|Make a Smilebox greeting|
Thursday, December 18, 2008
Saturday, December 6, 2008
Dear God, I have felt emotional pain and I have experienced physical pain. I have seen the affects of all kinds of pain in other people's lives. It is not pretty. I hope and pray that I will always be able to reach out to others, think of them, think of good things, think of you, rather than focus on my own pain. When I am able to reach out and help someone else, my spirit is filled with joy, happiness, and satisfaction. It takes my mind off my own pain and problems, and directs it to a better perspective. Please minister through me to ease the pain of my family, friends, neighbors, coworkers, church leaders, whoever needs a special touch. In Jesus' name I pray, amen.
Labor Alone Will Not Satisfy
TGIF Today God Is First Volume 2, by Os Hillman
"All the labor of man is for his mouth, and yet the soul is not satisfied" (Eccl. 6:7 NKJV).
How would you feel about yourself if your job was removed from you tomorrow? Let's imagine that your income wouldn't change, just what you did everyday.
One of the schemes that Satan uses in the life of the Christian worker is to get him/her to view their value solely based on the type of work they do and how well they do it. We call this performance-based acceptance. It says "As long as I have a good job and I do it well, I have self-esteem."
This is a "slippery slope" and can be used by Satan to keep our focus on our performance versus Christ. We are never to find our value in what we do. Instead, our value is solely based on who we are in Christ. The apostle Paul wrestled with this after he came to faith in Christ. He had grown to the top of his field as a Jewish leader.
"If anyone else thinks he has reasons to put confidence in the flesh, I have more: circumcised on the eighth day, of the people of Israel, of the tribe of Benjamin, a Hebrew of Hebrews; in regard to the law, a Pharisee; as for zeal, persecuting the church; as for legalistic righteousness, faultless.
"But whatever was to my profit I now consider loss for the sake of Christ. What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ and be found in him, not having a righteousness of my own that comes from the law, but that which is through faith in Christ-the righteousness that comes from God and is by faith" (Phil 3:4-9).
You'll never really know to the degree that your self-esteem is rooted in your work until your work is removed. Unemployment, illness, or a financial crisis can lead to job loss.
Why not evaluate where you are in this area of your life. Affirm with God your desire to be known by Who you know versus what you do.
Friday, December 5, 2008
Did you ever dream of trading places with someone? I have. I'd trade places with my friend, ****. Well, not places, just ALS. I'd trade MY ALS for HER ALS. You see, **** is in their early 40s and has a rapid progression of ALS. She was recently told that if she does not vent and/or get a feeding tube her life expectancy is 6-12 more months. She started having ALS symptoms in July 2006 and was not diagnosed until January 2007. Six months more would put the time frame under 3 years from symptom-onset to death.
I recently saw my neurologist and was told that my ALS is extremely slow-progressing. He feels that I am likely to be among the 10% of ALS patients that live more than 10 years from diagnosis. I've already gone more than 4 years from the first noticeable symptoms, and just over 3 years from diagnosis.
To illustrate what a "slow" progression looks like (albeit under "ideal" circumstances"), famed theoretical physicist, Stephen Hawking (diagnosed at age 21 with ALS) went 22 years before going on a ventilator at the age of 43. He is now age 66.
Here's the kicker. The "journey" will be the same. **** is just getting from "point A" to "point B" on "the express". I'm taking the "pony express".
**** has a close, supportive family and graduations, weddings and grandchildren on the horizon. **** is a veteran, and recently the VA ruled that ALL ALS is now a service-related disease. She will have the health care benefits that will be needed for the long journey.
**** has lived in their community all their life. Her parents are both still alive. While they are divorced, both her father and mother are remarried. Both sets of "parents" live nearby. **** has two teenage children and her spouse was able to recently take an early retirement from a major national corporation which came with a generous severance package and retirement benefits.
**** retired from her job after her ALS diagnosis. She has a sufficient Social Security Disability income, that when added with her spouse's severance package and retirement, give them the means and ability to maximize the time that **** has left. They could travel and do all those things they couldn't do while they were working at their jobs.
What **** doesn't have is time.
I, on the other hand, have time. However, I don't have family support. I am struggling to live on 115% of the poverty level while attempting to meet the needs of a disabled child. Emotionally and financially I am pretty short on resources. Why am I the one who will languish?
I don't believe God chooses to give us ALS, nor does He choose to give one person resources and another one lack. "It rains on the just and the unjust." Matthew 5:45. Still, if I could, I'd trade ALS with ****.
People say how much "better it is for Christopher" that I will be around longer, and I agree…. to a point. Right now, it is much better. When I get to the point where I can't feed myself, dress myself or take care of my personal hygiene (which will happen and will be a "chapter" that will be much longer than ****'s), I beg to differ. How much HARDER will that be on all of us?
God provides what we need, not what we want. It just all seems frustrating and unfair to me tonight.
Thursday, November 6, 2008
Thursday, October 30, 2008
Graduation Day, October 30, 2008
4 Paws For Ability, Inc., Xenia, OH
Today we officially passed our "Public Access Test" and were legally certified to go with Stitch into all public places under ADA laws!
Today, Christopher also had his first (and, unfortunately, MAJOR) meltdown during training. I am so delighted to report that Stitch was not a bit skittish and, in fact, sought Christopher to nuzzle, lick and comfort him. Stitch is an amazing dog. He is a black lab/mastiff mix who was rescued from the pound. He is SO smart and lovable! Both the Lead Trainer at 4 Paws AND the vet who has cared for Stitch said they would have adopted Stitch had our placement failed! I told them, AH, NO WAY! ;-)
Tomorrow we will head home to Indiana. We are exhausted. Christopher awoke with a fever and bleeding ear last Sunday morning and is on ear drops and antibiotics. I started out with what I thought was allergies and am now fighting a probable sinus infection and/or bronchitis. To say this has been an easy trip would be a blatant LIE. That said, it has been the culmination of a dream that has been fulfilled beyond my wildest hopes and dreams. Stitch is the PERFECT dog for us. I can't wait for you all to meet him!!!
