My Project: A Dream that needs all the love...

We watched the annual Christmas showing of "The sound of Music" and the words of the song of the Mother Superior about finding your dream has the feelings I am feeling. She says basically, "Find a dream that will need all the love you can give, every day of your life, for as long as you live." For me this means to find a dream that takes all your talents and abilities and experience. I thought it was impossible in my case because I am making such a U-turn in my life now, from full-time ministry to educator for my 13 year old daughter affected by Asperger syndrome. I must be available to her dependably at home, and that is all I can manage. I have been able to nearly complete a Masters of Education, e-learning, technology and design entirely online. I will finish in March. The degree requires a final project, and to my amazement, it is fast becominng an integrated project that will need all I can give! I can't say more except this is reaching to my innermost heart. May God bless us everyone whose lives carry love for an ASD affected child! May 2007 be the best!

Bless all the dear children in Thy tender care

I can't believe it is almost Christmas Eve and I have had to drop out of the world to get my health together and my assignments done by tomorrow night when I am going to church at least once in the evening so we can light candles and see precious people who love God as we do and celebrate the moment of God's decision to gift God's people, free and without strings, with grace and forgiveness. An example of pure love, just for us. No one more precious than another; why is that so hard for people to get? It is almost Christmas Eve, just a few hours.
Dear God, thank you for the love you show, the grace, and for the walk today that has not made me too aching to work tonight on the assignments I need to turn in now. Help me get to it. And bless all who have special needs children, especially those on the spectrum. Amen.

Help me Lord, post tonight for JIU, and keep up through this exhaustion

Today I had a hard time because I had responsiblities both early and late; choir practice early and a Christmas musical for Rebecca in the evening. This is very hard for me and my plans were cut short by a migraine mid-day. I headed off reflux by eating a small salad and a half sandwith all day until after the evening performance. Rebecca did very well tonight as a space crewmember. Of course, I was grieved because I thought she will never be able to travel to the moon or to Mars, or just to a space station for a visit.

Although one never knows, perhaps I will earn a million bucks somehow and then she will not have to worry about life's great challenges in the finance department.

And now tonight I must do part of my online coursework, not so bad as I finally am feeling a cohesive idea about the project, and how it will tie in to my capstone project next course.

I have been keeping up with my notes on medical symptoms progress, blood pressure, pain control, reflux, etc. Oh, God, let me do this. Let me keep up through Sunday morning with obligations to pick up people for church, attend Sunday School and assist, and sing in the choir.
Help me through this evening with enough control over this pain to accomplish some positive things in forum before I collapse from headache, and sitting discomfort and spasms. Oh God, let me get through this schooling. As much as it has let me keep my sanity and challenge me with thoughts professionally in education and helping me flesh out the schooling for my daughter, as much as all this is a lot, but I am so tired now. The wisdom has been wonderful, the collegial relationships with students and wise instructors so wonderful, but I am so very tired and want to focus on my daughter and my home, and my professional educational projects, Oh Lord, help me make it through tonight and the morning, Lord, and I will be faithful no matter what. Help me, Lord. In Jesus' name, Amen.

God help me with the focus for what's required

Friday – Day 4
Having horrendous intestinal spasms due to the n-pills. This, and if I eat more than a few bites, food just creeps back up the esophagus and sits there. Then if I lay down, I have burning. I have to sit up, take ranitidine and wait after meals. Sipping hot milk seems to help. But often, sitting is uncomfortable so I must lay half down and half up (recline).

I have been able to get sleep, so I can manage. But today I woke to tremendous neck pain and scraping, wrenching sounds when I move my head. But after standing up and taking my n-pill, I am fine. This is really a wonderful blessing because often the neck pain precedes a migraine. My blood pressure is fine except systolic, which seems to run above 80 most of the time (when it should be 70 or less because of the kidney challenge.)

Funny how, narcotics work well for a few days and then they don’t much at all, but they still produce those GI problems, from gut to esophagus, the whole thing. It is frustrating. Just two days of great symptom relief before the side effects show up and the help wears off. Still, I have got a lot done in that short time. The driveway is thoroughly swept, the hedge is done, and a branch is mostly taken care of. And if I haven't got past the hot milk stage this morning, that is not such a bad breakfast, after all.

