CDHi President’s Blog – Walking on the Camino Ingles for CDH – April 4, 2024

April 4, 2024 – Industria to Fene, Spain I got up early this morning, grabbed breakfast, and then threw on all my gear. I didn’t leave anything behind, as I wasn’t sure what to leave. So, I decided to find a store on the way and get a small backpack to distribute some of the weight from my back to the front; let’s see if this works, and if not, then I need to get rid of some things. It was very cloudy and overcast today, but no rain as of yet. I left the raincoat off, wore my T-shirt with the sweatshirt over the top of it, grabbed my hiking poles, and started walking. I now carry a backpack, a fanny pack, a little phone case on straps, and my first aid kit in a pack attached to my fanny pack. Underneath all of that is a flat hidden wallet pack under my clothes with my credit cards and passport. I have an umbrella, raincoat, two hiking poles, and at least one bottle of water. So, I start walking and didn’t even get around the first corner when I met a huge group of pilgrims. But they’re getting out of a bus in the middle of the Camino, so obviously, they’re not regular pilgrims but tourist pilgrims. This means they have bought a tour and are walking a small portion of the Camino for the experience, but without all the gear, backpacks, sore muscles, and lack of sleep. It’s a bit annoying to see these very clean and organized “pilgrims” with tiny backpacks, probably carrying just a couple of snacks, a bottle of water, their phone, and money. They are “fake pilgrims,” but I suppose that’s just a testament to the power of the Camino. I try not to judge because maybe many of these people can’t walk more than a few hours or they’re just rushing through and want a taste of the Camino because they can’t do the full journey. I understand that. They are all looking at me, and I know I look quite odd, covered in polka dots with sick kids’ faces all over them, and I have things hanging all off of me and my clothes. The tour guide is talking to them very fast, and then it occurs to me that I am the first pilgrim they have ever seen. What an honor that is. I walked past them as they were still chatting, and I’m on the road. Because I am not the fastest walker, the group catches up to me after a couple of kilometers. We get to a fork in the road where we have a choice to take one of the shortcuts, which is an easier route, or the traditional route, which they have marked as “very dangerous.” Now, how dangerous could it possibly be? Have I completely cursed myself with yesterday’s blog post? So we’re all standing around on the side of the road looking at a big map, and everyone’s trying to decide which road in the fork they’re taking. The tour guide is explaining to the group what the dangers are, and I’m eavesdropping, trying to translate. I look at his group, and there are several very elderly people in this group when they all start going down the road marked “dangerous.” I decided that if they can do it, then I can do it too. Besides, I said I was not going to take the easy routes. We start walking, and we go uphill pretty sharply, and then back downhill pretty sharply. There are some sharp turns, very narrow roads with cars. But there were no bridges, no rock climbs, nothing we had to crawl through. The biggest threat was falling down the steep hills. Everyone made it down, and no one fell. There were about 30 people in the group, and people started to ask me where I was from, and then eventually what was all over my shirt and my vest. I explained to them what CDH was and that I was on a charity walk. Finally, I was able to raise some awareness! We made it to the next town, and I stopped in one of the shops, and the group went on their way. I found a small backpack for my laptop, and it definitely took some of the weight off my shoulders and back. It’s a lot easier to carry, though I don’t particularly like the straps on this backpack, so I have to sort that out. Thanks to the world’s most creative mother, I inherited a flair for being able to MacGyver things to work out. It may not always look attractive, but it gets the job done. So if in the pictures, you see a string hanging from my hat because the wind is blowing, I used a shoelace and some safety pins to tie it down to my backpack. Yes, I realize it looks like a toddler whose pacifier is on a string and pinned to their shirt, but I don’t want to lose this hat. That’s definitely not a good example of my creative fixes, but that was this morning’s project. It’s been windy every single day, and I need to figure out a way to be able to take more pictures of the wings. Now, back to this new laptop backpack. If I can find a way to use one of these shirts, I might be able to keep the shirt and fix these straps. I’m sure it’s definitely not going to help the look of my outfit. Now, if you know me personally, or if you’ve ever been to a medical conference with me, you know that when I travel, I already dress a bit odd. I like to call it “Travel glamour”. I am not a fan of fanny packs and looking like a tourist. I’m a fan of trying to look pretty and dressing like an Instagram influencer who has no shame. I’ve been dressing this way long before Instagram, pretty much since I could dress myself. So that’s today’s fashion commentary for the day! I continued walking and came across a beach and quite a lovely bridge, then entered this town. Trying to make it to the next town, I decided that I was just going to rush through this one, but there was this castle I wanted to see, and it was only two blocks away from my route. As I’m walking over there, I stopped in a parking lot, and someone beside me rolled down his window and, with his partner, leaned out to try to tell me where the hostel was. I told them that I was going to see the castle, but thank you very much. Not even a minute later, an older lady walked past me with a little girl, obviously her granddaughter because she kept calling her “Abuela”, and she starts pointing, telling me where the hostel is too. I’m literally standing in front of the castle, taking pictures of it at this point. She seems very sweet and then tells me in English, which was actually pretty impressive, “The key to the castle is in the tourist office.” I’m like, “They just give you the key? That’s pretty cool.” She nods and says yes, the tourist office is this way, pointing up the stairs. The castle, she says, “I will show you.” So at this point, I think I’m getting the key to go see the inside of the castle and I’m thinking this is just a really fortuitous situation. I follow her. We walk up the stairs to the other side of the castle and there’s a door, and we walk inside. The tourist office is inside the castle. Well, that makes sense. She’s talking to