Time is a fickle bitch.

**Strong language and sensitive topics towards the end of the post**

Thursday December 9th--> I'm currently sitting in Greyson's room in his glider while he is sleeping and getting a tube feed and I just feel afraid.

We had a busy week again this week. Greyson has been "gunky" at night and we were worried it was from snot dripping into his throat. We have a pillow for him on his bed but it's hard to find the right angle where he's up enough, but not too high where he could slide off the ends. He is unable to move himself if he starts slipping.. and he can't tell us when he's uncomfortable. The only way we know is when he starts to whimper, which is just the worst sound coming from your sweet son. Grey doesn't cry anymore. He doesn't yell or get mad, he doesn't really have any of those "hunger cues" like he used to. Adam and I feel his tummy and if it feels too squishy and it's been 3-4 hours, he's probably hungry.

We met with Greyson's pulmonologist on Tuesday to discuss the equipment and things we need, things to look for, and things to prepare for. We are in the process of getting Greyson a shake vest, cough assist, and nebulizer. Part of tay-sachs is muscle weakness.. and that includes muscles he needs to cough and even poop. Eventually his body fails him and he can't do these things without help. We want everything in place before they become a need. We've been using the suction machine nightly to help clear saliva from his mouth so that he does not choke or aspirate. We also have been using the pulse ox every single night which measures his blood oxygen level and heart rate. Some nights are wonderful numbers. Sometimes they aren't the best. There is an alarm on the machine which will alert us if either number is too high or too low from the boundaries we set. His pulmonologist also recommend the flu vaccine for him to try and keep him safe from any issues related to the flu this season. RSV and the flu are really high this year so we are doing everything we can to keep him safe.

Greyson also has been loving his lights at night so we added it to our bedtime routine. It's so sweet to watch his little eyes move along with the light. I typically sit in the glider for 20-30minutes while he falls asleep to make sure to be up here if he needs anything, but also to enjoy the lights with him.

We met with his pediatrician on Wednesday. He's had a chronic ear infection and we were worried it was back. Thankfully she said it looked great! She cleaned out some wax and said the canal may be a little swollen just from previous infections but it looks great inside. He also had some blood come out of his gtube site last week so we asked her to check that out. It could be granulation tissue but she wasn't entirely sure. She ended up doing silver nitrate to help cauterized the wound and hopefully stop the oozing from it.

Then today we had a video appointment with our 2nd neurologist down in Madison. We talked about his current medications and what other options we may have. It was informative and nice to be able to do it over video instead of driving all the way down there.

We have been working on our stretches to keep Greyson's muscles loose and keep them from stiffening. Our new favorite spot to do them is right next to the Christmas tree! He gets to look at his new ornament Mama found for him and the lights. This time of year is just magical and I love seeing him light up!

Friday December 10th --> I finally gave in to sleep last night around 2am and didn't have a chance to actually post the blog.

Well today we ended up taking Greyson to the ER. He had been having rapid shallow breathing since yesterday afternoon and he had a slight fever this morning. One thing I struggle with is having to explain tay-sachs to medical providers over and over. I completely understand there is no way someone could truly memorize every disorder and condition, but it doesn't make it any easier. The physican today kept talking about how we need to get Grey to cough.. I wanted to be like no shit.. he doesn't have the muscle tone to just cough anymore sir. He can't just work things out. Of course, I know he didn't mean it like that or anything, but it's just like if you'd stop and listen to what we are saying then you might hear us. We constantly have to fight and advocate for him, which of course we will always do, but my goodness.

Grey is currently trying to sleep and I'm sitting in his room again making sure he can breathe ok. We've been suctioning his nose and mouth for 2 hours now on and off. We did a nebulizer treatment and he got his first round of antibiotics so hopefully that will jump start his recovery.