Once home, we begin the months-long intensive training to cement and perfect the training we've gotten while here. We still need your love and prayers as we learn to function as a service-dog-family, but we're off to a great start!
Thank you for your love and support on this journey!
Wednesday, October 8, 2008
It's funny. I answered that question using all of those categories at one time or another. God has a way of stripping all that away, though. He wants to know WHO you YOU ARE. What if you lost your career, your family, your vacations, your car.....who would YOU be. I hope that you know that you would still be someone whom God is "especially fond" of. May you find the blessing of seeing beyond the "stuff" to see the "person" God created you to be.
Tuesday, September 30, 2008
We held a "Beans and Ham Dinner" and Silent Auction fundraiser on Saturday night at Union Chapel. Unfortunately, the turnout was very sparse and we fell drastically short of our $5000.00 goal.
The good news is that our hotel stay appears to be taken care of by fundraisers held at the hotel (Hilton Homewood Suites) and, if needed, by Hilton Honors points from a caring friend.
We have needs for equipment/supplies for the dog, some of our meals in Ohio (3 adults, one child), gasoline and RENTAL of a wheelchair accessible van (more than $100 per day).
For more info please go to http://www.4paws4christopher.com/.
Please spread the word and thank you for your prayers! Love, Claudia
Tuesday, September 23, 2008
"How many people do you know that would change places with you and take on your ALS so you could have a healthy future with your son?"
Would you trade? Think about it.
Love you, Claudia
Sunday, September 14, 2008
Wednesday, September 10, 2008
I am speechless (of course I also got a notice from Indiana Medicaid that they overpaid almost $1500 and want their money back in the mail today... I was speechless about that too, but in a much less pleasant way)!
SO, here's a a picture of the couch and love seat we got. Thank you to whomever loves us and gifted us... ultimately, thank you Jesus! Amen!
Monday, September 8, 2008
The difference between “good days and bad days” is narrowing. Mostly, we just have days with various challenges depending on my strength and energy level. Energy level is one of those things that I used to be able to count on a nap or good nights sleep helping with. Unfortunately this is no longer the case. I often don't sleep well because of pain. My left arm is significantly weaker than my right and I was beginning to have “frozen shoulder” on the left due to the lack of use in certain positions. Amy has been doing passive range-of-motion on both shoulders for a while now and this seems to help some. My neck weakness causes pain, as well. Sleep does not come without melatonin or RX meds.
Last week we had to go to Indy because Christopher had a doctor's appointment. I was feeling pretty tired, sore and weak so we took a manual wheelchair (our van has no ramp for my powerchair). While this chair spared me from having to walk, it was not comfortable, nor did it support my body in the areas I need it to. Medical staff looked past me and immediately addressed Amy when talking about Christopher or asking questions. This wasn't intentional and when they were told who was “mom” they tried to address me, but it does hurt me to be overlooked. At least my powerchair allows me to sit up higher so people can't look past me -- even if they aren't sure who is “mom”.
Eating is a daily challenge. I'm never sure what I will be able to eat so we end up "winging it" at the end of the day. The one thing I know I can always eat are smoothies in the morning. Choking, even if only on my own saliva, is a daily event and it HURTS. Coughing for hours afterwards, I always wonder, “did the food make it past my vocal cords this time and, if so, will I get aspiration pneumonia?” So far, I've been blessed but I've seen enough of my fellow “PALS” (persons with ALS) end up in the hospital with pneumonia that I know it is a very real risk. Pneumonia is probably the leading cause of death in PALS. My choking episodes are a source of great anxiety, especially with Phillip and Christopher. I believe they are afraid I will die every time.
I need help cutting my food and help with fasteners. Showering and getting dressed take longer and exhaust me. My endurance and balance are major issues when I go out, and I can't just “up and go” anymore because I can't take my wheelchair. I think the ability to just “go out and do stuff” is what I miss the most. Thankfully it has been a beautiful summer and my house has been “enlarged” significantly by the front porch and back deck. I am really dreading winter, though. Bottom line: I'm progressing...slowly, but still progressing.
God is still good, even though sometimes life is hard. Hope you know that in your life, as well!
Sunday, August 24, 2008
Catherine and Vicki in their Luau "finest"!
The Happy (and FULL) party-goers!
Thursday, August 14, 2008
I have been gone from this blog a long time! My excuse, feeble though it is, takes the form of something like "It's summer...not just any summer, but one of the mildest in memory... and I don't know what I'll be able to do outside next summer...and my computer doesn't like the sun and I do...and my computer likes the inflatable pool even less..." You get the idea. This summer has been phenomenal here in Indiana. We have only had about 2 weeks when it was "too hot to go outside" (like 9 months of the year is in Texas!). It has been delightful. I have what passes for a tan (for ME) and feel better emotionally, if not physically, for the time I've spent outside. Christopher, Amy and I have tried to go in the 10' x 30" pool daily as weather allowed and I'm committed to milking every last nice day of the season! Fall is beautiful, but it is still followed by WINTER (that bleak, gray, muddy season) when houses shrink and spirits fail...so VIVA SUMMER!
Saturday, August 2, 2008
Sunday, July 13, 2008
Thursday, July 10, 2008
(From Ephesians Four Ministries)
Dear God, "To live is Christ, to die is gain" (Philippians 1:21). I want to live unto Christ. May the days of my life on this earth be pleasing to You. I pray that I will "die to self" and grow and become more like Christ as I journey toward that day when I will be with You in heaven. Please use me to bless others; to give love, encouragement, help, and guidance where needed; to meet material needs of the needy; and to point people to You. Thank You, Thank You, Thank You for all that You have done for me, for all that You are doing in my life right now, and for all You will do in whatever days are to come. In Jesus' precious name I pray, amen.
