To Walk and Not Grow Faint

My Story

2011-11-16T15:01:00.001-05:00

Update 12/7/2011 since I wrote the entry below I have lost my remaining ability to walk. Now I can stand and assist with transfers between my wheelchair and my lift chair or between my wheelchair and the shower chair or commode only.

It felt like things might just be coming together. After a childhood marred by alcoholism and abuse, two failed marriages and struggling to be a single mom to my three children with special needs, things were looking up. I had my dream job as a flight paramedic and was finishing my nursing degree. Finances were finally becoming something that wasn’t a constant source of stress. We lived in a nice neighborhood in a house that was big enough to meet out needs. My children were happy. I was happy.

And then, like the image in a fun-house mirror, my world began to distort. I started slurring my speech. OK, I was just tired. Really tired. Working 24-hour shifts on the helicopter and 12-hour shifts in the Emergency Department would make anyone tired. Add to that the stress of IEPs, therapies, specialists, equipment...well, you get the idea. Maybe no one noticed the slurring.

But someone did notice. To oblige them, I went to my family doctor who ordered an MRI to rule out “the really bad stuff”. GREAT NEWS! My MRI was clean. But my speech was worse. The neurologist ordered a slew of other tests. Everything came back normal. GREAT NEWS! Except everything wasn’t “normal”. The doctor still thought it looked like I had a type of Myasthenia Gravis, in spite of test results to the contrary. Regardless, something was wrong. I searched my symptoms on the internet. What I found wasn’t good. It was very NOT good. “Nah. I’m just tired.”

Time to get a second opinion.

The hammer dropped in a small exam room at Indiana University Hospital. The second neurologist reviewed all the previous testing, did his exam and then said words I’ll never forget: “I don’t think you have Myasthenia Gravis. I think you have Motor Neuron Disease. Amyotrophic Lateral Sclerosis. ALS. Have you heard of it? Sometimes it’s called Lou Gehrig’s Disease.” Yes, I had heard of it. I read the book “Tuesdays With Morrie” through tear-filled eyes years ago. I knew what ALS meant. Death. Death, preceded by progressive loss of all voluntary muscle function -- but with my mind and sensation fully intact. “The average life expectancy for someone with ALS is 3 to 5 years after diagnosis.” I don’t remember what else that doctor said.

Turns out that I didn’t die in “3 to 5 years”... I was diagnosed 6 years ago. My progression is slow, and since my diagnosis I’ve found that while indeed many people with ALS (pALS) die within a short period of time after diagnosis, a decent percentage live well past 5 years and a select few live a decade or more.

My life now looks nothing like it did when I was diagnosed. I managed to keep flying for 14 months after my diagnosis, only quitting then because my speech was becoming slurred enough that I was afraid it would endanger my patients. I worked in the ER and taught American Heart Association classes for a few months more, but ultimately the career I loved became incompatible with my disease.

I could tell you that I quit and never looked back...but I’d be lying. You see, I didn’t just have a career in emergency medical services. It was a fundamental part of my identity. I can’t remember a time before I wanted to do something “medical”. Now, that was gone.

It’s been 6 years since my diagnosis and I’ve been medically retired for 5. The first year after my “retirement” (at age 44) I was still healthy enough to do things like visit the Smoky Mountains with my son, but like everyone with ALS, my progression has been in a direction away from “normal” functioning.

A typical day for me now consists of awakening and having a caregiver turn off my breathing-machine and the luxury of a cup of coffee in bed. I check email, Facebook and maybe the news while my (and my son’s) caregiver readies things for my shower. I’m one of the blessed with ALS. I can still take a shower (albeit, laboriously). Many people with ALS don’t have the logistical support to get regular showers (either they don’t have the home modifications and/or don’t have the equipment and/or don’t have a caregiver willing or able to shower them). I’m still able to walk, using a walker, the few steps from my bed to my recliner. That’s where I spend most of my day, my face illuminated by the glow of the computer monitor. My computer is my window to the world.

I go on virtual, vicarious vacations courtesy of my friends’ postings on Facebook. I see the weather out the window. I shop on the internet, play games, do digital scrapbooking, write the occasional blog entry -- but none of that feels remotely like my life before ALS. Now, instead of hearing the radio blare a dispatch for a scene flight, I gaze at a scene on my desktop. Instead of donning a helmet, I don headgear for my non-invasive ventilator. Instead of learning the most up-to-the-minute medical technology, I learn the latest trick for scrapping on Photoshop Elements. Gone are the adrenaline-rushes. Now “rush” is not a word in my vocabulary (the faster I try to go the more my muscles rebel).

So, my new motto is the saying by Joseph Campbell, “We must let go of the life we have planned, so as to accept the one that is waiting for us.” There’s one thing wrong with that phrase -- it makes it sound like you do it once and it’s DONE. Truly, “letting go” of the life I had planned is a daily journey that must be begun again every day. Lamentations 3:22-23 says, “The steadfast love of the Lord never ceases; his mercies never come to an end; They are new every morning; great is your faithfulness.” It is probably not coincidence that the title of the book of the Bible where that verse is found means is “the passionate expression of grief or sorrow”. Every day I grieve the loss of my former-life and look to the “new normal” that God has for me.

God did not will that I have ALS. But He will not let my suffering be wasted. Nor will he waste yours. There’s nothing wrong with asking for suffering to be taken from us. Christ did it on the cross when he said, “Father, if you are willing, take this cup from me.”

I read a phrase on a friend’s Facebook status recently that said: God answer prayers in three ways: “God says yes and gives what you want..God says no and gives you something better…God says wait and give you the best.” She lost her husband to ALS this year but she knows that God is greater than ALS. Sometimes our prayers for an end to our suffering are answered with a “no” or a “wait”. The ultimate healing is the one we’ll receive when we see Jesus. In the mean time, we live.

The 11-year-old daughter of a friend of mine was just diagnosed with metastatic brain cancer. This child faces a regimen of therapies that may leave her only slightly better off than if she succumbed to the disease she is fighting. If she lives, she may be left blind, deaf or with brain damage. The torment her parents are facing is beyond my comprehension. How humbled I was to read her mother’s words, written while her precious child still lay in the children’s hospital, recovering from brain surgery: “I may receive odds or diagnoses I don't like but the mission remains the same, to bless, love and reflect Christ. I can walk in the moment and hold fast to my mission.”

Ultimately, holding fast to our mission is our goal. As followers of Jesus Christ we are called to love and serve Him…whether we are in sickness or in health, in riches or in poverty. Every morning, as a new day dawns, I thank God for my life and ask Him to show me how to magnify Him through it. His grace is manifest in my weakness and His mercies are new every morning.

Heart Wanted....

2011-09-14T12:59:00.000-04:00

In Acts, David is referred to as a "man after God's own heart". David was a king, a poet, a murderer, a warrior and a child-victor over Golliath. David was far from perfect. But more than anything, David was after God's heart. He didn't want God's power or His favor for his own gain. David wanted God's heart. In Psalm 139:23 David writes "Search me, O God, and know my heart." It is no coincidence that those words were followed by a plea for God to reveal to him any "wicked way[s]" and for God to lead him "in the way everlasting."

I started a Bible Study this morning about David. At the conclusion of the lesson, we were given a sheet of paper, blank save for a giant heart drawn on it. The assignment: examine your heart right now and depict it in some way (words, drawings, colors). There were many heavy hearts at our table. A mother who's son has turned his back on God and his family, a woman who's husband died abruptly from cancer this summer, another friend who is separated from her spouse, and Amy and I, dealing with the weight of autism, Fragile X and ALS.

I glanced around the room while the women were working on their "hearts" and I saw many tears. Sometimes it is easy, when your heart is heavy, to think that yours is the only one. That "everyone else" has a rosy life. Some of us even pretend that it is rosy when, in fact, it isn't. Sound familiar?

Some days I feel as if my heart is a pulverized, unrecognizable mess. Yuck. Got a visual? I do. The thing God told me today is that he still wants it...desires it...is passionate about it...all of it. So, today I pictured myself holding a tattered piece of blood-dripping meat, nearly unrecognizable as the organ it was created to be, out to my Father God, who lovingly cradled it in his outstretched hands and smiled as a child would when they are reunited with a loving parent: unmitigated joy.

Father, help me to remember that while, like David, I'm far from perfect, that what you want is all of my heart. Help me to remember that, like Abraham, who believed and it was "credited to him as righteousness," you look not on my brokenness or my sin but on the righteousness of Your Son who died to gain that righteousness for me. Thank you, Father, for that most wonderful gift! Lord, search my heart and renew a right spirit within me. Lead me in the way everlasting. Amen.

~Claudia

It's Reality TV...for dogs

2011-08-13T17:56:00.000-04:00

Stitch loves looking out my window. Earlier this summer, he REALLY liked it. It's like reality TV...for dogs:

Feast or Famine

2011-08-05T15:51:00.000-04:00

This winter I pretty much did nothing since cold turns me into the tin man without an oil can. This summer I've had so many wonderful visitors that I haven't had time to blog. The summer rush is over and so I want to share some of what we did this summer.

Stitch got a bath. A great excuse to play with the hose! More of our summer activities to follow. Stay tuned.

What A Wonderful World

2011-06-16T17:27:00.000-04:00

This month's Good Housekeeping has a poignant article about a family affected by Fragile X Syndrome. For the first time since my kids were diagnosed (the first in 1989 before the gene was even discovered), I found an article that accurately captures the life we live. I've told people for years how blessed I am by my children, and it's obvious to see that it is sometimes a challenge. What people don't always see is the connection between the two extremes.

Take a few minutes to read the Good Houskeeping article. Then let me know what you think.

"Then I think to myself, 'What a wonderful world...'"

You're kidding, right?

2011-03-29T15:36:00.002-04:00

A while back I made an appointment to get resting hand splints. Common in ALS paraphernalia, they are just what they sound like...splints for your hands while you rest (in this case, sleep). The intention of the splints is to keep your hands from becoming contractured, like this:

I knew I might be in trouble when, at the "fitting" appointment, the clinician brought in a splint similar to this:

See the problem with that????

After returning home and finding what I needed online, I emailed the tech to have him order some resting hand splints, which he did. Today I went in to have them "fitted" and they were obviously too large. After watching him fumble with the velcro (including trying to attach the "fuzzy" side of a strap attachment to a non-velcro part of the splint) and try to convince me that they weren't really too large (they extended well over an inch beyond my longest finger and were a good 1/2 inch wider than the widest part of my palm), I finally politely asked that he order the next-smaller size. Now, this is a certified orthotist, professional, presumably college-educated person... but when he went to put the splints back in their respective (right, left) boxes he held up the splints, looking at them, turning them around and upside down, trying to tell which was which.

Not a huge confidence builder. Hopefully, I'll get the smaller size and be all set next visit. Amy and I got a good laugh out of the whole thing! Just another day-in-the-life.........

UPDATE: TWICE IN ONE DAY!

