Friends, Madison, Funeral Homes, Birthday, & Baptisms- oh my!

** Some adult language and topics ahead-- there is a warning before the paragraph **

We've had a lot going on the past few weeks. Since my last post we had a fun weekend with Adam's boys and their families. Shaun, Craig, and Adam have been friends forever. Craig lives in Green Bay with his wife Lauren and their son Desmond. Shaun lives near Philadelphia with his wife Sara and their two daughters Abigail and Charlotte. Shaun, Sara, and the girls came to the midwest to visit family and made a trip down to Green Bay to meet Greyson and spend time with us. It's always nice to see the boys get together- no matter how much time has passed, they always pick up where they left off. These boys took me in when Adam and I were dating and I know if I ever needed anything - I could absolutely lean on them. They also have pretty amazing wives so that's always a plus :) and now they have such sweet kids!

We went to Craig and Lauren's house Friday to just have some pizza and hang out. I had to work Saturday so we couldn't stay too late. After work Saturday we met everyone at the hotel Shaun and his family were staying at and took all the kiddos swimming. It was so nice to see the kids playing in the water together. Bitter sweet, knowing that Greyson should be doing the same things Abigail was doing. Greyson is a few months younger than her. It's hard seeing what he should be doing.. running, playing, talking, eating real food, splashing in the pool, etc. It's hard knowing that one day these kids will grow up and have little lives of their own and Greyson won't be here with us anymore. It's so hard trying to stay in the moment all the time. It's absolutely easier said than done. And sometimes even when I am in the moment, I'm still so sad and angry! Like in the moment in the pool. Greyson should be playing with Abigail and jumping off the edge into our arms. Instead we are holding him with his head resting on our shoulders because he no longer has the ability to hold his own head up. Charlotte is going to be their spit-fire for sure. She is so independent and confident in her little choices. She was so cute. Desi is so sweet. He is growing so quickly and he's still under a year old but he's at the point that Greyson kind of stopped progressing. Soon he will be crawling and walking, talking more and more.

It's always so good to spend time with these guys and their families. It was about 3 years since we saw Shaun and his family.. between COVID and the distance! After swimming the guys were talking about hitting the casino and I told Adam to get out and have fun. I took Grey home and we did a tubby, had some dinner, and got ready for bed. We had so much fun that he was pretty tuckered out and fell asleep pretty quickly. Adam stayed out for a little while with the guys and came home around 12:30.

Monday we had an appointment with a new specialty at the children's hospital in Madison. It's for the pediatric rehabilitation services. They help obtain equipment and help order braces and things to help against contractures. We drove the 2.5 hours down and got there just in time. We met with a wonderful nurse and new doctor. They honestly would have been so amazingly helpful a year ago. They help get bath chairs, adaptive strollers/wheelchairs, ppods, car seats, etc. All of which we have already.. and we had to fight so hard for everything. But they are going to help get us some braces to help Greyson's hands and feet from becoming worse. His little hands are always in a fist. It's hard to break that tone to stretch them out sometimes. Same with his feet. Since he doesn't walk or put pressure on them ever they are starting to point. We don't want to try and correct them, but we want to try and keep them from getting worse. The doctor will fit him with braces that he will wear only for an hour or 2 a day to help stretch them out. We headed back home right after that appointment and Grey did SUCH a good job in the car both ways! He was such a flirt in the doctor's office, it was so cute. We got a lot of giggles out of him!

The last picture there is from Tiny Superheros! Someone else in the hospital put that in the elevator. It was March's monthly mission where they were helping spread kindness and joy by having people take what they needed off this template. Another TSH was there and we were so excited to see the monthly mission! I'm working on another blog right now that showcases some of the amazing programs we have found in the past year. TSH is one of them. It's such a cute program for kids and their families.

Monday night was long for Adam and I. I was up a lot with Greyson and doing a lot of suctioning. It was a loooooong night. I tried to let Adam sleep as much as I could because he had his 1st night of his new class Tuesday night. He just started his nursing fundamentals class and is starting to get into the meat of learning important techniques. I ended up sleeping in his glider and was just exhausted. Thankfully I scooped up Greyson and had him lay on my chest and he slept so much better. We got some good sleep finally.

