The Trike Project

Toby's Trike 16"There’s no question, my six year old nephew is stubborn. Everything happens in Toby time and God forbid any one of us should rush him along. One of his favorite things to do is ride around on his trike. He has enjoyed ride-on toys since he could walk and it’s not unusual for him to come home with bleeding feet after a day riding around the block. You see, he often rides barefoot and refuses to use pedals.

As I mentioned, he is six years old and growing. Most trikes and ride on toys aren’t designed for kids his age. Six-year-old’s are on bicycles with or without training wheels. But Toby isn’t most kids. Training wheels don’t sit level with the ground so the bike teeters and that slight motion is too much for Toby’s comfort level. Since he doesn’t like to pedal, the crank on a bike just gets in his way. Even the pedals of his trike, which are mounted on the front wheel, bruise his legs as they spin. He prefers the “Flintstone” style of using his feet to push off the ground. He wants a trike, so how do I get him a trike big enough?

I scoured the internet figuring if something exists, it’s out there. Mostly, I came away with disappointment. There are a few trikes manufactured for adults which are expensive. There are a few companies that make trikes for disabled or developmentally delayed or impaired children but again the cost is prohibitive.

In searching online for a trike, I did come across numerous conversion kits. Apparently converting a standard bike into a trike is a thing people do. Again these kits cost more than I wanted to spend. After all, he will only be riding this thing for a summer or two before he grows out of it.

What I needed was a three wheeled ride on vehicle without pedals big enough for Toby and they don’t exist. I was going to have to make one.

I started with a basic kid’s bike. My sister had two of them that were the same size, one of which (a Barbie themed bike) wasn’t being used anymore. The other was Toby’s older brother Jackson’s Cars themed bike (Auntie has to get him a new bike for his birthday now). Between those two bikes, I had the wheels and a good frame. I just needed to figure out how to attach two wheels to the rear of the frame.

20190610_154147Eventually I figured all I really needed was a long axle rod that I could put two wheels on. Amazon was the only place I could find the right size threaded rod (3/8” rod with 24 threads per inch). After getting a few nuts from the hardware store, I was ready to go!

I started by stripping everything off the frame of the Cars bike. I took the wheels off, the crank, and the chain. I attached the 2 foot threaded rod to the frame where the original rear tire went and secured it with nuts and lock washers.

20190610_154131I had to study how rear wheels worked on children’s bikes. They have what is called a coaster brake in the hub assembly. When the rider attempts to pedal backwards the rear wheel stops, acting as a brake. This means there are extra parts in the hub assembly I had to account for when putting the wheel on the new axle. While front wheels are super simple, the axle rod they spin on is smaller than the rear wheel axle. I figured that out pretty quickly when I tried to put the Barbie front wheel on the rear axle of the Cars trike.

I took the rear wheel from the Barbie bike and painted it black so it better matched the two wheels from the Cars bike. I was able to attach both rear wheels to the new axle (I re-greased all the bearings for good measure). To my delight, it worked! The wheels spun freely and the new trike appeared stable!

20190610_155421So I get the new trike over to Toby and…it’s TOO BIG! The bikes my sister had were 16” (wheel diameter) and Toby is just a little too short. Even with the seat lowered all the way, his feet didn’t quite touch the ground.

I was a bit disappointed but I had my prototype and proof of concept. I’m now in the process of doing it all again, this time with 12” bikes.

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The Choice in CHD

I follow a number of different social media pages dedicated to children with various heart defects. I offer prayers and words of encouragement when appropriate and my heart breaks when a Heart Warrior loses their battle with CHD.

Recently I came across a blog post from a heart mom who offered advice to another woman whose unborn child was diagnosed with HLHS (Hypoplastic Left Heart Syndrome); it’s the same defect my nephew Toby has. The woman was contemplating termination and sought perspective from parents of other Heart Warriors. As I read the post further I was saddened to learn she chose termination over battling CHD and while I don’t agree with her decision I can certainly understand it. The life with HLHS is full of uncertainty and heartache, doctors and hospital stays, and constant fear the other proverbial shoe will drop.

The principle question asked when receiving a diagnosis like this is “why me” or “why us” but I think that question is vanity. I believe children like Toby and his heart buddies are going to be born regardless so a better question to ask is “why not me”. While some view children born with challenges as a burden, I’ve come to see them as a privilege, a special gift. Living with and caring for those with special needs is not easy, and while I would never choose a life with CHD for anyone, I would choose Toby every time, even knowing he has a broken heart.

I was there the day Toby was born, I heard his first cry. I was there after his first open heart surgery at five days old, I saw his heart beating through the yellow bandage; the only thing covering is open chest. I was there when he was packed up and finally sent home a month after he was born. I cared for him between his surgeries, fed him, administered his medications, went with my sister to his numerous appointments. I sat with him as he went through morphine withdrawals after his second open heart surgery. I did my best to comfort him as nurses poked him for IV access, suctioned his nose, and pulled out his chest tubes.

I also watched as he learned to scoot across the floor on his bum. I was there as he took his first steps. I get to see his eyes light up when he gets a new Lego set. I get to hear his giggles when he’s tossed around in the air by his uncle. I get to see the joy in him when he dumps a tub of Hot Wheels and begins to arrange them in a line. My heart swells when I hear him say words and use them correctly. While every kid may do these things, watching Toby do them, knowing what he’s had to overcome, is extraordinary.

Yes there is heartache and uncertainty but there is also overwhelming joy. There is life and there is hope living with a broken heart. From the beginning I never saw a broken kid, I only saw Toby. This boy has every reason to be angry yet he smiles. He can light up a room simply by walking into it. I wouldn’t want to live in a world where Toby didn’t. I am better for knowing him and I am grateful my sister chose Toby.

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