I need a particular piece of equipment to adapt my surroundings. I know what I need. I asked a "patient services/equipment" specialist at a national organization about where/how to get it (loan closet). They referred me to a therapist who deals in that sort of equipment. NEITHER of them had any clue what to tell me to do/what I needed specifically. I went online and found PART NUMBERS and photographs for what I needed. Took me 20 minutes...tops. Moral of the story: you're on your own. I'll be pleasantly surprised if the loan closet has what I need.

I wonder why I don't participate in the national organization's fundraising activities??? Hummm.

Tithing: Test Me In This -- A Book Review

2011-01-06T17:09:00.000-05:00

Tithing: Test Me In This by Douglas Leblanc is part of the “Ancient Practices Series” of books. Other books in the series include – Sabbath, Fasting, Pilgrimage, Prayer, The Sacred Meal, and the Liturgical year.

Malachi 3:10 has been the subject of much debate throughout history and among many religious traditions. In the introduction to Tithing, Phyllis Tickle, General Editor of the “Ancient Practices Series”, writes that rather than a theological or historical treatise on tithing, Doug Leblanc has “…chosen to discover men and women who…tithe and are willing to say…why they do so.”

As I started this book, I looked forward to inspiring stories of how God has used tithing to bring people closer to Himself. What I found mostly was, in fact, largely biographical information on the persons featured in the book, with varying degrees of reference to tithing and it’s impact in their spiritual lives. While some of the stories were inspiring, some were hardly recognizable as being on the topic at all. A large proportion of the book is the account of Christians from the “social justice” perspective, some bordering on liberation theology. As a conservative Christian, I was pleased to see a chapter on Randy Alcorn and his views, although even that chapter felt like it was more about sacrificing for a principle (pro-life) than tithing.

Overall, I was disappointed in the book. Tithing is a joyous gift from God allowing us to participate in showing His love to a hurting world. I had hoped that Tithing would be more of an encouragement to non-tithers, enticing them to “…test [God] in this…” (Malachi 3:10). Instead the book felt like a series of biographical stories of community organizers and how their ministries were changed by an attitude of giving. I can’t help but feel that the average person would be more inspired by stories of individuals or families and the impact that tithing had on their lives.

Disclosure of Material Connection: I received this book free from the publisher through the BookSneeze.com book review bloggers program. I was not required to write a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255 : “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

God Sends Comfort

2010-12-19T18:10:00.001-05:00

My mother passed away last weekend, and her funeral is tomorrow in Houston. The grief of not being able to attend her services (I'm in Indiana, the funeral is in my hometown, Houston, TX) has palpable. Today, however, I opened an email devotional and read this beautiful prayer:

Dear God, You know my heart and my heartaches. You have showered me with blessings and carried me through the valley of pain and sadness. Thank you for the godly influence of special people in my life. Thank you for those who pray for and encourage me. I even thank you for the hard times and trials I have been through, for they have strengthened my faith. I praise you for giving me a spirit of hope, love, and acceptance, rather than allowing me to become angry, bitter, and downcast. I praise you God, from whom all blessings flow. May I, in return, be a blessing to you. In Jesus' name, amen. (from TGIF, Os Hillman, www.church growth.org)

Seemed to fit perfectly with my thoughts today. Love, Claudia

Friendship

2010-11-23T16:13:00.000-05:00

ALS: From "my side of the fence" it doesn't seem that bad, when I take it one day at a time. I am just grateful that some people are willing to endure the pain and sorrow that is required to love me through this. So many get a glimpse of the ugliness and hurt of ALS and turn away to protect themselves. I don't take friendship for granted anymore. People who are my friends now have chosen to be my friends in spite of what it might cost THEM to do so.

If you're one of those friends, THANK YOU. Love, Claudia

Never Give Up

2010-10-24T00:18:00.001-04:00

5 yrs ago I was diagnosed with ALS. The man I thought I loved said we'd "fight it together". Tonight he got married. I'm fighting ALS without him.

Never give up.

- Posted using BlogPress from my mobile device. Please pardon typos!

I Need Fuel

2010-10-13T15:07:00.001-04:00

I follow a wonderful blog called “Enjoying The Small Things” written by a phenomenal photographer, writer and mom, Kelle Hampton. Kelle’s has two beautiful daughters, the youngest of whom has Down Syndrome. Kelle writes of daily activities and she does so in a way that never ceases to make me smile. She’s definitely a “glass half-full” kinda girl!

Yesterday, Kelle wrote about fuel vs. filler in life. I encourage you to read about it HERE.

I’m sitting at my desk, sick with a URI, tallying up hundreds of dollars in medical bills and listening to the sound of my IV pump steadily humming as it infuses my liquid immunity (IVGG). I need some fuel. Any ideas?

Home School is Cool

2010-10-12T19:01:00.001-04:00

This fall Christopher returned to public school. I will be the first to tell you that I think that the faculty, staff and administrators we are dealing with are phenomenal. They really are! I am grateful for thier genuine care and concern and their talents and professionalism. Even the bus driver is Heaven-sent!

All that said, I will always be a fan of home schooling. I know that it isn’t for everyone but in Christopher’s situation it was a God-send.

Recently we had a retired educator in our home. They made no bones about how delighted they were to hear that Christopher is back in public school. OK. I’m delighted, too. It was the right thing to do and the right time to do it. What bothered me is that they went on to say that they had some home schooled students in their (high school level) classes and that those “home schooled students were socially retarded.” They further mused, “They didn’t know how to not be the center of attention.”

There were a couple of things that bugged me about these statements. Beyond the use of the R-word, there is the fact that when push-comes-to-shove, the best most educators can do to discredit home schooling is to harp on home schooled kids’ social skills.

It is a proven fact that home schooled kids do much, much better on average academically than their public school peers. [1] [2]

Socially, home schooled kids are DIFFERENT, often BETTER and certainly not “retarded". Home schooled kids may have no idea how to raise their hand to talk, or “line up with a buddy”. They may not understand the ins and out of demerits, attendance policies and dress codes. I would venture, however, that most home schooled kids are well-behaved, polite and articulate. They are used to interacting with adults (ironically, they grow up to BE adults, interacting with other ADULTS!). As for “being the center of attention”… that seems somewhat subjective. I can see how it could be annoying for a teacher in a classroom with 25 students. I’ll give them that, although I haven’t seen that among the home educated children that I know.

In my mind, it all comes down to one thing: Does the education prepare the kids to go out into the world and be responsible, contributing members of society? This should be the goal of public, private and home educators. In my estimation, most home school parents do a fabulous job of meeting that goal.

Thankfully, the educators we are dealing with now are aware of the value of Christopher’s home schooling. They know that we’re on the same team!

If you’re a public or private educator: Thank you for your service and dedication. If you’re a home school parent: Rock on!

Technorati Tags: home schooling,teaching,education

Giving

2010-10-11T19:04:00.001-04:00

It feels wonderful to give! I don’t have too much to give (materially) anymore but when I do get the chance it feels great! Do you give?

Most of you know that I’m a pretty outspoken conservative. I think the government has WAY over-reached it’s purpose and that our country is suffering badly as a result. I join many of my friends in ranting at the “government is the answer” mentality. Tax-and-spend isn’t fixing anything and it is creating an entire class of people who are dependent on the government when they ought not to be. That said, there are people who cannot self-sustain for reasons such as disability. We need to help those who cannot help themselves and teach those who CAN to do so!

Now, before you go labeling me as a hate-mongerer or racist, let me explain. I’ve heard the saying “If I give my money to you, it’s charity. If you take my money and give it to someone else, that’s robbery.” I agree with that statement. BUT, part of the reason that the government has injected itself in every arena of life is that people have neglected their charitable obligations. That’s right. I said OBLIGATIONS. In the Old Testament, God commanded a tithe. Hindu Sikhs widely practice the tradition of giving ten percent. Muslims are obligated to give Zakat, to help care for other Muslims in need. The New Testament encourages cheerful giving, caring for others and charity. In short, most of us are told to give! Even in ancient Greece, the concept of “pay-it-forward” was used to encourage giving (it obviously wasn’t called that but the principle is there). Benjamin Franklin referred to the principle in a letter to Benjamin Webb in 1784. He wrote:

I do not pretend to give such a Sum; I only lend it to you. When you [...] meet with another honest Man in similar Distress, you must pay me by lending this Sum to him; enjoining him to discharge the Debt by a like operation, when he shall be able, and shall meet with another opportunity. I hope it may thus go thro' many hands, before it meets with a Knave that will stop its Progress. This is a trick of mine for doing a deal of good with a little money.

It’s not enough to rant about your taxes being too high. There are people out there who legitimately need help. SOMEONE has to help them. Won’t you be the one?

Technorati Tags: Tea Party,conservative,taxes,charity,tithes

The poorest among us are rich compared to most of the world. Find a worthy cause or neighbor in need and GIVE. It feels GOOD! If we do our part, we can put the Welfare State out of a job! Let’s try!

ALS Medical Alert Statement

2010-09-02T13:39:00.000-04:00

Stolen from another ALS Blogger

Perhaps we need some medical alert bracelets for people with ALS. We could call them I-Have-All-My-Marbles tags.

"I have ALS. You probably don't remember what this means because you were taught it is 'rare' so you didn't pay all that much attention in school. Guess what. It's not so rare. I have it. I have ALL of my marbles. Every last marble. It's simply a little difficult to understand my speech, so please read my lips and listen closely when I speak. Remember, I have all my marbles. My neck is extremely weak. If you move me, please remember that my head full of marbles needs some support because my neck cannot hold it up. I am perfectly capable of making all of my own medical decisions even though my speech reminds you of someone who is sloppy drunk. I have all my marbles. Please talk directly to me. My caregiver will assist with 'translating' my speech for you, but please speak to me. My ears are good. I have all my marbles. I probably have more marbles than many people in this room."

Humorous, yes. Serious, yes. Help raise awareness of ALS. Tell your friends that we have all our marbles (or all that we started the ALS journey with, at least!!)~!

2010-07-09T00:57:00.001-04:00

Birthdays are things that most people take for granted. I just had one and it was a wonderful day and I didn't take it for granted!

I try to live with a sense of gratitude and I've tried to teach it to my kids. I think I've succeeded with Christopher. Today, Vicki got him one season of "Emergency" DVD's. He must have thanked her 15 times. Of course, he did expect her to say "you're welcome" each time (she did).

Vicki and I went to Olive Garden to celebrate my birthday. Amy and Christopher came and picked us up and the first thing Christopher said was "I missed you" and then "I love you all." Those are beautiful words, regardless, but again, I don't take them for granted. So many parents of kids with autism never hear "I love you" from the mouths of their kids. Each time I hear it, it's a gift!

Thanks for being my son, Christopher. You ROCK. BTW, his Presidents poster now has a picture of "President Christopher Burrows" on it after B.O. In the picture, Christopher is wearing those "Groucho Marxx" glasses... hysterical. He cracks me up!

