Friday, November 08, 2013

A Silent Thief

My last post was a Family Update. While writing I said there was still a lot happening "In between the lines." I thought I'd write about some of those things.

Today I emailed and talked with Caleb's teacher and the Special Ed teacher. We've met several times and updates and game planning is not unusual with us. Today we talked about medication. A couple months ago Caleb got to a point where he would gradually get madder and madder (mostly when he didn't get his way.) and he started throwing things (canned food, chairs, scissors, etc.) being hurtful and destructive. We finally had to ask for medication until we can get in to see other specialists with other ideas. Problem is, the meds help for a little while and then we have to adjust them. But they make him tired if there's too much and yada yada yada. So we are working on finding a good dose and a steady plan.

It makes us sad when we see him asleep from medication...  But we know the alternative and that is Really Sad too! Especially because we know the fun, silly, happy, smile and light that Caleb is most of the time. It's like a battle to keep that light. Like something is trying to steal it away... It's Really Scary!

We also talked about tinted glasses to block out florescent lights, headphones and earmuffs to block out hums and chatter, coats becoming wings, car seat options for bus rides, and the Daunting Task of behavior modification, not just life skills training.

This morning I worked through waves of powerful fatigue and put dinner in the crock pot. It made a huge difference in our evening. My plan from now on will be to feed the boys dinner right when they get home from school at 4:00. From there, Caleb and I will go right outside. I have no idea how we're going to survive the winter... But I'll focus on Now. Being outside in nature is Caleb's element, it's therapy for him. And he craves having "jobs". So every day he runs out to gather the eggs. I am going to add the task of going (with me) to gather the mail. Then we'll walk around the Ranch to make sure everything is in check. Today we ended up walking completely around the Pond, behind the Arena where we daydreamed about where we would house different animals if we could, and then we looped through the side yard and filled in a hole that's been waiting to be filled with dirt for over a month. By the time we got home everyone was ready for a quiet moment. Within ten minutes I found all of the boys in the living room sitting on the couches reading books. - Peaceful sigh - .

I won't shatter the moment with details of Caleb and JJ suddenly coming up missing after the sun went down and then showing up with a flashlight and a grin, "we just wanted to see who was at The Barns," he says.  Grrr! Okay, I shared the details. The thing was, I wouldn't have even know they were missing if the door wasn't left wide open. I thought they were upstairs! Note to Self: We need door sensor chimes.

There is still so much more I could write about. And I want to because it helps me process things and be able to recall them later. But I am so tired.  Physically, mentally, and emotionally. I'm Tired.  So I will say good night for now.

Wednesday, November 06, 2013

We're Still Truckin' Along - Singin' a Song!

We are still living in the Ranch House on the Civil War Ranch. We love the home, scenery, family, our animals, the schools, and the primary. They have all been a bounteous blessing in our lives!! Our most difficult struggle is Leif's commute to work. He works a night shift as a RN in Springfield. This is a 90 Minute Commute - One Way. He works 4-5 12 hour shifts per work week. Our life closely resembles what it was like when he lived in Flagstaff away from home as he went to Nursing School. Gratefully we see him a little more often now then we did then. But life often feels chaotic and drained. We have chosen this route so far because it works the best financially at the moment. But it's starting to wear on everything. So we're trying to step up our thoughts and actions even more about finding a way to be a little more "normal" in our life. Either find a home out closer to his work. Or a job closer to here because of the great schools and family. We are back at trying to decide about renting or buying and making one work in the right place. Uggg! Really. 
Works A LOT! And they Love him! He is a great nurse with a gifted bedside manor. Gratefully, he enjoys his job so far as well. But he's getting pretty tired with the schedule and then a 3 hour commute. He serves as the teenager Sunday School teacher on Sundays. And Super Papa and Hubby 24/7. 
I'm just trying to keep things afloat. I desperately wish I could do it all better. But it is what it is. My health is a constant journey. I just recently finished a round of Prednisone (steroids) and that usually helps me feel somewhat better for a couple few months (minus the added weight that comes and never leaves). So Far we've ruled out Lupus with testing. Ruled out Rheumatoid Arthritis through testing. Sure diagnosis' are no surprise: Epstein Barr Virus (Chronic Fatigue Syndrome) through testing and Fibromyalgia. The latest discussion is about Osteo Arthritis. We are still trying to look in to the tumors and issues on my pituitary gland and brain. I talked briefly with the Pediatric Neurologist that we met with for Caleb and he told me to insist on seeing an Endocrinologist and to get another MRI. His suggestions will most likely help move things along with my doctor who's gotten hung up on some of my other issues. But other then all of that, I'm great!! -wink wink- 

We have three really neat boys!! I watch them interact with the world and people around them and I am often fascinated with how they are able to bring a special light into the eyes of those around them. This is a blessing to be able to see this as their mother. Mostly, because I know of their personal struggles that are wrapped up within their precious gifts. Leif and I are striving to help the boys work through their struggles without excuses and carefully protect their light and train them up in a way that they will be able to function in the world as the best people they are called to be. Caleb and Jakob both attend a Wonderful school that fits perfectly with their needs right now. We feel blessed to be able to send them there. 
This month marks our girls' seven year anniversary. They were born on October 30, 2006. Our LeOra had already passed by that point. And our Rhea slipped into heaven seven years ago tomorrow on the 7th (2006.) This year we have missed them as playmates for the kids and Leif and I have missed what could have been some little girl company. I have shed a few tears over the lost chances of passing down favorite dolls, choosing dresses for special occasions, and imaginations of them running through the fields here on the Ranch. But overall it is a precious comfort to know that they were spared the potential and tremendous hardships earth life would have allotted them. Evenstill: We miss them and are forever grateful for our Eternal Family!
Pray Together
Read Scriptures Together
Strive for Peace Within Ourselves and Within the Walls of our Home.
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