Dear God, let this day be one that I can accomplish what is absolutely necessary. Let me help the church Youth with their costuming and play tonight. They are counting on me, Lord. So help me find the ears and glue, pick up my meds on base, and find and hot glue a coat for Ryan. I am so overwhelmed with the details to be done, but I must focus only on what is absolutely required. And Lord, tomorrow let my tenacity endure through all pain of bone, migraine, scarring, or GI problem. And if I must miss church Sunday when others can take up the slack, that is fine. I will take a migraine pill if necessary 30 minutes before we leave and safely drive Miss Maeola to church and then go home and rest. Thank you God that I have only had to take a migraine pill once this week (thank you that most migraines got bad late enough that I could go to bed.)

And thank you Lord for the patience to humbly explain things to Rebecca during instruction. Thank you for her bright mind and devoted attitude. Thank you for the victory, in Jesus’ name, Amen.

PBS Virtual Field Trips described at www.history.org/trips

Thursday and we watched a virtual field trip to colonial Williamsburg. It was wonderful although Rebecca had a hard time with it because it broke her normal schedule of television watching. I let her watch the"little kids" shows because of the social interaction they show. She has begun to use what she watches. Anyway, this wonderful conference call "field trip" showed the speech patterns of the day, what a child of 12 might be doing there in the 1700s, and the clothing styles. A girl from our time swapped lives with a girl from those times, and were trying to fit in. The girl from our time was told she was becoming a good apprentice but she was talking funny. And a girl from those times walked out of a store but stopped and handed the clerk a skirt, and asked her to stop by her home later with it, so she could see if it "went with" the items in the home. lol It was a hoot, as we say in TX. They are having one in January we will not miss! It is about a newspaper printer by the name of Clementine Rind who printed the Virginia Gazette in pre-Revolution times. At that point in our history, we did not have "freedom of the press"! This time, we will be "prepared with study materials, books we have read, and so forth so that Rebecca will be "free" of anxiety about the change to enjoy it!

I am having no nausea, finally, this morning. By drinking 2 cups of hot water and then waiting 30 minutes to eat, I am conquering my "internal workings"; I double dosed on one of the laxatives and finally found relief; I have learned to eat small meals with plenty of liquids. So, I am looking forward to the day. And my blood pressure was not so high this a.m. Yay, me! Yay, God! God is good.
The website for the PBS call-in shows is www.history.org/trips Jan-Apr will have really good shows come on at 1000 on KLRN, central standard time.
"Barney" this morning had a sketch about "people's faces reveal how they feel" so I got out the "Social Success Workbook" grandpa sent from the Instant Help Homework Series - Self Help Tools for Teens by Barbara Cooper and Nancy Widdows. So far, Rebecca does not know that these activities are "homework", a dirty word for her! lol She is activity 2 - Things that make me Happy.
I finally have a clearer vision of what I'd like to do for my capstone project at JIU (Jones International University, an accredited online university; not affiliated with Bob Jones). I am going to make a curriculum for using the mindmapping materials of Inspiration.com to design a course for parent-student teams to use the tool called Get SmartWired Cards, by Dr. Dawna Markova and the Professional Thinking Partners (both have good websites). Anyway, this will be a course that will teach the parents to be teachers for another group! At least one will want to do so if the curriculum is good. Parents of special needs kids are natural teachers; they have to be!!And I will add a "sharing community" componenet so that, with the participant's permission I will share the e-mail addresses among the group so people can participate in a forum. Sound good? And, I will have one grand "prize": a laptop. And numerous smaller "prizes": the Inspiration software, and the Markova/PTP tool for enhancing student success.
I think I can get corporate sponsorship. I have already got permission from the Get SmartWired folks to sell this at a discount...
This will begin as a course for everyone, with no prizes. And then we'll progress to a course for special needs students and their parents, with prizes...and "teacher training" with a forum for the "community of practice."