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A Red-Letter Day

2010-06-06T16:51:00.001-04:00

It has been a wonderful day! All three of my kids are here and we’re celebrating Phillip’s birthday this evening. He’ll be 23 on June 16th, but he’ll be in Michigan with is dad then, so we’re doing his birthday dinner (his favorite: chicken, potatoes and “greeny beenies”) early (Amy has this one perfected!). He has a “Handy Manny” cake and sparkling grape juice, to toast the event.

We ALL went to church this morning together (So, Christopher didn’t make it through the sermon. So what?) and then we went to IHOP for lunch. That was a milestone… we went to a sit-down restaurant (including waiting 20 minutes for a table…who knew there were big sports tourneys in town this weekend?) and NO ONE HAD A MELTDOWN! This is a FIRST. Something most families would take for granted…going out to eat with all their kids…was a momentous occasion for us! I am so happy!

2010-05-24T19:00:00.000-04:00

I am writing to nominate Amy Stockwell for Sainthood. As documentation of her worthiness, I submit the following video of a trip to the store. This trip to the store went WELL. Many do not. Maybe this video will give you some idea why she is truly deserving. Thank you for your consideration.

Sincerely,

Claudia
(Amy’s OTHER “joyous burden")

Happy Mother's Day

2010-05-08T19:50:00.001-04:00

One of my favorite blogs is offering a neat bit of SWAG for Mother's Day and I just have to share! Check out her great blog, too! Leelou Blogs Lots of great stuff........enjoy!

Happy Mother's Day!

We're Ready For Summer!

2010-04-26T13:37:00.002-04:00

In the midst of Loss

2010-03-20T11:12:00.002-04:00

This morning I woke up thinking about what happens today. Today, my friend Kent is laid to rest. He was a protector and nurturer for our family. God used him mightily to be Jesus to us in so many ways. I wondered what we’ll do without him. I have faith that God is great and will sustain us…but I also know that God won’t violate free will…and people are somewhat (!) less reliable than they should be. It’s not enough to believe in God. Even Satan does that. We have to believe God…believe He is who He says He is and that He can do what He says He can do. I’m trying. My prayer this morning boiled down to:
"I do believe; help my unbelief." Mark 9:24 (NASB)
Genesis 15:6, Romans 4:3, Galatians 3:6 and James 2:23 all say that Abraham believed and it was credited to him as righteousness. I do believe; help my unbelief. God, help me to believe YOU and to not put my faith in people. In spite of our human frailties and unfaithfulness, YOU are faithful. Amen
In my email box this morning was a wonderful devotional that speaks to my feelings today. I share it with you in hopes that it blesses you, too.

The Anguish of Faith
TGIF Today God Is First Volume 1, by Os Hillman
03-20-2010

"Do not hide Your face from me or I will be like those who go down to the pit." - Psalm 143:7b
Of all the biblical characters, David gives us a glimpse of a man who walked with God with great emotion in victory and in defeat. David never lost a battle throughout his many years of serving as king of Israel. In many of the Psalms, David often lamented about the difficult places where God had placed him. He talked of his enemies and the need for God to deliver him. He talked of God's everlasting love for him. How do you suppose David came to this understanding after years of being sought after by King Saul who wanted to take his life? His years of turmoil within his family gave him many reasons to lose all hope in a loving God.
David often began his Psalms in a place of discouragement and loss of hope. But he never ended one Psalm in defeat. He always came to a place of victory in God by the end of the Psalm. David always placed his life in God's hands, knowing He would care for him.
Let the morning bring me word of Your unfailing love, for I have put my trust in You. Show me the way I should go, for to You I lift up my soul. Rescue me from my enemies, O Lord, for I hide myself in You. Teach me to do Your will, for You are my God; may Your good Spirit lead me on level ground (Psalm 143:8-10).
It is okay to feel discouragement. It is part of the process of grieving and working through those times of pain. But God wants each of us to allow Him to walk with us in these places. If you find yourself in one of these places, do what David did. Ask God to show you the way and let Him bring the word of His unfailing love to you.

Love, Claudia

In Memory: Kent Parker (June 25, 1966 - March 13, 2010)

2010-03-14T12:56:00.001-04:00

I’ll miss you, Kent. You were a shining example of how to keep smiling in spite of ALS. Your sense of humor brought joy to my life. Your loving concern for my family was amazing. Thank you for all that you gave us. You finished well, my friend. I will see you again through the grace of God! Hallelujah!

Preaching to myself…

2010-02-26T17:07:00.001-05:00

I just received an email from a dear friend. She is in the midst of a significant family crisis. Her husband is very ill and is in the hospital, she is raising her disabled grandchild and she has serious, chronic health problems of her own. People tell her “Let me know if you need anything” but then they walk away.

Why do people do that? I have a theory, and it is borne out of my own life history…I’ve done it. I didn’t intend to be insensitive, but I was nonetheless. Admittedly, I was busy (working 2 or 3 jobs, parenting special needs kids as a single mom). Sometimes I would help but sometimes I didn’t see how I had the time to do anything helpful. Even when I knew that there was likely nothing I had the ability to do, I’d say “Let me know if you need anything” anyway. Why? Honestly, in retrospect, I think it was because it made ME feel better! Well, guess what? It wasn’t supposed to be about ME!

James 2: 15-16 says, “Suppose a brother or sister is without clothes or daily food. If one of you says to him, ‘Go, I wish you well; keep warm and well fed,” but does nothing about his physical needs, what good is it?” I’m thinking that saying “Let me know if you need anything” and walking away is essentially the same thing as James speaks of in this passage.

I’m thankful for the opportunities to help that I DID seize upon , and saddened and ashamed for the times when all I did was spout a platitude. Hurting people don’t need platitudes. They need love that comes with hands and feet.

Lord, help me to see the people around me who need something and help me to GIVE IT. Help me to be love in action.

Unexpected Blessings

2010-02-25T12:56:00.001-05:00

Recently, in response to an article in the Indy Star asking for Indiana families, we were nominated for Extreme Makeover: Home Edition (EMHE). While it would be unbelievable if we were chosen, the real blessing has been all the love and support I’ve received. A couple of people have even shared their nomination letter with me and I am humbled and honored. Most people live their whole life without those around them telling them what they love about them. Then at the funeral or memorial service, people line up to say nice things about them. Why not tell them NOW? I’m not sure I deserve the credit I’ve been given. I just loved my kids and cared for my patients the best way I knew how. Still, knowing that a few people thought that I have done a good job means so very much. Who do you need to tell?

Thank you for loving me. Makeover or not, God is meeting our needs, challenging me to be a better person and giving me opportunities to show love to others.

I am blessed!!

Another Snowy Night

2010-02-16T01:08:00.001-05:00

For the first time since I can remember we’ve had snow on the ground for more than 2 weeks without some sort of thaw. While I’m ready for the snow to go and summer to BE HERE, I am happy to see white instead of shades of grey when I look out my windows.

I haven’t been out of the house at all since December 5th. Honestly, I can’t believe that I’m saying that with so little emotion. It just is what it is. Christopher and I have successfully dodged all of the various bugs floating around (including H1N1) and for that I am very grateful! Add the difficulty of Amy trying to get us all into the van (is that “circus music” I hear playing?) in this frigid weather and it just seems like a no-brainer to STAY HOME.

Being home gives me a lot of time to think…maybe too much. I go to Facebook, check my email and try to spend as much time with Christopher as I can. Amazing how the day is filled with just that. Sometimes though, while perusing Facebook, I read of a friend from one of my “former lives” who has reached an important milestone: a wedding, a new baby, a new job, going back to school, a vacation.. and I feel like I am left behind. I envision myself in a little inlet on the bend of a river, where the water is still and deep. The river itself rushes by, being renewed and I tread water: watching. It is an odd feeling for someone who always was trying to swim faster, harder and stronger to meet the next challenge head-on.

Not that I don’t have challenges anymore. I have plenty…but I have lost the illusion that I have any control. I say “illusion” because I never HAD control. I just WANTED it!

I am thankful for the peace of God that indwells that still, deep place that I am. But sometimes, I just want to get into the rapids one more time.

Live For The Moment

2010-01-29T01:03:00.001-05:00

Live For The Moment, a new show on CBS, aired for the first time tonight. I DVR’d it (it came on at 8PM and that’s my time to spend with Christopher…tonight we watched a DVD on trains). I spent time with Catherine watching old A-Team reruns (need a laugh at those 80’s fashions?!). After Cat headed to bed, I turned on Live For The Moment.

Tonight’s episode was about a man with ALS who got to do some of the things he had always dreamed of doing, and along the way he taught some of his friends and family how to “live like you are dying.” As I watched the show I realized how incredibly blessed I am. No, I never got to be a fighter pilot or professional singer (two things I would have loved), but I did become a paramedic and RN and I got to care for patients in the helicopter. That was my dream and I GOT TO DO IT. Some days I’m all soggy-shorts over not getting to do it longer, but I GOT TO DO IT! I realize how many people never get to do what they love!

Now, I have the gift of ALS…which has given me so much perspective on the people in my life. My children are first and foremost and I am truly able to treasure each moment with them. As for my friends, the adage that people come into your life for a “reason, a season, or a lifetime” is SO TRUE. I used to fret over people that I had lost touch with through no fault of my own, or people who had just parted ways with me. Now I realize that they weren’t meant to be “lifetime” friends. Very few people are meant as lifetime friends, and the rare person who has more than one or two of those is rich indeed. I am rich!!

I am SO blessed!

What can you do differently in your life to live every day as if it were your last? What is truly important? What will matter in your life 10 months from now or 10 years from now or IN ETERNITY? Ask yourself that when you are all bent out of shape about something tomorrow, or when you are (intentionally or unintentionally) setting your priorities. You just might find yourself looking back with fewer regrets someday. THAT is a gift!

Love, Claudia

I Don't Understand

2010-01-15T23:51:00.000-05:00

There's something I just don't understand. Why did God give me a passion for emergency medicine, the ability to do it well and a desire to do medical missions only to allow me to lose the chance to go and help? Watching the coverage from Haiti makes me feel so frustrated. I could have helped. I want to help. Why is my mind fine and my body betraying me? I should be helping! I should be helping! I WANT TO HELP!

I have many friends and former co-workers who are already planning their trip to Haiti. I am envious. I feel so useless. I could help... I should be helping!

Then I realize that the world goes on and people will help and really no one will miss me or my contribution. This isn't about me. This is about the Haitian people. Poor, suffering people BEFORE the earthquake and now, literally in a living hell. I can pray. I can give up something and send a little bit of money...that's it.

Please join me in doing whatever you can (however small it might be) for the people of Haiti. Thank you!

