Sunday, September 30, 2007

Horse heaven

One of the highlights of our trip back "home" this summer was the evening a few of us went up to my uncle's ranch (about 5 miles from my parent's farm, up in the hills.) We climbed into the back of his pick-up to ride to the pasture to see the new colts and fillies.

These are breeding mares and so aren't as tame as the riding horses. My uncle took a few buckets of oats and dumped several piles close to us for the mares to come and feed from. My nephew, Levi, and I scooped up some oats in our hands and tried to get the horses to eat from them. Most of the mares weren't very interested. But the foals were more curious and would walk up to us, stopping a couple of feet away and then maybe slowly edging closer. Sometimes a mare would quickly take our oats, but then leave before we could pet her. Sometimes we were able to pet the foals, if we stretched and reached far enough to get to them.

But finally, I managed to get a mare to respond to me a little. She stayed close by and ate out of my hand, and her foal, born just two weeks prior, came up to me. I stroked his forehead, then his nose, and then he came up closer and nuzzled me, and stepped in even farther for a hug. That little thing knew how to pull my heart strings! I was in love. Too bad I couldn't have brought him home with me!

Monday, September 24, 2007

Three years ago today

Three years ago today we flew home from England and Wales naive to the fact that we were bringing home with us, not only the wonderful memories of a glorious trip, but something that would change our lives, even more than those experiences, forever.

Some sort of amoeba or parasite, it is believed, "flattened" Erin by Christmas, Brady by the end of January, and me just a couple of weeks after that. Since then our days have been filled with extreme fatigue and many forms of pain - which began when we arrived back home but didn't put us down entirely until a few months later.

Each day for us is a fight to live. What does this look like?

  • Treatments and doctor visits of various kinds. I just counted 40 days of these since the beginning of the year which began 39 weeks ago. You get the picture?
  • Food preparation. We are sensitive to many different kinds of foods, so that means we prepare all of our own food, even our bread and crackers now.
  • Resting. We have to rest because we get more sick without it. We rest with light books, video games, movies, participation in Internet forums or blogs of our interests, Brady's hobby of 3-D art and Erin's of book reviewing middle grade/young adult fiction, naps (rare for us girls.)
  • Coping. Sometimes we're too sick to rest; so we pray, talk, cry, and try to nurse each other through it.
  • Studying. I am constantly needing to look up various supplements, symptoms, foods, or asking my health care people about them. I try to study various protocols and seek out the help we need for various issues. (I say "try" because my brain fog is great.) The kids are trying yet again to start some studies this fall, but it is very difficult. Erin's mind is the clearest and she still can barely stay caught up with a just couple of subjects because of the fatigue.
  • Getting out into the world. This isn't easy and if you see us out there, you need to know that it took a lot of effort on our whole family's part to get us there. Church, choir, weddings, picnics, plays, classes. We've had some success with participation in these, especially Erin as of late, but we're not consistent by any means. We always pay a big price in recovery time afterwards.
  • Celebrating. Practically impossible without outside help.

Did you notice laundry, housecleaning, etc., are not on the list? My dh does most of this right now. Yep, he's working almost full-time at home, along with his professional job. Also, you'll notice exercising isn't on the list. Erin is able to take a 1/2 hr a week dance class this fall, but the exercise we exert just to do the normal things like showering, dishes, grocery shopping, getting to our treatments, that's about all we can handle right now.

Saturday, September 15, 2007

I've enough to understand

We took Brady to a new doctor this week. His "passion" is helping chronic fatigue patients. When we were there and he was asking Brady questions, you could almost see the wheels turning in his head going several miles a minute. It was like he was a puzzle hobbyist and we had brought him a new puzzle, but it was still gift wrapped. I couldn't help thinking that when he gets the test results from all the tests he ordered, that's when the puzzle will be unwrapped and he'll realize it's a Rubik's Cube without the solution manual and maybe he won't be as excited anymore.

I know I should be optimistic. I know that we will learn some good things from him. It's just so very hard to get our hopes up at a doctor's office, after almost three years of visiting them. He was hopeful, though, and I'm glad for his enthusiasm and confidence.

Even though it is hard to get my hopes up when visiting a new doctor (to be honest, it scares us all quite a bit to dive in and let another one "try things out" on us,) my confidence in the Lord gives me the joy and hope that helps me to have peace. God's faithfulness to us keeps shining through moment by moment, day by day.

I was reading through my commonplace book and found this excerpt I'd copied out of The Dean's Watch by Elizabeth Goudge. It goes well with my thoughts today:

"How much more friendly it is when you cannot see, thought Miss Montague, and how much closer we are to Him. Why should we always want a light? He chose darkness for us, darkness of the womb and of the stable, darkness in the garden, darkness on the cross and in the grave. Why do we demand certainty? That is not faith. Why do I want to understand? How can I understand this great web of sin and ugliness and love and suffering and joy and life and death when I don't understand the little tangle of good and evil that is myself? I've enough to understand. I understand that He gave me light that I might turn to Him, for without light I could not have seen to turn. I have seen creation in His light. He shared His light with me that I, turned, might share with Him the darkness of His redemption. Why do I despair? What do I want? If it is Him I want He is here, not only in love in light illumining all that He has made but love in darkness dying for it..."

Monday, September 03, 2007

My kids' idea of fun

Today is a day "off" for most students. Guess what mine did.

Spent the day with their friends...

at the lake?

watching movies?

just "hanging out"?


they spent it

acting in, directing, filming, and producing a few scenes of the ancient Greek tragedy, "Antigone."

For a class project? Nope just for fun.

They're so cool! And their friends, too : - )

Saturday, September 01, 2007

How sick are people with chronic fatigue syndrome? recently held a live chat with Dr. Leonard A. Jason. The details can be found here: ME/CFS -Q&A Dr. Leonard A. Jason, Ph.D.As head of the Center for Community Research at DePaul University since 2000, Dr. Jason has several different ME-CFS studies going on at any one time. Community-based research is his specialty, with a focus on defining "the true face" of CFS and other 'controversial' illnesses.

I wanted to share with you the first question that was put to Dr. Jason.

Q: Dr. Jason, based on your patient surveys and other research
to describe functioning in CFS patients, how ill are people with
this illness, Chronic Fatigue Syndrome?

Dr. Jason: Patients with CFS are more functionally impaired
than those suffering from type II diabetes mellitus, congestive
heart failure, multiple sclerosis, and end-stage renal disease.

Thanks Dr. Jason for helping people to understand that we're not just "tired."