Wednesday, July 9, 2008
Monday was my birthday, and it was the best ever! Christopher and Amy and I were joined in our inflatable pool by Julia and later Angela and her family (not all in the pool!!). I got the most ginormous smiley face balloon of all time and a cool cake made to look like a block of cheese with cartoon mice on it! And it was my favorite (white cake with original white icing). YUMMMM.
We enjoyed the outdoors and then had salsa and chips and cake. Later we played Scrabble and drank strawberry daiquiris! I am still exhausted, but it was amazing! I felt so loved and I am so blessed to have such good friends. Many of you who weren't here to celebrate sent cards and I love you so much!
God is good!
Thursday, July 3, 2008
TGIF Today God Is First Volume 2, by Os Hillman06-26-2008
"We were therefore buried with him through baptism into death in order that, just as Christ was raised from the dead through the glory of the Father, we too may live a new life" (Rom 6:4).
When Moses led the people of Israel out of Egypt, he took them to the edge of the Red Sea. The people saw the sea before them and heard the chariots of the Egyptians behind them. They knew they were trapped - and they lost their faith in God. They thought God was no longer at work in their lives. In panic and despair, they turned on Moses and said, "Why did you bring us out into the desert to die? When we were slaves in Egypt, didn't we tell you, 'Just leave us alone and let us continue serving the Egyptians.' Better to live as slaves than to die out here!"
They couldn't imagine that God's path to freedom actually led straight into and through the deep waters! The waters of the Red Sea, like the New Testament sacrament of baptism, are a symbol of death. When Moses parted the Red Sea, the people of Israel walked upon the dry seabed with walls of water on either side. They descended into the depths of the sea. They died to their old selves and rose to a new life that led to the Promised Land.
Like the people of Israel in their journey, we panic and cry out to God, "Did You bring me out into this desert of adversity to die?" We would rather live as slaves than die to self and yield control of our lives to God. But God takes us through the depths so that we can emerge as new people, ready to enter the Promised Land.
In general, I've observed that the greater and higher the calling, the more intense the adversity. I'm not saying one person's call is more important, but I am saying it may have a more far reaching impact on others. This often requires greater preparation.
If you find yourself in deep water, thank God today that He is preparing you for a life that is designed to impact many.
Wednesday, July 2, 2008
Needless to say this is horrible news. I still cannot fathom how the State of Indiana can maintain that a disabled adult supporting another adult and a disabled child with just over $2000 per month has (in their words) "$927 per month excess income".
I need to continue to lobby to get the ICES Policy (policy for Medicaid among other things) on this matter CHANGED.
Don't stop praying. I am at a loss...
Christopher before surgery
Hi and thanks to all who prayed for today to go well. For those of you who don't already know, Christopher had to have dental surgery under general anesthesia today. All his major dental work (sealants, x-rays, fillings, cleanings) have to be done under a general due to his behavioral issues. We were dreading today, knowing that Christopher has extreme anxiety problems anyway (without surgery!).
Julia comforts Christopher after his IV is started
We were blessed to have my friend Julia drive us down and help Amy and I out. Christopher loves Julia so her presence was a real comfort. He was anxious, but did great at keeping himself from becoming self-injurious or from getting aggressive. He was able to verbalize "I'm afraid", which was a huge milestone for him in and of itself!
He had 4 baby teeth extracted (the permanent teeth were already coming in but the baby teeth weren't falling out), cleaning, x-rays and a phrenulectomy (removed tissue between his two front teeth). He came out of anesthesia looking like he had been socked in the mouth, but otherwise did quite well. He has 4 stitches that will have to be removed on recheck.
Last time he had this, we ended up back in the ER with an asthma flare up, but this time he seems to have rebounded well. We had a fabulous anesthesiologist (even started the IV herself) who, when told of the problems last time, gave albuterol to Christopher while he was still intubated. The only problem he's having now is pain (we have good meds for that) and HIVES. The hives have abated with 50 mg. of Benedryl. :)
Thanks again for your prayers! NO major meltdowns, NO puking, NO aggression, NO asthma flare! YEAH!
Sunday, June 22, 2008
A "close-up" of this summer's first praying mantis!
We are delighted to announce the birth of some baby mantises in our yard! Christopher couldn't have been happier to see the miniature version of last summers' friend! Stay tuned for further developments and pictures, I'm sure.
In other news, Phillip has been here for more than a week and we have been so glad to have him around (OK, give or take the screeching singing along with the Doodlebops or the chanting "Earth! Fire! Wind! Water! Heart! GO PLANET!" as he watched YouTube videos of "Captain Planet!).
Tomorrow a group from church will begin construction of a ramp from our back door to the back deck, along with removing our non-functional hot tub and replacing that part of the deck. I can't wait until I have a big old deck that I can go sun on! :) Thanks to Stock Building Supply and Matt Payne for the lumber and to the group from Union Chapel "Serve" who will do the work, along with an anonymous donor who paid for the railing and other materials we need. Additionally, the group will put up a small section of chain-link fence to complete the enclosure of our back yard in preparation for our Service Dog who will come home after the two-week training in late October!
I am getting a little bit of a tan, trying to go outside every day that it is nice and not too hot. This week has been fabulous! Like California without the "sun tax"! I haven't been sleeping well. I have a lot of muscle spasms in my neck, shoulders and upper back as well as over my hip bone (greater trochanter for those who care). Between the AVAPS (vent) hose and my pain, sleep is hard to come by. I bought an older electric hospital bed at a rummage sale (thanks to my friend Angela for scoping it out and calling me!) but the two foam pads still don't make it comfortable to sleep on. I need the adjustment of the head and feet to support my head and neck so that some of the strain is taken off, but the bed just isn't the right consistency. My friend Kent has a Comfort-Pedic adjustable bed and that is really what I need. If I had a queen size I could comfortably watch our evening episode of "Emergency!" with Christopher. As it is, we squeeze into the hospital bed. It is cozy, to say the least.