Upside/Downside of Narcotic Pain Relief

Day 3 –

Woke with high blood pressure but no headache, just the usual physical pain. I waited exactly 30 minutes after taking the prilosec to take the other medicines, at least I meant to, but after the blood pressure came back so high, I rushed to take the lopressor and candesartan. When the rest of the thirty minutes were up, I took my oxycontin, celebrex, phenergan, zelnorm, and one other.
My blood pressure was high normal after that. I should say the systolic was higher than ideal but normal. Diatolic pressure was low normal, just what my kidneys need. And my pain went away.

I was so glad, I cooked and cleaned with such joy. For breakfast I ate slowly and drank a lot of water with it. Even so I did have nausea that kept me from starting the fireplace; I had to sit awhile and take catnaps (dozed) on and off for an hour. I barely made it to our “Sit and Be Fit” appointment.

But afterwards my neighbor and I trimmed the hedge in front of my house, and a tree that was in sad need of pruning. It had branches so low that I could not walk under it to mow (on the rare occasions I mow.) She even brought over some outdoor trash bags and bagged the remains. There were 5 bags. She did most of the actual work. I am good at encouraging, though, and she enjoyed most of it, I think. After, she suggested she drive us out to eat since her husband is out of town. I paid for the meal as that was only fair. My yard was transformed by all her tools and mostly her labor and it wasn’t easy. I was in pain (we finished 2 hours after my second oxycontin) and I could barely walk, never mind cooking or driving, so I appreciated my neighbor very much tonight. Now I am having pain but I am nearing the time to go to bed and will not try to do schoolwork. I was certainly mortified to read my comments in forum, really off the wall. At least I know they were not based on narcotics, just pain. Still, it comes down to the same thing; I must be so diligent to be “normal”. Enuf said.

Now I remember another reason I took off the patch (due to a horrific migraine lasting 5 days), I also have some diminished stamina and sleepiness. I cannot “make myself” keep going as much. I have had some reflux, but I am eating very slowly and very small bites, chewing carefully and drinking plenty of liquids. So my nausea has been manageable, but annoying with these pills. I just pray that my stamina and focus will not be impaired with the patch. I need to study. After talking with my neighbor, I realize that NISD likes to have people with some expertise teach in adult education. My course will fit exactly what I am trying to do. I finally have a vision of what I’d like to do for a career and my very practical neighbor seemed to love the idea.

Rebecca was a very good girl at the restaurant. They cover the tables with butcher paper and supply crayons to every table. Rebecca produced some very good artwork, and participated in the conversation very appropriately.
Again today I had several hours I could really work carefree on taking care of the house (yard).
I could not have dreamed of doing this before (without narcotic pain relief); thank you God.
Thank you God for my life and this earth, warmth and family, home and church. In Jesus’ name. Amen.

Pain Relief

Today I spoke to the doctor at the Pain Management Clinic. He decided that I do need to get back on the Fentinyl patch and started a schedule of oxycontin to transition to it. So today I took a very modest dose of oxycodone, just one 10mg tablet, one in the morning and one in the evening. And hours later it dawned on me that a huge transiton had quietly slipped into life.

I could speak in a two way conversation with my daughter and move around at the same time. For as long as I can remember, I have had to ask her over and over to wait until I finished something to talk to me. But most of my life I had no problem with talking and doing something at the same time. I have been thinking for the last six months that perhaps I had acquired mercury poisoning somehow, or was becoming affected by alzheimer’s, or was struggling with autistic tendencies like my daughter…

But today, all in one dramatic afternoon I was myself again. So incredible is the difference in a pain free ( not even totally free) day that I spoke to Rebecca freely without constantly asking her to wait, to speak less, constantly asking her to let me just do one thing at a time because I could not focus on more than one…it was all gone. All that intense, distraction vanished.
Oh, my life. Dear God, I pray, let me find peace this time. Let me be able to tolerate the medication that brings this relief for an everyday life of enjoying the little events as they tumble moment by moment, without bringing on more intense migraines.

Lord, on Sunday a couple began to depend on me for help, and today they had a peaceful day of loving living. Please Lord, give me the possibility of being there for helping them, and helping myself to find what I am helping them to have. Lord, I am a weak vessel and need relief from pain to be the mother to my darling daughter that I want to be. She needs more from me. I have taught her to want to converse and love to exchange conversation throughout the day, but I have lost the ability to converse and do anything else. Now, Lord, this pain is crippling me; I have taught myself to focus on forgetting it and almost do not notice it at all, but it still has hold of my life. I am not present most of the day because I must focus so intently on not noticing the pain.

