Monthly Archives: May 2017

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

Faith & Hope, Parenting, Special needs children

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!!

When your 7 year old thinks you are adopting

Faith & Hope, Parenting

I had a #momfail this week with Laynie. My explanation of something important was either not understood or not communicated clearly.  After 2 hours had gone by, this misunderstanding was corrected, but it ended with a waterfall of tears. And it had to do with adopting…

So here’s what happened.

I saw something called the Compassion Experience on Facebook. It’s a free event that allows you to experience the poverty that children face in other countries without ever getting on a plane. I thought it would be a great opportunity to teach Laynie how fortunate she is and how we could do something to help someone else.

At the end of the interactive stories, there is an opportunity to sponsor a child. In October, our church is going on a mission trip to Honduras, and so Laynie said she wanted to sponsor a girl from Honduras. We found one and Laynie was so excited. So we talked about what it would mean for our family to sponsor this child and how Laynie would be able to write to her over the course of her life. After talking with Kevin, we decided to sponsor.

That was at 11:30 am.

Fast forward about 2 hours.

We were sitting at the park having a PB&J when Laynie says, “Mom, we need to call Mimi. She needs to know that she’s getting another granddaughter soon!!”

My smile gave way to confusion. My heart sank as we talked through the sponsorship process again. Laynie thought sponsoring this little girl meant that we were adopting her too. Laynie thought we would just pick her up in October when our church goes to Honduras. It’s a horrible feeling when your 7 year old thinks you are adopting, and then realizes that you’re not.

Y’all, the tears lingered long after that conversation. My child wept. She was genuinely sad and sobbed in her room for another hour. She carried around the photo of that little girl like it was her favorite blanket.

Our church is big on adoption. In fact, Laynie has a few friends that are adopted. Plus, she told us after Josiah was born that she wanted to adopt a sister. In her words, “Adoption is the only way I’m 100% sure I’ll get a sister.”

I love her heart. We encouraged her that our family is open to adopting, but not right now. Our plate is full and our two bedroom apartment would not comfortably accommodate one more person. 😉

Anyways, if you’re considering sponsoring a child, I know a great organization. But if you already have kids, make sure they know the difference between sponsorship and adoption. Because when your 7 year old thinks you are adopting and you’re not, there could be tears.

High School Engineering Class Blesses Gideon

Faith & Hope

A few months back I received an email from a Joni & Friends employee who wanted to connect me with Lisa Wong, a teacher at Trinity Christian Academy. Mrs. Wong was looking for a family that could benefit from collaborating with her high school engineering class for their final project.

The students, who are seniors, were assigned the task of designing products that would meet the needs of someone in the community. Mrs. Wong didn’t know it when she reached out, but Kevin and I had already been talking about modifying something for our son.

Gideon loves to jump in his bouncer, but at 4 years old, he was too big for it. We had replaced the springs to adjust for his weight, and held down the base with dumbbells. Needless to say, it was not very safe, but it brought our little guy so much joy to jump. So when Mrs. Wong asked if there was something her seniors could design for Gideon, it was a no-brainer.

The students came over a couple of months ago to meet Gideon, assess his needs and brainstorm.

Since Mrs. Wong had two teams of students, she needed another project in addition to the bouncer. After talking with her seniors about possible toys, I pulled up Pinterest. I keep a board of ideas for Gideon’s future room. (I say future, because we are currently in a two bed room apartment, and I’m confident that management would NOT be pleased with all the permanent modifications I want for my son.)  Anyways, we decided a light box would benefit Gideon greatly as he loves bright lights.

Yesterday the students presented us with their completed projects.

The bouncer is secured to a trampoline which is weighted down with stacked weights. They put new springs on that are strong enough to account for his weight, but loose enough that they allow him to bounce. They also redesigned the toys on top. They include toys that vibrate and light up. And of course, they personalized it for our little man. 🙂

   

The light box is so cool! The LED lights in the box can change into 12 different colors. In addition to that, the nifty remote has settings that allow the lights to cycle through colors fast or slow on a timer. They also used a 3D printer to make the letters of his name. Since Gideon is a head banger, they used an indestructible plexi-glass as well as a soft rubber band around the edges.

 

These students really took the time to meet every need when designing these projects for our son. They truly are smart kids!  We are so incredibly grateful and feel beyond blessed to have met them and Mrs. Wong. I’m so thankful for teachers like her; who teach their students to apply what they have learned to help others.

To the seniors, thank you for all your hard work! And thank you Mrs. Wong and TCA for turning out bright and compassionate minds.

Now, if only we could keep Josiah away….

No children were harmed during this photo shoot.