Lighthouse

Posted 11.21.2019 in Leukemia Journey

I remember in those early days, and weeks and even months after Brynna’s diagnosis, I had no desire to reach out to other cancer families. I had no desire to read other stories or hear other stories. I know that sounds so bad, but I think the majority of that was due to fear. Brynna’s situation was SO dire, so terrifying, so VERY high risk, that I couldn’t do it. I didn’t want to hear the what-ifs, I didn’t want to see the possibilities, I didn’t want to hear the stories of those who did not have good outcomes. I didn’t even want to see the good outcomes because I was terrified we would never get there. I couldn’t do it. I was so scared of what I might hear, what I might read, and what I might start to fear for Brynna (because I already feared SO very much). And on the flipside, we also were so surrounded and uplifted and carried by the incredible community around us…just blown away by the encouragement and support and prayers in every area of our life, I didn’t feel the initial need to connect with other families. So, when I heard about Lighthouse I thought it sounded cool for other families, but not for us.

I remember the first time I heard about Lighthouse, it was on a radio program my dad had sent me a link to. Dr. Dobson was interviewing a few pediatric cancer families on his Family Talk program, and on the panel was a woman who served as a nurse at Lighthouse. I listened to the program with tears streaming down my face, hearing the stories of these families…one had lost a child, one had a child who had just relapsed, and others who were in the midst of treatment, but they all talked about Lighthouse Retreat, and the incredible impact it had on their families. I thought it sounded cool, but, if I’m being honest, didn’t think it was for me, for us. At that point in our journey, I didn’t see how connecting with other families would be beneficial, and for some reason, I got the impression that Lighthouse was a week of “organized activities” (like camp when we were kids) and it just didn’t sound like something I would enjoy, so I dismissed it.

In the midst of the summer following Brynna’s diagnosis, my outlook on things started to change. I started to realize that Brynna’s story was out there for other families to read, and several mommas contacted me. One in particular has become a very dear friend, and even though we live half a country apart, we talk very regularly, share our fears, our hopes, our grief, everything that being a mom of a child battling cancer, deals with. And as I got to know her, as I followed other stories, I realized how amazing and uplifting these relationships were, and how much of Jesus I could share through connecting and listening and loving on others in the midst of similar storms. It’s a different world, raising a child battling cancer. It’s a world we would never choose, but we are all now connected through, and it’s so encouraging to have these fellow momma’s and families who understand the depths of fear, and how the silliest cough can send our worry sky high. 

At about the same time, we met an incredible couple at our church (shout out to the Moore’s!!), who are on the other side of their journey. Their daughter was diagnosed with leukemia several years ago, and is doing fantastic today. In the midst of their journey, they got connected with Lighthouse Retreat, and have pretty much single-handedly been the reason that there is such a massive Richmond, VA contingent involved every single summer. As we got to know them, their passion for Lighthouse was contagious, and when the applications were released last December, I filled ours out the first day and submitted it, and then we counted down the days to our retreat.

All this lead up, and I haven’t even gotten to the retreat itself yet!! That’s what happens when I haven’t written in weeks. 🙂 I ramble, but with a final purpose in mind, somewhere at least! Ha. Ok, reeling myself back in….

This past July, our family attended the Lighthouse Retreat down at Emerald Isle in North Carolina, and our lives were forever changed. I don’t know if I can adequately describe everything, but I’m sure going to try! And guys, this isn’t just for fellow cancer families, this is for those of you who have a heart to SERVE families, whether you are single, a couple, or a full family. I will share on both sides! I’ll start with cancer families, but please, please keep reading even if this doesn’t apply to you. 🙂

CANCER FAMILIES

That first summer after Brynna’s diagnosis, we did nothing. She was at such a low point, she wasn’t allowed to go anywhere. We were so fearful and careful and exhausted, we had no choice but to stay isolated. We did tiny things here and there, but the majority of our summer trips were between home and clinic, filled with chemo, blood transfusions, sleepless nights, and as much “good” and “joy” as we could cram in the cracks. I remember having to stay away from social media a lot because it was so painful watching all our friends take family vacations, go to the beach, or even just have cookouts. It was painful because it was such a reminder of what we lost…such a reminder of the battle our daughter was fighting. 

