Living-Deliberately.com

As promised, here are the answers to the questions you asked! My thanks to those who participated!

Q: I’ve been wondering about the health of your boys lately – what is going on with the littlest redhead – before Wheaton had to go to the hospital you were posting about your fears of him possibly having a genetic condition; I’ve not seen an update and he is often in my thoughts while reading your blog. Also, how have things been for Wheaton since his diagnosis ? I hope they are both well and healthy.

On the genetic condition, I’m not sure which one you are referring to, so I’ll answer both. As a baby, Wheaton stopped growing from 4-7 months, and from 7-11, grew very little. After force feeding him with a g-tube (he got sicker) and putting him through every test known to man except for one (a muscel biopsy), it was guessed that, and successfully treated for what is known as a mitochondrial disorder. This is where the mitochondria, the part of the cell that takes food and turns it into energy, has a disorder and malfunctions. It is beleived to be genetic. At the time we skipped the test because the treatments worked, after so much had not.

Our “littlest redhead”, Rowan, was recently tested for Down’s Syndrome, for various reasons. He does not have it and has also more than made up for his developmental and speech “delays”. He is also proof that it’s possible to take photographs that look “Downs-ish” and in fact, not have it! Who’dve thunk?

Wheaton’s official diagnosis right now is Ulcerative Colitis. He finished his course of steriods last week, the day before his birthday, and we are very glad to be off of them! They caused rapid weight gain that was uncomfortable and *very radical and violent* mood swings. We are trying to manage the condition with diet for now and if that doesn’t work, will likely need to begin an infussion drug with an IV every 6 weeks or so to try to force it into remission. We are really, really, really hoping to avoid that! He feels much better and we are learning to live with the disease; meaning, we take very seriously his requests to know where the bathrooms are when we are out, we make sure he gets enough rest, watch his diet carefully, and watch for subtle changes (children with this disease will often try to downplay symptoms out of fear of a return to the doc/hospital).

Q. Living on a micro-farmstead, delaing with illnesses, and having four children and a husband to care for, not to mention all of your work on the internet, must make for incredibly busy days. What activities do you always make sure you have time for, no matter how overwhelming the rest of your day may be? And when days seem too full, what do you do to escape?

The days are indeed full! But we’ve also readjusted some things recently. For instance, I can micro-farmstead OR manage a major medical issue, but I can’t do BOTH so the farmstead ideas have been seriously scaled back. I still have my garden but I won’t be expanding it this year; there will be no goats, we gave the chickens away, and the cats and dogs have been reduced.

Things I ALWAYS do: make my bed. It may be the only bed in the house that gets made some days but it’s a MUST. I also do the Flylady routines somewhat so every day, at least once, the sink is shined and the laundry is rebooted. I’m picky about my teeth so they are always brushed twice a day and flossed once. Can’t sleep or eat until that’s done! Other things that happen on a mostly-daily ritual: yoga stretches, swept floors, and reading before bed.

When our cup runneth over, we unplug. Go for a walk (even it’s late at night and the only light is stars!). I read mindless drivel, like celebrity gossip magazines. I refuse to answer the phone and declare a day a “no bra” day. (Sorry if it’s TMI…but that is indeed what the day is called!). Sometimes I clean the house like a madwoman restoring order and sometimes we leave and go for a hike. Or to a picnic with friends. Some day I’ll take weekend retreats at a monastary or a night away with my husband, but that is neither our lifestyle nor income bracket at the moment.

Q. Is there one fictional book/book series that changed the way you see the world? If so, what is it?

Fiction! Oh I miss reading fiction! I usually take the summer and read only fiction but this year I started a business instead; the only fiction I’ve read this year was the last Harry book. I am very, very tempted to dive into book discussion right now because I have scads of beloved fiction “friends” on the shelf and I miss them! And non-fiction has been pretty darn revolutionary, especially in the last two years. But that is not what you asked my friend, so I’ll stick to the point!

I think I would have to say the Harry potter series. And not because of what it held in it’s pages, per se….but because the act of reading them signified a step on my part to decide for myself what I thought versus regurgitating what was being said about them in the circles I was spending my time in..by a bunch of people who’d never read them. My baby was born and grew in the years the first two books came out; there was so much controversy over them! And at the time, we were involved in a very fundamentalist group. Roles were very, very defined and materials were only chosen from “safe” resources; the world was getting smaller and I started to feel as if I were suffocating. At the fringe of my hearing I was picking up on discussions of what “beauty” was and what “christian” materials really were…it seemed to me that works done with integrity, with a real passion for excellence, were more in the pattern of emmulating our Maker than things that *only* came from certain publishing houses, thus bearing a “christian” stamp, even when their quality was banal. And then one day I heard of a vacation bible school curriculum being designed around the Harry books and it wasn’t so that they could warn little children of the evils of a boy’s story that happens to take place in an imaginary world! I decided to give it a try, getting the books on tape and listening to them in the car. It was a delicious, fantastic summer: high quality stories well told that drew me in and ultimately helped me hold a mirror up to an Idol of Another Kind that was in our lives: the idea that God could be put in a box so I could possess all the “right” answers.

Of course the stories have ended now, with redemption triumphing over evil, and I am a very different person than I was when the first book came out. I know and love people I would have never known had I not taken those first steps out of the sheltered cocoon we were building, finding evil all around. I serve a bigger God, one less of my own making, and His world is bigger too.

Thanks again for the questions Brian, Sarah, and Mary!

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