Healthcare Reform: Real-life experiences to illustrate why I OPPOSE it

2009-11-20T15:01:00.000-05:00

Tomorrow the US Senate votes on cloture for the Healthcare bill. I am strongly opposed to the healthcare reform bills currently circulation because I don’t want the government any more involved in my life than it already is. The same bureaucratic rocket-scientists who brought you the IRS, Amtrak and the USPS want to ‘help’ with your healthcare. It sounds wonderful. You need a medical test or procedure? NO PROBLEM! It’s covered. But WAIT.
I have learned over the years that just because the government “offers” a benefit, it doesn’t mean you GET the benefit. How can that be? Do you have any idea how challenging it is to find a decent doctor that accepts Medicaid? Most aren’t taking any new Medicaid patients. But say you find one. Your child is disabled and needs “waiver services”… services that regular Medicaid doesn’t cover. “There’s an app for that!” You apply for the waiver and, after a barrage of paperwork and medical documentation, you are told that your child qualifies for the waiver! Great news, right? Not so fast. Your child qualifies but there are no slots available on the waiver. The government only funds x-number of slots and the only way that you get one is for someone currently on the waiver to “drop off” (move out of state – the benefits don’t follow the person – or die). So your child is place on a waiting list. You’re told they’ll “contact you when a slot comes open”. You ask how long the waiting list is and you’re told that people currently being placed on the waiver applied 10 years ago. TEN YEARS. So, those services you need are COVERED, but hopefully your kid doesn’t REALLY need them now. She’ll get them a decade from now. How’s that for service? BUT WAIT! There’s more…. Just because you finally get a slot on a waiver it doesn’t mean that there are WAIVER PROVIDERS in your area. What good is a therapist or service when the nearest provider is 2-3 hours away. But – the service is covered. A comfort, no?

Then there is the outstanding efficiency and customer service those bureaucrats are legendary for! Here’s an example from real-time, here in Delaware County. Because of our situation we are eligible for “PRIORITY” status for energy assistance. We called in September and were given an appointment in early November (“priority”, huh?). All adults permanently residing in our home were required to be present for the appointment, which was conveniently scheduled during normal business hours. The lady doing the intake was polite while taking our information. She gave us a form that we had to bring back along with the social security cards for everyone in the household. Our appointment was on Monday. She said, “You can come back any Friday at 9AM or 1PM and just tell them you have your form and SS cards.” Today Amy went to drop off the forms, arriving at 0815 and was told that she was #35 and they only take 20 applicants at 9AM. She went back at noon and was told that the people who were being seen (basically, just dropping off forms) were given the 20 slots at 1100. There was one woman there who was on her 6th (SIXTH!) try, and another on her 4th. They only take paperwork on Fridays. And the employee who told Amy that was none-too-sympathetic or apologetic. Her job evidently does NOT depend on how she treats “the customer!” Just imagine if this was something URGENT (because heat in the winter isn’t urgent, right?).

Then there’s the COST of the proposed healthcare reform. It is said that they will cut $500 million from Medicare and “reduce waste” in Medicare and Medicaid to help pay for the program. Here’s an idea: how about we SAVE first and once it has been demonstrated that we CAN save by reducing waste, THEN we can start spending the money! Oh, wait…that would be un-American (it is the AMERICAN WAY to spend first, run up a big debt – like with credit cards – and then figure out how to PAY for the stuff, right?) The bill is even purported to be “deficit neutral” (they’re financing 5 years of coverage starting in 2014 with 10 years of taxes, ‘savings’ and other revenue). Unless they’ve found a PAUSE button for the calendar, so we can repeat the 10-years-of-payments-for-5-years-of-service cycle again, it won’t be “budget neutral” for long.

I have no choice but to take what I get from the government. YOU probably have more choices. If you think they’re viable, you might want to consider fighting to KEEP them. Let your voice be heard at www.congress.org.

DRINK....your veggies

2009-11-19T14:04:00.000-05:00

About a month ago, I was blessed to be able to get a Vita-Mix. If you've never heard of one, they're a blender - on STEROIDS. I had heard how wonderful they are for years and as food gets harder to eat I thought that it would be a wonderful way to be able to still eat fresh fruits and veggies. Well, IT IS! I LOVE it! One of my favorite things is the "Everything Smoothie". The ingredients are: soy milk, red grapes, pineapple chunks, an orange, frozen peaches, carrots, broccoli, spinach, frozen strawberries, frozen banana and ice. Blend until smooth! It tastes DELICIOUS!

BEFORE:

AFTER:

God’s Timing: Trusting It

2009-10-27T10:21:00.002-04:00

Most of you don't know this, but we applied for "Extreme Makeover: Home Edition" a few months ago. We need a makeover. Our house is so cute, but it is groaning under a plethora of small not-so-small problems. As my disability progresses, the needs for home modifications will increase. The irony in this is that, today, they are bringing a family back to their new home just 60 miles from us. The feeling of "not quite" getting what we need is almost indescribable.

God is working on me, teaching me to trust Him to meet our needs and to do so in HIS time. How hard that is!!!! This morning the devotional below was in my email inbox. God does have a knack for timing. Thank you, Father, for loving me and for meeting our needs in Your way, in Your time. Amen.

His Vision, His Way, In His Timing
TGIF Today God Is First Volume 2, by Os Hillman
10-27-2009

"Then God said, 'Take your son, your only son, Isaac, whom you love, and go to the region of Moriah. Sacrifice him there as a burnt offering on one of the mountains I will tell you about'" (Gen 22:2).

Have you ever wanted something so bad that you would do almost anything to get it? Have you ever gotten so close to fulfilling a dream only to have it disappear right before your eyes? Such was the case for Abraham.

God promised Abraham that he would be the father of many nations. He would have a son. However, Abraham panicked when Sarah aged beyond child bearing years and tried to help God by birthing Ishmael through Sarah's servant, who was not the promised son. Eventually, Isaac was born, who was the promised son.

However, God tells Abraham to sacrifice his only son on an altar to demonstrate his obedience to God. Truly, this is one of the hardest instructions given to one of God's people in all of scripture. It compares only to the Heavenly Father sacrificing His own Son. God intervenes and allows a ram to get caught in the bushes nearby, symbolizing the Lamb of God as a prophetic sign of what is to take place in the future.

God often births a vision in our lives only to allow it to die first before the purest version of the vision is manifested. This has happened several times in my own journey. Oswald Chambers observes, "God's method always seems to be vision first, and then reality, but in between the vision and the reality there is often a deep valley of humiliation. How often has a faithful soul been plunged into a like darkness when after the vision comes the test. When God gives a vision and darkness follows, waiting on God will bring you into accordance with the vision He has given if you await His timing. Otherwise, you try to do away with the supernatural in God's undertakings. Never try to help God fulfill His word."*

When God's vision is finally birthed, nothing will stop it. Our job is to allow God to birth His vision through us His way and in His timing.

Oswald chambers, Not Knowing Where, Discovery House, Grand Rapids, MI.

Fall Foods

2009-10-17T16:35:00.004-04:00

Pumpkin Bread Pudding with Brown Sugar Sauce

Raisins or chopped pecans can be used in place of the dried cranberries, or try another chopped dried fruit.

Ingredients:

8 ounces French bread, torn into small pieces, about 5 cups
2 cups half-and-half, or half milk and half cream
3 large eggs
2/3 cup granulated sugar
2/3 cup brown sugar
1 can (15 ounces) pumpkin puree
1 cup dried cranberries
3 tablespoons melted butter
1 teaspoon ground cinnamon
1/2 teaspoon ground nutmeg
1/2 teaspoon ground ginger
1 teaspoon vanilla
cinnamon sugar, optional

Preparation:

Butter an 11x7-inch baking dish. Heat oven to 350°.

In a bowl, cover the torn bread with the half-and-half; set aside.

In another bowl, combine eggs, sugars, pumpkin, cranberries, melted butter, spices, and vanilla; blend well. Pour pumpkin mixture over soaked bread and stir to blend.

Pour mixture into the prepared baking dish. Sprinkle top with cinnamon-sugar, if desired. Bake for 45 to 60 minutes, or until set.

Serve with a vanilla dessert sauce or brown sugar sauce, whipped cream, or vanilla ice cream.
Serves 8.

Brown Sugar Sauce

A delicious brown sugar sauce for bread pudding, fruit desserts, pound cake, ice cream, and other goodies.

Prep Time: :

Cook Time: :

Ingredients:

1/2 cup brown sugar, packed
2 tablespoons corn syrup
1/4 cup butter
1/2 cup heavy cream
1 1/2 teaspoons vanilla

Preparation:

Combine all ingredients in a saucepan over medium heat. bring to a boil, stirring frequently. Reduce to medium-low and let boil for 5 minutes. Remove from heat. Sauce will thicken as it cools. This sauce is delicious with bread pudding, plain unfrosted cakes, ice cream, or other desserts.

Morally Reprobate Judges the Physically and Mentally Handicapped

2009-09-14T21:36:00.002-04:00

Tonight I believe I got a loud and clear message from God! I'm still reeling, actually, but I just had to share. It was church "Ladies' Night Out" and we had a wonderful meal at Olive Garden combined with some fellowship. Our waiter was a handsome, dark-haired, dimpled young man from Israel. As I looked at him, it dawned on me that he was "what Phillip would look like if he didn't have Fragile X Syndrome". Now, don't get me wrong, I think Phillip is handsome, but the protein deficit caused by Fragile X has made his face long, his muscles droopy and his mouth hang just a bit "open" most of the time. In short, he "looks" disabled. My mother's heart felt sad seeing a living, charming young man who was virtually the image of what might-have-been. Then it dawned on me... that IS what Phillip is going to look like in Heaven!

Then I came home, and found a Facebook link to this article. After reading it, and being suitably appalled it hit me: PHILLIP IS EXACTLY LIKE GOD WANTS HIM TO BE! God didn't WILL him to have Fragile X, but God allowed it, so that people like you and me could learn to value people for more than what they look like, what they can "do" or how much "stuff" or power they have!

Although I haven't set eyes on Phillip since Olive Garden tonight, I know that I will look at him differently now. I will see not only the gift that he is to our world (and he IS) but the handsome young man that God created him to be. I pray that when I get to Heaven with Phillip, he's able to put his arms around me and say "Mom, thanks for loving me like I was... and seeing who I WAS"!

Tough Times

2009-07-02T17:44:00.002-04:00

Is this economy causing you to struggle? Wonder where the money for the bills is gonna come from? I DO!

I have a suggestion...... GIVE!

Sound insane? Maybe.

But unless we all start giving again, WE are the ones who are going to suffer! Find your favorite "worthy cause" and give a little. It doesn't have to sink the budget.... you'd probably "find" $20.00 for something you really wanted to do, right? Why don't we all REALLY WANT to help someone else???

I've taken the step myself. In my case it is another step of faith, along a pathway of faith. Don't let fear rob you of the joy of giving! The governor or Illinois put it this way:

"Service to others is the rent we pay for our place in God's earth."

Service and giving are the ONLY "rent" that pays US back more than we give!

Listening for God’s Voice

2009-06-13T11:49:00.001-04:00

Being Led by God
TGIF Today God Is First Volume 2, by Os Hillman
06-12-2009

"For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts" (Isaiah 58:8,9).

