Merry Christmas 2007

Back Row L-R: Phillip (20) and Catherine (22)

Front Row L-R: Mrs. Claus, Santa Claus, Claudia

Floor: Christopher (10)

Holidays have always been anything but ordinary in our house. Working in a 24/7/365 job, I've spent so many holidays in the ER, on the ambulance or on the helicopter that I've lost count. "Alternative" holiday celebrations have always been the norm for us. And even though I'm not working anymore, 2007 is no different.

First of all, no Christmas is complete without the "feeding frenzy" that describes the gift opening!! No sense telling autistic kids to "slow down"; not even 20-year-old ones! Packages and wrapping paper fly through the air like a tornado has descended into the living room.

Our Christmas tree is on the front porch, thanks to a very small living room and the need for an uncluttered environment.

Then there is the "Christmas Feast" which has consisted of everything from cheeseburgers re-warmed in the microwave (McDonalds even closes on Christmas Day), to gas station pizza (the kids were with "Dad" and Amy and I couldn't find anyplace else open!), to lasagne, chicken enchiladas and the occasional "traditional" meal.

This year we've been blessed again. Friday night (Dec. 22nd) a couple from our church who "play" Santa and Mrs. Claus paid a special visit to our house! It was so amazing.

I've sent out my Christmas cards. My gifts are bought and wrapped. I even uploaded the Disney photos and wrote a Christmas letter that I posted on my web site.

Life is good. I pray that each of you have a blessed, peaceful Christmas with the ones you love, and no matter what "Christmas" looks like at your house, that you remember the true Meaning of CHRISTmas.

Merry Christmas,

Claudia

2007 Christmas Letter (salvaged from now defunct website)

2007 is coming to a close and 2008 is just a few breaths away. How quickly the time passes and how grateful I am for every minute! My ALS (Lou Gehrig’s Disease) is very slow-progressing and I am still able to type, eat, walk and drive (although all with decreased efficiency). The life-expectancy for ALS is 3-5 years. I have had symptoms for more than 3 years and am definitely in the slow-progression group (10% of people with ALS live more than 10 years…that’s what I’m shooting for!!)

I tried, unsuccessfully, to just “wish” this letter into existence but, alas, here I sit on December 20th writing! You would think that, being “retired” that I would have so much time to do things like this it would be no problem…but nooooooo, I manage to find enough stuff to do to fill up my days and still leave a sizeable collection on my “To Do” list!

2007 has been a good year, full of joy. I am truly blessed! I will have all three kids here with me for a week between Christmas and New Years! I can’t wait!!!

Catherine, 22, is in graduate school, majoring in Creative Writing. She graduated with a BA in English from Anderson University in May of 2007. She is adapting to life several hours from home much better than her mother is adapting to her being there!!! The most difficult thing for her is not being able to drive…she is dependent on others for errands, etc. She is involved in several on-campus ministries there at Indiana State University and she is blessed to have found a caring group of friends there who do what they can to help her when she needs something.

In August 2007, Catherine and I were given a 7-day Eastern Caribbean cruise! A friend of mine from Florida who also has ALS took his family and asked me and a “friend” to join them. Catherine and I had a WONDERFUL time! Neither of us had ever been on a cruise before so we had no idea what to expect. Needless to say, we loved it and are totally “sold” on the cruise concept! We sailed aboard the “Carnival Glory” out of Cape Canaveral and visited Cozumel, Belize, Costa Maya and Nassau. What a trip!

Phillip is 20 and is in an autism program at Highland High School in Anderson. In August 2006, he went to live with his father and step-mother, Kimberly, in Anderson. He has thrived there. Kimberly’s three children (one, a sophomore in college, one, a senior in HS and the youngest, a sophomore in HS) have accepted Phillip as their brother and have been a positive “normal kid” influence on him. I miss him terribly, though. He calls and talks to Amy on the phone almost every night, but because my speech is slurred I don’t use the phone …so I usually just listen-in. It is always great to hear his voice and to know that he is happy and healthy there at his dad’s.