I am blessed that I can watch videos like that on my laptop with Christopher. It has become our nightly ritual to watch one episode of "Emergency!" and one of "Adam-12". If you don't know what those shows are (a) you're too YOUNG and (b) you can go to www.wikipedia.com and check them out. Both are spin-offs of the TV show "Dragnet" (SURELY you've heard of THAT!). Anyhow, it is a good "mommy and me" time for Christopher, plus I get to critique how much things in EMS and medicine have changed. It is a fun time for all!
I am leading an online group study of the Randy Alcorn book "Heaven" and I am so excited to be doing so. I have made so many new and wonderful "old friends" since leaving PHI. I wouldn't trade them for the world. I am BLESSED!
Hope you are blessed this June 22nd as well! Love, Claudia
Saturday, June 14, 2008
A shadowbox I did with my mother's picture, a pair of her dressy gloves, a dried rosebud and some jewelry... I love you, Mom!
Wednesday, June 11, 2008
Wednesday, June 4, 2008
Christopher's website is acting up (thanks to my trusty-musty XP platform computer dying and my getting a Vista platform replacement...incompatible with the now way out-dated "FrontPage" that I used to design his site). I will try to get that all straightened out ASAP... but the bottom line is that we have one last financial hurdle to mount to get our dog....the travel and accommodations for the two-weeks in Ohio and some mandatory dog equipment.
If you'd like to help with a fundraiser please contact me. You may also send your tax-deductible donation to:
c/o Malcolm Smith
6927 Thousand Oaks Lane
Indianapolis, IN 46214-3298
On the memo line, please designate for what
your gift is to be used. A receipt will be mailed to you at the end of the year.
Monday, June 2, 2008
Last night (June 1 approx 10 PM - approx. 5 hours after incident):
23 hours later:
Don't stop praying! :)
Sunday, June 1, 2008
The blessing is that we had two friends over when this happened and Catherine was here, so they were able to take Phillip and Christopher with them while I went in the ambulance with Amy. The boys did GREAT everything considered! PTL!
Also, please pray for us financially as Amy has no health insurance.
Wednesday, May 28, 2008
Monday, May 26, 2008
Today, I wanted to take some things to my neighbor across the street, Bob, who has advanced lung cancer. Amy and Christopher were going to go too and I was going to take my Jazzy. I made one HUGE strategic mistake. I turned the Jazzy around on the ramp (no problem there, the ramp is not steep and is very, very wide) and then (problem enters here) I decided to back down the remaining 12" of ramp, thinking I would turn around in the driveway. Well, there's one little problem with my ramp. It is not flush with the pavement at the end. In fact, it has about a 1.5-2" lip. This is something we have to get adjusted, but is, for the most part live-able...unless you go down the ramp backwards! I got to the edge and the whole chair just fell over backwards! The saving grace was that I had the headrest extended as high as it would go and my head it that instead of the PAVEMENT! Needless to say it was a HARD JAR to my body and my neck is killing me now. Otherwise, nothing was hurt but my pride.
I was able to raise the left armrest of the Jazzy and just roll out of the chair onto the ground and then get up onto my hands and knees....and it was then that I felt a bug fly into my hair and I reached up and grabbed it to sling it out and got stung... it was a wasp. Add insult to injury (or injury to insult!).
This all upset Christopher, of course. None of this was on the "agenda". SOMETIMES I HATE AUTISM! Then I feel so bad for him... how unpredictable and out -of-control his world must seem! Dang it!
I finally gave up and asked Amy to just run the things over to Bob while I sat on the couch nursing my wounded pride and sore neck.
Thanks for letting me "vent". Sometimes I just don't know what else to do....
Sunday, May 25, 2008
The Place of Nothingness
TGIF Today God Is First Volume 2, by Os Hillman
"Be still and know that I am God" (Psalm 46:10) .
Do you find yourself in a place of nothingness? There is a time and place in our walk with God in which He sets us in a place of isolation and waiting. It is a place in which all past experiences are of no value. It is a time of such stillness that it can disturb the most faithful if we do not understand that He is the one who has brought us to this place for only a season. It is as if God has placed a wall around us. No new opportunities - simply inactivity.
During these times, God is calling us aside to fashion something new in us. It is a place of nothingness designed to call us to deeper roots of prayer and faith. It is not a comfortable place, especially for a task-driven workplace believer. Our nature cries out, "You must do something" while God is saying, "Be still and know that I am God." You know the signs that you have been brought into this place when He has removed many things from your life and you can't seem to change anything. Perhaps you are unemployed. Perhaps you are laid up with an illness.
Many people live a very planned and orchestrated life where they know almost everything that will happen. But for people in whom God is performing a deeper work, He brings them into a time of quietness that seems almost eerie. They cannot see what God is doing. They just know that He is doing a work that cannot be explained to themselves or to others.
Has God brought you to a place of nothingness? Be still and know that He really is God. When this happens, your nothingness will be turned into something you will value for the rest of your life.
I'm looking forward to seeing the deeper work.. I am definitely the person who is described above who has "been brought into this place when [God] has removed many things from [my] life and [I] can't seem to change anything."
Thank you, Lord, for the ministry of Ephesians Four and Os Hillman through their words that seem written so often just for me. Amen.
Monday, May 5, 2008
Sunday, May 4, 2008
I was told that I need to knock-off the "medical-jargon"....so here's the translation of my last blog post: I'm having more symptoms and my ALS is progressing. That's the long and short of it.... sorry for the big-word-eese...honest, I don't do it to confuse...just second nature!
