I want to get off this wave.

**Warning** Inappropriate language ahead. Proceed with caution**

The grief wave hit me today. It pulled me underwater and I'm struggling to surface. The tears keep coming down my face and my chest feels like it's exploding. My head is pounding and I can feel the tension in my jaw. I'm trying to catch my breath and fill my lungs with air, but there is no air. I can't find the surface.

I absolutely HATE how something so small can trigger the wave to swallow you. Something minute that shouldn't even be a trigger. Something mundane. But here we are. Something stupid triggered me tonight and now I'm crying uncontrollably in my son's room while he is falling asleep. Well, a few small triggers that just got out of control I guess. Before I laid him down tonight, I hugged him tightly and rocked with him for a little. Something we used to do all the time when he was an infant. I would feed him his bottle and snuggle him while his tummy settled and while he drifted off to sleep. I would give anything to shrink him back down and do this all over again. I would take those sleepless nights over and over if it meant more time with him.

I remember the first summer with Greyson. It was in the middle of 2020 and COVID was still relatively new. Adam and I went to Costco with Grey and they had one of the big swing sets on sale. I remember thinking we will need to keep on eye on something like that for our yard so Grey can have a set at home. There are parks near us, but we have a fenced yard so it would be nice to let him play at home too. I even changed the amount of my paycheck that went into savings so we could save for it a little faster. I was thinking it would be on a bigger sale at the end of the season and we could snag one for the next summer. But the next summer we had our diagnosis. We knew he wouldn't be able to use a swing set because his muscle would fail him. His body would fail him.

People who have known me most of my life would probably describe me as a generally happy person. I try to be polite and kind. I like to make sure people are ok and I try to take care of others before myself. Most days I feel like I'm still that person.. maybe not AS happy as I was, but I try to still make that effort. It doesn't come as easy as it used to, but I try. But then nights like tonight happen and to be frank, I'm fucking pissed. I'm so incredibly angry. Greyson is THE BEST thing I have ever done in my life.. and I am not perfect, I've made mistakes and can always strive to be better, but it just feels like what the hell did I do that this is happening to my family. My son. My baby. How has Tay-Sachs gone through my family tree.. just silently waiting. Then I met the love of my life.. with Tay-Sachs silently waiting in his family tree.. and it comes out in our perfect, blue-eyed, curly haired, sweet boy? Where the hell did it come from? How is it 2022 and there still is not a cure for this? He is missing an enzyme in his brain. Take my enzymes. Take whatever you need from me and give it to him. I wish it was that simple. I just can't believe there isn't more being done to help find these kids a cure.

I haven't had a night like this in awhile. Like I said, it was just stupid little things that happened tonight that just added up. Greyson's room was quiet and I was hugging my son when I felt the wave pulling me under. The tears started and they still are not under control. My breathing finally slowed as I typed this out but I'm not ok. I'm not. I'm scared. I'm so scared for what the future looks like. I want to be strong for Greyson and Adam but tonight I'm terrified. I don't want to lose my son. I don't want our future to not include him here physically with us. I see my friends with their healthy kids who are around the same age as Grey or younger.. seeing what he SHOULD be doing right now. It's not fair. My motherhood experience was robbed from me. Adam's fatherhood experience. Greyson's CHILDHOOD and eventually his life. How the fuck is this our lives? How can this be happening. He should be playing. I should be potty training him. He should want to walk everywhere. I see the memes people post on Instagram or Facebook.. about common annoyances with kids. How they make you watch everything they do. Mama watch this! Look what I can do! I would give anything to be annoyed with that right now. I want to be tired from taking him to the park, not tired from suctioning his gunk out, doing his dishes, getting meds, tube feeds, getting equipment ready, lack of sleep for fear of something happening to him. I want to learn new toys and see his imagination.. not learn new equipment. I'm not ok.