Christopher is home-schooled for the second year and it is proving to be an outstanding choice for him academically. Due to his immune deficiency, he was out sick so much in public school that his academic progress suffered. Now he is sick much less often and we are able to work around it when he is ill. He is doing grade-level work or above in all areas except math. I am very proud of him. He continues to be the most loving and cuddly child I’ve ever known and we enjoy him so very much! He still loves all-things fire and EMS related but has grown to enjoy a much wider range of activities in the past year. He is reading books like “The Chronicles of Narnia” and loves all things “Disney”, especially Mickey Mouse! For the first time in his life his room is not decorated in “firefighter” motif, but instead it is the Mickey Mouse room!

Speaking of rooms, we are still in the process of decorating our house. We moved from a two-story home in Fishers (IN) to a single-story cottage in Muncie (IN) in July 2007. Our new home is cozy and inviting and we just love it! There are hard-wood floors in most of the rooms (we are just beginning to remove carpet), oak molding around all the doors and windows and a beautiful wood ceiling in the eat-in kitchen. Both bathrooms have tile floors and my bathroom is wide and has a step-in shower that is very accessible. Amy’s room has been painted from the original lavender to a beautiful green and cream. Next we plan to paint a little in the living room and then attack the kitchen (currently the wallpaper and paint are not our taste at ALL).

Our big event for 2007 came earlier this month when we spent a week at Walt Disney World with the help of “The Dream Foundation” (a wish-granting organization for terminally-ill adults). It was a Magical time! Sharyll (Martin) went with Amy, Christopher and me and we were able to stay on Disney property, which was a huge benefit given that both Christopher and myself use wheelchairs for long jaunts now. We spent most of our time in the Magic Kingdom and Epcot. Christopher’s favorite thing was just meeting the characters and we did a LOT of that! We tried two attractions… the first went OK (Christopher cried but said he wanted to stay for the entire show) but the second (The Many Adventures of Winnie the Pooh) was a disaster (who would have thought that Pooh would be scary!?! Well, not us…but the ride got dark and that was the beginning of the end). Christopher had a full-blown meltdown coming off the ride, but in true “Disney Magic” form, there just happened­ to be a “Dream Sqad” member there who immediately ushered us into a corner of the gift shop, sat down, spoke calmly and kindly to Christopher and presented him with a certificate signed by Winnie the Pooh, Tigger, and friends! This angel (and I have no doubt that she was) then escorted us through the park (the 3PM parade was about to start…the crowds were thick and the streets were blocked off but a little “pixie dust” paved the way) to the “Wishes Lounge” (a lounge that we had no idea existed…a place especially for families on “wish” trips). There we were able to re-group while Christopher laid on a large body-sized floor cushion and watched a DVD. Our Dream Squad angel then left, only to return a few minutes later with a Pluto plush toy for Christopher!

Another very Magical moment happened when we were just entering the Magic Kingdom one day and a cast member (another Dream Sqad member) approached us and asked us what our dream for our trip was. I answered, “To make memories for my son” and explained my ALS. She arranged for us to have a private meet-and-greet photo-session with Cinderella!!! On the way in to meet Cinderella we had to pass “Dopey” who was meeting people on the sidewalk. Christopher wanted to meet him (but we had a very important “date”!). Our Dream Squad cast member heard Christopher say he wanted to meet Dopey and lo, and behold, after meeting with Her Royal Highness, she invited her “special friend” Dopey to join us in the room…and we had a private meet-and-greet with him too! We got a gazillion pictures there alone (we have more than 600 photos total from the trip). They gave us a certificate for a 5”x 7” photo and gave us a frame that says “Magical Memories of a Magical Day”! Everyone in the room was in tears when we left. What a memory they made for us! I could go on and on, but in spite of Christopher’s fears (no more attractions and freaked-out by fireworks) we had a truly Magical time!

I am doing well. As I said I am still able to do most things although I tire more easily and cannot talk on the phone at all. I am on BiPAP at night to support my breathing. This fall I was found to have an immune deficiency of my own (I was diagnosed with a problem before I had Christopher, but it improved after I gave birth). I am now getting intravenous gammaglobulin once a month to protect against the #1 killer of ALS patients: pneumonia! The infusions are easy. I spend a few hours in the outpatient oncology area at Ball Hospital and I’m on my way. I am grateful to modern medicine!

