God Sends Comfort

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

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

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

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

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

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

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!!)~!

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!

- Posted using BlogPress

A Red-Letter Day

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!

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

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!

In the midst of Loss

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)

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…

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

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

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

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

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!