Category Archives: Faith & Hope

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?

Christmas 2022

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

It’s hard to believe this is our 9th Christmas with Gideon. After his diagnosis, I never thought we’d get one Christmas with him; but here we are celebrating the birth of Christ for the ninth time with our little man!

I’m not gonna lie. This Christmas was rough. Kevin and I were up till 1:30 am getting all the things ready. Like usual, we waited until the last minute to assemble ride toys & electronics. But it’s never been that big of a deal…. until this year. Unfortunately for Kevin, Nya’s ride toy might as well have come from IKEA. Kevin spent hours building that thing from the ground up. Meanwhile, the new electronics proved my age and left me feeling uneducated.

Why do we do this to ourselves?

We laughed while saying all these things should come with a disclaimer on the box that says, “Estimated assembly time- several hours.. Do not attempt on Christmas Eve!”

We were asleep for just over an hour when Gideon woke up with a dirty diaper. Did he go back to sleep? Nope. Not until 6:30 am. The word exhausted doesn’t even begin to describe us at this point.

Of course our other children were up around 8 am. Praise God for Laynie! She made the littles Christmas pancakes (red and green with whipped cream and sprinkles), giving us an additional hour of sleep. God knew we needed her first in the birth order! Could you imagine if Josiah was our oldest!? Lol.

Christmas 2022 was the first Christmas we opened presents without Gideon present. He slept till noon and we felt bad making the other kids wait for him. Plus, he still doesn’t grasp the concept of opening a gift. He hates the feeling of paper and would much rather just be held. So it worked out.

Nevertheless, guilt (and fear) hit me hard as I watched my babies open their gifts while Gideon slept in. It was a visual reminder of what Christmas will look like one day, when Gideon is gone. It’s not a thought that enters my mind as much anymore because Gideon continues to defy the odds. But every now and then, especially when deprived of sleep, my mind goes there and I have to remind myself of the promises of our God.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light & momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen but what is unseen, since what is seen is temporary but what is unseen is eternal.” 2 Corinthians 4:16-18

“You keep him in perfect peace whose mind is stayed on you because he trusts you.” Isaiah 26:3

“For this world is not our permanent home; we are looking forward to a home yet to come.” Hebrews 13:14

The truth is that none of us are promised tomorrow. Even though I may think Gideon’s life is shorter than most, any one of my children could be called home first. It’s why we love big every day. It’s why we seek reconciliation and forgiveness quickly. It’s why we make the most of Jesus as well as every single moment we have, whether it’s a holiday or not.

Jesus is the reason for the hope that we have.

Lord, teach us to number our days that we may gain a heart of wisdom. -Psalm 90:12