Our daily encounters don’t happen by chance. This may sound cliché, but there is a reason for your circumstances and the people you meet because of them. The people who cross our paths were meant to do so. I am of the mindset that there is a specific purpose or lesson for each encounter- whether we realize it or not.

My path recently came alongside a woman named Shannon. What is interesting about Shannon is that she lives more than 600 miles away, in a state that I had never been too. However, thanks to social media, I would now call her one of my new best friends. Although I think she would agree with me when I say, I wish we could have met under different circumstances. 

When her son’s aide sent her my first blog post, she quickly realized that she and I had something big in common… Our boys both have a Peroxisomal Biogenesis Disorder (PBD). She also realized that Kevin and I probably did not know anyone else who was going through this… and boy was she right.

Shannon is probably one of the coolest people I have ever met. She is president of the Global Foundation for Peroxisomal Disorders (GFPD). She started this foundation for many reasons, but the main reason is because she has a son named Sam who was born with a PBD. And if I’m being honest, meeting them is the real reason we recently visited Omaha.

Meeting her son, Sam, was the highlight of our trip. It brings me an incredible amount of joy to tell you that Sam is now 11 years old! When we first found out about Gideon’s diagnosis, we were under the impression that not many of these children diagnosed with PBD live to see their first birthday. And while that’s true for the most severe cases, there are others who make it to school age.

Sam is a handsome boy who has been through so much. As if having a PBD was not bad enough, Sam also had a fight with cancer around age seven. After that, Sam has required the use of a wheelchair and because of PBD, Sam has a cochlear implant. It was very heartwarming to watch Sam laugh upon hearing Gideon babble and squeal. It’s interesting how their laughs sound exactly the same. Sam loves mac and cheese and his older sister Taylor (who, like Laynie, is unaffected). And although Sam does not speak now, his eyes and smile would melt your heart.

Shannon was able to answer more of our questions than all the doctors we have seen in the past 8 months combined! She showed me pictures of Sam walking and swimming before his cancer; and in doing so, she gave me a new gift of hope for Gideon. I honestly thought my little boy would not live past a year, and now someone has shown me there is hope that he will not only live past a year; but that he will probably be able to walk, learn, and even swim someday!

And Sam is not the only PBD case that is encouraging. There are many other children living with this awful disorder. It’s heartbreaking to think that PBD claims their lives so young, yet I am amazed by what some of these children are able to accomplish in the short time they are given.

As we were driving home from our visit to Nebraska, I thought a lot about Sam and his family. If not for our circumstances with PBD, our meeting with them would never have taken place. This dreadful disorder has led us to a delightful encounter with this dear family. Hearing their story was encouraging and it gave us a refreshing optimism regarding our own situation. I’m encouraged because there’s hope that my little boy will live longer and do more than I once thought.

Thank you Shannon, Rich, Taylor and Sam. Thank you for showing us that life is still beautiful even when times are tough. We are beyond grateful that we have encountered your family even though it was our unfortunate circumstances that brought us together.

I can’t help but wonder just how many lives our boys are changing as they have encounters of their own.

Gideon had an appointment yesterday morning at Children’s Hospital in Omaha, Nebraska. It was an appointment that we have been anticipating for quite sometime. So why drive 11 hours to see yet another doctor? I’m glad you asked.

The appointment was with Dr. Rizzo who is a specialist for inherited metabolic diseases. Basically he’s one of the most knowledgable people in the United States regarding my son’s genetic disorder. But we didn’t visit him solely so he could evaluate Gideon and discuss his prognosis. There was another purpose for our visit.

There’s a study that will take place in a few weeks and Gideon’s genetic mutation qualifies him to be a part of it. Betaine is a drug (predominately an amino acid) that is used in another rare disease called homocystinuria. (Don’t ask me about that one…I’m doing good just to keep up with Peroxisomal Biogenesis Disorders, or PBDs.) When tested in the lab, Betaine has been shown to help the functionality of the cells’ peroxisomes. Hence the reason they want to try it on kids with PBDs. Am I speaking Greek?.. Let me back up and give you the cliff notes version about Gideon’s disorder..

Every cell in the body has these little things called peroxisomes. Peroxisomes oxidize long chain fatty acids so they don’t build up. Children born with PBDs have peroxisomes that don’t function like they should. And some kids have peroxisomes that perform more poorly than others (thus the reason for the mild, moderate, and severe cases). Eventually the peroxisomes can’t keep up, which means every cell (thus every major system of the body) begins to shut down slowly until death.