Grey woke up gunky today. We spent our early afternoon doing his shake vest treatment, nebulizer, cough assist, and suctioning. As soon as I finished all of that, his hospice nurse and our social worker pulled up for their visit. Another thing that honestly broke my heart today out of nowhere. I shouldn't need hospice for my 2.5 year old. I shouldn't have to need this. After they left I had to make phone calls for equipment, services, appointments, and updating other providers. I SHOULDN'T HAVE TO BE DOING THIS. I should be playing with my son and listening to him ramble. I should be teaching him things. We should be making messes and playing outside. Our first summer I wanted to get him a water table because of how much he loves water. He couldn't stand up yet so I figured I'd wait until the next summer when he was a little older and bigger, then we could get fun one for him to play in. Well the next summer was ruined by the diagnosis. We sent most of last summer grieving in our house trying to figure out what the hell we were going to do and what we needed to do to get our son whatever would make his life better.

I never want Greyson to feel like a burden, because he is anything but. I just wish I could fix this for him. Take this away so that he could have a chance. Have a childhood and a life beyond Tay-Sachs. I'm not ok tonight. I want to scoop him up and just make sure he knows how much I love him. I want him to know his Mama is here and isn't going anywhere. I thank my lucky stars he's mine but goddamnit his life isn't fair. I really hope he knows how much we love him. I hope he feels that and I hope he hears us when we say it.

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I wrote this blog last week. I held on to it because I didn't want to post it without reading it through again. It felt raw at the time. I was using talk-to-text on my phone while he was falling asleep in his room and everything came pouring out. Especially the last paragraph about not wanting Greyson to feel like a burden. I remember looking at his sweet face in his bed as the tears were falling, thinking I hope he knows how much he is loved. How his Dad and I would do anything to protect him and keep him safe. We would advocate, fight, and do whatever we need to do to make sure he has the best life we can and the most comfortable life we can give him. We want to give him the best adventures we can and make sure we spend time doing things he loves. That grief wave is a bitch. That night was one was one of the worst ones I've had in a long time. I couldn't get myself under control. I've been trying to focus on the today and the now but sometimes you need to just let it out.

But one thing I am thankful for is Adam and my wedding anniversary was yesterday. 4 years of marriage (but 12 years together!) and I am so thankful for this man by my side. Some days seem impossible.. but he makes them manageable.

We also got some new patches and an AMAZING pin (Made by one of Adam's friends in his nursing classes!) It's the heart pin posted below. The heart pin is for pride month- we all beat the same - and it's so perfect. Here is the link if you want to check them out! The creator is Dannah and she is so incredibly sweet. She is a wonderful human!

YAL Creations etsy page

I caught this sweet picture of Adam and Grey sleeping the other morning before I headed to work too :) And the painted rocks were done by my nieces and sister after our wedding and we found them in our garage. We put them in our "garden" by our front door!

The other exciting thing to look forward to is we are heading to the NTSAD Family conference in Denver next week. We get to meet so many other families who have helped us along the way thus far and get some hugs! We can't wait. It's a little stressful but we are hoping it will be smooth sailing once we get going. Our hospice team sets us up with another hospice in Denver so they provide us with all the equipment that we would need but can't travel with. We use the cough assist, nebulizer, shake vest, pulse ox, oxygen condenser, and all their parts, the food, food bags, diapers, wipes, etc. It's SO much, but thankfully we can get those items there. We are waiting for the all clear from them but it sounds like they do this often. We were going to have Adam and Grey on a private flight (that was difficult to apply for and then work with them) but it didn't work out. It would've been such a long day for them so we ended up scrapping that idea. I was able to book them on the same flight I was on and right next to me. Auntie Courtney is coming with us too!

We also decided to go with a hot tub for Greyson's Make A Wish. It was the best option FOR Greyson. He loves the water so much and it would be so good for him plus having it right outside would be so nice. We are looking at models and should be getting things going soon!

Grey was so tired after his tubby he was falling asleep during his shake vest treatment. Even with his cheeks jiggling :)

I'm feeling better today already. I booked myself a mani/pedi this afternoon and I'm looking forward to having a minute of pampering myself today. I haven't had one since I was pregnant! Here is to having better days coming up.

xoxo,

Kim