I recently realized that many people were reading through some of my older posts, particularly the one called FAQs about Gideon. So, I decided to update these questions and add a few new ones we’ve received now that Gideon has made it to 5 years old!!

1) What is Peroxisomal Biogenesis Disorder (PBD)?
It’s a rare, terminal genetic disorder that basically affects every cell in the body, specifically the peroxisomes within the cells. Peroxisomes are supposed to oxidize long chain fatty acids and in Gideon’s case, they don’t do their job efficiently which causes a host of problems: low muscle tone, developmental delay, blindness, deafness, seizures, adrenal insufficiency, liver problems… just to a name a few. Click Here to learn more.

2) How long will he live?
Once Gideon made it to a year old, we were told that his life span could range anywhere from 2-20 years. (Although when he was originally diagnosed at 7 months old, we were told he wouldn’t live to see his 1st birthday.) PBD affects each kid differently, so it’s difficult to say how long each one will live before their bodies begin to shut down.

3) How much can Gideon see and hear?
As of his last ABR (which was back in 2015), his hearing loss was severe in his left ear and profound in his right ear. He hears low tones best- probably the reason why he loves his daddy’s voice. Extremely loud sounds like trains, motorcycles, etc. make him laugh even if he’s not wearing his hearing aids. As for his sight, no doctor has ever been able to tell us anything more than “Gideon is legally blind with light perception.” They gave him a diagnosis of Cortical Visual Impairment (CVI) which means his vision is impaired due to a brain problem, not an eye problem. So, while Gideon does not reach for objects in front of him, because he has light perception, he will reach towards a lighted object when it is presented (especially in a dark room).

4) Do the hearing aids help?
Now that his hearing loss is considered profound, we were told they don’t help much but that they do give him a sense of “sound awareness”…whatever that means. Gideon still takes them out from time to time, so in some videos that we post to our YouTube channel, you’ll see he is not wearing the hearing aids. That’s probably a good indication that he was done with them for the moment.

5) Will he ever walk?
I’m not sure that Gideon will ever walk on his own just because he doesn’t have the muscle tone or the visual desire to do so. That being said, with his new gait trainer, he’s been doing a lot of stepping around the house with the support of that piece of equipment. But again, he needs the guidance on where to go once he’s in it.

6) Is there a cure for PBD?
No. Every cell in his body (from head to toe) is affected. Currently no cure or treatment exists for PBD. Although thanks to the GFPD, research is now being done for our kiddos.

7) Will you and Kevin have more kids?
We already have and we are always open to having more. We catch a lot crap for this and here’s why… After Gideon’s diagnosis, we learned that Kevin and I are both carriers of a mutated recessive gene. That means we have a 1 in 4 chance of having another child like Gideon with each pregnancy. And we get lots of hate for this, but thankfully we don’t have to give an account for our actions to anyone but God. So we let the haters hate.😉

8) How do your other children handle all this?
Our other kids are awesome. They don’t know life any other way. They treat Gideon like a normal sibling. Laynie is always very tender and Josiah…he can be a bit rough with Gideon. Laynie knows Gideon will go home to be with Jesus before the rest of us. Josiah is currently too little to understand that but we will tell him just like we told Laynie. Their brother Gideon is different, yet he’s normal to them.

I think they handle Gideon’s situation so well, because we make special time for each of our children. They each get individual time with both Kevin and I together. We also make an effort for us both to have one on one time alone with each of our kids. I grew up with a sibling who was disabled and my parents modeled, very well, the importance of taking time for me so that I wasn’t put on the ‘back burner’ so to speak.

8) Did you know about Gideon’s condition when you were pregnant?
No. I opted out for all prenatal testing. I had a healthy pregnancy with Laynie, so I saw no need to test when we were expecting Gideon. When he was finally diagnosed at 7 months, we were told prenatal genetic testing would not have done us any good because his disorder is so rare that a more specific test would have needed to be done. Then, when I got pregnant with Josiah we just didn’t care to do the testing. Knowing whether or not an unborn child was affected would not ever change the course of the pregnancy for us. We keep them all.😉

10) Are Laynie and Josiah carriers of the recessive gene?
We don’t know if they are carriers but we do know that they are not affected by PBD like their brother Gideon. They could be carriers like Kevin and I or they might not be carriers at all. This will be something that they (and their future spouses) might want to be tested for before having children of their own.

11) How should I interact/play with Gideon? Just treat him like you would any other kid- talk to him, touch him, love him. If you have facial hair you’re already on his favorites list. I always tell people to place their hand under his so he knows you’re there. Chances are, he’ll reach out and try to touch some part of you.

12) Why does he poke his eyes, put a toothbrush in his ear, & hit his head? These are all ways that Gideon is seeking sensory input since two of his sense are hindered. He loves anything that vibrates so the toothbrush is a favorite go to, because it’s small, yet powerful. As for his eyes, we were told that kids with vision impairment do this because they can “see stars” from the pressure that’s applied. As for hitting himself, most of the time I think he’s trying to communicate the desire for touch. However, sometimes, when he hits hard repeatedly, it’s his way to communicate that he’s frustrated.

12) Are you guys teaching him sign language?  We are currently working on tactile signing with Gideon. For example, when I’m about to brush his teeth, I place his real toothbrush (not the one he puts in his ear) in his hand and rub my finger over his lips a few times to let him know what’s coming. We have signs like that every time we change activities. That being said, Gideon (unfortunately) has never signed anything back to us. But we know he understands what’s coming because of his response. Going back to brushing his teeth, when I finally put the toothbrush to his lips, he opens his mouth and lets me brush.

I really enjoy answering your questions. Please don’t be afraid to ask. We don’t take offense to any questions. I think most parents (special needs or not) would rather you ask than assume.

