I wonder who you'd be today...

I've been struggling with what to write lately. I'm trying to focus on living in the moment and focusing on what we have going on today but sometimes your mind wonders. My in-laws came for a visit last night and while we were sitting in the living room just talking, my mind wondered. I feel guilty for letting it happen but it did. I was thinking of who Greyson should have been and how his life should have gone. When you get pregnant or start talking about having kids, you think of their future. What will they do for their career? Will they get married? Will they have their own kiddos one day? Will he be into sports? My mind wondered and I got angry that Greyson won't live long enough to grow up. It's a feeling I know I've shared before but last night it made me think how Adam and my life will change too. I know I won't be the same person I was before the diagnosis. I know that this has changed my life trajectory. I'm not sure exactly how but I really want to help people in similar situations and be a support to them, the way the NTSAD organization and the families have been to us.

One of the NTSAD Mother's reached out to me and we had a great phone call on Friday. I needed help with navigating resources and making sure we are working towards getting everything that we will need for the future. The conversation ended with her thanking me for asking for help. We both shared how hard it is to ask for help.. and we didn't know why. This situation is something you are NEVER prepared for. You don't have a "safety net" for when you're child gets a terminal diagnosis.. just in case. You don't have a bunch of food in the freezer for those days when you just physically can't do it. It's not something you arrange for. It took me awhile to be ok asking for help. We need help. We need the "village" everyone talks about when you have children. We have an amazing support system with our families, friends, and our communities - both in Michigan and Wisconsin. NTSAD and the families who are in the support group for NTSAD have been invaluable for us. I honestly don't know what we do without them and their advice.

This past week was a busy week for us. I worked 3 days and Greyson had two physical therapy appointments this week along with two doctors appointments. His first physical therapy was pool therapy which is his absolute favorite. He is definitely a fishy like his Mama! I think it must be so nice for him to just float weightless in warm water. Take some of the strain off his muscles and joints. He also had a physical therapy appointment which we met with the adaptive equipment company and FINALLY ordered the things we need for him. We are getting an adaptive stroller that is more supportive for him. Part of tay-sachs is low muscle tone. He can no longer really support his head and he can't sit up at all anymore. He can't support himself. Our current regular stroller allows for too much movement and he can't control his core or anything. We have to get creative and tuck kitchen towels around him and we use a travel neck pillow to keep his head supported. We also need a bath chair. We currently use an inflatable tub but poor buddy is too tall for it. His legs hang out and his head is either supported by the side or my arm. Which means I only have one arm to get the soap and wash him. We also need sitting devices for him. During the day he is either being held by someone or on the floor. He can't sit at all on his own.. and it's hard to "play" or interact with him because you are holding him and supporting him so he's usually faced away from you. The part that is so frustrating is this has been a work in progress since April. Now the request goes to our insurance company to cover it. If they don't cover it, it goes to our secondary insurance. If they don't cover it, it goes to the Support Waiver we have. It can take 6-8 weeks. It's SO frustrating. We have LIMITED TIME with our son.. give us the equipment we NEED. This isn't a want, this is a need. But there are so many hoops to jump through to get what you need.

On top of his PT appointments, we met with Greyson's pulmonologist and GI/Nutritionist this week. One huge light this week- Greyson's appointments went so well. His lungs are clear and the pulmonologist said they sound great. He's gaining weight and is really doing well with his growth. He's tall and filling back out. Hearing that his lungs are clear was such a huge relief for Adam and I. Pneumonia is a huge issue with tay-sachs kids. It is honestly what kills them or complications from infections. We still have not heard back about Greyson's gtube surgery but they are working on it. We are hoping to hear next week so we can plan for that because we will need to travel to Madison to have that done.

My in-laws came last night and had to leave this afternoon. While they were here they had some good snuggles with little man and Grandma Jill gave Grey his second haircut! His hair was cut 2months ago and got so long. The back of his hair gets so curly, it's so sweet. The sides haven't really grown in much yet so he had a little bit of a mullet going on so Grandma helped take care of that!

My oldest sister is also coming to visit this week with my youngest niece. I haven't seen my sister since January 2020 and my niece since summer of 2019. I get to see the rest of their family in a few weeks too! Our weekends are packed with visitors coming to spend time with us and Greyson and we couldn't be more thankful. People keep asking us if we are overwhelmed by having visitors.. but we aren't yet. It hasn't been a typical visit. We haven't been rushing to clean our house top to bottom or worrying about "entertaining". People are coming to see us and our son.. and they understand if my house isn't spotless. It's nice to have alone time sure, but it's also nice to be surrounded by support. My husband keeps telling everyone "we want you to be here while Grey is good and we are going to need you here when things get worse" and I couldn't agree more. We want people here to make memories with our son and we are going to need them here when we need to lean on them. I'm also incredibly thankful that I'm part time now. I'm able to be home more and have more time to focus on caring for Greyson and taking care of things around the house. I'm also able to help with appointments or phone calls and taking some of that responsibly off Adam's shoulders. It's been a really good change.

xoxo,

Kim