I have been so amazed at the generous providence of God these past 15 months since I quit working. He has not only miraculously supplied our needs but He has given to us above and beyond…”[in] good measure, pressed down, shaken together and running over” (Luke 6:38)..

I’ve been blessed in so many ways as a direct result of my ALS. While some people who I had confided in and thought of as close friends have vanished, other people, some of whom I’ve never met, have stepped up and are supporting me in ways that only God can know the fullness of.

I am learning every day more fully what it means to have the joy of the Lord…even in the face of things that don’t make me very “happy”. My prayer for each of you is that you could come to know this peace and joy that I have found. As the saying goes, “No Jesus. No Peace. Know Jesus. Know Peace.” Those words are ringing true today in my life like never before.

May you have His Peace this Christmas as you celebrate His miraculous birth, as well as throughout the year to come.

All my love,

Claudia

Welcome~

To those of you visiting from Kim at Daisy Cottage's blog, welcome! I am so blessed to have an ever enlarging circle of friends. I hope to keep in touch!

Right now we are on a "wish" trip at Disney World, thanks to the help of the Dream Foundation (a wish-granting organization for terminally ill adults). It is amazing and I am making some precious memories with Christopher!

I will share photos when we get home and more details... until then, love and blessings!!!

Claudia

Update

The "Walk to D'Feet ALS" was a great success. I don't have the final team total for "Claudia's Champions" but I did receive this email from the ALS Association:

"On behalf of the entire Indiana ALS community, we want to say "Thank You!" for making our 8th annual Central Indiana Walk to D'Feet ALS such a success! We are grateful for the tremendous commitment and support each of you demonstrated last weekend and leading up to the event in Indianapolis....it was a glorious day in so many ways!

I am very pleased to share that our preliminary Central Indiana Walk results have exceeded $85,000. This includes almost $34,000 in on-line credit card donations, everything we collected at the walk, and what was sent to us before hand. This does not yet include many contributions still in route to us from Team Captains and individuals. We extend our deepest appreciation to you, your family, your friends, your co-workers, and our local volunteers and corporate sponsors!

And the giving isn't over yet.....Historically, we continue to receive a significant volume of contributions following the walk, and this has already been the case over the past several days. Many of you will also receive additional donations in the days and weeks ahead, and we ask that you handle those just as you did donations received prior to the walk. You may still enter checks on-line and watch your team tally grow, or forward them directly to us to be entered. Whatever you do send to the ALS office, be sure to clearly indicate the Team Captain or Team Name and we'll make sure the proper team gets credit for the funds raised. You may also continue to encourage supporters to make credit card donations to the walk on-line.

Please send outstanding donations to:

The ALS Association, Indiana Chapter

6525 E. 82nd Street, Suite 115

Indianapolis, IN 46250

(Reminder - please convert cash collected to checks and note the Team Name!)

I know many of you are eager to know your team total, but that takes a bit more time. Over the next few weeks, ALSA staff and volunteers will be entering all the donations received from the walk into the on-line system. As we tackle this process you will see your team dollars increase, just as the Central Indiana Walk "virtual thermometer" will also continue to rise and show the overall success the walk. We appreciate your patience, as this process does take some time. Once we complete this process, we will begin to send out thank you letters and tax receipts.

For the photographers among the crowd, if you have a couple good digital photos from the Indianapolis walk that you would like to share with us, please send them to walk@alsaindiana.org (jpeg format under 200K resolution preferred). We will include them with the official team photos, which we should have posted soon as a "photo album" on the walk site home page. We'll send a message to everyone once they are up, and include a brief update on Walk results.

Finally, if you have any wrap-up questions in the weeks ahead, please contact our office at walk@alsaindiana.org or by phone at 317-915-9888, or toll-free at 888-508-3232.

Congratulations to all - we couldn't have done this without you!