If I missed anything in this updated FAQs about Gideon, please feel free to comment below with more questions.

Dear Gideon,

It’s hard to believe we are here. When you were born no one knew what was wrong with you. Your abnormalities didn’t add up to anything the doctors had ever seen; but it was clear that you were unique.

You were so unique that it took 7 months before someone could finally diagnose you. And when that day finally arrived, they didn’t give you much time. Your projected life expectancy was less than one year.

But here we are.

Today you are 5 years old.

Everything about your life has been unexpected. Your life has brought about a range of emotions that I never knew existed. I’ve experienced some of the highest of highs and the lowest of lows with you as my son. I spent the first 9 months of your life burying all the dreams that a mother has for her son, only to turn around and realize that my dreams for you were small and insignificant when I saw what the Lord was doing with your life. You impact people in a way that we never could have imagined.

There are some who have told us through various outlets that you shouldn’t be here. That because you can’t see or hear, your life is a waste. All because you will never experience all that life has to offer. But your dad and I know that that couldn’t be farther from the truth. You have more joy in your whole being than most of us will ever experience in an entire lifetime…even with all 5 of our senses.

You show the world a new way to experience life. B.J. Neblett wrote that, we are the sum total of our experiences. When people experience you, whether in person or through social media, they are not the same. People are better for having known you. And I’m not just mom bragging on you. People tell us this all the time.

We choose to believe that you, Gideon, were created to better the rest of us. To gift us a new experience lest we wallow in self-pity and selfishness. We need to be confronted daily with the realization that joy doesn’t come from what we have or what we don’t have. Rather our joy is in the Lord and the hope that we have in Him.

We know your life has great purpose and we find great joy and great responsibility in being your parents.

Happy 5th Birthday Gideon!

Love,

Mom, Dad, Laynie & Josiah

Today I took Gideon to Children’s for his annual ophthalmology check-up. There were no handicap parking spots, but I wasn’t surprised. An open handicap spot there is harder to come by than a Hatchimal at Christmas.  So I improvised. I found a parking spot near a grassy area and let the ramp down. Clearly I didn’t look closely enough at the “grass” and the ramp ended up in some mud.

Before we even left for this appointment, the morning had been hectic. Plus Josiah was up three times last night so, needless to say, this little inconvenience of mud was the final straw. Cussing under my breath, I got Gideon down the ramp, through the mud and into the building. As I was having a mini pity party for myself on the way up, I ran into all kinds of families who were much worse off than we are.

The appointment went well and we headed out of Children’s. I was already feeling a bit guilty for how childish my attitude was when I noticed all those handicap spots were starting to clear out. When I got to my van (one row back from the handicap spots), I watched as those families were loading up their kiddos. And guess what I witnessed? Only one of out five of the people I watched getting into their vehicles had a wheelchair ramp… and that one vehicle had to be 15 years old. The other four families were lifting their children into their cars and vans and then breaking down their children’s chairs lifting those in the back of their vehicles. Talk about a punch in the gut for me… I remember those days.

Those closest to me know that I make it super easy for the Lord to teach me humility. Here I am whining about some mud on my ramp and I know for a fact these people would give anything for a vehicle with a ramp like mine. Mud would have been the least of their worries! Now don’t get me wrong, I think we need to cut ourselves some slack once in a while when we’re having a bad day. There’s grace for that. But in light of watching these other families today, this was not a bad day for me. Today I got a lesson in humility.

My problem is that I often get caught up in believing the lie that this life is about me- my wants, my needs, my schedule, my day, etc.  And the truth is, it’s not about me. It never has been. Some of the happiest people I’ve ever met are so much worse off, but they’ve got this humility thing figured out. Their lives model Philippians 2:3-4 which says, “Do nothing from selfish ambition or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others.” 

One of my favorite quotes from C.S. Lewis is “Humility is not thinking less of yourself, but thinking of yourself less.”  That’s hard for this caregiver. You see as a caregiver, I always think that because I’m taking care of another individual 24/7 that I am thinking of myself less. But if I’m honest, I get frustrated with Gideon if he takes too long to eat or if I have to change his diaper more than once in 30 minutes. Why? Because it’s an inconvenience to….wait for it….ME!

I don’t like it when life interrupts my expectations of how the day/week/month/year was supposed go. Again, it all comes back to me.

Before I shut this rambling post down, I should probably go ahead and admit that my bad attitude didn’t start today. I’ve struggled to live out my “life with a happy heart” motto, since this past June. The truth is, Gideon is declining physically. We’ve noticed he’s been losing skills that he had been steadily gaining from ages 3 to 4. He no longer sits up on his own nor does he pull to stand on the couch. I could go on, but you get the idea. Gideon’s condition is such that we were expecting this.

However, what has not declined is his health. Our joke is that Gideon is the healthiest, terminal kid you’ll ever meet. He was hospitalized once in 2014 (because his platelets were so low they thought he had cancer) and he’s been to the ER twice in his whole life for dehydration. THAT’s pretty amazing for a kid with a Peroxisomal Disorder. So while his loss of skills is a sad and ugly part of PBD, we are hopeful that we are not near the end of his life because all of his blood work and other tests look good for a kid like G.

So all that said, I don’t want to wallow in self pity over stupid crap like not finding a handicap parking spot, or letting my “fancy” ramp down in some mud. These are not the moments that warrant a pity party. There are bigger issues to face. There are other people out there who are struggling with more than we could ever imagine. And those people need encouragement and hope for their future.

Looking back over this day, I missed three obvious opportunities to be light in someone else’s day. All because I chose to give into the selfishness of my circumstances.  Thankfully tomorrow’s a new day.

Lord help me to choose joy in spite of my circumstances.

I have so much to be joyful for.