It is a beautiful, beautiful day! I am sitting on my front porch, with praise and worship playing from a streaming station at http://www.pandora.com/. I am enveloped by God's love. God is multiplying my friends like Jesus did the loaves and fishes. Wednesday Sheryl was here with her unstoppable energy and creativity! Friday afternoon I got to hang out with Julia and that night I had fellowship at Small Group (love you guys!!) and yesterday (before I was even up!) Danny had come over and cleaned out the gutters (thank you, thank you, thank you!) and even brought "treats" for Christopher and me. Yesterday our friends the Horaks were here and went to church with us last night. Today my friend Roni surprised us with a visit and then my buddy from the ER at Methodist, Aaron, and his wife, Michelle and their friends came over and are working in my flower beds (that is an understatement...more like transforming my yard)!
I feel like a princess...and yet I am SO humbled. People who don't even know me, sacrificing their time and effort just to make my world more beautiful! WOW. Isn't God amazing? This is all HIM loving me through souls in "earth suits"!
Wednesday, April 30, 2008
Up until the past few weeks, I don't feel that there has been much to report regarding my health. I've gotten progressively more fatigued, have more slurred speech, more trouble eating, yadda, yadda. The past couple of months things have taken a somewhat more dramatic (for me, at least) change. The most obvious new physical symptom I've developed is clonus. I had some jaw clonus (feels just like your 'teeth chattering' for no reason) for many months, but I now have clonus in my extremities. Unfortunately it is making my balance more unsteady. The other rather significant symptom I've developed is marked dyspnea (shortness of breath) with exertion...to the point where I can only speak in one-to-two-word sentences. I saw a pulmonologist in Indy last week and he has changed me from my BiPAP to a non-invasive ventilator at night (AVAPS) and has put me on a 6-week blitz of nebulized short-acting and long-acting bronchodilators as well as steroids. This, coupled with my immune deficiency (treating my inability to fight the bacteria that causes pneumonia) is a concerning development. Mostly, though, I just get frustrated because my phyisical activity and sleep are so negativly affected by my breathing.
So, you might see me in my wheelchair, or walking with a "rollator" walker. All this said, I don't think I "look sick" and I'm glad of that. I'm trying to get sun whenever I can to cast off the winter-pale and I laugh and joke as much as possible! Come join me on the deck or front porch! Bring your sense of humor...it is the only requirement.
Tuesday, April 29, 2008
This could make us homeless or cause me to go without necessary medical care.
God is the only one who can change this. We have an appeal hearing on May 14th but were told outright that we will loose and owe Medicaid for everything they've paid for up to that $927 per month for each month since the change was made (5 months ago???).
Thanks for praying.
Saturday, April 26, 2008
My breathing has become more of an issue of late, as well. I have found that minimal exertion leaves me short of breath and unable to speak in sentences longer than 1-2 words. I saw my neurologist a couple of weeks back and he referred me to a pulmonologist (lung doctor) who I saw on Friday. I was very impressed with him and am happy to say that we've at least got a "plan". My RT (respiratory therapist) came and traded out my BiPAP for an AVAPS, which is essentially a ventilator that is non-invasive. For those of you "medically inclined", the AVAPS has a tidal volume, rate, max/min IPAP (inspiratory pressure) and EPAP (expiratory pressure...sort of like PEEP). The pulmonologist ordered a gazillion labs to make sure that some other medical problem (besides my ALS, asthma or obstructive apnea) isn't contributing to my breathing problems. He thinks that it is likely a combination of my ALS and my asthma. So, I get to start on nebulized steroids and long-and short-acting bronchodilators.
My balance sucks at times and my legs just feel weak after I walk. I am using my wheelchair more when transportation allows me to take it 'with'. Unfortunately, our wheelchair van spent a month in New Whiteland with my buddy Kent in charge of getting it fixed (which he did....God love him!). We got it back last Monday and yesterday we drove it for the first time and the brake light is on and the brakes are NOT working right. SO.....here we go again.
The good news is that we are all healthy and Phillip is even here visiting this weekend. It is so great to have him around. He has become such a wonderful young man. He is eager to help and is always very polite. He calls Amy and me "darling" and "my dear" (and Christopher is "buddy", "bud" or "bro"). I can't believe that he will turn 21 in less than 2 months!
Catherine is finishing up her first year of her master's degree at ISU. She taught freshman English this semester and has gotten a real dose of "what is different between an 18 year old and a 22 year old"! Light years! And (as those of you old geezers like me know) there is more revelation to come! Look at the chasm between 22 and 30!
Christopher is eagerly awaiting the arrival of the "baby mantis[es?]" (plural...we have 5 mantis egg sacs in our yard). I'm just ready for us to have the last freeze solidly behind us so that the beautification of the yard can begin. I am so excited because Michelle and Aaron Hoard are bringing some of their church friends up on May 4th and will help get some of the weeds pulled, and some other yard "sprucing" done! (Thank you guys!)
It has been a beautiful week here in central Indiana, but alas, the second of two cold fronts in as many days will move through tomorrow and next week is supposed to be quite a bit cooler....but we'll warm up again soon after that! I'm ready for get-some-sun-on-the-deck weather!!! I am SO sick of being couped up indoors! I have some small flower plants started from seeds (too early) and a couple of geraniums to put out as soon as the frost danger is passed.
Well, that's about it for now. No philosophy, religion or general sappy sentiment...just love from 'me to thee'.
Friday, April 25, 2008
I spent the week before my daughter's June wedding running last-minute trips to the caterer, florist, tuxedo shop, and the church about forty miles away. As happy as I was that Patsy was marrying a good Christian young man, I felt laden with responsibilities as I watched my budget dwindle . . . So many details, so many bills, and so little time.
My son Jack was away at college, but he said he would be there to walk his younger sister down the aisle, taking the place of his dad who had died a few years before. He teased Patsy, saying he'd wanted to give her away since she was about three years old!
To save money, I gathered blossoms from several friends who had large magnolia trees. Their luscious, creamy-white blooms and slick green leaves would make beautiful arrangements against the rich dark wood inside the church.