Lark StarkExecutive DirectorThe ALS Association of Indiana"

It has been a challenging month. I've been struggling with a lot of pain, especially in my neck and shoulders and the pain seems to exacerbate my fatigue. It doesn't help that the medications I take to ease the muscle spasms make me sleepy....

My sister and her husband were trapped in their home for 5 days due to the Rancho Bernardo (CA) "Witch" fire raging all around them. Their home and immediate area were spared, but hundreds of homes were lost within a 3 mile-radius. Thanks to everyone who joined with me in lifting them up in prayer. I have seen some video that helps explain to me why they were unable to evacuate. Imagine sitting in bumper-to-bumper, stand-still traffic with flames raging on 70-mile-an-hour winds all around you. Here is a video of what that looked like (filmed in Rancho Bernardo the morning -- 3 am -- of the evacuation).

I am so grateful that they are both OK, and that they did not loose their home.

I have Phillip here this weekend. It is growing increasingly difficult to have him here with just myself, Amy and Christopher. I have always said that the appropriate ratio is "two adults per autistic kid" and we are WAY behind the curve on that one! It is so incredibly frustrating for me to have such difficulty speaking (when the boys already have such a hard time listening!). I find the situation truly depressing. I want to enjoy the boys, but I am finding it harder and harder to even interact with them :(

Catherine is doing well at ISU and has even gotten an on-campus job. I miss her terribly, though and wish she was here at Ball State instead of in Terre Haute. I saw her over Labor Day weekend and may see her at Thanksgiving...and hopefully at Chrismas. When life is measured in months, that doesn't seem often enough.

Through it all, I am still blessed. I have a hand full of wonderful friends who have been present and supportive in tangible ways and I cannot put into words how much this means to me. Thanks Sharyll, Sheryl and Julia. Love you!

Claudia

Oh, that I could be this strong....

I just read an article that Tony Snow wrote for Christianity Today. Click HERE to read it. It is worth reading.

What a remarkable man, what a remarkable faith, and what a profound and true statement at the end: No matter where we are, no matter what we do, no matter how bleak or frightening our prospects, each and every one of us, each and every day, lies in the same safe and impregnable place—in the hollow of God's hand.

Blessings and love,

Claudia

Marty and Matilda Mantis

We've been invaded. That's right. We have a preying mantis family in our yard. Now, they haven't invaded our yard. There are just a few of the spindly things. The invasion has been in our LIFE! You see, Christopher LOVES bugs. And Aunt Julia bought him the coolest, most "awesomest" bug kit ever. The "bug bucket" has clear sides and bottom, and a MAGNIFYING lid! Oh, has heaven arrived for a 10 year old boy!?! For the past several weeks now, we have gone outside in the morning, looking for Marty or Matilda (yes, our internet queries and Cosmeo videos have taught us much....we can now tell the males from the females by counting the segments on their abdomens). When we find them, usually right where we left them the night before (OK, so they're not SMART bugs), we put the "bug bucket" in front of them and they usually walk right in. We've gotten so "into" the whole "mantis experience" that we began catching other small insects for Marty or Matilda to eat. We can even watch through the walls of the bug bucket as our interesting-looking insect friend consumes all but the wings of his dear departed fellow insect. It has been fascinating.

Want to come visit? Christopher will happily show you his "little buddy"! Love, Claudia

Seasons

What is your favorite season? Why? Do seasons have associations that bring people, events or both to your mind? Fall is officially beginning on the 21st. Summer is officially gone. The seasons mean more to me now that I have ALS. I wonder every time the seasons change what this time next year will look like. I don't know what they will hold, but I do know that I have memories from the past that stand out strongly in my mind. Memories of immense joy birdwatching in Morgan Monroe Forest in the crisp fall air . Memories of confusion, deceit, grief, pain and betrayal in the midst of Thanksgiving, Christmas and New Years. The common denominator in these memories are relationships. One day, when we look back on our lives, we will have a "stock" of memories to sort through. My prayer for you, for your wife or husband, for your children, your parents and your other loved ones is that you are able to make a special effort to make memories worthy of the feelings you share for one another. That you would be intentional in making those people know that you love them in the midst of whatever you do. It is amazing how the sights, sounds and smells of the seasons are so unique and how those things evoke such strong memories even years or decades later. I don't remember what my paycheck was that emotionally devastating holiday season, or even what kind of car I was driving when I went bird watching in the bare-treed forest. I remember the persons involved. I remember the way I felt. Those are the lasting things.

