Awareness Month - Day 1 and 2

The grief wave has been so hard to ride the past few days. I feel so happy one minute that we still have Grey, that we are able to still snuggle and read our books. The next minute I feel so incredibly guilty that I have to get ready to leave him and go to work.. but then I feel guilt if I don't go to work because I don't want to leave anyone short handed. I feel guilty for feeling guilty. Then I feel broken all over again seeing my son in his ppod, unable to move or talk. Trying so hard to cough up the gunk from his lungs because he can't safely swallow his saliva anymore. His muscles have failed him and now something as simple as saliva.. he can aspirate and it can cause pneumonia. Saliva. I feel sad that I have to feed him through a tube in his stomach, but I feel so thankful that it is even an option. Without that gtube, we would not have our son with us. We haven't been able to safely feed him by mouth for awhile now. Another reason I feel sad, I don't remember the last time I gave him a bottle. I cannot remember when it was, and it's just another memory now. Greyson will never have a bottle again or have solid foods. I'll never be able to spoil him with going out to lunch or give him dino nuggets and mac and cheese. We won't ever order him a happy meal that he can eat. We won't have the argument to eat his vegetables with dinner.

The amount of emotions is just exhausting. I know that I don't need to feel guilty about certain things but that doesn't mean that I don't. You can't just turn it off. It's not that simple.

He's doing better- his pneumonia round 2 seems to be clearing up. His secretions are more clear than they have been and he seems like he's getting back to himself. The amount of secretions we're bad this weekend and the past few days. It felt like a constant round of suctioning last Saturday. I'm so worried about when will the next round of pneumonia be? He did well this time and we stayed out of the hospital. We caught it quickly and our pediatrician wrote a script for his antibiotic without any hesitation. She listened to us and our concerns over a phone call and agreed it would be best to start him on it quickly. I feel so lucky to have her in our corner. She's local here and has been his pediatrician for his entire life. She's always listened to us and has never brushed us off. She even brought us into Madison when he was losing weight and we couldn't figure out why. His team in Madison and his hospice team are all so amazing. That's one silver lining in this hellish ordeal is we have met some of the most amazing people. His team love him and you can tell with the care they provide. But that doesn't erase the fact that my son is on hospice and has a plethora of specialist and medical equipment.

Adam went to Michigan this past weekend for his Fantasy football draft with his buddies. They have been doing this league for 20 years. Auntie Courtney came up to help me out because I had to work Saturday morning. She watched Grey so Adam could leave earlier than when I got off work. We had a nice Saturday together and Adam got home this afternoon. He had fun with his friends, which was much needed for him. Just a nice break.

I've been struggling with my anxiety the past few weeks. I'm really worried about Grey and his secretions. It's so hard to stay on top of them. It hits me hard at night (of course, I always seem to get emotional at night!) and the past few nights have been tearful. I need to try and just stay present but it makes me so scared thinking of our future. My poor buddy has just been struggling to rest and recover since Denver. That was almost 2 months ago. He's had pneumonia twice since our trip. He's been on oxygen pretty much around the clock since we got back. He has been gunkier than normal. I'm so so so thankful we went but I just think it was too much for him. I don't know if it was the elevation change or the stress of traveling, but I don't think we will be making major trips like that again. Or at least not for a while.

Greyson's Make A Wish is still a work in progress but it's coming together. The concrete company has started laying the foundation work and are waiting for the electrician who is coming next week. Once the foundation is done, then they will install the tub for us. We are trying to find a gazebo that has a metal roof and will be able to withstand Wisconsin winters and summers but they're pretty expensive. We are so thankful for the local volunteers that we met too. They keep sending him little gifts- and the most recent is this light projector, sound machine elephant. It's so cute ❤️ Elephants are my favorite animal and the lights are his favorite! It plays lullabies, outdoor sounds, heartbeat, and white noise. Greyson also received these handprint molds from a woman we have never met before but she found our story and his Amazon wishlist. It was so incredibly thoughtful.

I had to work this week and had a pretty good week, except for yesterday. For some reason I had a panic attack yesterday. It's been so long since I've had one. Something small triggered it and it sprung out of nowhere. I could feel my chest getting tight, my eyes started to fill with tears, and my limbs felt like they were going numb. I let my coworkers know I'd be right back and quickly excused myself to the upstairs bathroom. We have a sitting room in the bathroom upstairs that has a door you can close and semi comfy chairs. I sat down, put my head in my hands, and let it out. I had to focus on my breathing, letting clean air in and exhaling the negative. I cried pretty hard sitting there. The trigger was small but it hit me really hard.

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September is the beginning of Tay-Sachs & NICU Awareness month. Two things I never thought I'd would have been concerned about. Greyson was born at 33 weeks and spent his first 12 days of life if the NICU. For me, it was extremely difficult to leave him I. The hospital and have to go home without my new baby. I knew he was being taken care of but it's still difficult. I was emotional after giving birth with all the hormones anyway.. so having that, plus him being in the NICU.. pfft, forget about it. I cried all the damn time. Then of course, March 2021 our baby was diagnosed with Tay-Sachs. This month, I'm hoping to share on our social media platforms and here some information we have learned since the diagnosis, more about advocacy, genetic testing, and everything in between.

Yesterday I shared NTSAD post about expanded genetic testing. They are focused on being #rareaware and every single person is a carrier for something. We all have things hidden in our genome. The Jscreen test (jscreen.org) is more comprehensive than a 23&me or those ones similar. The 23&me do not test for all of the variants and variations. It's as simple as spitting in a tube!

Today I shared about the 3 forms of Tay-Sachs. Infantile, juvenile, and late-onset. I had no idea there were different forms before our diagnosis. I'm still not sure how the gene determines what form a person has, but something I am interested in researching more.

Here is the TikTok I made today for Day 2 of Tay-Sachs Awareness Month!

I plan on continuing to post to my Facebook, Greyson's Instagram, and our TikTok page! I have links to those on the main page on the blog. I will work on uploading more videos and photos of Grey to the other pages (under look at this cute kid!). I also created a page special for the programs we have found that have been amazing for our family. As always, if there is a topic or question you have that you'd like us to cover- please ask!! We have the contact us page or the email is greysons.brave.story@gmail.com -- I am hoping to take some videos of our daily routine and how his shake vest treatments, meds, and feedings go. If there is anything else you'd like to see or learn more about, please just reach out!

Xoxo,

Kim