How do you know what thoughts are your thoughts versus God's thoughts? One of the great paradoxes of walking with God is discerning the difference between a "natural idea" versus a "God-idea." One of my mentors challenged me one day to make sure that my ideas and the actions I take are directed by God and not from my own reasoning. But being in a marketing profession, there is a constant rub between the "natural" and the "spiritual."

There are three places from which a thought or idea originate: 1) Our natural man, 2) Satan, and 3) The Holy Spirit. There are a few ways to discern from which place a thought is coming. If a thought comes into your mind that you know you would never have thought of, and it might be something you would not normally consider doing. This is likely God speaking.

I once participated in a conference when an offering was being taken to make up for a poorly organized event that left the organizers very short on funds. It was clearly a case of poor management. Nevertheless, I prayed. I assumed I would give a token gift. However, the figure that suddenly came into my mind was $1,000. I argued with God and struggled with my attitude. I thought He must have two zeros out of place! But I obeyed - as I knew that was not my idea.

In order to be obedient, we must not make advance decisions about a particular matter. Each of our decisions must be submitted to the Lord for His counsel to us, not just based on our reasoning.

His Eye Is On The Sparrow

2009-05-03T20:44:00.001-04:00

His Eye Is On The Sparrow

Words by Civilla D. Martin, 1905
Music by Charles H. Gabriel, 1905

Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heaven and home,
When Jesus is my portion? My constant friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy,
I sing because I'm free,
For His eye is on the sparrow,
And I know He watches me.

"Let not your heart be troubled," His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy,
I sing because I'm free,
For His eye is on the sparrow,
And I know He watches me.

Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy,
I sing because I'm free,
For His eye is on the sparrow,
And I know He watches me.

The picture in this entry is of a robin's nest in the miniature crabapple tree right off our front porch. Yesterday there was one small, blue egg. Today there are two. I read that robins lay one egg per day until their clutch is full. Usually they lay 3-5 eggs. Today, a second small, blue egg appeared. I can't wait to see tomorrow!

Such a small thing. Something that happens all over the place every spring. Something relatively "common" yet so remarkable. Yet for me, this "common" thing is a great gift.

Lord, help me to look for the many ways You show your love and your creative power in my life every day. Thank you for loving me and for "watch[ing] over me" ~ AMEN

Learning to Trust

2009-04-20T00:31:00.003-04:00

From this time many of [Jesus'] disciples turned back and no longer followed him.
"You do not want to leave too, do you?" Jesus asked the Twelve.
Simon Peter answered him, "Lord, to whom shall we go? You have the words of eternal life. John 6:66-68

God is teaching me about trust. I've really, really been hurt. I've been hurt by FAMILY. There are days when I doubt that I can even trust God.

Tonight I was given the passage above (John 6:66-68) and I can honestly say that I would answer Jesus' question likewise: "...to whom shall [I] go?" There is no where else for me to turn.

In John 14:1 Jesus says

"Do not let your hearts be troubled. Trust in God; trust also in me."

Anyone’s Life Story: ALS

2009-04-16T14:33:00.001-04:00

ALS Awareness Month 2009

MDA's "Anyone's Life Story"

I have been chosen to be one of the 30 people with ALS nationwide to be featured in the "Anyone's Life Story" campaign. Here is a description from MDA:

"May is ALS Awareness Month. In anticipation of this opportunity to educate the American public about ALS, the Muscular Dystrophy Association's (MDA) ALS Division is planning a national month-long campaign entitled "ALS: Anyone's Life Story".

Each day in May, MDA's Web sites will feature one individual with ALS, along with a photo and short story, providing a snapshot of their life. ALS is a terrible disease, and raising awareness of the disease and the people it affects is vitally important. ALS affects women, men, mothers, sons and friends. ALS, unfortunately, can become "Anyone's Life Story".

"Anyone's Life Story" will present snapshots of individuals with ALS in a month-long, Web-based awareness campaign. MDA will promote the series nationwide, and with media outlets in your local area."

I am honored to have been chosen to help raise awareness!

ALS Clinic

2009-04-15T21:21:00.001-04:00

Yesterday I had my marathon appointment at the ALS clinic in Indy. My friend, Sharyll, and Stitch went along with me and we left my house at 0615 for my 0815 appointment. The first thing I noticed is that there were MANY people (inner-city hospital clientele) who are afraid of Stitch. Frankly, I find it somewhat amusing. He IS a BIG black dog, but how can you be afraid of a dog whose tongue is hanging out and whose tail is happily wagging????? He almost looks like he's smiling! The inner-city IS a different culture…that's all I can say.

How can there be a neurology clinic facility without power door entry? Well, there is one… I'm glad Sharyll was with me! I seriously think that everyone ought to spend an entire day in a wheelchair (without "cheating") once in their lives. It would change the world.

First, I was "checked in" … with questions about my functioning (there is an ALS "Functional Rating Scale"… my score is about 27 out of a possible 40). Next I saw the speech therapist and dietician. Basically I was encouraged to eat an afternoon snack (vs. going from 11am to 5pm w/o eating) and to do "relaxation exercises" before speaking so that my voice won't be so strained.

The respiratory therapist did my lung functions and I am doing great. She said I am the "poster child for BiPAP"... meaning that my BiPAP has allowed my breathing muscles to rest well enough that my respiratory function is being preserved. That was good news.

My "usual" neurologist wasn't there so I saw one of his colleagues. I liked him and felt that my issues were "heard" and discussed thoroughly without rushing. I'm going off of 2 meds and starting 2 new ones with hopes that some of my troubling symptoms can be diminished. One thing we discussed at length is how having "slow progression" is not always the good thing that people assume. It was interesting for me to hear that he often finds that people with slow progression have a more difficult time coping than those with rapid progression. It makes sense to me. To me, "slow progression" feels akin to having 100% body surface area, third-degree burns only not all at once…you get to get burned again day after day, one part at a time.

Next I saw the "crowd": the "Physical Medicine and Rehabilitation" doctor, the physical therapist, occupational therapist, orthotist (guy who does braces) and "durable medical equipment" guy. No big surprises there. I'm weaker on my left side; I was given a soft c-collar for head support when I'm tired. I got some "dycem" (sticky rubbyer-ish stuff that keeps things from sliding around) a "rocker-T knife" to cut food with. The P.T. recommended that I get a bed rail to help with turning in bed and getting out of bed. When Amy inquired on that for me today (I have an RX), she was told that Medicare/Medicaid won't pay for a bed rail because "eventually [I'll] need a hospital bed anyway". Welcome to socialized medicine.

After clinic I had lunch in the Riley Hospital cafeteria with my friends Ben and Sarah (I worked with them at Methodist). It was awesome to see them!! Of course, Ben, Sarah and Sharyll had to all compare their iPhone applications. It was funny! Sharyll has an app that "farts", Sarah has a "shotgun" that actually "cocks" and "fires" when you move the phone, and Ben has a virtual "light saber" complete with background music!

Then it was an excruciatingly-tiring, 3-hour journey home (the trip normally takes about 1.5 hours) since the service who transported me had to pick up another patient in Carmel "on the way" back to Muncie. All in all, it was a 12-hour adventure.

Stitch did great all day and he ate up all the attention (from the people who weren't afraid of him!). He was a great distraction for Sharyll and me during the exam-room waits between visits from specialists. He didn't even fart too much! J

Last night, my wonderful stylist, Terri, came over and colored and cut my hair. I was exhausted but so grateful to her for doing it. She did a great job and it is so nice to look in the mirror and see stylish hair! She is a GIFT!!!

Today I am tired. What a shock.

More later. Love, Claudia

Spring, Please!!

2009-04-04T12:12:00.001-04:00

Why is it so HARD to wait?! Spring… balm for the wounds of January, February and March…sunny, mild days…flowers…GREEN. How I am ready for Spring! Well, wait, I must L

From WTHR Indianapolis today: "Bottom line to this forecast... enjoy today! Highs will reach the low 60s with mostly sunny skies. Tonight clouds will be on the increase ahead of our next storm system that moves in Sunday. Showers and storms are likely Sunday, some could be strong or severe. Then Monday, a chance of snow!"

Bah, humbug! Think spring!!

The Black Hole

2009-03-29T15:00:00.001-04:00

I'm there….

The Black Hole
TGIF Today God Is First Volume 2, by Os Hillman
03-26-2009

"My grace is sufficient for you, for my power is made perfect in weakness" (2 Corinthians 12:9).

On February 20, 1962, at 9:47 A.M., the spacecraft Friendship 7 rose on a pillar of fire, piloted by lone astronaut John Glenn. Leaving the coast of Florida far behind, the space capsule orbited the earth three times, traveling 81,000 miles in less than four hours. As the craft began its descent from space, mission controllers in Houston received a warning signal. A sensor indicated that the capsule's heat shield was in danger of detaching. If the heat shield came loose during reentry, the capsule would burn like a meteor--and John Glenn would die.

Because radio waves cannot penetrate plasma, the spacecraft experienced a total communications blackout--what astronauts and mission controllers call a "black hole".

The minutes crawled by and the suspense mounted in the Houston control room. NASA engineers felt totally helpless. Finally, after five minutes of silence, mission controllers heard Glenn's voice crackling over the radio: "Friendship 7 to Houston?"

Shouts of joy shook the control room. John Glenn was coming home. Although neither Glenn nor the mission controllers knew it at the time, the heat shield was absolutely firm and reliable. The fears for John Glenn's safety during his black hole experience were unfounded.

If you've ever been through a major crisis, you probably know what a communications "black hole" feels like. While you are in the pit of adversity, you feel that your world is collapsing, that your life is out of control--and that God is silent. The silence of a black hole is deafening. You feel isolated and alone. You question God's love, His care for you, and even His existence.

But even when it seems that God is distant and silent, your "heat shield" is still there, firm and reliable. In your black hole experience, God is teaching you to go deeper into your relationship with Him. You may think that your life is out of control and burning like a meteor, but in reality God, your heat shield, still protects you from the fiery forces that surround you.

Mass email from "Margie's Daughter"

2009-03-25T19:39:00.002-04:00

I just received a mass email. Nice way to find out your mother is in a nursing home, but hey, at least she's apparently happy:

To all of Margie's "Presto" friends and family, just to let you know the latest news...

We recently disconnected the Presto service at Margie's request, and we are now unable to provide the service since Marge has moved into a skilled nursing facility in the ****** area this past Monday, March 16th. If you would like to correspond with Margie, I'm sure she would LOVE to hear from you - so please feel free to send her cards or letters via U.S. Mail care of my address which is as follows:

Margie ****
c/o [my sister]

I will be sure to deliver Margie's mail to her ASAP at her new home since we visit daily.

Margie is doing GREAT - and she's adjusting to her new home amazingly well!!! She's loving the specialized attention - and she's enjoying such things as being personally served three hot meals a day! I've had lunch and dinner with Margie several times now, and we both think their food has been really good! I personally think their dinner rolls taste like King's Hawaiian bread! And would you believe the nurses have even asked if she would like coffee or hot cocoa when she's finished her meal!