Today the consciousness of my absence spiritually from life just hit me. My life has become more and more and more limited because of this pain. I must stay still and focus so hard on two way conversation or any of the other of life’s activities. I looked back tonight on my conversations online the last five weeks, and they lack cohesion. The are here and there and all over the place, because they come from moments of discomfort, sometimes intense, sometimes mild but always there. Do people understand how grand is a moment of really pain free existence?

My poor daughter Kristin recently was, I know, so hurt by my abrupt ending of an intimately sharing conversation. I wondered what was wrong with me at the time, why I did not sense her let down until I read the conversation over again and realized I, I had just gone way beyond my confort zone physically. I was in a 9, severe, almost crying, immobizing pain from sitting or typing or staying up or whatever brought it on, there is no way to really know, it just comes on and there is no pattern, at least none that offers insight into prevention. And even then, I did not put two and two together. But this afternoon and tonight I was able to do things I have not been able to do for so long. I cleaned the den of intense clutter; it has been gathering for six months. And I spoke with my little daughter, cooked dinner and did not feel anxiety but enjoyed the ordinariness as a gift of grace. And then I rested peacefully, more peacefully than I can remember. It was blessed calm peaceful rest with no part of my body hurting..

So I had to make this note of petition, that I can one day have this pain free life that I need to provide for my daughter and that I earnestly desire for myself so that the missing things from my life might once again be restored: a real ministry, hobbies, regular friendships not just online, cohesive and compassionate tenderness for life, even Lord if it be Your will, a love life, not just suppression and survival. I need to find pain management that does not slowly creeping, make my headaches worse. But for now, it is enough. Today was blessed. And for today enjoying the ordinary moments and being able to participate fully in life was paramount .

And if in two years my headaches become days on end of intense blinding pain and I must stop narcotic pain management again, I will. But for now I must try once again. There may be a migraine prevention come along and short circuit my slide into more intense and long lasting migraines, and I will be free to be myself again. After all, it took years for the pain to become absolutely crippling before, and I enjoyed much of movement and the moments of life.

And if my headaches make me less than responsible, at least I am forewarned and am not taking on so much as before, and I am becoming more careful so people do not lean and depend on me.
And this little couple have her father who is wise if I must be absent here and there; and they know I have limitations and am not a formally functioning clergy.

But Lord, let one of the newer antidepressants help me. And thank you Lord for today, for blessed relief, for the ability to share myself freely with my darling daughter. Thank you Lord for the reassurance that I am not losing my mind simply because most of the time I must use much of it to handle the focus it takes to function through the fog of pain.

Oh, God. It is a wonder that I survive and anyone cares for me at all.

Now, Lord, let this migraine I had early and that is creeping back be short-lived.
And let this nausea be calmed by phenargan. And let my gut adapt to the narcotic
And not become immobile. Oh, Lord, you are my only help. All else is uncertain.

I have finally found a way to live
Just like I never could before.
I know that I don't have much to give,
But I can open any door.
Everybody knows the secret,
Everybody knows the score.
I have finally found a way to live
In the color of the Lord.
I have finally found a place to live
Just like I never could before.
And I know I don't have much to give,
But soon I'll open any door.
Everybody knows the secret,
Everybody knows the score.
I have finally found a place to live
In the presence of the Lord.
In the presence of the Lord.
I have finally found a way to live
Just like I never could before.
And I know I don't have much to give,
But I can open any door.
Everybody knows the secret,
I said everybody knows the score.
I have finally found a way to live
In the color of the Lord.
In the color of the Lord.
by Eric Clapton of Blind Faith and Cream
PBS is so great...to see this again really touched
my heart...well, now it really is time to go to bed.
I have posted in my online class at JIU, so done
my "homework" and really must go; tomorrow is
the cantata at church and we must be up and going
early, early...God bless us all and may enlightenment
happen to us early, not late, in life. Amen.

IL DIVO!