Love someone (love them more than your stuff, more than your job, more than your social status or more than your resume', more than your SELF) this fall. You won't regret it. Love, Claudia

To My FRIENDS

I am a member of a Yahoo group for persons with ALS (pALS). Recently a pALS wrote in and was asking about "choosing when to die". You see, she is single and has virtually no family or friends supporting her and (in her words): "As time goes on, I am finding it so difficult to find any meaning in my life. I [never hear] from family and most friends. I hardly go out except to go to the store with the aide, or dr'sappointments.No one comes over anymore...."

One response she received struck me: "Most people really are good at heart--they're just so busy and distracted by "modern life" that we have to work hard to get their attention. If you die, and your family or friends read your posts here on this board later, I want very badly to believe that at least a few of them would say to themselves: If she'd only asked me, and made me see how important it was to her, I would have been there for her."

I'm not dying tomorrow, or next week and probably not even next year. I AM however facing changing needs and abilities that will continue for quite some time. This is a "marathon" not a "sprint". I'm finding that it is easy to find a friend to be with you for a "sprint" but when it comes to "marathons" most people don't have the tenacity.

I am stating, here and now that your friendship IS important to me. I NEED to hear from you. I need to see you. I don't want to die alone! Please, consider joining me for moments along this marathon. I have no choice. I have to run the race to the end. YOU can choose to support me and I need your support. I love you all. ~Claudia

Downswing and on the upswing

I am finally feeling a little better. After the cruise, I was exhausted and then I got bronchitis. Two antibiotics later, I'm finally feeling better. I have to say, it was not a fun "ride". Feeling sick is no fun. Feeling sick and dealing with the realities of ALS is REALLY no fun. I have to admit, I had a bit of a pity party. I do my best to think "positive" and to keep FIGHTING ALS, but there are times when I just plain am SCARED. I'm scared of the changes that are coming (and I know pretty much what I'm 'in for'). I'm scared of dying alone. I'm scared that Christopher won't recognize me as "Mommy" when I can't talk or hug him anymore.

And I'm grieving. I'm grieving the loss of my future the way I had "planned" it (hahaha). I'm grieving the loss of the job I loved. I'm grieving the loss of every small ability that is now harder for me. I'm grieving the loss of hope that things will be easier tomorrow.

All this said, I am so grateful for what I still CAN do. I am so blessed that I CAN still hug Christopher and tell him that I love him with my own voice. I am blessed to be able to cherish so many things that so many people in our spoiled, rich, blessed society take for granted. I am grateful for my friends and for this opportunity to find out who my real FRIENDS are (and that has been the biggest shock of ALL).

I hope that you can take a minute today and think about all you have... family, friends, material blessings, a job, opportunities, choices....and thank God for it all. If you are blessed (and you KNOW you are!) find SOME way to "pay it forward". Share a word of encouragement, a gift, donate to a charity, call an old friend who you "are gonna" call but can't seem to make the time, tell someone that you LOVE them......Make the world a little bit better place today than it was yesterday, somehow.

Love, Claudia

Cruisin' back to REALITY!

I'm "back home in Indiana" after a great vacation in Florida/cruise in the Caribbean! Traveling is definitely a challenge for me physically now, but I am so blessed to have had this once-in-a-lifetime opportunity. Thanks Ken!

On August 7th, we flew to Orlando. We spent 4 nights in Titusville (directly across the river from the Space Center) with my our gracious hosts, Ken and Glenda. On the evening of August 8th we were witness to history as we watched the launch of the Space Shuttle Endeavor from the shores of the Indian River. Amazing.

