeling this past month. If I'm being honest.. I'm sad. I miss my baby boy. I know I'll be ok, but right now, I feel on survival mode. I just am doing what I need to do. I'm not as emotional as I once was and I don't feel as empty, but I am very aware of the piece of me that is missing and no matter what I do, it will never be replaced. Greyson took that piece when he died. It was his piece to take and he will always have that piece. It's just, the holidays amplify my missing piece and it's really hard to ignore it.

I know losing so many of our Tay-Sachs and NTSAD family members this year has really opened up my grief again. It's hard but I am thankful to be there for them when they need too. One little boy, Felix, passed away this past Saturday. His Mom, Kate, and I talk often (not enough though) and Felix was so happy and sweet. She gave me permission to share his photos, but I also wanted to share her GoFundMe. They are raising money for his celebration of life at the end of next month. While we know the diagnosis is terminal, Felix passed unexpectedly. He did not give the "typical" warning signs of their bodies shutting down. Greyson did the same to us. While we know the end is coming at some point, it is still unexpected.

Below is their GoFundMe - https://gofund.me/00606c97

If you don't like using GoFundMe's platform but still want to help the Gomez Family, you can absolutely venmo me @kimrudness and I will get the funds directly to Kate.

While talking with Kate and Deepika (another Mom, who recently lost her beautiful son Niam) I think one aspect of Greyson's Foundation I'd like to focus on, is providing care packages to families facing the impossible. Families who are admitted into the hospital (with comfort items and things to make their stay a little easier) and also gift baskets for families facing the loss of their child. Provide items that can spark joy, surround them with comfort, and just provide some ease for the family. I really need to make time to figure everything out - but I'm feeling like this is the direction Greyson would want me to go. If you have any ideas of ways to raise money for a foundation - please let me know!

I'm really hoping 2025 is a kind year. I'm hoping for a peaceful year with more good days and excitement. Thank you for reading along this far with me and I hope you and your family have a wonderful New Year.

xoxo,

Kim