Category Archives: Special needs children

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!

Why We Homeschool

Faith & Hope, Homeschool, Special needs children

This will be my 9th year homeschooling these beautiful souls. It’s crazy how time flies by. When people ask me why we homeschool our children, my answer is different today than it was when we began all those years ago.

What led us here

In January of 2013, our son Gideon was born. From the minute he arrived, every doctor suggested something was wrong with him, but no one knew what that “something” was. All his little oddities didn’t add up to a known diagnosis.

Fast forward to August of 2013, Gideon’s neurologist did a blood test that gave us the answers we did not want to hear- peroxisomal biogenesis disorder. The geneticist was the one who broke the news. She told us that Gideon would not live to see his first birthday and then she sent us home with hospice care.

To say we were devastated would be an understatement. Even without a diagnosis, we already knew that our little boy was going to have some challenges. He was not typically developing, his hearing loss was getting worse, his eyes weren’t right… but at that time he didn’t have any major issues. He was eating by mouth, breathing fine, no seizures… and still they sent us home with hospice care.

No one knows for sure

Gideon’s hospice was short lived. After 3 months, the hospice nurse told us that Gideon was too healthy for hospice. Something I already knew. During those months, I met woman whose son, Sam, had a peroxisomal disorder. He was 11 years old! I was hopeful as she connected me with The Global Foundation for Peroxisomal Disorders. It was the avenue that led me to more families like ours.

Unfortunately, I quickly learned how different life could look for our family. No one could say for sure how long we would have our son Gideon. Children with peroxisomal disorders die for SO many different reasons; therefore it’s hard to give a life expectancy. Most parents were told what we were finally told after hospice ended- the average life expectancy for our child is 2 to 20 years.

Living intentionally

As we celebrated Gideon’s 1st birthday in 2014, I realized how precious this milestone was for our family. With each passing day, I knew I wanted to make the most of the time I had; not only with him, but also with our oldest Laynie. I wanted them to have as much time together as possible.

So I approached Kevin about homeschooling Laynie. Like most husbands, he was not too excited about that idea. He was still a teacher in the public education system and I had left teaching in 2012 to stay home with Laynie. He told me he would pray about it and even attend a homeschooling conference with me. So in the summer of 2014 we attended the Texas Homeschool Coalition Conference.

It was eye opening. The people we met were all so… normal. I’m not sure what I was expecting, but I clearly had some preconceived notions about people who were homeschooling their children. We attended several break out sessions, visited every vender booth and talked to any parent who would give us their time. I finally purchased a curriculum called My Father’s World and we never looked back.

So here we are

As I reflect back on that first conference, I remember the reason why we began this journey in the first place. I just wanted Laynie to know her little brother well before he died.

Now that we are 9 years in (plus two additional kids), the reason why we homeschool is different. We don’t do it for fear that we will one day bury our son. We do it because we love it!

Homeschooling has given us the freedom to come and go as we please. When my children struggle with a concept, we don’t have to move on quickly because of time constraints. They sleep in and have extra time to pursue what their hearts desire. If our curriculum doesn’t work, we find a new one that does! The real life experiences they get are endless & our classroom is not bound by four walls!

There are many reasons why we love homeschooling; but our favorite is that we are teaching them God’s word. And that doesn’t just happen during Bible time. It’s ongoing throughout our day. The opportunities to apply what we learn from scripture are innumerable.

Deuteronomy 6:6-7 says “And these words that I command you today shall be on your heart. You shall teach them diligently to your children, and shall talk of them when you sit in your house, and when you walk by the way, and when you lie down, and when you rise.”

Homeschooling allows us to do this to the fullest! And as we head into this 9th year, I’m grateful that we get to do this at all. When we started this journey we were a special needs family of four on a teacher’s salary. The numbers didn’t make sense then, but God provided. I still struggle with insecurity & patience, but God is continually faithful.

If you homeschool, what is your WHY?

Getting Ready for Family Retreat

Joni and Friends, Special needs children, ,

I am so excited because our favorite time of year is almost here!! We are just a 6 weeks away from going to our annual Joni & Friends Family Retreat! If you know us, then you know this is Christmas in July for our family.

This place is our little slice of Heaven on Earth. For 5 days, these sweet STMs (Short Term Missionaries, aka- volunteers) love on our kiddos from 9-3 each day so moms and dads can have some much needed respite. We are free to engage in planned activities such as skeet shooting, horseback riding, swimming, etc.. OR we can just go back our rooms and nap!

What is so unique about Joni & Friends Family Retreat is that they have STMs for kids like Gideon. I know that Gideon will be cared for and loved well by the sweetest person on the planet- Sophie. She’s been his STM for the past 6 years now. Outside of family, I don’t know anyone that loves Gideon like she does. The relationship they’ve developed is a special one for sure. Meanwhile our other kiddos get to do fun activities with other kids who understand what it’s like to live the life they do. There’s a unique bond among friends who “get it.”

So the reason I share all this is because there’s been a new development in our family retreat plan this year. My 13 year old daughter decided that she doesn’t want to be served at camp this year. Instead she’s decided she wants to serve others. 💜😭

So this means she will be going as a volunteer (STM) so she can make a difference in the lives of others. And if that’s not cool enough my niece Addison is going to join her as an STM too!!! 💜😭 I’m just overwhelmed that these girls want to serve in this capacity because it’s not easy. But ask any STM, and they’ll tell you it’s worth it.

So here’s the last part of my post. This year Laynie and Addison decided they wanted to raise the money for their ticket to camp. So that’s what I want to help them do. Each person that goes to camp pays $475. Whether you’re going to family retreat as a camper or an STM, everyone pays the same amount. So below I have some links- one for Laynie and one for Addison. If you’d like to pray for them or make a donation on their behalf, we’d be extremely grateful either way!!

http://form.joniandfriends.org/goto/LaynieJolicoeur

http://form.joniandfriends.org/goto/AddisonJolicoeur

***Update- After 2020 we stopped doing public fundraising for our whole family to go to camp. Just felt weird given hard times. However, a sweet friend encouraged me to post it anyways. So here’s the link to our family fundraising page.

http://form.joniandfriends.org/goto/JolicoeurFamily