Third time's a charm

kim.rudness
Aug 28, 2021
8 min read

I tried starting this post 2 times already. The first time I wrote so much it was midnight before I finished. The 2nd time I was uploading pictures and my screen when white and closed down and I lost everything. But now I'm plugged in, on a wifi network that seems to be good, and I'm hoping this third time is the charm!

The past few weeks have been busy with work, guests, and appointments. Two weekends ago, Adam's sister Courtney came to visit us. I had to work every day she was here, but it's always nice to have her here. The next weekend Adam's Aunt Val came to visit. She came down and spent the weekend with us. I had to work again but Adam was able to take her to a Packer preseason game at Lambeau. It's been awhile since we saw her and it was so nice to see her. This past week my girlfriends from middle school and their families came to visit us.

My girlfriends came in Monday night and after work we all met up at their AirBnB for dinner. These girls have been by my side for the majority of my life. Steffani and I have been friends since preschool and we met the rest of our crew in middle school. Jackie was in our homeroom class in 6th grade and Laura moved to Marquette the same year. We did miss Ashley and Shannon though this weekend- they weren't able to make it. Shannon's little ones weren't feeling well and needed their Mama and Ashley just got a new job and had to be there. Their airbnb was right down the road from our house and it was so nice to have these girls 5 minutes from me. Tuesday morning we woke up and headed over to Lambeau field for a Packer stadium tour. There is definitely something magical about Lambeau field. This was Greyson's first time (outside of my tummy anyway) being at Lambeau. We met Steff, her husband Luke, and their 3 boys, Cam, Declan, and Jameson along with Laura and her son Callen. The tour was so fun and Callen was running the show. He was so cute and ready to explore everything. I think Grey slept for a good portion, but that's ok. The only bummer is we couldn't go out of the players tunnel onto the field because a big storm was rolling in. I figured it's just a sign that they will all have to come back and we can do it again. After the tour I had to head over to work for a few hours and after we headed off to the Tundra Lodge. The Tundra Lodge is a waterpark hotel here in Green Bay and they allow day passes for people to come use the waterpark. We headed over there and met up with Laura, Callen, Steff, Luke, the boys, Jackie and her daughter Charlotte. It was so sweet to see the kids playing and enjoying the pool. Jameson kept tickling me and Declan kept giving me high fives. Adam and Grey came to join and that's when that grief wave hit me the hardest. It was so fun to be there with my girls and their kids, but in the same breath it made me very aware of Greyson's regressions. The waterpark is not accessible at all.. there really isn't anything for kids with special needs like Grey. They have a shallow pool for young kids, but Greyson can't sit up. He can't hold his head up on his own. I took him to the deeper pool which is 4ft, but that's where all the older kids were and they were loud and splashing. They were having fun. But it was too much for Grey. It was too loud and the water was cold for him. They have a lazy river but even that would be hard to do. How would I get in a tube with him.. and I can't just hold him in a tube while I walk along side of him. He's too heavy and has zero muscle control. I felt that knot in my stomach watching the kids play as I held on to Grey. I felt the tears welling up and I figured it would be best to just get out and dry off. It's so hard when that grief wave hits you in public.. especially when you WANT to be having the best time. It's one of those "happy for you, but sad for me" type moments. I'm so glad we went and I'm so incredibly glad my girls were here with their families but man, it made me really sad seeing the things Greyson should be doing at his age. Jameson and Callen are both younger than Grey but close in age. They are both talking, walking, playing, and learning. Grey's learning has stalled. His muscles betrayed him. He can't lift his arms and reach for me like Callen does for Laura. Grey can't eat pizza with us like Jameson did at the table. Grey has bottles for every meal. I got out of the pool and we got back to our table and I silently just let the tears out. I didn't want to make any sort of big deal but it was a gut punch. That night we had pizza back at the airbnb and after the boys all went to bed, we stayed a little later with Steff and Laura and just talked. That's the one thing with this group of girls, no matter how much time has passed, we always pick up right where we left off. Wednesday was the day they had to leave to head home, but before they did, they headed to the zoo. I had to work, but Adam took Grey and met up with the girls. I stole some of Jackie's pictures from their zoo trip!

