Tag Archives: Peroxisomal Biogenesis Disorder

Counting Down the Days

Disability, Joni and Friends, Vacation, , , ,

We are roughly one month away from our annual trip to Joni and Friends Family Retreat at Camp Allen! It’s the highlight of our year and we are counting down the days until we can be reunited with families who experience life like we do.

A few weeks ago, Kevin and I had the opportunity to share our testimony of how Joni and Friends has impacted our lives and the lives of our children. I’d like to share a small portion of what we said at that J&F event in Houston.

…Being at family retreat really wrecks you in the best possible way. This summer will be our 9th camp and I already know what’s going to happen when we pull up and see the welcome parade. I’m gonna lose it…like the don’t-wear-make-up-because-I’m-about-to-ugly-cry kind of lose it. I’m going to see the Folmars, the Strouds, Becky & all the STMs…and I’m going to ball my eyes out. However, it’s interesting because when we leave after that 5th day, I don’t shed a single tear. And I have short theory about this-

Upon arrival, it hits me, just how much my parched soul has longed for a break; an oasis from the day-to-day tasks around Gideon’s care. I know that God is about to rain down manna through the hands and feet of these precious STM’s and I just feel overwhelmed with thankfulness. But when it’s time to go home, I leave with a deep-rooted sense of fullness; the kind you feel after a feast. That’s because Joni & Friends provides not only incredible food for the stomach and but healing nourishment for the weary soul.  

Several years ago, it dawned on Laynie that we only get to go to Family Retreat as long as Gideon is alive. And right then, at the age of 7, she loving told me, “I hope Gideon lives a long time so we can always go to family retreat… but if he doesn’t it’ll be okay, because we can still come back as STM’s, right mom?”

We may be partial because we are on the receiving side of what camp has to offer for now, but we believe there is not a more worthy ministry to support than J&F. All those years ago, Laynie understood the impact that she could have by volunteering at Family Retreat. Turns out, she didn’t have to wait for her little brother to go home to be with Jesus; because last summer, she attended camp as an STM, choosing to serve, rather than be served. And ever the leader that she is, she asked her cousin Addison, to volunteer alongside her.

As we drove out of camp, we asked the girls to tell us about their experience serving. Laynie led the conversation with, “I’ll never go back as just a family member. I only want to go if I can serve …and I’d like to serve all 3 weeks if possible.” Both our daughter and niece left Camp Allen with a greater understanding of what it means to be the hands and feet of Jesus. And they’ve been counting down the days until they get to go back!…

This ministry continues to change the trajectory of our entire family. When we started attending camp, it was because we just wanted a break. (And don’t get me wrong, we are still BEYOND grateful for the daily (9 am- 3 pm) respite that Kevin and I receive!) However, each year that we attend, the Lord continues to reveal that he’s doing more than just giving our family a fun and relaxing experience. He’s changing the hearts of my children.

Josiah (age 7) has already claimed that one day he will be the STM for his friend Aaron. And I have no doubt that he’ll reach that goal.

We are so thankful for the opportunities Joni and Friends have provided for our family throughout the years. The girls are eager to serve in July and I’m certain God is going to grow their faith and compassion even more.

If you’d like to support Laynie and Addison serving at Family Retreat this year, this cost is $475 per person. Below are the links for their individual fundraising pages. 100% of what is donated goes directly to their total… No fee’s are taken out.

https://secured.joniandfriends.org/AddisonJolicoeur

https://secured.joniandfriends.org/LaynieJolicoeur

Or if you’d like to write them a note of encouragement, you can address them to-

Life with a Happy Heart

PO Box 1335

Rockwall, TX 75087

Thanks for following our journey!

Also, here’s a few highlight videos from last year’s Family Retreat!

https://www.instagram.com/reel/CuV2-SuLKe5/?igsh=MTQydDFtZzdmNjUycw==

https://www.instagram.com/reel/CuYcyzsRzzO/?igsh=MWhtc2dyN2hvczRpNQ==

https://www.instagram.com/reel/Cua_SuCuFBy/?igsh=MWJyMnpqbnBrcGg4NA==

https://www.instagram.com/reel/CuduSwXtGkG/?igsh=MXJvODk3OGZxZHFkcw==

Everywhere We Go

Faith & Hope, Parenting, Special needs children, Vacation, , , ,

At the age of 7 months old, Gideon was diagnosed with a degenerative genetic condition called, Peroxisomal Biogenesis Disorder (PBD). Initially we were told he would not live to see his first birthday. Shortly after that visit with his geneticist, I began my blogging journey. By the grace of God, I met Shannon who had a son with the same condition- and her son, Sam, was 10 years old! She connected us with a PBD specialist in Omaha, Nebraska and we learned that Gideon’s life expectancy could actually be anywhere from 2-20 years.