I tried to find this spot...and you guessed it, this time I got another blog, and it was listed
in the address box as my address!!! Yikes! Either I am losing it, or google's career in free blog support has got an html amiss somewhere...?!!!!! Help...
anyway I just wanted to say after blogging awhile I looked up to see something spectacular...
Il Divo was singing, a group of handsome male singers just singing away...
in French, no less. They were some sexy group, I must say, and if you love
a great male voice, this was a true treat.
Ok, so it doesn't take much to make me happy,
but, in this season of gratitude, I must say I'm grateful tonight!
Go, Il Divo, yeah!

Oxytocin?

A non-profit agency has tested oxytocin (the substance used to start or strengthen labor) as an agent to ameliorate the effects of autism. They used intravenous oxytocin, and found results to last 2 weeks, at least. They are now using nasal technology in another trial. This does sound promising; it was a trial of adults, and the number tested was not mentioned. I noticed that pharmaceutical companies provide part of the funding for this. I wonder how expensive oxytocin is? Does anyone know anything about this naturally occurring substance and what company makes it? Or any details about the study being done today?
Today was an achievement; I got all Christmas shopping done, and now we are ready for decorating, wrapping and all I need to do is write Christmas cards (find them), straighten up the clutter and find a place for the tree that does not add to the chaotic feel of being a full-time student. Oh, God I will appreciate not being a student, even as much as I have appreciated being an online graduate student!
Lord, keep my focus on writing that book, finishing this degree, downsizing and selling this house, and mostly, nurturing my darling Rebecca. Thank you, Lord. Amen.

Sun Microsystems!

I watched an interview with the CEO of Sun Microsystems tonight on the PBS' show "NOW" and he described the meaning of this term they made famous, "We are in a Participant Age" no longer the "Information Age". This means that we are no longer simply consuming information, but we are helping create that information, because we have the technological tools to do it. So, what is the role of the blog?
Here it is: I got lost the other day and could not find my blog, and I perused other blogs. I found someone in my home state of Oregon, with spiritual and religious insights equal to a professionally educated clergy, living the life I had dreamed of in the past. She is married, has several children they adopted through the foster program in the state. Her work is varied and fascinating, contributing to her community all in a volunteer capacity. Wow!
There it is, the role of the blog: we are a community of people encouraging one another, creating the future. It has always been true that we are creating our future, but until now we have not had the tools to make it so obvious.
I loved the goals of Sun Microsystems, one being to make solar powered cellphones pc capable, to link the world, in Darful, in the Amazon jungles, everywhere there are people creating their world, which is ours. The potential is awesome, enormous, and mindboggling.
It's big, bigger than antibiotics, if less obvious.
I just cannot decide if I should make Chapel Haven, for $80,000. my goal for Rebecca, as I'd like, or if I should run back home to Oregon and trust those smart and capable people to help me create what we need for Rebecca on the side of the country I prefer. It is a fact that New England, especially Connecticutt have grand opportunities; I just pray to God I make the right decisions. I need to run out of Texas. They have healthcare services I need and friends I love, but nothing for Rebecca's development. Today we went to a jazz concert of piano and saxophone downtown. There were numerous nearly all black schools there with students plus, right in the middle of the room, nearly a whole row of homeschool students and their mothers, all white. One of those with us turned out to be a racist person. Her discomfort was something I had not seen since my days of integration in South Carolina. Oh, how I longed to be in Oregon where such strangeness is not seen. Unfortunately, there are not many blacks there either. The lack of diversity there is a turn off to me now that I have learned to love African American jazz and soul culture and Hispanic big hearted family culture here in San Antonio. I will miss it. But in February my stipend ends and I must be ready to make a change. The house must be ready to sell, and we must be ready to leave. I'd like to visit my daughter in NC before we are gone. And then we will on the road. What long road from military to civilian, from trusting parent to entrpreneur again.
When my older daugher was little, I had a preschool of 20+ little ones because I thought it was the best thing for my daughter. I have the same commitment now. Just what should I do to help my Rebecca? Kristin turned out so well and I am so proud; she is so happy and capable. For her, I did everything I could to help her have every advantage and it paid off. I wish I could tell the world's parents to invest now and not hold back anything. Your happiness because of your child will pay you back over and over again.
So what about my darling Rebecca?
I had an inspiration to have Rebecca prepare now for the GED and purchased the TV411 materials (an adult education/literacy program) because she is a little adult. She responds best to adult materials. Can't wait...
Life, what possibilities!
Help me God live the details right now, Lord. Amen