It was so nice to have my girls here. It was refreshing and nice to just spend time with them. Last week I had hard week. It started when I went grocery shopping and decided to go look at the clothes section for Grey. I was shopping alone so I figured why not, let's go check out the deals and see what they have for him. I saw a cute dino sweatshirt on the end and had to go check it out. They only had one left and it was Grey's size, so of course, it came home with me. While I was looking I saw a really cute Monster sweatshirt that would be perfect for Halloween season. They had a lot so I dug through the sizes and grabbed Grey's. I pulled out the 2T and out fell a 5T. No biggie right? Wrong. I lost it. My mind started racing to "will I ever be able to buy clothes for Grey this big?" Will we have Grey when he's 5 years old, or will we have lost him already? How much longer can I buy him clothes? He's going to keep getting bigger and heavier, what are we going to do if I can't lift him anymore? I just lost it. I started bawling right there in the kids clothing section. I felt like just sitting on the floor and letting it out but then the anxiety of "people will see me" started making me panic. I leaned over my cart and just headed to the middle aisle hoping no one else was there. I just let the tears come and once they were slow enough I paid for the groceries and went to the car. I sat down, turned my car on, and then it hit me again. This time because one of my favorite songs I sing to Grey and I sang to him while he was in my tummy came on my radio. Luke Combs "I Got Away With You". I sat in the parking lot and just cried. This journey has been so hard. It's so hard to process everything and I don't know if I ever fully will. It's just exhausting.

Grey had two appointments this week. The first was with the pulmonologist. I had to work so Adam took Grey and we assumed it would be a half hour, maybe an hour long appointment. They were gone for 4 hours! Adam said he was so good with Greyson and took his time to check everything, ordered us labs, and is going to get us a suction machine. We don't need it yet but we will later on. It will help us to suction out Grey's saliva so that he doesn't aspirate on it as things progress. Our other pulmonologist wanted to wait to order it but this one said no, I'd rather you have it when you need it, rather than scrambling to get it. THANK YOU. FINALLY. Ugh, someone with logic. We know we will need it and we know it's coming. What's the difference if we get it now and don't use it right away? We also heard this week we were finally approved for the ppod chair. It's an adaptive seat for in the house for Greyson. It's about damn time. This poor kid is either being held, laying on the floor, or sitting in his beanbag. The beanbag is new (from his Auntie Courtney!) and is a life saver, but we wanted the ppod to have him upright and higher up so he can sit and look at us and interact with us. But as this experience has taught us, we take one step forward and then 3 steps back. I took Greyson to his pool PT appointment and our therapist said they are struggling with insurance to cover the pool therapy. Insurance wants it to be "skill building" not "therapeutic". I know it's not our PT but my God.. the pool therapy helps him so much. It helps keep him loose and allows his muscles to take a break. He always is better after the pool. Now you want to take that away from him? It's literally in the NAME.. it's physical THERAPY. I'm so frustrated. I don't care what insurance says or wants.. he's our child and we want what is best for him. It should be our decision.. not some company who hasn't even met Grey. It shouldn't be up to anyone other than Adam and I. Period. Mama bear is going to fight this one, that's for sure. I just wish everything wasn't a fight. Everything for him has been a fight. We've had to argue, request, call, then call again to get things taken care of. It's been so frustrating.

One thing that is taking our mind of the frustration is we are finally re-doing Greyson's room. His nursery was woodland/buffalo plaid theme. When we moved into our house we decided we wanted to wait to paint until we settled in a little. Grey's room is so cute for a nursery but now is the time to get an upgrade. We decided to do a dino theme! Shocking :) but I'm so excited. My Dad took me to Menards and we picked up the paint this week. I went and got some cute decorations today after work and I'm going to get to work tomorrow! I'm off Monday and Tuesday for my birthday this week and I can't wait to get his room done. I'm getting my hair done for my birthday and having dinner with my parents. My Dad also built Greyson a new bed that fits a twin mattress and is counter height so that we don't have to hurt our backs laying him down or picking him up. He's also is building him a changing table that will be on wheels so that we can use it in the bathroom and in his bedroom. Everything is going to look so nice when it's all finished! Here's my Dad with the bed :)