After the rehearsal dinner the night before the wedding, we banked the podium area and choir loft with magnolias As we left just before midnight, I felt tired but satisfied this would be the best wedding any bride had ever had! The music, the ceremony, the reception - and especially the flowers - would be remembered for years.
The big day arrived - the busiest day of my life - and while her bridesmaids helped Patsy to dress, her fiancé Tim walked with me to the sanctuary to do a final check. When we opened the door and felt a rush of hot air, I almost fainted; and then I saw them - all the beautiful white flowers were black. Funeral black. An electrical storm during the night had knocked out the air conditioning system, and on that hot summer day, the flowers had wilted and died.
I panicked, knowing I didn't have time to drive back to our hometown, gather more flowers, and return in time for the wedding. Tim turned to me. "Edna, can you get more flowers? I'll throw away these dead ones and put fresh flowers in these arrangements." I mumbled, "Sure," as he be-bopped down the hall to put on his cuff links.
Alone in the large sanctuary, I looked up at the dark wooden beams in the arched ceiling. "Lord," I prayed, "please help me. I don't know anyone in this town. Help me find someone willing to give me flowers - in a hurry!" I scurried out praying for four things: the blessing of white magnolias, courage to find them in an unfamiliar yard, safety from any dog that may bite my leg, and a nice person who would not get out a shotgun when I asked to cut his tree to shreds.
As I left the church, I saw magnolia trees in the distance. I approached a house... No dog in sight. I knocked on the door and an older man answered. So far so good . . . No shotgun. When I stated my plea the man beamed, "I'd be happy to!" He climbed a stepladder and cut large boughs and handed them down to me.
Minutes later, as I lifted the last armload into my car trunk, I said, "Sir, you've made the mother of a bride happy today."
"No, Ma'am," he said. "You don't understand what's happening here."
"What?" I asked.
"You see, my wife of sixty-seven years died on Monday. On Tuesday I received friends at the funeral home, and on Wednesday . . . He paused. I saw tears welling up in his eyes. "On Wednesday I buried her." He looked away. "On Thursday most of my out-of-town relatives went back home, and on Friday - yesterday - my children left." I nodded."This morning," he continued, "I was sitting in my den crying out loud. I miss her so much. For the last sixteen years, as her health got worse, she needed me. But now nobody needs me. This morning I cried, 'Who needs an eighty-six-year-old wore-outman? Nobody!' I began to cry louder. 'Nobody needs me!' About that time, you knocked, and said, "Sir,I need you."
I stood with my mouth open.
He asked, "Are you an angel? The way the light shone around your head into my dark living room..."
I assured him I was no angel.
He smiled. "Do you know what I was thinking when I handed you those magnolias?"
"I decided I'm needed. My flowers are needed. Why, I might have a flower ministry! I could give them to everyone! Some caskets at the funeral home have no flowers. People need flowers at times like that and I have lots of them. They're all over the backyard! I can give them to hospitals, churches - all sorts of places. You know what I'm going to do? I'm going to serve the Lord until the day He calls me home!"
I drove back to the church, filled with wonder. On Patsy's wedding day, if anyone had asked me to encourage someone who was hurting, I would have said, "Forget it! It's my only daughter's wedding, for goodness' sake! There is no way I can minister to anyone today."But God found a way. Through dead flowers.
"Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."
If you have missed knowing me, you have missed nothing.
If you have missed some of my emails, you may have missed a laugh.
But, if you have missed knowing my LORD and SAVIOR, JESUS CHRIST, you have missed everything in the world.
May God's blessings be upon you.
THIS IS SO TRUE, BEING NEEDED IS SO UPLIFTING TO EACH OF US.
Thank you for blessing me by needing me and thank you for being patient with me as I learn to let you bless me. Love, Claudia
Wednesday, April 23, 2008
My voice is getting weak and my speech quite slurred. Even my familyand caregivers have difficulty understanding me now. I'd like someinput from those of you who can no longer speak, or from CALS whocare/have cared for PALS who can no longer speak.I have a tablet PC with a suped up speaker that I can mount to mywheelchair. I use a HeadMouse to move the pointer, a toe switch toclick, and speech software.I've tried using the tablet a couple of times after church. Unfortunately, trying to say anything other than pre-programmedgreetings (hello, how are you, etc. ) was too slow. Mingling afterchurch over coffee involves small talk that is a bit more personalizedthan the "hello how are you" phrases, but is usually fairly short -"how's your wife doing after her surgery" or "tell me about yourtrip". And then you move on to the next person. My experience wasthat people just weren't patient enough to wait for me to slowly type.Have you experienced this? How have you dealt with it?I can't use the tablet in the car because road vibrations make myheadmouse move slightly, which causes the pointer to bounce around. How do you give directions? How can I chat during my 4 hour drive toALS clinic?How do you communicate when you're on the toilet ("I need anotherwipe")? Or in the shower ("I have soap in my eyes")? Or in the hoyerlift ("My hands are caught") or in bed ("I'm cold")?How do you deal emotionally with this?
I have the same problem with my voice. My suggestion to you is a memory board. You can find it on the following web page. . . http://www.alscare.com/education.asp#memoryPrint out both the board and the instructions. It works great when you don't have your voice machine. As far as driving goes I bought my wife a GPS and I gave up on trying to give directions while we drive. It's too distracting for my wife. And dangerous. Sorry to hear that you are having trouble. I wish we all had a miracle cure.
I wish I had an easy answer for you. Unfortunately every device I've come across has all those problems. I have learned to be an excellent listener. A lot of the time after I get home from a visit I will email the person with all the things I wanted to say but couldn't. Also, it helps if you or your caregiver reminds the person your speaking to to ask yes and no questions. Another thing I do is if, for example, I'm going to church. I will print a paper for my caregiver of things I would like to say to specific people. As for personal needs you really have to rely on your caregiver to know your signals that you need something. They pretty much need to anticipate your needs. I've learned to accept that I can't do or say everything I want and I just have to let go of it. It takes lots of patience on both sides.
