Am I supposed to be happy?

**STRONG LANGUAGE AHEAD, PROCEED WITH CAUTION**

Today was the day we got our final piece of equipment we had asked for. After MONTHS and MONTHS of asking. Our complex care team in Madison and our hospice team really helped us work with his pulmonologist and the DME (durable medical equipment) provider to get his cough assist. It's a small machine hooked up to a mask that fits over Grey's nose and mouth and pushes air in and sucks it out in a cycle to help Grey get the gunk out of his lungs so he can clear it or we can suction it out for him. Finally we have the last piece of equipment. But it's the last piece of equipment..

I feel like every time we get a new device or a new step to take is just another thing. Another thing in Grey's short day that he has to sit through. Another thing Adam and I need to learn and master. Another thing that my baby shouldn't have to need in the first fucking place. Why does my two year old need a pulse ox, a cough assist, a shake vest, ppod chair, special tomato chair, suction machines, a million tubes and syringes, feeding tube, a pole, a pump, more tubes, etc. I feel selfish for feeling like this all the damn time but how is this disease not talked about more? WHY wasn't it a discussion before I got pregnant that genetic testing is an option? We could've saved Greyson from this but it wasn't even discussed. I had no idea I would be a carrier for tay-sachs.. let alone both Adam and I would be. We are supposed to use the shake vest on Greyson 2x a day. Which each time is 20 minutes or so. So that's roughly an hour or so between setting it up, the cycle, and putting it all away. Then the cough assist goes with the shake vest, which is 3-4 rounds of 4-6 breaths, with suctioning between each round. You have to do the shake vest an hour or so after Grey eats, which he eats every 3-4 hours. And he is only really awake after 12pm. He naps throughout the day and we also need to do his stretches in there, sometimes bath, plus wash everything he needs, and don't forget his medications at 8am, 4pm, and midnight. His poor day feels like it's just getting jam packed with medical shit and it doesn't leave a whole lot of time for anything else.

I'm still in the angry part of my grief. Slightly in denial/bargaining/depression too, I suppose. I'm definitely no where near acceptance. One thing I have "accepted" is that I will never be the same person I was before the diagnosis. Both good and bad. I will definitely be more aware of handicapped/disabled children. I will be more aware of places that are accessible by wheelchair and which are not. I think about the Tundra Lodge when I went with my girlfriends back in August. Seeing their littles running and playing, while I'm trying to find something for Grey to do with me. It still breaks my heart. It was so loud in there for him and the pool was too cold for his body. He can't run and jump to keep warm. I remember having an argument with Adam before we went. I really wanted to take Greyson and Adam didn't want me to. He didn't think there would be anything for Grey to do and I was hurt by that. I'll find something! I want my kid to have the same experiences that my friends kids get to have! But of course, he was right. Once I got there, I was very aware that it was not accessible for children in any type of wheelchair like Greyson. Grey didn't have any muscle tone even then, so he couldn't hold his head up or even sit up with me in the shallow pool.

I think about that often. It honestly just kills me. I love the water. I love water parks and I was so excited about the idea of taking my baby to the water park to play. But tay-sachs robbed me of that and robbed Greyson of the typical toddler experience. I'm so fucking angry. I'm sad and I'm broken. I'm sitting in Greyson's room listening to his sweet sounds as he falls asleep and I'm just crying wishing I could take this away from him. Your job as his Mom is to protect him and keep him safe. But I can't protect him from this and it's just unbearable.

I hope one day I won't be so broken, but I don't know if that's possible. I lost part of my heart the day we got the diagnosis and I know I'll lose so much more when the time comes and Greyson passes away. I know I will never have that part back. I also know I am determined to have Greyson's legacy change the world and bring awareness to not only tay-sachs, NTSAD, but also genetic testing. It's a simple blood draw. That's IT. Why the hell wasn't it discussed when I went in for help to get pregnant? Or during the 33 weeks I was pregnant. All they talked about was trisomy 13&18 and down syndrome. I remember being so worried we were going to have a special needs child and that I would be prepared for it. Greyson showed me you can't prepare for it. You can't plan, you can't do anything other than be his Mother. Love him and take care of him the best you can. You fight for everything you need and you don't take no for an answer. You have to advocate for your child and find a support in your spouse, family, friends.. but I'm others who have walked in your shoes. I just wish my son was healthy. I just wish he was running around my house making a mess with all his toys and asking me to play. I wish I could hear him say "Mama watch this!" a million times a day. I wish he would tell me stories when I get home from work and reach for me when he needs a Mama hug. I wish he was asking for dino nuggets and Mac and cheese for dinner. I wish I had the chance to get to know his personality more before it was taken away from us.

It's so hard to not miss the things we never got to experience with Greyson. He never had the opportunity to be a kid. He's never been to the park. He's never been on a swing or down a slide. His room is full with medical equipment instead of blocks and cars. On top of the diagnosis, COVID started to blow up when he was 4months old and I returned to work. He was only in daycare for maybe a week total. He loved it and was always exhausted when he came home. His daycare staff loved him and it was so sweet to see the pictures they would upload. I have them saved on my phone still.

He was such a happy little man :)

Greyson loved this little girl he was playing with in the first picture!

This was out little chunky monkey on his first day at daycare!

I also feel selfish for feeling the "why us? Why Grey?" because it's truly "why any child?". The families in our support group- why them? There are too many children affected by tay-sachs and the other rare diseases. You never hear about them. They aren't brought to light like cancer is. Don't get me wrong, fuck cancer, especially in children, but I wish these rare diseases were talked about too.

That is all of our equipment- just everywhere. One of our bins is just his medical information. I feel like that could be it's own blog post. Just explaining everything and what it does and why we need it.

This is one of my favorite things in our house. They are wooden flowers my sister made and put together in this beautiful box. We made the handprint impression of Greyson this year and I have more dough to make more. I love having little pieces of him to remind me that everything we are doing, even though it's SO hard and a lot of the time is overwhelming, it's keeping him safe. It's allowing us to have more time together and to keep him comfortable.

Alright, enough of me whining for one night. I have to work tomorrow morning. Here is to a good day tomorrow :)

xoxo,

Kim