Hopefully that makes a little more sense. So back to the study…

Betaine helps the peroxisomes function better, but it doesn’t fix them. Meaning this is not a possible cure. Also, the doctor even said what happens in a petri dish doesn’t always translate to the human body. So basically science is the real benefactor from all this.

So what happens from here?

While in Omaha, they took blood, urine and stool samples. (By the way, Gideon didn’t even realize they were taking his blood thanks to Daddy blowing raspberries on Gideon’s cheek!) The Betaine is to be given for six months. Halfway through (3 months) and at the end of the study (6 month), samples of blood, urine, and stool will be taken. They will be checking the levels of long chain fatty acids in the blood. If the peroxisomes are functioning better, then the long chain fatty acids will have decreased as a result of the Betaine. Ultimately that would be the best case scenario from this study.

I hope that answers any questions about why we went to Omaha. We are so thankful we went and while Dr. Rizzo was and is amazing, I think we learned more about Gideon’s situation from an 11-year-old PBD boy named Sam…

Stayed tuned to hear more about our visit with Sam and his family!!

We had an amazing time visiting my family in Kansas. Laynie & Gideon got to meet their newest cousin Brooke! It was such a sweet time, so naturally I was a little sad when we left my cousin’s house early this morning. But we have another destination to reach..

There is a small stretch of highway from Kansas to Nebraska that is beautiful. There is literally nothing but valleys and hills as far as the eye can see- truly untouched by man. We had just come to the top of a hill and as we looked down, the valley below had a long, winding road that disappeared from sight. However if you looked way off in the distance, you could see where the road would continue to the top of the next hill.

I’ve bragged on my husband many times because, to put it plainly, he’s awesome. But as we silently drove through this beautiful scenery, he amazed me yet again with his conversation starter. He pointed out the landscape to me as he questioned, “How easy would it be to go through life’s valleys if we could just see the top of the next hill?” As I listened to my profoundly wise spouse, I fixed my eyes on that next hill and thought about how right he was…and with a smile on my face I replied, “I guess that’s where faith comes in.”

As we drive to Omaha we are praying. Not just for safe travels, but for God to increase our faith (Luke 17:5). You see, there are decisions that need to be made regarding our son Gideon. He’s been accepted to be a part of a research project in Omaha and we are going to meet the doctor who is leading the study. The details are insignificant right now because I’m honestly not educated enough at this point to adequately share details. All we really know is that it’s a drug study and it is not a cure. After we meet with this doctor I will be able to share more about what it all entails and whether or not Gideon will be participating.

But the drive through these valleys to get to our destination has been tough. If you’ve taken a road trip with children (especially young children) then you know what I’m talking about. Every few minutes Gideon cries and Laynie asks, “Are we there yet?” They can’t possibly comprehend that our destination is close, though to them, it seems so far.

As my husband and I were talking about the valleys of life and our faith, I wondered if God thinks I sound a lot like my children. How many times have I come before The Lord with tears and cried, “Are we there yet? Is my time in this valley almost over?? I can’t see the final destination!!”

Unfortunately there are just times when we can’t see top of the next hill. That’s where our faith in God comes in. We have to trust that HE is the one in the drivers seat. He knows where we are and He can see the destination even though we cannot. That’s why 2 Corinthians 5:7 says “For we live by faith, not by sight.” And Hebrews 11:1 says “Now faith is confidence in what we hope for and assurance about what we do not see.” And while the valley may be a dark & difficult journey, we know we are not traveling alone. (Matthew 28:20)

I’m not sure what highway you’re on during this season of your life. Maybe you’re like us and you find yourself in a valley with big decisions to make. Have you let God take the drivers seat? Maybe you have, but you’re like me and you’re a terrible side seat driver (Kevin just silently “Amen-ed” that). Would you let God navigate? He doesn’t need you to read the map…He laid the foundations of the earth (Job 38:4). So we can be confident that “He’s got this.”

Omaha is close for us. Its not our final destination, just our destination for today. So please pray for us today and tomorrow as we make some big decisions for our little guy. No matter what we decide we are confident that God knows the final outcome and He has the final say.

Wednesday our final destination will be home. And for that I’m glad. Trips are great, but home is best. As I look forward to being home, I can’t help but think, shouldn’t our final destination always be Home?

Lord, carry us through these valleys and increase our faith! Set eternity on our hearts (Eccl 3:11) and never let us forget You are coming again. (Rev 22:12) Home with You has always been our final destination. Amen.