CDHi President’s Blog – Walking on the Camino Ingles for CDH – April 5, 2024

April 5, 2024 – Pontedueme to Betanzos, Spain

Sleeping in a hostel dormitory was okay, except there was no heat. I have been carrying around a sleeping bag and a sheet pocket in my backpack, so I did have bedding. They provided a flat sheet and pillowcase, but they were made out of paper. Ever imagine what it would be like to have a sleepover at the gynecologist’s office? This was it, ha ha.

The hostel was located on the pier next to the water, so it was extremely cold with the wind whipping all night long under the eaves of the building, and water banging on the tin roof from the hard rain.

There were 10 other women in the dorm with me, and everyone was quiet as church mice. When I finally fell asleep, I slept hard and got about 10 hours of sleep, which was much needed. I woke up at 6 o’clock this morning, and the two girls in the bunk bed across from me woke up at the same time. They asked me if I spoke Spanish, I said a little, they asked if they could turn the light on, and I said yes. Then we ended up going to the café together at about seven in the morning on our way out.

They were young teachers from Madrid, also walking the Camino. It was only their second day, and I was on day four. They were very nice, and we wished each other “Buen Camino” as we separated, because I knew I wouldn’t be able to keep up with them.

I started back on the Camino by about 7:30 this morning, and the weather was nice, but the start was a little rocky because it was completely uphill again. But I had a lot of energy and was super excited, and I had a goal of getting all the way to the stop, which was Betanzos, 20.2 km away.

I saw many more pilgrims today than I have seen before, and I suppose it’s because the weather was so nice. About an hour in, I ended up at the same pace with two middle-aged men who are also American; they were pastors from Texas, and there were two more pastors with them who were lagging a bit behind, another man and a woman. We chatted a little bit as we walked, and then I went on ahead as they waited for the two people who were lagging behind.

Later, they had caught up with me, and the lady and I just hit it off and we started chatting, even having lunch at the halfway point.

We all got on so well that we ended up walking together the rest of the way. Honestly, if it wasn’t for them, I probably would’ve stopped walking a lot earlier. As determined as I was to make it all the way, my ankle was starting to hurt, and I was very grateful to have the walking sticks. I sprained my ankle a few years ago in a “skiing accident,” and it really hasn’t bothered me much, but it started to bother me yesterday.

Alicia, the lady I became friends with, is also a pastor in Texas, married to one of the other pastors in the walking group. They were all on sabbatical after the Easter festivities in their different churches. We had great conversations about different pilgrimages, trips to Israel, miracles we’ve heard of, miracles we’ve seen with our own eyes. We talked about our lives, and I got to raise lots of awareness about CDH and share Shane’s story. We had great conversations, and I’m very grateful to have met all of them.

We met a lot of other pilgrims during the day; they would pass us, and then we would pass them. We saw each other again at water stops. All along the Camino, there’s great signage so we know where to go, and there are also water fountains specifically there for us.

We even found a couple of volunteer stations. One was a little booth set up with bracelets with the seashell symbol for the Camino, there for pilgrims, all created by volunteers who just wanted to support the pilgrims on their journey. So sweet!

Another volunteer stop was two booths set up under a tent full of free snacks and cold drinks, surrounded by tables and chairs for us to take a rest, even with a stamp for our Camino passports.

Everyone on the Camino route is so supportive of pilgrims. The little café where we had lunch had an entire cabinet in their restroom with different pilgrim items like travel-sized shampoos, deodorants, or socks, with a little note on one of the shelves that said, “If you are a pilgrim and you need any of these things, they are yours for free. Buen Camino.”

There is a saying on the Camino, “the Camino will provide,” meaning that you shouldn’t worry because whatever you need, somehow it will show up for you. Blessings will fall on you. You need some food? Somehow, you will find food. You need a place to sleep? Either a bed will be found or a soft spot on the grass. Water is easily found, and toilets are easily found, or you are afforded privacy to take care of business however you need to.

I have lost count of how many perfect strangers have smiled at me and wished me “Buen Camino.” I’ve had people roll down their car windows to tell me that from across streets, everyone is so incredibly kind and supportive. It’s very heartwarming and it’s the antithesis of social media and the Internet, and it makes me want to just throw my phone away and live on the Camino surrounded by all the kind people and the miracles and the blessings.

I’m very religious, if you haven’t figured it out by my posts yet, but this is also a charity fundraiser. Even though it’s personal to me and I’m using my personal journey as a charity fundraiser, I always hesitate about how much to include about myself. Charity is not religious or political. It’s for every CDH patient and their family from anywhere in the world, of any faith or none. So by sharing my experiences, am I impeding the charity fundraising? It’s always hard to know where to put myself or to wear the President of the Charity hat.

When I started this walk, I asked our team how much I should share; they all told me to be myself, but I’m not myself with the Charity anymore. Especially on social media, I’m just working too much to just be a person, and I’ve been burned too many times to put myself out there like I used to. And I don’t like that! I’m a pretty good person, I do have a big mouth and say things that maybe I shouldn’t because inevitably someone will disagree with something I say and it always creates drama. But I’m not that controversial, and I always try to be kind, usually just sticking up for the weak, most often, my CDH kids. But you know, if you say the sky is blue, someone’s going to argue that it’s a shade of taupe. Who has time for any of that nonsense?