Perhaps as a "sign" or a positive twist of fate, when we visited on Saturday, March 14th to have Margie pick out her room, she even enjoyed three of her favorites at lunch - a hamburger, MILK, and ice cream!!!! (For those of you who may not know...Margie sometimes calls herself "Wimpy" as seen in the old Popeye cartoons...and she loves milk so much she's been know to drink 2 1/2 gallons in one week!!!! According to Margie, "It's the best drink in the World!") :-)

We're getting to know Margie's sweet, new roomie, Willie - and her wonderful family members as well. They even came into the dining room to introduce themselves to us before we'd even finished our lunch the first day Margie visited! They heard Margie might be Willie's new roomie - and they wanted to come say "hi"! A warm welcome, indeed!

Margie has started daily physical therapy and enjoys getting "out" and even referred to coming back to her room as coming back "home". She's adjusting well - and was even laughing as we reminisced and talked about old times at dinner in the dining room the other evening.

Each day Margie has been happy - and as each day passes, her room is taking on her personality as we decorate it with her personal decor items, photos and belongings.

As Margie's hearing has deteriorated over the last couple of years, telephone usage has become quite difficult. So please write to Margie - and I'm sure she'll be thrilled to hear from you.

All the best,

***** ******

Margie's Daughter

THERE ARE NO WORDS FOR HOW I FEEL.

Hacked

2009-03-17T13:04:00.002-04:00

My gmail account has been hacked so I apologize if you got email "from me" that is spam. I've taken steps to re-secure my account and hopefully that will be then end of it.

I am stunned by the crazy people in this world. Be safe out there. Love, Claudia

Counting Blessings

2009-03-15T22:17:00.001-04:00

I appreciate all the words of support that I've received since my last post. I know that some things are ugly but true and I've found that some things are toxic to keep bottled up.

I am continually amazed at the grace and love that people show me. I am far from perfect and, like the rest of us sinners, deserve nothing but punishment from a just God, but He is also merciful, and for that, this sinner is grateful.

I am so blessed to see my little boy and his "bwak wab" lay their heads down next to one another each night. Stitch is truly an angel with fur on. His gifts to us are God's gifts to him: his patience, love, energy and intelligence. Thank you to those of you who actively helped bring him home and to those of you who continue to support us as we strive to give him the care he needs.

I am blessed to have friends, old and new, who will stand beside me and say "I love you" even when I am unlovable.

I am blessed to have the vision that people come into our lives for a reason, a season or a lifetime. And that whichever it is, that person's presence is a part of the bigger picture.

I am blessed to have wonderful children who love me unconditionally.

I am blessed to live in a free country, where I can speak my mind (as I often do), and worship freely.

Count your blessings… I'm still counting mine. Love, Claudia

Warning: Dirty Laundry Ahead

2009-03-09T15:07:00.004-04:00

WARNING: Dirty laundry ahead. Continue at your own risk. Please skip this if you are wearing rose-colored glasses.

I've had a pretty significant surge in progression since the first of the year. No new symptoms, but the old ones are definitely worse. Although the "experts" say that ALS has a "linear progression" I see myself having plateaus and 'spurts'.

I have no doubt that the stress of the past few months has made my symptoms worse. I'm not sleeping well, which I know makes things worse. To top that off, my sister decided to inform me last September that she is "too stressed" (taking care of my 82-year-old mother with Alzheimer's) to hear about "[my] problems" and she doesn't have "time or energy" to update me on Mom, so communication has been severed. Both she and my mother live more than 1000 miles away, and the only news I have gotten since September has been FROM my mother via voicemail (I can't speak on the phone). Unfortunately, it is difficult to know what is really going on due to my mother's confusion and memory-lapses. Without my sister being willing to "fill in the gaps" I've been left to speculate about exactly what is going on. My mother lives in an apartment for senior citizens, but it is not "assisted living" so it is hard for me to know if she is eating adequately, getting her medicine, etc. Is she REALLY out of food or has she FORGOTTEN that it's there?...stuff like that. The last time I got any information on my mom's condition (other than from my mother who has difficulty knowing what day it is) was in SEPTEMBER.

The KICKER here is what happened recently. My mother called and said she had to move to a motel "for a while" because there was a leak in her apartment. Come to find out (and this was substantiated by a call to the apartment manager) that she was in La Quinta for one week and that, according to her, she was left there with a 4 lb. jar of peanut butter, a loaf of bread and NO MONEY. THEN she told me that on day "5" my sister left for HAWAII! At that point I had no idea how long my mother would be in a motel (nor did the apartment manager). My sister never contacted me to let me know what was going on with mom.

This week, my sister shut off my mother's "Presto" system (an email receiving/printing device) that I used to send email to Mom AND cut off Mom's long distance privileges. My sister glibly stated, "Mom's long distance has also been blocked… so to talk to her you will need to call her." AS IF my sister isn't aware that I cannot talk on the phone!

I emailed and asked my sister to reinstate mom's long distance phone service. I have been able to reach my mother once since then.

All of this is just a perpetuation of the dysfunction of my family of origin. I've repeatedly asked my mother to move to Indiana over the past 20 years (and again as recently as 2 weeks ago) but she refuses.

I have no other family…so FRIENDS, you're IT. I refuse to "play the game" and I'm outcast and frankly, it's just as well I guess. It is just hard to know that I'm on my own, without a spouse or family support, facing ALS. I pray for the grace to keep my head high and live life to the fullest of my ability.

If you've made it this far, thanks for letting me "vent". I have bottled up the ugly parts of my life and tried to be "all-happy, all-singing" for decades but I'm realizing that I am who I am, and if you love me, you'll love me. For those of you who still do……..thank you. I love you too!

ALS Hates “Happy”

2009-02-19T19:31:00.001-05:00

I just read a quote from a PALS (person with ALS): "ALS hates happy"….I have been trying to keep a PMA (positive mental attitude) but I think I'm losing the fight. The past month and a half I've taken a downward slope in my progression….nothing NEW, just "the same, but worse." What makes it harder is that there are some things that would make my quality of life much better but I can't afford them. Now, I'm not talking things like a vacation (although that would certainly give me something to look forward to and WOULD increase my quality of life…although I'd rather just be able to go back to WORK!). I'm on oxygen at night now in addition to my AVAPS (non-invasive ventilator). I had hoped it would help me sleep better, but no such luck. Sleeping with a mask on is hard anyway (as any FEMALE with a CPAP will attest…I think men can sleep anywhere under any circumstances, so they don't count). Having the mask tethering you to a gizmo is a pain. Having the tether be 1" corrugated tubing (that isn't comfortable to lay any body-part on) is less-than-pleasant. Now add the fact that my joints and neck hurt…and turning over or moving in bed is hard. What that all adds up to is my sleep SUCKS. Meds aren't even working anymore. I'm more tired that I should be, and I was tired enough to begin with. I try to nap every day but that just takes more "life" out of life. I need an adjustable bed that has memory foam so that I can comfortably stay on my back in one position all night.

We need a vehicle that is suitable for all of us. We have been given a cargo van converted with a wheelchair lift, but Christopher cannot safely ride in it. After checking with several dealers and body shops we've been told that there is nothing that can be done to remedy the situation. All I want to be able to do is go out with my son!

It is bad enough having ALS and being without a spouse-caregiver, but life is getting really difficult and discouraging. Other PALS (persons with ALS) complain that they "spend all their retirement" on ALS-related expenses. I'm growing less sympathetic to that complaint. I'd gladly spend any retirement I have to be able to enjoy the time I have left. I have no retirement to spend.

If I sound like I'm having a complain-a-thon, I am. I've been stoic as long as I can. I am angry about having ALS and angrier that I am STUCK staring at my walls all day long. This is NOT a LIFE.

I apologize for the negativity. I'd love nothing better than to be able to work harder to meet the needs of my family…"pick up an extra shift" as it were. What would you do if you were in my situation? ALS hates "happy"………..

The Herald Bulletin - Positive People: Larry Davenport

2009-02-15T18:34:00.002-05:00

My son, Phillip, is on the far right in the picture (dark hair)The Herald Bulletin - Positive People: Larry Davenport

Posted using ShareThis

An Obituary for a Dear Friend

2009-01-27T23:24:00.001-05:00

Today we mourn the passing of a beloved old friend, 'Common Sense', who has been with us for many years. No one knows for sure how old he was, since his birth records were long ago lost in bureaucratic red tape. He will be remembered as having cultivated such valuable lessons as:

Knowing when to come in out of the rain; why the early bird gets the worm; Life isn't always fair; and maybe it was my fault.

Common Sense lived by simple, sound financial policies (don't spend more than you can earn) and reliable strategies (adults, not children, are in charge).

His health began to deteriorate rapidly when well-intentioned but overbearing regulations were set in place. Reports of a 6-year-old boy charged with sexual harassment for kissing a classmate; teens suspended from school for using mouth wash after lunch; and a teacher fired for reprimanding an unruly student, only worsened his condition.

Common Sense lost ground when parents attacked teachers for doing the job that they themselves had failed to do in disciplining their unruly children.

It declined even further when schools were required to get parental consent to administer sun lotion or an Aspirin to a student; but could not inform parents when a student became pregnant and wanted to have an abortion.

Common Sense lost the will to live as the churches became businesses; and criminals received better treatment than their victims.

Common Sense took a beating when you couldn't defend yourself from a burglar in your own home and the burglar could sue you for assault.

Common Sense finally gave up the will to live, after a woman failed to realize that a steaming cup of coffee was hot. She spilled a little in her lap, and was promptly awarded a huge settlement.

Common Sense was preceded in death, by his parents, Truth and Trust, his wife, Discretion, his daughter, Responsibility, his son, Reason.

He is survived by his 4 stepbrothers; I Know My Rights; I Want It Now; Someone Else Is To Blame; I'm A Victim.

Not many attended his funeral because so few realized he was gone. If you still remember him, pass this on. If not, join the majority and do nothing.

2009-01-12T12:48:00.000-05:00

Make a Smilebox greeting

Merry Christmas 2008

2008-12-20T15:02:00.002-05:00

Make a Smilebox greeting

DR. PASCUZZI SAYS

2008-12-18T23:05:00.000-05:00

I DO NOT HAVE PLS. I HAVE ALS.

Our Value to the World

2008-12-06T12:57:00.001-05:00

Today's Prayer

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
12-06-2008

"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.

Trading Places

2008-12-05T00:41:00.001-05:00

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.

Love, Claudia

Service Dog Training Pictures!

2008-11-06T21:04:00.003-05:00

Hi All,

Our training pics are on the web.

Please go to www.claudiasfamily.com and click the link "Photo Gallery" and you'll see them there!

Love,

Claudia

Re-emerging from Boot Camp

2008-10-30T20:52:00.005-04:00

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!

Love, Claudia

Who Are You?

