Constant up and down rollercoaster

5 years ago on 12/23/2016, I had to work at my call center job in Milwaukee and Adam had the day off. His sister Courtney was staying with us for Christmas and our plan was to open presents after I got off work and then head up to Green Bay because we had tickets to go see the Packer game the next day. It's usually about a 2hour drive or so from Milwaukee to Green Bay and we didn't want to drive up game day because traffic is a little crazy. I had no idea that Adam and Courtney were running around while I was working planning his proposal. I knew Adam had a ring but I had no idea what it looked like or when he would finally pop the question. At that point we had been together for 6 years and I was ready to be his wife. Adam and his sister spent the day looking for a good place for the proposal to happen and they found a campground near our apartment that puts out lights for a Christmas display that you drive around synced to the radio station. There is a place to park at the end for hot chocolate, pictures, and a little gift shop. After work and opening presents we packed up the car and headed towards this campground. I thought it was so bizarre that Adam knew exactly where he was going. We had never been down that way before and he seemed to know exactly where to go. To be fair, he's really good at directions and I am not, so I figured maybe he just looked at google maps and had it down pat before we left. We pulled up and before we got too far in he mentioned finding the radio station that syncs to the lights- but I had no idea they did that yet. We turned a corner and there was the sign saying to turn to the station.. how did he know that? "Oh, it's on their website" Ok, so we pulled in, started driving around looking at the beautiful light display. It was gorgeous! Christmas is my absolute favorite and I think Christmas lights make the season magical. They truly make me happy.

Once we drove around the campground it was snowing pretty hard and Courtney kept insisting I stop the car so she could use the bathroom and get some pictures. I remember thinking we just left and I don't want to stop- I want to hit the dang road to Green Bay. I drove passed some parking spots and Courtney was in the back yelling at me to park. Ok FINE. So I pulled in, she whips my boots out for me so I can have my winter boots on and we all headed toward the bathroom. I didn't have to go so I waited outside. There was this cute walk way to their gift shop with lights that you walk under and it opened up to a space surrounded by decorations. We walked over there and Adam handed me an envelope and I thought he was handing me a gift card. I remember thinking "um, it's heavily snowing, it's dark outside, and it's kind of chilly.. you couldn't give me the gift card in the car?" But it wasn't a gift card, it was a sweet hand-written letter. I leaned in and gave him a kiss when he started to reach into his pocket. He said something along the lines of Kim, I know this has taken a while- and before he could finish it finally clicked. He got down on one knee and asked me to marry him. Obviously it was a very ecstatic YES! Courtney got pictures and video for us:)

Here is the video of the proposal :)

It was the perfect proposal - lots of "oh my gosh, oh my gosh". We got back in the car after and I was in shock. We headed up to Green Bay and of course, we had to call our family and friends to let them know we were FINALLY engaged. The roads were terrible and the snow was just coming down. It tooks us 2 hours to go what normally took 45minutes. We got to Sheboygan and Courtney goes "did anyone grab the packer tickets?" ... ugh, no... So we had to turn around and drive back to Milwaukee and head back to Green Bay. We finally got there around midnight and headed to bed. We went to Lambeau in the morning and watched the Packers win before heading home to Michigan for Christmas with our families.

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Now, 5 years later we enrolled our beautiful son in hospice care. What a weird trajectory. I was struggling with the concept of having him in hospice. We know the end results and we know it's coming but the word hospice is scary. Hospice for adults typically means 6months or less left in their life and it means they stop with life-saving treatments (like chemo). They transition from treatment to comfort. For Pediatrics it's different. They call it concurrent care- so we can still keep Greyson in his physical therapy and see his specialists, but we have help from skilled nurses who can come directly into our home and keep him comfortable and help Adam and I. It also doesn't mean 6months or less for peds. It's definitely a rollercoaster of emotions We are thankful that we have help now. We can have our CNA come in to help bathe Grey and she can even give him touch massages. We have the same RN, CNA, social worker, and Chaplin if we choose. It's going to be nice to have a team to help us. On the other hand it's still hospice. It's still end of life care. The social worker had us sign forms and one she handed me was a DNR- a do not resuscitate form. It would stop them from helping Grey if he stopped breathing (like no CPR etc) but I couldn't sign it. I'm not there yet. He is still doing ok and I'm just not there. She also asked if we had any funeral homes picked out.

We haven't had that conversation at all. I want to plan everything ahead of time but how do you plan your child's funeral? It's a difficult conversation and it's hard to imagine how you want your child laid to rest. Adam and I both talked after hospice left that we want to discuss it but we are going to wait until after Christmas. It's Christmas Eve today and we want to just enjoy time with the family and Grey. Our kitchen decorations are so different than other families. Our hospice team is on our fridge, tubes drying on our handles, suction tubing hanging on our cupboards and our drying rack is full of syringes. It's just a normal thing for us but yet another reminder of how different our lives are than the typical families.

Of course we have the house decorated for Christmas but we don't have the presents under the tree like we would if Greyson didn't have tay-sachs. I didn't think Christmas would be so hard, but it's been a little difficult. We still have our son but it is so very different than I imagined it would be when we found out we were pregnant.

We decorated amongst the medical supplies and look at all the beautiful cards we have received from our friends and family. We had to move over to our second arch way in our living room to make the next set of cards. I also made some glitter ornaments and some clear ones- I'm working on the clear ones to find a way to have a nice colored background that won't chip.

Last night we went to Green Bay Botanical Garden to look at their display of Christmas lights. It was so beautiful. They did such a great job with their display and despite the show being sold out it wasn't overly crowded. They had timed entry and it was so nice to have it

spaced out.

We even ran into Santa there!

Then this is from today. We gave Grey a bath and this was his crazy curls when he got out.

Today we spent Christmas Eve at my parents house with my family. It was so nice to see them and have a nice family dinner together. Tomorrow is Christmas and we are doing a quiet morning here and then my two sisters, niece, and myself are going to the Packer game! I'm hoping the weather will be ok.

I'm sure I will have a lot of pictures to share with you after tomorrow. So for now, Merry Christmas Eve to you and yours!

xoxo,

Kim