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The Hassle of Keto

Monday, I offered my assessment of the financial cost of the ketogenic diet. Today, I want to explore a much bigger consideration: the hassle.

I can find olive oil in most places, but I can't go anywhere without a gram scale.

I can find olive oil in most places, but I can't go anywhere without a gram scale.

It's important to note where I'm coming from here. Collin uses a g-tube to eat, so palatability is not a huge issue for us. His diet is blended from whole foods and is dairy free, grain free, and soy free.

So, let's start off by calling it like it is: the ketogenic diet isn't easy. Here's why.

1. The food. Every meal and every snack on the ketogenic diet has to be precisely calculated and then precisely measured. There is very, very little leeway.

2. The time. All food takes time to prepare, I get that. But the calculating and the measuring involved in this diet really adds up. Then there's the matter of time windows. Meals need to be completed within a certain amount of time so that the body metabolizes the food in its proper ratio. Meals and snacks also need to be spread out over a proper amount of time to keep blood ketones level.

3. The complications. Various blood and urine levels have to be checked regularly to make sure the diet isn't having any adverse effects. You need special IV fluids when you're in the hospital. Managing illness on the ketogenic diet is one of the more complex things I've ever tackled. The list goes on.

4. The lack of flexibility. For us, there is no Hey, let's change our plans and stay out longer. If Collin's food isn't with us, we have to go home. Twice in his entire life, we have extended a trip, and then only because I had packed a gram scale and so could cobble something together without a Vitamix. 

But. But. But. 

The hassle is 100% worth it. And it's our normal. We rarely think about the hassle and, when we do, we realize that we have the far better side of this tradeoff. 

Ode to the G-Tube

Our good friends recently made the very tough decision to get a g-tube for their daughter, who is a little younger than Collin. The surgery happened this week and the recovery has been rougher than expected. Everyone in the family is getting used to a very new way of doing things.

On the day of our little friend's surgery, I sent her mom a picture of Collin the day he got his g-tube. He is three weeks old. His face is puffy from IV fluids and he's pale from the anesthesia. You can't see it in the picture, but under all of those pastel swaddling blankets there is a flexible yellowish eight inch long tube sewn into his stomach. 

I was terrified and heartbroken when I found out that Collin needed a feeding tube. It seemed like the end of something precious.

I couldn't know then that a time would come when I wouldn't give that g-tube a second thought except to find it cute. And I certainly couldn't know how many other hard things would be made easier through that one scary little hole.

Because now, I don't have to stress over the pace of Collin's feeding therapy progress. I know that every day he will get the ideal number of calories from whole foods and more than enough water to keep him well hydrated.

I don't have to worry about force feeding Collin a ketogenic diet. I know that at every meal he will get the exact ratio of fat to protein and carbohydrate he needs to control his seizures.

I don't have to worry about how to get Collin to take medicine when he is sick. I know that he gets the full dose of whatever medicine I give him.

My son is with me because of his g-tube. It allows him strength and health. With a g-tube, he can be safe and free.

The Miracle Worker

When I was a little girl, I was semi-obsessed with Helen Keller and one of my favorite movies was The Miracle Worker.

They kind of like each other. Can you tell?

They kind of like each other. Can you tell?

In the privacy of our own home, we like to make jokes about Heather being Collin's Annie Sullivan. But that comparison is more true than it is funny.

First ever field trip, courtesy of Heather.

First ever field trip, courtesy of Heather.

Because of Heather, Collin can can try new things.

Because of Heather, Collin can just be a six year-old.

Most of my pictures of Heather look like this: totally intent on Collin.

Most of my pictures of Heather look like this: totally intent on Collin.

Because of Heather, Collin makes art.

Because of Heather, Collin makes friends.

Heather makes sure Collin participates as much like the other kids as possible.

Heather makes sure Collin participates as much like the other kids as possible.

An example of the kinds of project Heather and Collin cook up.

An example of the kinds of project Heather and Collin cook up.

Heather can do a g-tube feeding, check blood ketones, and work a bipap machine, oxygen tank, or concentrator, depending on the need. She can also haul Collin's 45 pound self up the slide at the playground and figure out how to keep him on a ride-on toy at recess. 

Heather and Collin do a lot of laughing and singing and dancing together, but they also do a lot of hard work and therapy.

They love being together and they miss each other when they're apart.

Happy, happy birthday to one of the best presents this family has ever received.

No Special Needs

Collin can't talk and we're not entirely sure what he can comprehend, but he has an obvious need to be understood.

Collin can't talk and we're not entirely sure what he can comprehend, but he has an obvious need to be understood.

It's something I've been meditating on for over a year now.  In a webinar about gear designed to help children with disabilities walk, a mom tacked it on to the end of a seemingly-unrelated comment:

"But really," she said, "'special needs' is an inaccurate term. There is no such thing as a special need."

It shocked me. Was she seriously suggesting that my son - who can't walk, talk, eat, or hold things in his hand - doesn't have special needs?

That's exactly what she was saying. And I've come to believe she's right.

Because needing help to meet your needs is not the same as having needs that are special.

"Special needs" is a euphemism we use when we're uncomfortable using words like disability or syndrome or when we just don't know what to say. It seems like a safe catch-all term that will get the point across.

Here's the thing, though: people with disabilities have enough challenges to overcome without living under a label that says even their basic human needs are different than those of the rest of us.

Collin needs food and water. He can't eat or drink it with his mouth, so he uses a g-tube.

Collin needs to get from one place to another. He can't do it on his legs, so he uses a wheelchair and/or a helper.

Collin needs to give and receive love. He can't do it with words, so he uses facial expressions, sounds, and body language.

Am I splitting hairs here? Maybe. But I believe words are important. And I believe the words we use to describe one another should be thoughtful and accurate. 

My son is Collin. Collin is six years old. He has Wiedemann-Steiner Syndrome. This means he has multiple disabilities and faces lots of challenges. But it does not make him a "special needs kid".

I don't take offense at the term "special needs." I just don't use it anymore. Because it is inaccurate. Because it is uninformative. Because it separates instead of bringing together. 

Summer Break

Hey, remember me? I write this blog. Supposedly.

I took a summer break. I just didn't mean to.

Sometimes life gets a little busy, right? And then sometimes life gets a little busy plus you go on vacation plus you start thinking about putting your kid in school plus you buy a house (a fixer-upper, no less) plus a ramp van. And you injure your neck. And it's 150 degrees outside with 99 percent humidity so your brain melts out of your head into a puddle of unmotivated slime and then fries on the sidewalk.

Does it sound like I'm making excuses? Yeah, it does to me too.

My peace offering, as usual, is a series of Collin pictures.

On our vacation to Savannah for a family wedding, we snuck in a morning at the beach. Collin couldn't get enough.

On our vacation to Savannah for a family wedding, we snuck in a morning at the beach. Collin couldn't get enough.

Collin and I had absurd quantities of sand in our swimsuit bottoms after this.

Collin and I had absurd quantities of sand in our swimsuit bottoms after this.

Wedding reception! Collin was the life of the party and danced until 11:00. Seriously.

Wedding reception! Collin was the life of the party and danced until 11:00. Seriously.

Phew. Savannah is HOT.

Phew. Savannah is HOT.

We were all sad that the Forrest Gump bench wasn't in it's original location anymore because we obviously wanted to get our picture taken on it. But Collin said  I brought my OWN bench, fools!

We were all sad that the Forrest Gump bench wasn't in it's original location anymore because we obviously wanted to get our picture taken on it. But Collin said I brought my OWN bench, fools!

Favorite place on vacation? The hotel pool.

Favorite place on vacation? The hotel pool.