2008-10-08T21:37:00.002-04:00

Who are you? Do you think about it? How would you answer that question? No, not what is your job. No, not what kind of education do you have. No, not whose (mother/father/sister/brother/daughter/son/girlfriend/boyfriend) you are. No, not what you look like. No, not what your hobbies are. Getting any answers yet? Let's go further.... No, not what political party/sorority/fraternity/club you belong to. No, not what you wear. No, not which socio-economic class you fall into, nor which one you aspire to. No, not where you went on vacation or are planning on going. Not what car you drive. Not tall, short, fat, thin, "athletic" or a klutz. Are you getting any closer to an answer?

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.

Love, Claudia

"Stitch" is coming soon

2008-09-30T12:50:00.003-04:00

We're getting a service dog. Christopher's already decided on the name "Stitch" (as in "Lilo and Stitch"). We go to Ohio for our tw0-week training in less than 3 weeks! We still have a significant hurdle between now and then.... money.

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

A question

2008-09-23T17:35:00.003-04:00

Today, someone posed a rhetorical question to me. It was a huge gulp of food for thought and maybe it will be for you, too. It is extreme, and impossible, but it did cause me to take pause and frame the people in my life in a new light (some for better, some for worse). Here it is:

"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

Iraq War Veteran Speaks to Mr. Obama

2008-09-14T14:06:00.003-04:00

Bob Cook 's son Joe made this video. Joe is an Iraq war veteran.

Surprise Blessing

2008-09-10T18:30:00.005-04:00

What a surprise we had this afternoon. A man drove up with a flat-bed trailer and on it were a couch and love seat. He came to the door and said he had a delivery for us. We told him he must be mistaken (we didn't buy any furniture) and he said it was for us... "a gift from someone at church!"

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!

The Other Side of the Coin

2008-09-08T22:45:00.002-04:00

Many of you have asked for an update on how I am doing. I've also heard “your blog is too one-sided, painting only the rosy side of your life” from close friends. Well, honestly, it is hard for me to be honest about that. I DESPISE complaining and whining! That said, the realities of daily life are changing and I have to be honest with you and WITH MYSELF.

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!
Love, Claudia

What I Did This Summer.....Part 1

2008-08-24T19:55:00.010-04:00

We had a Luau!

Catherine and Vicki in their Luau "finest"!

Christopher thought we needed to have a "Hawaii Party", since Sharyll and her family spent 3 weeks in Hawaii this summer. So we had a Luau! Catherine and Phillip were both at my house, and my dear friend, Vicki from Texas, flew in that afternoon for an 8 day visit.

Angela (Horak) and her mother-in-law, Marilyn, did all of the planning, shopping, decorating and cooking (OK, I helped choose the menu and paid for the food). What a spread! We had roast pork and barbeque chicken, coconut sweet potatoes, haupia (Hawaiian coconut pudding), shrimp cocktail, fruit kebabs with pineapple dip, 7-layer salad, coconut cake and pineapple upside down cake.

In attendance were: Angela and Aaron Horak (girls: Emily,11 and Elianna, 23 months), Marilyn Horak , Tim Coffey and Angela's mom, Jenny; Sharyll, Fred and Bekah Martin; Julia Smith; Catherine and Phillip Ippolito; Amy, Christopher, Vicki McMeans and ME!

The Happy (and FULL) party-goers!

The Girls' Club: (L-R) Julia, Vicki, Sharyll, Me, Amy, Catherine and Angela (behind in the window Bekah Martin, Emily Horak and Christopher -- who wanted to be in the picture -- hence the window as a background!)

Where in the world do I start?

2008-08-14T18:43:00.003-04:00

Summer..........

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!

I'm Sill Here

2008-08-02T23:46:00.002-04:00

I have company from Texas right now.. my dear friend, Vicki... but I am still around. Just BUSY and trying to get outside every chance I get!!! Above is a picture of me, Catherine and Christopher yesterday. Love, Claudia

Truth

2008-07-13T00:03:00.002-04:00

"Truth belongs to a different realm of existence and significance than facts and reality." ~ William P. Young, author of The Shack

Heart

2008-07-10T16:52:00.001-04:00

There comes a point in your life when you realize

who matters,

who never did,

who won't anymore...

and who always will.

So, don't worry about people from your past,

there's a reason why they didn't make it to your future.

A Prayer

2008-07-10T12:11:00.001-04:00

(From Ephesians Four Ministries)

Today's Prayer
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.

The Best Birthday Ever

2008-07-09T13:15:00.001-04:00

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!

Love, Claudia

In DEEP water............

2008-07-03T13:33:00.001-04:00

Baptism at the Red Sea
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.

BAD NEWS! Again......

2008-07-02T22:16:00.002-04:00

Today I received the ruling on my appeal hearing with Medicaid (held nearly 2 months ago). The judge ruled in the STATE's favor and my $927 per MONTH (yes, that is nine-hundred, twenty-seven dollars per MONTH) "Spend Down" (deductible amount before Medicaid will pay anything towards my bills) stands.

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...

Love,

Claudia

Christopher's Surgery Went Great!

2008-07-02T18:45:00.003-04:00

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!

Love, Claudia

The Mantises Have Arrived!

2008-06-22T21:27:00.004-04:00

Christopher looking at his "bug kit" where the first mantis of the season is on display (later released safely...no mantises were harmed in the events described!)

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

Update

2008-06-14T01:40:00.004-04:00

Hi all,

Just a short update on all things "Claudia" -- LOL! Of course, that includes Amy and Christopher and my dear, precious friends....

Amy is doing great. Her face is almost healed and her arm is doing better. It has been an amazing process watching her skin renew itself. God is amazing!

Christopher is doing better. We have done some adjustments to his diet, added more consistent "sensory" routines (it's a sensory-integration thing) and he seems to be coping better with life in general. Getting his service dog earlier will help so much too! On the physical side, we've encountered a little "glich". In the last couple of weeks he has suddenly sprouted about 5 permanent teeth...unfortunately, the baby teeth are not loose and are not falling out. SO, on July 2nd we have to take him for surgery at Peyton Manning Children's Hospital (general anesthetic) to have those 5 teeth removed, a phrenectomy (gumline growing down between his front teeth removed) and his 12-year molars "exposed" (cut away the gum so they can descend). Doesn't sound like a lot of fun. Prayers are appreciated!

I'm doing OK. Falling more. My balance sucks.. of course it doesn't help that I have always been a person who is mentally three steps ahead of my feet....cause my feet aren't keeping up any more. I've got a few new bruises (and a shattered tower-fan) to show for my escapades over the past 48 hours, but I say "no blood, no foul"!

I'm doing an overnight oxygen test tonight. My trouble breathing is not getting much better and there is a possibility that I may go on oxygen. That is another dilemma, since oxygen is not generally recommended in ALS (the thinking of my lung doctor is that my breathing problems are due to my asthma, not my ALS).

On the bright side... I am slowly getting my bedroom decorated, thanks to the efforts of my friends. I bought curtains and now just need to get them hung. The walls are all painted and I am slowly beginning to hang my "things" on them. I am collecting old plates/saucers, etc with pink rose patterns on them to hang on the wall. Yard sale fans...keep an eye out for those 25 cent ones for me!

I am so blessed to have you as friends. Love, Claudia

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!

Words of Wisdom - Opinion

2008-06-11T21:13:00.000-04:00

Words of Wisdom - Opinion

Written by my daughter, Catherine (Ippolito) :)

BIG NEWS!

2008-06-04T22:12:00.002-04:00

We just got word that we are going to be getting our Service Dog in OCTOBER instead of December! We couldn't be more excited! Just over 4 months to go!!!!

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:

Congregation of the Covenants
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.

Update on Amy

2008-06-04T22:02:00.003-04:00

Well, it has been a challenging week. I totally spaced an appointment I had Tuesday. Life feels kinda out of control.

Anyway, here's an update on Amy's condition...in a nutshell...she HURTS :

Photos June 3rd (Tuesday):

Photos today (June 4th):

Thanks for the prayers!

2008-06-02T21:15:00.004-04:00

Thanks to those of you who prayed! I fully expected Amy to be in bed doped-up on pain medicine for several days, and while she isn't healed yet, she looked much better and felt much better this morning. Don't stop praying! I will post some pictures so you can see the improvement already:

Last night (June 1 approx 10 PM - approx. 5 hours after incident):

23 hours later:

Don't stop praying! :)

Love, Claudia

Prayers Please

2008-06-01T22:51:00.002-04:00

Please pray for Amy. This afternoon she was cooking on our charcoal grill when some meat grease flared up and burned her on the right side of her face/neck and right forearm/hand. We spent a little time in the ER and she's got first and second degree burns on her face and first degree on her right forearm and hand. She's short a LOT of hair that got singed and about half of her right eyebrow is gone, but she is going to be OK. Her eyeglasses saved her eyes and she was right by the garden hose so she was able to extinguish her hair and get the burning stopped quickly! We go back to the ER for a recheck tomorrow. Please pray for total and rapid healing!

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.

Love, Claudia

Meeting Old Friends for the First Time

2008-05-28T22:13:00.003-04:00

This past weekend I got the chance to meet a new old-friend, Paula Schwarze. Paula saw our story about the service dog project in the Muncie Star-Press online (she now lives in NC, although she is from Muncie). We began to correspond via email and found that we have a genuine sisterhood in Christ. There are so many of you out there like Paula.... Old friends I've never met. What a rich blessing God has given me! Thanks to each of you who pray for and think of me and who KEEP IN TOUCH. Don't stop praying!!! I am SO WEAK.....right now I am struggling with depression and it is your prayers that lift me up to the Father that keep me afloat. Thank you. I love you..... Claudia

Just falling...........

2008-05-26T16:03:00.002-04:00

I have been so tired and breathless and it frustrates the beejeebers out of me! I still think I should be able to do all the things I used to do... and I can sometimes (for a minute or two). Christopher has been a BEAR for the last couple of months. His meltdowns are increasing, he's biting himself and leaving bruises and he cries....which makes ME want to cry, but I can't because that adds fuel to the fire.

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....

Love, Claudia

Coincidence? Maybe NOT......

2008-05-25T20:07:00.002-04:00

Just last night I was feeling that sinking feeling I get now and then... I even posted it as my status on MySpace.... "Claudia feels like life is passing me by... everyone else's life goes on..." Then today I got this devotional (once again, from Ephesians Four Ministries):

The Place of Nothingness
TGIF Today God Is First Volume 2, by Os Hillman
05-25-2008
"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.

Love,
Claudia

Payin' the Piper

2008-05-05T20:13:00.002-04:00

I had such a wonderful weekend filled with friends, old and new! Today, I'm payin' the piper....been sleeping most of the day and no energy when I'm awake. It is totally worth it!

Thanks for your love,

Claudia

Translation and Blessings

2008-05-04T14:12:00.007-04:00

Beautiful spring sky and the blooms on my miniature crab apple tree

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"!

Love,

Claudia

Medical Update

2008-04-30T22:53:00.003-04:00

Hi all,

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.