Brief Devastation

So while I am identifying disappointment, let me add a small additional one. After posting this morning, unbeknownst to me my Rebecca stuck a small rock in her mouth and was chewing it so loudly that I heard it from eight feet away (thank God). I lost it briefly (shouting). She had cracked off part of her tooth that had been repaired two days ago. She had done this because she liked the "sound it makes". This is the nature of ASD. Oh dear God, make me larger than my feelings, and give me grace to find peace in her ability to discuss what is inside rationally. Turn my wilderness into wonderment at your goodness and love. And, oh Lord, give my daughter peace and strength to learn power over inclinations, and find joy. Renew my commitment to help her find joyful, abundant life. Amen.

Disappointment

The IRS claims that they do not owe as much as the accountant figured. They have taken six months to assert this; in the meantime they have sent me harassing statements that I owe them (five months). Now they do not dispute that they owe me thousands, just the amount of thousands. And they are not sorry. Even when the issue went to something called "Taxpayer Advocate" office. These people are not sorry either. They do not seem to have any self-respect whatsoever. Under this administration, the government has become both unresponsive and unaccountable. "My way or the highway" as we used to say.
Interesting that 2 days after Donald Rumsfeld wrote to the president there needed to be changes in our Iraq policy he was canned. So many people were elated to see him go that no one noticed this significance and that...the man replacing him is a man known for his "wheeling and dealing," a man who "could not remember" facts in the Iran contra affair. What must Iran be thinking of us? Not that we care, of course, but Gates is known for being a "company" man, no pun inended; if we disliked Rumsfeld for his dogged and abrasive style how will we like a man who is known for being smooth and doing things without being caught, loyally according to the administration's direction?
And, to think, the men and women of the armed forces are answerable now to him.
We may someday actually miss Donald Rumsfeld, who bullied the president's way through and was canned
when he could not do so anymore. At least you knew what he (the president) really thought.
Now we'll know absolutely nothing.
I had liked to imagine that people wanted a change in Iraq because the military are dying in a no-win situation. Now it looks like we're satisfied with someone who could make the whole thing more palatable.
Dear Lord God, bless the president with thoughts of peace. Give him the ability to admit a mistake. Move his heart from pride to a burden of compassion leading to wisdom. ...and while you're at it, Lord, please move the IRS to resolve my refund and send it. o_~
And bless all the parents who care for special needs kids. Give us gratitude for good friends, our other children, a roof over our heads, enough to eat, and Lord, opportunities to make this life a better place for us all. Lord, grant us peace and wisdom. Amen.

It only takes a spark...

I have refurbished my fireplace and bought a few safety things, to include a creosote destroying log. You burn a fire, and place the log on the coals. It converts the creosote to a flaky substance that falls into the ashes and you take it out when cold. God bless technology. I am so thankful for being able to burn a fire. After filling the house with smoke once by leaving the flu closed, Rebecca was averse to a fire for Years. To say it takes awhile to get over things is the understatement of the year for Asperger kids. Information about the traits has been so reassuring. I must tell you. The other night at Youth meeting at church, the usual prayer before a meal was about to be given, with volunteer youth giving it. Suddenly Rebecca said, "I will." She proceeded to offer a long prayer, that would have been too long except that it was so incredibly beautiful. She managed to weave together words from several Christmas music tapes with narrative along with some things I've said about the holiday season and even remembered to thank God for the food. More than one person complimented me on that prayer. A visitor was highly impressed.
Then, the next day a friend expressed her great appreciation for that prayer and until that moment I had Forgotten it. If ever I have had a reason to blog, journal, whatever, this is it. The real significant things can go off into history unheralded without the discipline of writing a few words. Life is like that. Life can drift off and away without significance unless we take the time to note a few sentences of the moments that connected. Wow, parents with ASD kids with echolalia: be sure to let them listen in the car to tapes, CDs of what you value. It Will come back! God is good and there is mercy forever! Amen.