I know exactly what you are saying and one thing i can tell you is what worked for me was i had my doctor write me out a prescription for xanax and it helped me enough to the point that i could deal with handling people moving on with the conversation while i was still on the first topic.I would go back to it and if they acted like it bother them i would just act like i knew what i was talking about (which i did) and smile at them. Then it was up to them to remember and put my response with the topic that it went with. After a couple of times of doing that and i learnt who my true friends were and who was rasied right to go back and be cool about it. Does any of this make sense? And i will be honest a couple of times i have asked them 'If you were sitting in my chair would you want to be treated like you just treated me; being rude and rolling your eyes and mumbling under your breath because let me tell you that isn't very nice?!" After i done that a couple of times then they started slowing down which allowed me to get in and follow along with the conversation.I have made quite a few friends like that and i have lose a few too!!I hope i have helped a little bit.
Monday, April 14, 2008
So far, Christopher is being super good....we are laying in my bed watching "Sprout TV". I am grateful for every minute he cooperates!
Poor Amy is miserable. Hopefully the motrin and phenergan suppository will help her rest and ride this out.
Please pray I don't catch the bug. I've been a maniac with antibacterial wipes and alcohol hand gel, but there's only so much you can do in a small house with sick people nearby.....
The good news is that I CAN still walk, and get to the bathroom by myself, and feed myself. I don't know how God's going to fill in the gaps when I get to the point where I can't take care of myself at all... let alone Christopher and Amy. It is scary for me.
If you have ALS and you have a family caregiver, consider how blessed you are....what's more, if you have a family caregiver who allows your spouse to work and maintain a relatively "normal" family life (kid's ball games, shopping, work, eating out) you should consider how much MORE blessed you are!
Saturday, April 12, 2008
And Christopher is sick. He has a stomach virus. It reminds me of the 'bad old days' when he was in school and sick ALL the time. He had perked up a little this afternoon but still didn't feel well (this morning he was so weak I was worried). It is so hard for me to not be able to be the hands-on mom and to watch Amy take care of him (she does such a wonderful job, but I feel so helpless to help him). At least he let me lay down with him for a while this afternoon and rub his back. Here's his pitiful self about 5 PM today, trying SO hard not to cry and to be a 'big boy'. He'll always be my baby, though:
Monday, April 7, 2008
Today was beautiful too... probably the prettiest day of the three (warmer and sunny) but I spent it at I.U. Hospital seeing my neurologist and getting some pulmonary function tests. Now, I just want you to know that I have the coolest neruologist on the planet. He is awesome (and has been from 'day one' -- even though that day he told me I had ALS and not Myasthenia Gravis...which would have been my preference, had I been able to choose). Today's visit was no exception. He always displays great respect for my thoughts and has a great sense of humor.
After a discussion with Dr. P about my pulmonary function being affected by positon (sitting, laying down) a crack was made (I won't say by WHOM) about how function would be affected by being inverted...which led to a conversation about Stephen Hawking taking a ride on the "Vomit Comet"...the NASA aircraft that flys in a way that simulates weighlessness.
On my way out of the office, I was handed my obligaory stack of prescriptions. On top was this one:
Wednesday, March 19, 2008
Tuesday, March 18, 2008
God, You are so good. Your plans are bigger than I could ever imagine. You always honor Your promises. You know all about parenting and prodigal children, so you well know what parents go through. Your love knows no bounds, and You always look at my heart, not necessarily my appearance (although I know I must abstain from "the appearance of evil"). Because You love me, You will discipline me and Your Holy Spirit will convict my heart and speak to my mind to keep me in line. That's how I know I'm Your child. I know that You can change me and make me more like Jesus, if I will agree and not fight against Your will. I am willing Lord. Mold me and make me into that precious child and Christian light that You would have me be. In Jesus' name, amen.
Two Types of PeopleTGIF Today God Is First Volume 2, by Os Hillman03-18-2008
"O LORD, by your hand save me from such men, from men of this world whose reward is in this life" (Ps 17:14).
There are two types of people in the world. There are those whose activities are designed to generate a reward in this lifetime. And there are those who live to generate a reward when they meet our Lord in Heaven.
Not every Christian models the latter. How does one judge whether they are living for the future reward versus the earthly reward? There are several key indicators.
Future reward people tend to be givers. They make their time and resources available to be channeled for Kingdom purposes. They realize their sowing will ultimately be rewarded at the Judgment Seat of Christ where what they have done on earth will be judged and rewarded by God (2 Corinthians 5:10).
Future reward people live a life based upon obedience-based decisions. They don't make decisions based on their perceived outcome. They realize a decision based on obedience alone may not result in an immediate outcome. Jesus was obedient to the cross, but the immediate outcome was His own death on the cross.
Future reward situations show up in daily life in a number of ways. Perhaps a person has wronged you and God calls you to forgive and even bless that person without expectation of their response. Perhaps God calls you to sow money into a ministry or another person's life without expectation of return from them. Perhaps you are called to serve another person without expectation of any earthly reward. The situations we might encounter are unlimited.
Are you living a life based on a future reward, or short term reward? Today, evaluate how you make decisions and how you allocate resources. This will reveal whether you are a future reward Christian.
Tuesday, March 11, 2008
Monday, March 10, 2008
Amy, Christopher and I set out on our errands. No biggie. The gas station is around the corner and we pull up to the "Air" station only to realize that we have no quarters. I send Amy into the store with some one-dollar bills (not knowing how many "doses" of air the tire will take at $0.75 each), while I pull around to get 6 gallons of gas for over $20.00! Pumping gas is no fast-feat for me anymore, but I'm successful and Christopher is cooperative and calm while he waits. We pull back around to the "Air" station and Amy fills the tire. A belt squeals on the van, but we are so happy that it is running we don't even care!