On top of everything going on with Grey, my beautiful Grandma Toman passed away this week. I feel like I haven't had a chance to grieve with everything else going on. My Grandma was living in a nursing home and I know she was tired of fighting. When Adam and I got engaged she told us how happy she was for us but wasn't sure she'd be alive for the wedding. That was 3 years ago. I'm glad she's at peace but she was my last Grandparent and it's been so long since I've been able to see her. Her daughter- my Aunt - is also in the hospital fighting cancer again. She was flown from the UP to the University of Michigan hospital. Then today my Uncle - my Grandma's son- was rushed to the hospital when the car he was working on fell off the jack and landed on his leg. My brain is on overload.

I think the scariest part of Grey being sick is how quickly it came on. He seemed pretty good earlier this week.. gunky but he was breathing ok. Then yesterday it was like BAM. Not ok. I'm worried because we take so many precautions to keep him safe and I just don't want this illness to make him regress anymore than he already has. Tay-sachs is so incredibly unfair.

**Strong language and sensitive topics ahead... feeling a little angry**

I am so angry. How can this be happening to our son. How is his little life damned already. He hasn't had the chance to live. How the fuck has tay-sachs stayed hidden in our family lines this long and presented itself in Grey. How is our first and only child affected? He had a 25% chance to be affected (if we would've known, I would've never gambled that risk) and how did that 25% happen on our first child. I'm so angry. I'm so hurt and broken. This is my baby. I carried him for 32 weeks, felt his little kicks and hiccups, gave birth, took care of him and watched him grow.. only to have his life to be cut short. How the fuck is this happening. How do you plan a funeral for your child? How do you plan a life where they will no longer physically be with you? I'm sitting here in his room, in the house we bought for him, listening to him struggle to breathe. We bought this house to keep him safe, to watch him grow, and make memories in. Some memories are wonderful but now some are tainted. Yes we have memories but the days are limited and everyday we seem to lose a little more of our son. I'm not ok. I will always remember being in this very same glider the first time he said Mama. Or snuggling in our bed after he would wake up early. I will remember his 1st birthday party in our living room. But then I will remember the night we got the diagnosis.. sitting in the recliner in the living room watching Friends, reading quickly through the medical jargon to find out what was wrong with our son. Seeing "tay-sachs" and googling it. Reading as quickly as possible to find out the prognosis. Instant tears as I ran down to the basement where Adam was studying to tell him our son was dying. How. Is. This. Fair. My son is two years old- with a life expectancy of 4 years old. Half of his life is potentially over. How is that ok? He's currently struggling to breathe in his sleep. He's exhausted but he's gagging on spit and snot.

I'm just drained. I'm angry. I'm hurt. I'm so incredibly sad. I will always keep fighting for Grey, but sometimes I wish we didn't HAVE to fight for every thing.

Saturday December 11th --> just a three day blog :)

Last night was a little rough. We nebulized Grey an suctioned his nose and mouth and it was a never ending production of saliva and snot. We suctioned from 830pm until 1230am. We took turns sitting up in his room so that we could eat dinner, pick up the kitchen, and get the other meds ready. Poor buddy sounded so uncomfortable. He was trying to cough and clear his lungs but it just wasn't happening. The suction seemed to help but it was just a never-ending process. He finally fell asleep around 1:00 a.m. and Adam and I did not get much sleep. Adam woke up a few times to check on him throughout the night. I woke up around 6:00 a.m. to hear him wheezing while he was breathing and decided I had enough. I changed his diaper and picked him up and laid him belly to my chest and we slept in his glider and until his morning meds at 8:00 a.m. He slept so well on me! His breathing calmed and no coughing or sputtering. I slept better too knowing that if he needed me I was right there. After his morning feed was done Adam grabbed him and started snuggling on the chair while I deep cleaned the upstairs. We are moving our linen closet to our guest bedroom closet to make the linen closet Greyson's medical closet. We want everything nearby but it was taking up too much room in Greyson's room. His room isn't that big and we were running out of space. It snowed last night so Adam is heading outside now to clear driveway and head to my parents to plow theirs too. My sister and my niece arrive this week and I can't wait to have them here. Grey and I just finished a nebulizing treatment and he's having some lunch.

I'll make sure to keep you posted on how Grey is doing. His breathing is still rapid and kind of shallow but it feels like it's not as labored. I think there'll be a lot of snuggles in the next few days for us.

Xoxo,

Kim