But here I am, walking in another country, complaining about sore ankles and blisters on my feet. That’s pretty personal. Undoubtedly more information than any of you ever cared to know about me.

So you’re just going to get the unfiltered ramblings of this grieving mom, charity leader with achy feet and a whole lot of big dreams to help a lot of sick kids.

When I envisioned this walk, it had nothing to do with the Charity. It was supposed to be a spiritual journey for myself. Now, I’m hoping that it’s both a spiritual journey for myself and also a very productive awareness and fundraising project. Project? Scheme? Hope? I’m not sure what to call this, other than I really want to get these kids some help. And I feel guilty for being here and doing something this big if they are not involved in it to benefit from it somehow because my entire adult life has been about these kids, they are “my” kids.

But in my prayers before this walk, I have asked God to please walk with me, show me more patience, help me learn how to control my big mouth, give me inspiration on how to help these kids, send more help to them. But mostly, to walk with me.

I think He did that today through Alicia.

Sometimes it takes talking to a stranger for hours about incredibly personal moments in your life, like your son’s funeral, or listening to that person’s tragedies, to realize that humans just have everything in common with each other, but just at different times in life. We’re not that different, really.

Sometimes, you just need a stranger with no personal connection to your life or your work at all to look at you and tell you you’re doing a great job and to keep going, that you’re doing what you’re supposed to be doing. They have no motive to tell you otherwise. It’s completely objective, a viewpoint with no emotional attachment to you whatsoever, but who is also on the same faith journey as you, to give you an opinion rooted in that faith, is just a gift.

Because I struggle with the charity every single day. Not with just the work, or the fundraising, or the social media, or the travel, or any of the million parts of this huge machine that we created, but I struggle with my role as the leader. I never signed up for this job. I never wanted to lead a global organization. I just wanted to support other families and make sure they had the information they needed. That’s how we started. And then it just grew and grew. But my struggle every day is never feeling like I’m doing enough, always feeling like I’m falling short, always trying to find a dollar to pay a bill, or figure out a way to help a family, or create something out of thin air, to do the work of empty volunteer positions, to find time to train new volunteers. Mostly, I beat myself up because I don’t think I’m doing a good enough job.

There’s a quote somewhere that I can’t quite remember, and I don’t remember who said it either, but I’m sure it was a politician, that said that people who want to be leaders should not be leaders, and people who just want to help should be leaders. So by that definition, I’m overqualified. But there are just so many things that we need to be doing that we aren’t because we can’t. And we shouldn’t still be struggling with funding almost 30 years later. And why haven’t I been able to get more people to care about these kids yet?

I beat myself up for things that are societal changes and not necessarily reflective of the charity or my leadership. Like loss of donations because of the economy, or loss of volunteers because of the pandemic. Just shifts in attitude of communities where everyone used to want to work together, now everything in this world is splintered. Almost every disease community I know has split groups now. Even the doctors have splinter groups. It’s just much harder to run a charity in 2024. It’s not just our charity or our patient community; it’s everyone. We are all struggling.

But as a leader, I don’t have the luxury to sit around and whine about that. I can’t just cry about how things used to be and want to bring those back. I have to pivot and change with the times, and the organization does too. People change, people come and go, new technology comes along, economies go up and down. That’s just life. We constantly have to reinvent ourselves. We constantly have to fill new needs. We get involved in new projects, new collaborations, more research.

And we’ve done some incredible things: A bill introduced on the floor of the US House of Representatives, parades around the country, the CDH research registry, conferences for families, billboards for awareness, lighting up landmarks around the world, proclamations from every governor, we’ve raised $3 million for this fight.

I’m very proud of what we’ve accomplished. “We.” The whole community. Because this was never my charity. It was always ours and always will be.

This is just another mountain to climb, much like on the Camino. Just keep going. Until you get to the final destination.

Stopping Congenital Diaphragmatic Hernia. Saving kids.

It’s amazing how much the Camino is symbolic of everything in life. Just keep going forward until you get to the finish line.

We made it to Betanzos, we were all dragging as we came into the city. We said our goodbyes there. Their lodging was in one part of town and mine was in the other. They were going ahead tomorrow, but I knew that I needed a rest day.

The next two legs of the journey are going to be the most strenuous, one of them is mountain climbing. I knew I couldn’t do both of those legs in the same day after walking all these miles today and not taking a day off in the past four days.

I could feel the bottom of my feet starting to hurt for the first time on this trip, and I knew I had two sore spots that were going to turn into blisters if I did not get off of them. If you get a blister on the Camino, that pretty much means the end of the Camino for you. I did not come this far to have to quit, so I will nurse my feet until they are better and I can get back on the road.

I arrived at the hostel, booked it for two nights, walked up to my room as I got a private room because I’m staying for two nights. I sat on the bed, opened up the computer, sat down, and promptly fell asleep. No work done, no dinner either.

I was just exhausted, equally physically and emotionally.

God did answer my request. He was there with me today. He did walk with me.

Join me virtually! Vlogging from the Camino de Santiago in Spain for the 2024 CDH Race for Research.

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