Our son Gideon turned 11 years old this past January and we feel beyond blessed to have such a happy PBD warrior. Although he isn’t able to communicate or walk, he’s easy going and easy to please. His favorite things are his daddy’s beard, toys that vibrate, and being in the water.

Over the years we’ve made it a priority to take Gideon with us everywhere we go; however, it has come with many challenges. We’ve had to figure out how to pack for a medically fragile kid, who is basically an 11 year old infant. He does not have a g-tube, but is on a pureed diet because he was never able to chew & swallow solid foods. So we are always packing diapers, wipes, etc. and preparing his meals based on how the day unfolds. But when we pack for trips & hotels, we take much more- bed rails, medications, our Nutribullet, his Real Food Blends, as well as all the paraphernalia that goes along with preparing/packaging his blended meals. (Among many other things!)

We’ve been extremely blessed to do some fun things over the years! We’ve taken short road trips to see family out of state. We’ve attended the Joni & Friends Texas Family Retreat! We’ve gone to many waterparks and we even made it to Gulf Shores, AL (our furthest road trip to date)! However, my heart has always been a bit sad because long road trips are hard on his small, frail body; and I knew we could never take him on a plane.

Or so I thought…

In September of 2023, I was traveling with a friend to Washington and I had a divine encounter with a woman named Effie. I made a random comment that showed my inexperience with airports. I used my son Gideon as an excuse for why we don’t travel far (or much) and proceeded to tell her all the reasons why he could never get on a plane. Turns out she also has a son with rare genetic condition, and she convinced me that traveling with a medically fragile kid could, in fact, be done. She told me about TSA cares and that Gideon’s liquid diet could absolutely be taken on board the air craft even if it was over their 3 oz rule.

But of all the things she said to me, it was her last statement that haunted me in the coming months. Before parting ways, she put her hand on my shoulder and lovingly said, “Make the plans and take the trip. You’ll regret not trying.” I came home and told my husband the story. He asked if it could wait till 2024 and I obliged.

Unfortunately, in February of 2024 Gideon got super sick. So sick that he stopped eating for 7 days and was extremely dehydrated. Since you can’t treat a virus, we were treating symptoms. In desperation I called palliative care and began what I thought was going to be a repeat of 2019 when he was on hospice. But by the grace of God alone, Gideon turned a corner and began a 6 week climb back to his happy, healthy self (without a hospital stay). So I did what any rational mother would do when he got better…

I called Abby. My friend/travel agent.

And I booked the trip.

You see for 11 years, I’ve told myself that I’m not a mama who lives in fear. That’s why we take Gideon with us everywhere we go- grocery stores, restaurants, church, road trips, etc. It’s why we went on to have 2 more biological kids after Gideon. But after that divine encounter with Effie, I realized that I still have pockets of fear that I have not turned over to the Lord. 2nd Timothy 1:7 reminds us that those fears don’t come from Him.

So here’s where I’m landing the plane on this blog. We just got back from Turks and Caicos. ALL SIX OF US!

And Gideon did amazing!!! I could tell you how wonderful it was… Or you could just see for yourself! Click the link!

Happy 7th Birthday Gideon

Faith & Hope, , , , ,
These photos were taken almost exactly 7 years apart. It’s almost like he’s got a secret that he’s holding onto. Maybe he’s been laughing all along because he knows something we don’t.

Happy 7th birthday Gideon!!

You were 7 months old when the doctors told us you had less than a year to live. Then once you made it to a year, they gave you a 77% chance of living until to school age.

Somewhere along the way we realized that you will write your own story and we will love you and celebrate you every day until Jesus calls you home.

So happy 7th birthday Gideon. You’ve done more to impact others in your first 7 years of life than I could ever hope to do if given 77. ♥️

Looking forward to celebrating you today and then again in a few more days at Great Wolf Lodge!