On August 11th we set sail on the Carnival Glory. The Glory is the largest of Carnival's cruise ships weighing in at 110,000 TONS! The ship is just under 1000 feet long and carries more than 3000 passengers. Above the water there are 14 stories, not counting the height of the stacks, etc. It was truly a floating city.

After spending August 12th at sea, we pulled into Cozumel on August 13th. We spend the 14th in Belize and the 15th in Costa Maya (Majahual, Costa Maya, the port we visited took a direct hit from the category 5 Hurricane Dean less than 6 days later!). Another sea day (those were FUN!) and we arrived in Nassau, Bahamas on the 17th and returned to Port Canaveral on the 18th. What a time! I was a "cruise virgin" and I have to say, this is the way to vacation! I was so impressed! I used a manual wheelchair for most of the cruise, including trips ashore in port. It had advantages and disadvantages. The obvious advantage is that it is easily collapsed for storage so I could use "regular" transportation (buses, tender boats, water taxis, etc.). The obvious disadvantage is that I had to have someone to push me (and that proved to be a challenge and tiring on a good day!). My arms are too weak to self-propel in a manual wheelchair beyond a few feet, so I am totally dependent on someone else. Add that to the fact that I am difficult to understand when I talk and you have a recipe for some interesting encounters! That said, I didn't die at the hands of any Bahamian drivers while turned backwards in the middle of the crosswalk as the light turned green for THEM!

I am still trying to recover from the trip. I am continually amazed at how easily I fatigue and how difficult simple things are becoming. Soon, without a wheelchair van with a suitable lift, I will not be able to do many of the things I take for granted now. Simply shopping has become something that is beyond my ability without assistance.

Since returning from Florida, I have tried to get at least one box unpacked per day. It is slow going, and I have to stop and sit down and rest frequently. We still have several interior rooms to paint..... any volunteers??? Interior decorating aside, I love our new home and already feel so comfortable here. The house is just so adorable and "homey". I am eager to add my own decorating touches to make it truly "mine".

I was so blessed to have time alone with Catherine before she went off to grad school this week! I can't believe she is getting her masters! And she's too far away in Terre Haute. Please join me in praying that she can transfer to Ball State in the future so she can be nearer our home. I will miss her so much!

Phillip is doing fabulous. He started school on Monday (the 20th) and is taking several challenging classes. I am so blessed to have such an awesome team working with him at Highland. I am also so blessed to have his father and Kimberly watching out for him and taking such good care of him.

Christopher has become a young man over the summer. He is still affectionate and cuddly, but he is so tall and looks so much older! Where did my BABY go??

I hope you have taken time to look around my website recently. There are lots of new things....check it out!

Please keep in touch. Fall is right around the corner (although you wouldn't think it by the blazing heat) and time marches on!

"It is good to have money and the things that money can buy, but it's good too, to check up once in a while and make sure you haven't lost the things money can't buy." - George Lorimer

Love, Claudia

Cruisin'

Tomorrow I leave for a cruise! A friend of mine, also a young PALS, GAVE me and "a guest" an 8 day Carribean cruise! Did I mention that he GAVE it to me??? I am accompanying he and and wife and their children on the Carnival Glory. I am sooo excited, but you know what I am most excited about??? I get to MEET my friends, Ken and Glenda! Yes, you read correctly. I've never even MET them! Amazing. Someone I've never met loves me enough to invite me to join them (and pay!) on a cruise.

God is amazing. He is moving in so many ways. Sometimes, I think God is sitting up in Heaven, laughing, saying "All those years, you worked so hard, tried so hard to control everything and look where it got you. No where. NOW you've finally LET GO of EVERYTHING and look what I am doing! Without your help, Claudia!