Thursday I worked a short shift and Adam's sister came into town. Adam and I have been talking more and more about our wishes for how we are going to lay Greyson to rest. Our hospice team did mention they would recommend having our wishes at least semi-prepared before the time actually comes. A conversation we definitely did not want to have but we figured we could at least go look at some funeral homes to make our decision. We went to a local place here in Green Bay. The gentleman who helped us was absolutely amazing. He was kind and patient and took his time explaining every little detail to us. It was the most difficult thing I think I've done in my entire life. I held it together until we got to the car. The minute I sat in the car the flood gates busted open. I cried really hard knowing why we just spent the last half hour there. I tried to focus on my breathing. Adam sat in the drivers seat, holding my hand, and just let me cry it out. I don't WANT to have to make these decisions. I don't WANT to pick an urn for my baby. I don't WANT to plan a celebration of life for him. It's completely unfair. He hasn't had the opportunity to live his sweet life. I'm so lucky we have had him for as long as we have, but it's still the what his life SHOULD be vs what it is. We decided to go with the only funeral home we went to. They were wonderful and had what we were looking for. We really don't want a funeral in the home itself.. we want to do a celebration of life and we will plan that on our own. I don't want it to be stuffy or solemn. I want to have all of his favorite things, show videos and photos, spread his story and awareness.

Friday was Adam's birthday though- so we put that aside and celebrated Dada. Adam's Uncle Rob surprised him with a new grill for his birthday and Adam decided he wanted to grill for his birthday. He went to our local meat market and got all 3 of us steak, shrimp. and potatoes for a side. We had an easy afternoon just hanging out with Greyson and got to cooking! I got the potatoes in the air fryer, chopped all the veggies, and got our baked potato station ready. We had a nice dinner together!

** Proceed with caution-- Religion discussion ahead **

A few weeks ago we decided that we were going to get Greyson baptized. To be honest, Adam and I are still incredibly angry and we don't have much left in our faith. We have never been super religious by any means but I did have my faith. When we were trying to get pregnant I prayed and prayed to help it happen. Then I thought I miscarried 3 times, and each time I prayed to please keep our little peanut safe. I went into labor at 33 weeks and I prayed to please let our son be ok. Then everything seemed fine. Everything felt fine. We prayed at night for our friends and family and asked God to please watch over everyone. Then we noticed the regressions in Greyson. We started the journey of figuring everything out- and I prayed every single night to please watch over Greyson and please let him be ok. Please let us figure out what is going on and let us be able to fix it. It's ok if we need more therapies and need to work harder, but please let him be ok. Then we got the diagnosis. Why would God allow us to get pregnant, go through the difficult journey to give us the child we wanted so badly only to rip him away from us? What kind of God allows a child to suffer like this and end up dying in just a few short years? What kind of God is that? Adam and I are both just angry with God. We weren't going to have him baptized in the beginning because of our anger. We decided to have him baptized a few weeks ago because we figured what is the harm. Just to be safe. But we also decided we only wanted a small baptism at our home with immediate family. Our hospice Chaplin came and did it for us. Our RN came over Thursday and asked if she could come too. We had them, Nana, Auntie Denise, Uncle Pete, Grandpa, Grandma, Courtney and us.

Grandpa held Greyson while our Chaplin Steve baptized Greyson. It was a short little program but it was nice. Steve gave us some very kind gifts for Greyson. Steve and our RN Ashley stayed for awhile and just spent time with our family. Our hospice team is so amazing. You can tell how much they truly love Grey and it means a lot.

I was off Monday and I spent the day recovering from the week and weekend - laundry, cleaning, and snuggles! I worked today and Adam has class tonight. I think Grey and I are going to have a quite night at home with more snuggles, stretches, and reading books. I think that sounds like a pretty perfect night :)

Right now this wonderful group is helping raise funds for our family. They are called Penny's Pals and they are based out of Texas. They just created a social media post sharing our story along with our paypal and gofundme.

Penny's Pals website is here: https://pennyspals.org/

We created a paypal for Greyson at https://www.paypal.com/paypalme/rudnessfamily and we are updating the amazon wishlist. We have started to really work on casting Greyson's hands and feet and trying to make sure we capture every little detail we can. Overall we're doing pretty good and Greyson has been doing really well. I'm working on the other post to share all the wonderful programs that we've found with this diagnosis! Hopefully I can post that soon :)

xoxo,

Kim