Over the past few years, I’ve had the privilege of telling our story on different platforms, but one of my favorites takes place annually on a local college campus. On Friday I had the pleasure of talking to a group of students at Eastfield College. The class consists of high school seniors who are working on dual credits. The teacher invites me to speak to her class because her students might someday want to work with children like Gideon. So, I get to speak to them about what life looks like for families like ours; the good, the bad, and the ugly.
A handful of students from the EFC class
It’s a pretty cool experience. I’m thankful Mrs. Watlington asks me to do this, because I love raising awareness for Gideon’s condition. Plus, I also love that I can bring all my kids with me so the students can meet them. But more than that, I love the deeper message that I get to tell. Weaved throughout our story is always the message that God doesn’t waste any of the trials we face. Romans 8:28 reminds us that all things work together for the good of those who love the Lord and have been called according to his purpose.
I believe if we choose to see the good then we can use even the most difficult circumstances for good. Nothing in this life has to be wasted, not even a degenerative disability. But not everyone sees things the way we do.
Recently I was going through our filtered YouTube comments, something I don’t do often. This is because most of those comments use offensive language that I’ve blocked. So here are two of 160 comments that were “held for review” …
“Why the **** would you keep this baby and not abort/euthanize him? His life is going to be horrible, he basically doesn’t even know that he’s alive.”
“If the baby is deaf and blind, why didn’t you just abort it or kill it in a humane way after it was born? Why allow a child that can never be independent live and drain resources?”
But for every one of those comments, we see 500 positive, loving responses. And occasionally, we get some pretty cool ones like these…
“I have depression and I have tried to suicide a lot, but after seeing this video I think after all there’s hope and happiness in this world… thank you for being such a good parent, Allah bless you and your precious kid.”
“You’ve made me cry in the best way. Never have I believed in God but if he is real he made you man. I’m a father too and we all struggle but you are a true blessing to your son. Every parent should see your vids/story it’d make me them better people, Godspeed.”
The message I wanted to get across to the class at Eastfield College is this- the way we view our circumstances changes everything. For our family, our perspective is that there is hope even in the most challenging of circumstances. That is why it is important for us to share our story; because we never know who needs to hear of the hope that we have.
And as we choose joy in spite of our circumstances, we write a new chapter that leads us on a new path. New paths mean new journeys.
And with new journeys, you never know where your story will take you.
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.