I'm going to Florida 4 days early so that we can watch the launch of the space shuttle. Ken is retired from NASA since his ALS (he's not even 40 yet, so "retired" is maybe the wrong word) and lives in Titusville, and we'll watch the launch from near his home. They say it shakes the windows when they launch! :)

I can't wait to see what else God has in store! Love, Claudia

Getting Settled In

We moved, suddenly and sooner than we expected, on July 25th. As it turned out, it was either that day or not until August 15th. So, with less than 24 hours notice, we moved! I was so blessed to have All Star Moving Systems (Atlas Van Lines, Muncie) DONATE the move to us! The owners, Tony and Pam Brown, had been looking for a family to move for free.....in gratitude for all God has given them. And they choose ME! To say that it was a blessing is an understatement!!!!!!!! The move was still exhausting for me and I spent several days in severe pain from the spasticity in my body, but Pam Milligan (Branches of the Vine Therapeutic Massage, Indianapolis) worked the "sore" out and I'm back to full steam!

The house has fewer boxes every day and we are feeling like we are getting "moved in". My dear friend from Young-Nichols Ambulance days (now THAT is ancient history!), Julia (Myers) Smith has been decorating Christopher's room. It is a Disney theme with Mickey border half way up the wall, dark denim blue curtains and paint (on the lower half below the border) and cream paint on the top half. Julia is painting Christopher's name on the wall also, along with three of his favorite Disney Characters (Mickey, Goofy and Donald). He just LOVES his "Mickey" room already and I promise to post pictures when we get it finished.

The plans for redecorating the other rooms are formulating and will be implemented as funding allows. The next room to be decorated will be Amy's bedroom which is currently LAVENDER, then the kitchen will be next after that(currently "wine rack" wallpaper and dark MAUVE paint....ewwwwww). Still, the house is so cute and so "homey". I am so glad we moved. We are close to everything but feel like we're out in the country when we hear the chorus of cicadas and crickets at night and birds during the day. Once the current "air you can wear" heat and humidity pass, I will return to working outside as my strength permits and definitely will spend some more time swinging on my porch swing.

This morning, Pastor Greg (Greg Paris, Union Chapel Ministries) spoke about "How Do I Face the Future?" and one thing he spoke of struck me personally. In Joshua 1:1-11, God instructs Joshua to "be strong and courageous". That is what I intend to do.....live my life, as long as I'm alive, being as "strong and courageous" as I can be, and praying for God's grace to strengthen me and his love to give me courage. I pray that for you too.

Love,

Claudia

We've MOVED!

Just a super fast update to let everyone know that the move is now behind us. We love our cozy cottage! Email me at claudia@claudiasfamily.com and I'll send you an update. There are many very glamorous things you can help with....you know how glamorous moving is! *wink*

Hope to hear from you soon. Our Internet is up and running so I should be able to respond to your emails fairly quickly (within a day or two, when I take breaks from the other 90 million things moving-in entails).

Love, Claudia

Update

Lots happening:

• We've got a contract on a house and if all goes well, we're moving a week from YESTERDAY.....
• We're frantically packing
• Christopher is sick so "frantically packing" means about one box every four hours in between whining, meds and hugs
• I'm trying to pace myself, but I laugh as I write those words
• I'm excited about the prospect of a home I can decorate how I want and that will be a reflection of "me" and my family
• The house we are moving to has a hot tub, and we just stocked up on Coors Light, so if you're interested in partaking in either, there's just ONE catch...you gotta help us with some "stuff"! :)
• Please pray for someone to rent our current house and move in (i.e. start paying rent) IMMEDIATELY when we move out... long story, but we will likely have to pay all of August rent PLUS pay for the new place (ouch)
• Call, write, email, IM, stop by..... I MISS MY BUDDIES!

Love, Claudia

WOO HOO!

Once again I am jotting this entry down in between other things I have to do! Lots of news:

• Had a WONDERFUL visit with my Mother and Sister...they are safely back in California and I miss them already!



• Catherine and Phillip were both here this weekend....it was AWESOME!