the tourist office person in Spanish, and I understand she’s telling her that I’m a pilgrim and I’ve come to see the castle and I want a key. And I’m still thinking that I’m going to see some part of the castle that has not been unlocked. So she asks me for my passport and then to fill out this little form, asking for my phone number and my signature and my name. She puts a key on the desk, and I’m thinking, “Wow, this is really cool,” and then she asks me for six euros. Before I sign, I ask, “Exactly what am I signing, and what am I paying six euros for?” “Your room,” she says. I say, “Did I just sign in for a hostel room?” “Yes,” she says. I laugh. She asks if everything is OK, and I say yes, I just thought I was looking at the castle, but I do need a room for tonight, so yes, please. I mean, it’s just six euros, which is great. She gives me directions to the hostel room, which is just down the street. I have my key, and I’m resigned to the fact that I’m staying here tonight because it’s just a sign. When someone hands you a key to a room, I think God is pretty much telling me to stay put. So, I am staying put. I’m in a dorm room tonight, and it has two floors and about 20 bunk beds. As of 2 o’clock, there was just one other woman in there, and she has made herself quite at home, with all her things spread out and her food organized. She seems very at home but a little trepidatious about having another guest in the hostel. She doesn’t speak any English, and she’s not interested in listening to Spanish. She’s on the first floor, and I’m on the second floor because it’s open. So, upstairs I claim the bottom bunk, open up the sheet and pillowcase pack, and my linens are paper. This is exactly what I thought it would be like if I had ever wanted to stay the night over at my gynecologist’s office. Ha ha. Now, I am very glad that I did not get rid of my sleeping bag or the bag liner. It’s very cold in the dorm and it’s going to be cold tonight. There are no lockers in the dorm, and I have no idea who else is going to be coming in, so I threw all my bags back on me and decided to walk around town to get some food. I still didn’t have both of my stamps for the day in my pilgrim passport, so I needed to take care of that. I found a cute little café with seating outside, ordered a hot chocolate because it was far too late in the day for coffee for me, and decided to catch up on the news, which I haven’t read at all since I’ve been on this journey. Which is good for me, because I need to detox a little from the news anyway. I walked around town a bit, took some photos for today’s blog post, and am now currently trying to stay awake so that I don’t crawl into my bunk bed at 5 o’clock. I have decided that I’m going to get my blog post done, some of the celebrity posts done, and then I’m going to be asleep before 7 PM. I very much need to catch up on sleep. That old lady with the promise of a key to the castle was an angel telling me that I need to rest. I’m going to video making this bunk bed and taking off all these bags so everyone can see exactly what I’m dealing with here. I’m sharing this adventure and writing all these posts, taking these pictures, and sharing them not because I’m some type of travel blogger who just wants everyone to see what I’m doing. I want these kids to get some help. So if you’re reading these blog posts, and I’m either entertaining you, confusing you, or just annoying you, you’re welcome. Please give back and donate to these kids. If you have a little bit of extra sympathy after you throw a lot of sympathy and empathy towards my kids, have a little bit for this very tired, worn-out Charity President and donate a little bit more so we can hire some help. We really need it. Who else but the Charity president would lug around a laptop on a hiking journey? If I worked in academia, I would be on sabbatical doing this. Or if I was a “normal” person, I would be on vacation and not working. I’m not complaining at all; I’m just stating the fact that charities need help. Charity workers, volunteers need help. We don’t have enough; we can’t do enough of the work to help the people that we serve, and we have a lot of kids and their families to serve. There are so many things we want to do. I’m just a volunteer, and I’m working other jobs, and we really need several full-time people at the Charity so that we can start doing some amazing things that we used to be able to do before Covid and the bad economy. There are so many research opportunities in the pipeline right now that need funding, and we really want to write some checks to these researchers. Back at the charity, we have 2 amazing volunteers pretty much running all of CDH Awareness Month; Mellissa Reaves requested, gathered, and posts all proclamations from governors and mayors on behalf of the charity and Jennifer Doolan requested and posts all the light ups around the world. Mellissa’s daughter, Allie, is a CDH Survivor. Jennifer’s daughter, Juniper, is a CDH Angel. This is how our charity works; moms, dads, survivors, grandparents all working together. This is how most disease communities work and how causes and cures are found. We have Board Members and volunteers walking with me in the virtual CDH Race for Research. We have volunteers handling some of our social media (shout out to Jennifer, who has been a lifesaver this year!!!). We have patients and families posting photos, videos, and their stories to raise awareness. We have patients and families fundraising and participating in the race and virtual CDH Ribbons. We have hospitals posting for awareness. We all have to do our part. It’s a two-sided coin; we have our own personal experiences and journeys, but we also have a duty to the community and to the patients here and the patients of the future to get up, participate and do something to fight Congenital Diaphragmatic Hernia. So, I’m out here walking, but I’m also out here for CDH, and to raise money! Because charities can do nothing for causes without funds to do so. So please help us raise some money. Because we have got a whole lot of kids who are counting on us. Video – ——————————— Join me virtually! Vlogging from the Camino de Santiago in Spain for the 2024 CDH Race for Research. Sponsor or donate at my official fundraiser site – Donate via Facebook – Run / Walk / Cycle with me! Learn more about Congenital Diaphragmatic Hernia or donate directly to the charity at #cdhawareness #cdhawarenessmonth #cdh #caminodesantiago #congenitaldiaphragamatichernia #pediatricsurgery #raredisease #globalsurgery #charity #patientadvocate #patientadvocacy #caminoingles #fundraiser #pharma #biotech #congenitalanomalies #savethecherubs #cdhrace #cdhraceforresearch #caminoingles

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