This past summer was different. The maintenance phase of treatment provides SO much more freedom and ability to DO things. We packed a lifetime of memories into this summer, but one of the absolute highlights was Lighthouse.

The moment we pulled up to the main house at Emerald Isle, we were greeted like long lost family. I’m an introvert, so I don’t always know how to handle situations with large groups of people, but this never felt like a group of strangers. After our initial welcome, we were given our welcome packets, and directed to our condo…which was right on the beach, another huge gift! And then…and then we met our Family Partners, and y’all, there are truly no words to describe this group of people. 

As a quick note here, each family that attends Lighthouse, is assigned a Family Partner, and these Family Partners do everything for you during the week, but they are so much more than helpers, they quickly become some very, very dear friends. They were one of the absolute highlights of the week (HUGE perk that our sweet family was from Richmond!!). Matt & Olga, and their children Ben & Charlotte, along with Kaylee made sure our week was smooth, fun, and relaxing (as relaxing as a trip can be with 3 kids 5 and under, haha). 🙂 

Our Family Partners unloaded our car for us (and dragged all our luggage up 3 flights of stairs, which was no small feat…you can just try to imagine how much we packed for a week at the beach with 3 kids), and took us up to our condo. There, they had fresh cookies, a huge basket full of our favorite foods, games and books and toys for the kids…we felt like we walked into our 2nd home. The entire week, they cleaned our condo for us, did our laundry, served us our food, helped watch our kids, and just loved on us in an incredible way. We were constantly surprised around every corner, and one of my many favorite things from the week, was in the box we were given at the end. Amidst a lot of other sweet items, was a jar, and that jar was filled with sweet notes, prayers, letters of encouragement, and love written out by every family partner individual. I still haven’t gotten through them all, because I start weeping whenever I pull them out. The amount of love and heart behind each of those notes is profound.

Golly, are you still reading? I can’t believe how long this is! And I still have so much to say! Eeps. Sorry friends!

During the week, the schedule is very intentional, and very well planned out. I inwardly cringed at the thought of a “schedule”, but it really wasn’t that. I don’t have a better word for it, but when you are actually there, when you are actually living it, it is has such a purpose. After breakfast every morning, the adults go off together to a place called Common Ground, while the kids go off to FlipFlop. Yup, ALL the kids, even the young ones. The kids are separated into age groups, and have games, swim time, play time, etc., organized and run by the Family Partners and summer staff. If you have met our children (particularly our 2 youngest), you would understand my legitimate fear in this going over well (leave our kids for 2 hours!? Everyone back home might be able to hear the cries of distress!), but it was fantastic. There were a few tears here and there from Brynna and Cole, but overall, they did AMAZING. Brynna still asks me often, when she gets to go back to FlipFlop. <3 

And then the time at Common Ground…how do you even write about that? This is a 2 hour block of time, where you are in a room with a handful of other couples (11 on our retreat), and stories are shared, fears, worries, grief, hope, love, and so, so many tears. It is a place where you realize you are not alone in your journey, and you don’t have to hide your fears, your worries, your tears. You don’t have to do this alone. You are loved. Your family is loved. There is so much relief in sharing, so much set loose, so much brought to the surface in hearing the stories of others. There were so many different types of cancers represented in our group, so many different statuses, so many different families. Yet, we were all united in our battle, and it was a beautiful thing to watch this group of strangers become good friends, huge cheerleaders, and prayer warriors for each other, within just a few days. There were many breakthroughs that week!

And after the morning organized activities, the afternoons were always just free for families. This part was a little hard just because ours were at the age that naps were still much needed, but being right on the beach, we could take turns slipping out either by ourselves or with Wyatt or whoever happened to be awake. Our kids were also very early risers, so we got a TON of quality family time in the mornings before breakfast. 🙂 Every evening had a plan, from a date night out for the parents (the staff and Family Partners put on a MASSIVE party for our kids, and then our Family Partners put our kids to bed!!), a family night out to wherever we would like to go, a red carpet night, etc. It was just refreshing, fun, and so life giving!