A few blocks down the street we pull in to Aldi and, after a brief "conference" Amy and I decide that it will be easier for me to go in alone than for all of us to go (or for me to be left in the car with the "chatty one" who will tire me out making me talk....try telling an autistic kid to be quiet when their world revolves around repeating the same phrase over and over and over until you FINALLY repeat it back -- so they can move on to the next cycle). Aldi goes well and Christopher waited so patiently that Amy asks, "Christopher, would you like to use your McDonald's gift card that Sarah sent you?" (as if she didn't know the answer to THAT question!). By now I'm getting tired. Stupid muscles. I haven't done anything! Why am I getting tired?!
As we approach McD's Amy asks, "Christopher, would you like to eat in?" This is followed by squeals of glee, as if the cacophony of sounds in McDonald's, enough to drive an adult mad, are somehow tolerable to an autistic 10 year old who can only see and smell a double cheeseburger (plain) and french fries.
We pull into the parking place closest to the door and, as ALWAYS, on the row nearest the building (NO ONE in their right mind would take an autistic kid to McDonald's and park where the enticing cheeseburger on the other side of the drive-thru lane is more important than the vehicle racing to get their "fast food"). Amy opens the sliding van door and Christopher falls out onto his hands and knees on the pavement between the two adjacent vehicles. The meltdown-to-be is short circuited by the amazing discovery of a crushed plastic pop bottle, complete with syrupy residue, on the pavement under the van. "PUT THAT DOWN!" is out of Amy's mouth before I even know what has happened. But the drama has begun. Although a meltdown has been avoided by the fortuitous find under the van, the temptation is just too great, and as soon as he has stepped onto the sidewalk, Christopher once again drops to his hands and knees. People are noticing now. The girl on her smoke-break from inside Mc D's, crouches on the sidewalk with a look of puzzlement. A young woman in a vehicle is so focused on the spectacle that she forgets to look as she starts to back out of her parking space and nearly hits one of those "fast food" fast-drivers racing for the drive-thru.
Somehow, we manage to survive our 15 minutes of fame and the beeping and yelling inside this "restaurant" (I think that is stretching the definition of the term just a tad). My comment about the depth of the gene pool inside Mickey D's on this particular visit will go undocumented.
Three simple errands. I feel as if I have just run the stairs at the RCA dome 50 times as fast as I can. My feet flop as I walk, feeling like "flippers" at the ends of my legs. I hold on to things as I move to get back into the car and when I get out once we get home. Now it is time to take the groceries into the house. Amy carries them while I watch Christopher stomping happily in the slush in the driveway. Amy returns, announcing "I sat the groceries on the table and I'll take the stuff to the freezer (in the detached garage) in a second. I'm gonna let him play until he gets cold and gets it out of his system." In my stubbornness, I decide that I can take the bread to the freezer while they play, so I get the key to the garage, carefully walk to the door and unlock it. Just as I'm placing the bread in the freezer I hear, "Do you have a house key?!" "No.....the door is unlocked," I reply. "Not anymore!" is all I hear Amy reply. Christopher, in 0.16 seconds has managed to reach inside the door, lock it and slam it shut. Great. I'm tired. He's now wet from slush and we're locked out of the house and the sun is setting.
"Sharyll, do you think you could come over and bring your spare house key. Christopher's locked us out," Amy says, as I thank GOD for cell phones. So, now it's time to entertain the autistic kid until we can get back in the house. I know... let's shovel slush! Great fun....or not so much. Mostly, Christopher watches Amy shovel while he throws ice chunks, getting colder and wetter by the minute. After what seems like years, I venture to ask the question on both Amy and my mind "Hey, Amy. Sharyll knows that we're locked OUTside, right?" Amy, in her ever-quick wit answers, "I have a vision of her knocking on the front door" We laugh, but we're all getting colder and Christopher is now wet from head to toe, his jeans, coat and mittens soaked. He is no longer enjoying this little "adventure". Just as Sharyll arrives, Christopher can take no more and the meltdown ensues. All 110 pounds of him falls to the ground as his wet limbs flail and he tries to kick, hit and bite Amy (all for trying to help him get up!). Sharyll unlocks the door while I try to stay out of harms way and we all go inside. Christopher is stripped of his soaked-to-the-skin clothing and we start a load of laundry. I can finally put the milk away.
Wednesday, March 5, 2008
I know He can..... he has before....
But I didn't want you all to think I was some perfecto person of faith...I get scared, anxious, worried, overwhelmed and (yes) FREAKED OUT sometimes too. Today is one of those days!!!
Thanks for praying with me. I know God can move mountains, but I'm not so sure about bureaucratic FUBARs! LOL!!!
Tuesday, March 4, 2008
Picked up and dusted off their swords
Vowed to set the captive free
And not let satan have one more
What if the Church, for heaven's sake
Finally stepped up to the plate
Took a stand upon God's promise
And stormed hell's rusty gates
What if His people prayed
And those who bear His name
Would humbly seek His faith, yeah
And turn from their old ways
And what would happen if we prayed
For those raised up to lead the way
Then maybe kids in school could pray
And unborn children see light of day
What if the life that we pursue
Came from a hunger for the truth
What if the family turned to Jesus
Stopped asking Oprah what to do
What if His people prayed
And those who bear His name
Would humbly seek His face yeah
And turn from their own way
He said that He would hear
His promise has been made
He'll answer loud and clear, yeah
If only we would pray
If My people call by My name
If they'll humble themselves and pray
If My people call by My name
If they'll humble themselves and pray
What if His people prayed
And those who bear His name
Would humbly seek His face, yeah
And turn from their old ways
He said that He would hear
His promise has been made
He'll answer loud and clear yeaah
If only we would pray
(Choruses and bridge ad lib)