When dreams disappear...

This was Greyson in his car seat when we were getting ready to leave the NICU. This tiny little peanut in his big car seat. I had so many dreams for him. I couldn't wait to see what his laugh would sound like or his first word. I couldn't wait to see what sports he liked or didn't like, would he play football like his Dad? Be a swimmer like his Mom? Would he like school or would he be adventurous? What would he want to be when he grew up? I didn't care too much about the last one- as long as he was happy in his choices.

Now, it's like those dreams just disappeared with one sentence. "Your son has tay-sachs". I honestly didn't know much about tay-sachs. I still really don't. There is so much to absorb. When we first got the diagnosis- we did A LOT of google searching. Trying to see what our little man's future would look like. It's terrifying. Seizures, blindness, deafness, paralysis. He already has the low muscle tone. He never crawled or took a first step. He did say Mama (thankfully that's on a video) and we both swear he said "Dada" to Adam. Adam was in Minnesota with his sister and video called us. As soon as I answered and his face came up, Greyson said "Dada!" When we were told Greyson has low muscle tone, I remember being hopeful - it's ok! We just have to keep him in PT and everything will be ok! He will just have to work harder but he'll be fine. Then his neck control started to go.. and I though maybe he's just weaker from not eating as much as he used to. I was hopeful after we got back from AmFam Children's in Madison when they put us on a pedisure diet.. he was so much more full of life! But that dream disappeared too with that one sentence. He's ok now, but everything that is coming is terrifying. I honestly can't describe how afraid I am. I'm trying my best to "stay in the moment" with him but my goodness it's hard. Your mind just kind of drifts and it's hard to keep it where we are right now, today. Not later on.

Adam quit his job in late 2020 to become a full-time Daddy to Greyson. Our daycare closed with the start of the pandemic and we had family come stay and help us until they couldn't anymore. I have the insurance through my work so we decided to have me stay and Adam stay home. Adam is also attending NWTC right now for nursing so it just made sense. Now, with everything going on, I'm trying to work with my company to let me work part time so that I can spend more time home with Grey, while I still can. I feel so guilty about it sometimes. It will make things really tight around our house - we have family that is willing to help of course - but I just feel guilty. I also want to be home more part time to help Adam. Greyson needs care and your FULL attention when he's awake. He naps well and typically sleeps through the night, but when he's awake, you're solely focused on him. It's a lot on Adam's plate too. I think that's another blog for another day.. but it's just crazy to me how the world keeps going even when you feel like your world just stopped. Our world just came crumbling down around us, but yet we still have work, house responsibilities, and we still need to take care of ourselves too. It's a lot on both our plates.

xoxo,

Kim