Walk this Way: Journey to Cincy

We left Sunday. As we hopped on the highway, Tim said "I can't believe I am doing this drive again." I agreed. We are in this together thankfully. Tim has done this drive many times solo and I knew I needed to join him and be there for Preston and thankfully, Reid decided to come too! We arrived in Terra Haute, IN for the night. We had a great stay with swimming, hot tub, dinner at Texas Roadhouse and a delicious breakfast to send us on our way to Cincy today. We arrived with a stop to Graeters first of course. Their new flavor was like a personal WELCOME straight to my heart LOL I am glad we have this treat to always look forward to. We pulled up to the Ronald McDonald House and couldn't believe the renovations and size of this new home. WOW! It's stunning. The warm welcome is always appreciated. And yet, I had a lump in my throat. I saw the photo of how little Preston was the last time we stayed here at check-in today and it made me realize how much he has changed but also how much in our life has changed. We have already done a load of laundry and the boys have each built a lego set and we have our room all set up for the week. Tomorrow is a long day with 4 clinic appointments (FEES, Voice study, Pulmonary function test, and Pulmonology appt). I will update how those go once we find out. We will be there all morning and then be able to walk back to the RMH for lunch before heading back to the hospital for the afternoon appts. Just another perk of the RMH being right across the street from Childrens. Thursday is the biggest day with his O.R. procedure. We got the pre-op instructions today with a check in time for 12noon but no exact O.R. time yet. Stay tuned on that. We have friends wanting to set alarms to pray so I will be sure to let you all know. I am so hopeful for a simple fix which would honestly be miracle news......I don't know what that would look like but we need a solution to Preston's issues and a full airway surgery could also be that solution and I know what that entails and I can't even go there right now. So for now, Tim and I stay hopeful. I have never prayed so hard in my life.

Lastly, out of 177 rooms, we were placed in the exact same room I stayed in when my dad and I brought P here for his 2nd airway surgery. Really took me back and I was filled with a cocktail of emotions. We ate dinner with families who are all here for the same reason....to get their child the care they need. Most are displaced too. There is peace to be found in that kind of solidarity and yet none of us wish to be here. Such a weird place to be and we have no choice to accept it and carry on. We ended the night with delivering the goodie bags and it filled all of us up knowing everyone would have something special in their mailbox. Just like when we first came here and experienced the same thing. Feels good to spread joy! Special thank you to my friend, Jamie Freedlund, for continuing to have an impact on me with that kind of mindset. I am really digging deep these days to spread and find joy in every step of this journey.

I just want to take a minute and say what an incredible 'big' brother Reid is to P. He wasn't sure he was going to come with us. We left it totally up to him. He loves being at school and with his friends so much and he is my routine oriented kiddo. I wish everyone could see the role he is playing on this trip for P. He got out of the pool at the hotel and was all excited to show me his hair styled wet and I took a hard look at him and realized just how grown up he has become and what a strong rock he is for P. He is the child that always challenges me and can be hard headed but he has a soft spot most dont see and he really has been worried about Preston. Especially with all the issues Preston encountered this winter. Reid has been in the shadow many times the past 12 years and Tim and I fight for him any chance we get so he can be equally apart of this story. His role matters and we want him to know that. It was hard to realize this early on but with time and therapy, Tim and I are more aware of this than ever before. My love for him is a different protective kind of love than what I have for P. I believe all parents love their children in different ways. It's hard to describe. He has witnessed alot of hard things and I am so happy he came with us. He told me tonight, "I am so glad I came mom!" It's wonderful Reid will experience RMH with it being such an important and impactful place.

Lastly, I will never stop saying THANK YOU to everyone who is loving us from afar and has lifted us up prior to leaving. Every text, call, IG message, fb message, gift, food, help with the goodie bags and venmos have added tremendous light to our path more than you know. We are grateful!!!