Love, Claudia

Please activate prayer chains

2008-04-29T16:10:00.005-04:00

In a nutshell... please pray that our situation with Medicaid is rectified! As it stands, I have a $927/month spend down (I have to pay that out of pocket on Medicaid eligible expenses before Medicaid will pay a DIME toward my medical bills). I have Medicare, but it is TERRIBLE insurance by itself.... so the amount I have to pay out of pocket would likely be the maximum which, incidentally, is almost 50% of our monthly income. Just as an example...IF Medicare covered 80% of my current medical expenses that could come to over $1400 per month...my IV Gammunex alone is close to $7000 a month and my AVAPS (non-invasive ventilator) is over $900 per month.

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.

Claudia

Coming to you live....

2008-04-26T22:59:00.002-04:00

Well, it has been a while since I actually blogged about current goings-on and I thought it was time! I owe a couple of you emails (Cory!) but honestly I haven't been on the computer very much in the past 6 weeks or so. I have really seen a decline in my stamina and my arms are getting weaker so sitting at my computer has been a real drain. I'm working on some solutions to that, with the help of my friends Kent and Vicki. I'll keep you posted.

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'.

~Claudia

2008-04-25T19:38:00.002-04:00

Subject: Magnolias

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?"

"No."

"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

Things YOU take for granted.....

2008-04-23T11:40:00.003-04:00

This thread is copied and pasted directly from the "Living With ALS" Yahoo group. It illustrates just one thing I have to look forward to. Over the next few weeks I plan on posting some of my thoughts on things that I took for granted -- that I can no longer. For now, this thread speaks volumes (pun intended):

1a.
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?

1b.
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.

1c.
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.

1d.
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.

Prayers Needed

2008-04-14T11:01:00.002-04:00

I have mentioned that the past couple of weeks have been a challenge....Christopher started feeling better last night...and this morning Amy woke up sick as a dog. So, I'm trying to do what little I can for her (at least when she gets sick she knows to head to the BATHROOM) and entertain Christopher. My friends are all otherwise committed.... work (most of them) ... and my poor friend Julia had her second surgery (2 in 7 days) last week and Sharyll's husband is still injured and needing help from his car crash last week. Thankfully, Janie brought us some groceries yesterday (THANK YOU, JANIE!) and Sharyll is going to try to get Fred settled for a while and come over...long enough to at least help get the laundry and dishes caught up.

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!

Love, Claudia

Life's Challenges

2008-04-12T20:51:00.006-04:00

Exhausting. That pretty much sums up the past 2 weeks. Since my last post, we've had several appointments and outings. I love getting out and seeing things besides the walls inside my not-so-huge house, but I pay the price. It is frustrating.

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:

He's still got a fever and dry heaves....but we're managing to keep ahead of dehydration with tiny sips of water. Just pray that neither Amy nor I get the bug (oh bad!).

Love, Claudia

Big Day

2008-04-07T20:34:00.006-04:00

It was been a beautiful weekend and I've been frustrated by my limitations. My strength, stamina and balance are definitely worse than last fall. I tried to do some simple things outside but found myself so short of breath that I could only speak in two-word phrases and literally collapsing into bed exhausted from picking up a few dried leaves!

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:

Not ONE but TWO trips!!! THAT'S what I'm talkin' about! He cracks me up!

Now, the drama: While we were at the doctor's office my friend, Sharyll, got a call that her husband had been in a serious motor vehicle collision. We later learned that the driver of one of the OTHER two vehicles involved (a total of three were involved) was killed. Sharyll's husband is going to be fine, and they are very blessed....in spite of totalling their vehicle.

And, tonight, after I got home I had an infamous "first"... my first PUBLIC fall. No blood, no foul, but I'm gonna have some bruises. I never even got a look at the gentleman who helped Amy pick me up.....

Lots of love,

Claudia

My First Video Blog

2008-04-01T20:13:00.002-04:00

Claudia's Blog: Reality Check

2008-03-19T22:56:00.000-04:00

Claudia's Blog: Reality Check

Reality Check

2008-03-19T22:34:00.004-04:00

Yesterday, my dear friend and fellow PALS (Person with ALS), Kent (and his mom, Nancy) drove 160 miles round trip to visit us. It was absolutely wonderful to see them!!Kent and I had a little time alone at Starbucks to just sit and sip (with straws!) coffee and just share our hearts. We have perspective that few people can share. We both have ALS and we both are watching someone we love (each other) fight this beast.

Neither of us would have chosen this route (nor would any of you) but it has chosen us. God has allowed this to enter our lives. I can't say either of us know why He allowed it, but I can say that if it meant never meeting Kent, or missing the blessings that I've seen as a result of my ALS I don't think I'd change a thing. Life, turned on it's head, and accepted as such, can become a beautiful thing. The key word is acceptance.

Kent is a special man. I didn't know him before we were diagnosed with ALS. We met as a direct result. But the man I have come to know is one with an indomitable spirit and an infectious smile. His family and friends have welcomed me and cared for me with open arms.

Kent has a special relationship with Christopher, too. Kent is a "man's man" and he has a way of being concurrently tough but loving and tender. Kent's ALS is progressing faster than mine and his progression is allowing Christopher to see and talk about (as best he is able) what lies ahead for me. This is a huge blessing, although painful for all of us, just the same.

Kent, you're not only Christopher's hero....you're mine. Thank you for being my friend and for loving me. You've been "Jesus with skin on" in our lives.

Love, Claudia

Food for Thought

2008-03-18T12:03:00.002-04:00

Received this devotional in my email today from Ephesians Four Mininstries and just wanted to share with you all. It is food for thought for ME...

Today's Prayer
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.

Love, Claudia

How bad is it?

2008-03-11T14:16:00.001-04:00

Let's just say I traded 3 (nice) shirts of mine for $12.00 worth of groceries ...

THAT sucks.

Just Running an Errand

2008-03-10T23:59:00.002-04:00

"Hey, I think I'll run to Aldi," I say, nonchalantly. We only need a gallon of milk, some half-and-half, bread and some sliced cheese. I can handle this. I can still drive, and Aldi is less than 1/2 mile from the house. I pick up my purse (thinking it feels like a small child is inside...although I have only my wallet, Amy's cell phone and a few other small items) and head for the door. Lifting my heavy feet I think to myself, "Man, I hope it isn't busy at Aldi. At least it is a super-small store and I'll have a cart to lean on when I get there." Walking down the ramp, I notice that the right rear tire on the van is nearly flat. I groan. Up the ramp again, I open the door and announce "I may be gone a few extra minutes. I have to find a gas station to put air in the tire." Amy peeks around me out the door and, seeing the tire, says, "We'll go with you and I can put the air in the tire....(implied: "since it will be hard for you to manage the fine motor part of things"). Gratefully, I say "that would be great" and head to the van to start it to warm it up. The ice and snow -- now slush -- from the "blizzard" we had 3 days ago still lingers despite today's temperatures in the mid-40s.

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.

Spring...where are you!?

2008-03-05T21:28:00.005-05:00

The birds are coming back. The past few days we've been blessed to see a female and two male cardinals just off our front porch. Christopher is so excited and so am I! I love watching the birds and they help me remember that God watches over me because "His Eye Is On The Sparrow"! Yes, the world outside still looks cold and grey (bah, humbug) but I keep reminding myself that spring IS coming!

Love, Claudia

Prayer Request

2008-03-05T12:51:00.004-05:00

Due to some MAJOR bureaucratic mess-ups, our already tight "fixed-income" is really problematic right now. Please join me in praying that God meets the gaps.

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!!!

Love, Claudia

What if His People Prayed?

2008-03-04T22:48:00.006-05:00

If my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then I will hear from heaven, and I will forgive their sin and will heal their land.

2 Chronicles 7:14

Do you believe that God answers prayer? I do. Since I've been diagnosed with ALS I've seen Him answer prayers in truly MIRACULOUS ways. Some people might say that all of them are "coincidences", but I know better. Here's just one example....I got an email 2 days ago from a person who lives out of state (formerly a Muncie resident), saying they had read about our service dog project (on the web) and had been praying for us and for the project. They then told me that they had "called home" and in the course of the discussion "coincidentally" found out that a family member (still living here in Muncie) had "donated toward a family raising funds for a service dog". Now, you might be thinking, "Wow, that's kinda cool...they prayed and their family acted" but that's only part of the story. Their "family member" is one of the two people who was moved to donate $5000.00 to 4 Paws in Christopher's honor! They had NOT discussed this before... but God moved in response to prayer.

What if God's People Prayed? I hope as you read the lyrics to the song by "Casting Crowns" (below) you'll think about the power YOUR prayers can have in your life, the lives of others, in our nation, world and in God's kingdom!

PRAY! Your daddy wants to hear your voice. He doesn't care if you follow any particular format or that you aren't perfect...HE LOVES YOU and he just wants to hear your voice! If you're a parent, remember the first time you heard your child's voice on the phone? Do you remember how wonderful and magical that little voice was? Did you even care what they said? NO! It made you smile just to hear their voice. God, our Abba ("daddy"), just wants us to TALK to him! Try it. He WILL smile just to hear your voice!

Love, Claudia

What if the armies of the Lord
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

Chorus I:
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

Chorus I:
What if His people prayed
And those who bear His name
Would humbly seek His face yeah
And turn from their own way
Chorus II:
He said that He would hear
His promise has been made
He'll answer loud and clear, yeah
If only we would pray

Bridge:
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

Choruses:
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)

THE HAPPY DANCE!!!

2008-03-03T18:10:00.003-05:00

It's OFFICIAL! We have met our fundraising goal for 4 Paws For Ability and are scheduled for the two week training in December 2008. We are getting a service dog!!! (happy dance! happy dance!). Start to finish will have been less than a year...remarkably fast in the service dog world, but excruciatingly slow in this house! But, WHATEVER you do, DON'T PRAY for PATIENCE for us (puhleeze.... I know how God answers that prayer!!!! LOL!!).

Thank you SO much to all of you who donated...no donation was too small and every dollar made a difference!! Your love and prayers have moved mountains! Love, Claudia

Praying for Official Word that We're DONE!

2008-03-01T13:33:00.002-05:00

Well, today is March 1st, so we're praying for that special email that says that we've OFFICIALLY (as in "the checks have cleared the bank") done fundraising for 4 Paws! This has got to be the longest day of my life so far!

Christopher asked if his dog could pray with him and I immediately thought of this picture! We told him that, yes, his dog could probably pray with him!

I'll post again as soon as I get any information from Karen (Shirk) at 4 Paws. Hopefully, when we find out we're DONE we'll get dates for our training class as well. I've heard rumors that the next class that has openings (for dogs that will do tracking, like Christopher's) is DECEMBER 2008. I know there is another tracking class in September but rumor is that it is FULL :(

So pray extra hard today for us.... and I'll post again later. Love to all of you who have so graciously supported us along the way with donations and most of all PRAYERS! Hugs, Claudia