Category Archives: Special needs children

A Lesson in Humility and Gideon’s Decline

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.

 

Blind, Deaf & Windows Down Again: He’s my son

So I keep a You Tube page for our family videos. It started a little over a year ago. I had just gone to speak to a class at East Field College about Gideon and one of the girls asked me if I had a You Tube channel. At the time I did not. But the kids convinced me it was the cool thing to do, so I went with it. Coincidentally, it’s also called Life with a Happy Heart.

Recently one of our videos titled Blind, Deaf & Windows Down…Again caught some attention. People shared it and in some cases, they wrote articles about it. I wouldn’t say that it went viral but it definitely made its way around the world. (On the site Imgur, our video almost hit a million views.) In fact, we even had several companies reach out, with the hopes of licensing it.

Maybe you’ve seen it? That cutie right there… he’s my son.

Unfortunately, the people who wrote about it on Yahoo News, Metro News, Mirror News, Reddit, and other sites, never actually contacted us. Rather than reach out to us for direct quotes, they took parts of our ReEngage testimony and pieced together something that fit their narrative. Some were okay, but most, without the context of the entire testimony, made us sound pompous. This led to an out pour of comments condemning my family, our decisions and saddest of all, demeaning the very life of our special needs son Gideon.

This will be my only response to those kind of comments.

It takes much more thought and consideration to build others up than to tear them down. When you know that you’re going to bury your child, the thoughts and negative comments of others, really don’t matter. We chose an attitude of gratitude a long time ago because we knew this would be a rough road that not many others will ever face or understand. If people want to rudely state their opinions or beliefs, they are entitled to do so. But know this, their opinion holds NO weight because we are not accountable to any of them. So we hope that our videos, posts and blogs bring joy and encourage others that they too can choose to live life with a happy heart in spite of their circumstances.

Moving on…

I love that for a brief moment someone like Gideon caught the attention of people around the world. Bringing awareness to rare diseases, like Peroxisomal Biogenesis Disorder is so important to families like ours. So much research and funding goes to the more common disorders, leaving families like ours without much hope in fields of science and technology.

I would love for some famous actor or wealthy benefactor to see Gideon’s video and think, “I want to support and bring awareness to PBD!” And while Gideon may not be the one to do that, hopefully some child, someday will.

Until then, we’ll keep posting his sweet face and infectious laugh. Because let’s face it, we could all use a daily dose of Gideon’s joy.

Thanks for reading, watching, following…and sharing!!

Pause for PBD 2016

pause-for-pbd-2016s

So tomorrow is Pause for PBD 2016. PBD stands for Peroxisomal Biogenesis Disorder; it’s a rare disease for which there is no cure. So in honor of Gideon and all his fellow PBD brothers and sisters, we are asking for your help to raise awareness.

Here’s what you can do: 

gfpd-image
Photo credit: The GFPD

I would love it if you would pause and pray for Gideon and for all those affected by PBD. It would be greatly appreciated if you would share Gideon’s Pause for PBD photo (above) on your social media sites or feel free to use it as your profile photo on October 5th. Be sure to use the hashtag, #PauseforPBD.

Finally, please take a moment and go to the GFPD’s Facebook Page and check out all the precious faces affected by this terrible disorder. They are all mighty warriors and their photos will bless you.

You can also check out the GFPD’s Website to learn more and find out other ways you can help make a difference.

Thank you for following our journey and for showing your support.

God bless.