The entire week was life giving. It was a chance to escape the day to day drudgery of cancer life. Yes, the chemo came with us. Yes, she still had to take it every morning, and the sunscreen had to be slathered on thickly to protect her from the sun, but to see the light in her eyes? To see the JOY as she ran along the beach, with the sand in her toes…to hear the delighted squeals of Wyatt as he raced the waves over and over and over again…to hear our kids ask to push their beds together so they could sleep side by side…to watch them just ENJOY life, was the biggest gift we could be given.

I think one of my favorite things of the week, though, was hearing about the teenagers. As horrible as it is to watch your 2 year old battle cancer, there are a lot of things we don’t have to deal with…we didn’t have to think about school and friends…we didn’t have to watch her grieve relationships lost, friendships turned away, school days lost. The toll that a cancer battle takes on a school aged child is so very hard…yet the summer staff (the majority of who are young college students), grab these teenagers from the FIRST night, and they are included in everything. So, after months of isolation, months of heartbreak, months of loneliness, they are included, they are loved (TRULY loved), they are seen, they are known, they are appreciated. Hearing the stories at the end of the week, from these parents, had tears rolling down my cheeks.

I could go on for so much longer, but I’ll wrap it up here. If you are a cancer family, PLEASE check out Lighthouse!! They have retreats in North Carolina and Florida, all summer long, and it will change your life. We hope to go again this summer! 

Ok, I’m going to tie this up quickly…but I do want to touch on Family Partners before I’m done!!

FAMILY PARTNERS

So, if you are not a cancer family, and you are reading this, you could be asking how you can help or get involved. Yay! I’m glad you’re asking. 🙂 The biggest thing you could do is become a Family Partner. This is huge on so many levels! First off, Family Partners raise support for their trip, just like you would for a missions trip outside of the country. This IS a mission’s trip, and an incredible one. The support these families raise, helps all of the retreat families attend at no cost. We paid for gas on the way down, and that was it, the entire week! This isn’t something we take lightly, but also an incredible gift for families facing many hefty medical bills year in and year out. 

Family Partners are assigned a family to serve for the week, and you get to know your family very well. Some Family Partners do it as a family (it’s such a blessing seeing young kids serve others), others do it as a couple, some do it as a parent and child, it doesn’t matter…if you have a heart to love on and serve hurting families, this is an incredible opportunity! Retreat families come from all over the country (we were the only Virginia family at our retreat), and so do Family Partners. Another cool thing? Some Family Partners are past retreat families! We seriously cannot WAIT to return with our kids (in a few years, when Cole is old enough to help), and serve and love on other families in the midst of their storm. 

And you can ask any Family Partner, and I think they would all tell you the same thing: this is a life-changing week. They go into the week thinking they are serving and helping change the lives of a family battling cancer, but they are the ones who walk away changed. <3

And lastly, if you can’t attend a retreat as a Family Partner, you can help support Family Partners and Lighthouse in and of itself. If you’re interested in details, I’m happy to share. 

Ok, I’m still not done, but I’m close. One last little thing. Richmond friends!! You don’t have to attend Lighthouse Retreat to get involved! Did you know there is a Lighthouse group right here in Richmond? Our dear friends, the Moore’s, started a Lighthouse group at our church, to bring the mission of Lighthouse to Richmond. They didn’t want the serving of pediatric cancer families to happen only over the summer, they wanted to serve families right here in central Virginia, year round. You don’t have to be a member of our church to get involved! If you have a heart or desire to serve families battling pediatric cancer right here in your backyard, please let me know, and I will get you in touch with the Moore’s! 

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Thank you so much for sharing about your week at Lighthouse! What a great description of every aspect of the week!! So thrilled it was such a good week for you and truly appreciate you sharing it with everyone else!!! Applications will open up on Monday, December 2nd at 7 am for our Retreat Families. We only accept a couple returning families on each retreat and those spots fill up quick! Would love to have you come back again! Let me know if you have any questions!! Julie

Finally reading this!! So so thankful, you guys stepped our in trust of what the Lord has in store! So beautiful to hear all about the week in more detail!