• We have put earnest money down on a house in Muncie! It is a single-story, cottage-style, 3 BR, 2 BA and I am SOO excited (there is a picture on my website "announcements" page)



• I got my power wheelchair Saturday: Permobil c500 Corpus. We have a couple of details to "tweak" and I'm set....now I just need a wheelchair van so I can go out in it! :)



• A friend and fellow PALS (person with ALS) has invited (and is paying for!) me to join he and his wife on an 8 day cruise in August and I'M GOING! :) Catherine will go with me as my travel companion and we'll have some much-needed mother/daughter time! :)

Life is good. Love, Claudia

Happenings

Lots of stuff to report:

1. I'm exhausted
2. My mother and sister are here from California for a visit (my sister is here for a conference and it is her first visit EVER to Indiana)
3. I'm exhausted
4. We've found a house to buy on contract with my life insurance proceeds for the payoff...it is in Muncie MUCH nearer to Sharyll. We will be moving in the next 30-60 days
5. I'm exhausted
6. My Permobil c500 Corpus power wheelchair will be delivered tomorrow at 8AM
7. I'm exhausted
8. Catherine and Phillip are here for the weekend
9. I'm exhausted
10. My sister will have several hours to visit with us again on Sunday before they leave Sunday evening (we had a few hours yesterday, too)
11. I'm exhausted
12. I'm not going to get to go to my best bud, Kent's, birthday party tomorrow due to the delivery of my powerchair and my mother's visit :((
13. I'm exhausted
14. Goodnight.

Love, Claudia

Never Confuse Your Career with Your Life

"Never confuse your career with your life"..... those are 7 big words.

I did. And now I'm paying the price. I genuinely thought that the people I worked with were my friends. Several have kept in touch and a few have gone waaay above and beyond to help me and still "be there" for me... but I'm amazed at the deafening silence from the vast majority of the people I worked with...most especially, the people I flew with. I guess we were all too busy trying to stay on top of our game to be human....I confess that I was. I guess it sucked then, but I was too busy and too wrapped up in my "career" to notice. Well, it REALLY sucks now. It makes me sad. Sad for me. Sad for them. We are all less human because we are constantly bombarded by such high expectations and demands.

In the next few months (maybe weeks if we find the right house) I plan to move. I honestly wonder if I'll ever hear from any but that select handful of people (you know who you are) who have kept close.... for the rest I might as well have fallen off the planet. Wow...all that for a flight helmet, huh? I hope I am wrong. I miss my friends and the time we were together working. I miss my "career" but I am glad that I am more human now.

I actually went and sat on a bench at Morse Reservoir yesterday and just sat....felt the breeze on my skin... listened to the leaves rustling on the tree above my head and the gentle waves breaking on the rocks... felt the sun filtering through the leaves... smelled the lake water, the grass, the fresh air. WOW. IT was awesome. I AM human. I was there with my friend Kent and we just sat in silence for a short time and just "lived".

I hope my friends have time to live too.... Love, Claudia

GazeboPalooza - At Last

After many phone calls (thank you SOO much, Amy!) and schelpping the defective gazebo back to WalMart, we arrived home with a new, intact "gazebo kit". It took Amy and I two days to assemble the thing (mostly because Christopher really wanted to HELP....), but I LOVE IT! I even bought a 6 ft mister hose and attached it under the awning of the gazebo for those really hot days when we want to be outside.

Here in Indiana we have had virtually NO rain in over a month. The yard is as brown as the desert and the dirt parched and cracked. Not good for my garden (although the rabbit and birds aren't helping much either), but great for sunnin' by the inflatable kiddie pool! I'm actually getting a little bit of a tan! :)

We had our GoenPalooza crew reunion/awards ceremony last night at Kroaker Heads in Anderson. Aaron and Sharon were there, of course, along with many of the "couldn't have done it without you" people involved in planning, organizing and implementing the Palooza. It was a great time and I am so honored to have been Paloozized! I plan to be healthy enough to attend the festivities again next year! SO THERE!

We are seriously looking for a house now. "Musts" are SINGLE story, minimum 3 br, 2 ba, minimum 1500 sq ft. Must be along the I-69 corridor somewhere between Lapel and Muncie, although first pick is Muncie since Sharyll lives there. Keep your eyes open and contact me if you see a house, especially a FSBO (for sale by owner) or lease-to-buy/contract.

I'm a tired girl tonight, but doing OK. Love, Claudia

Frustration II

Well, for want of a better title, since I had used "Frustration" already, I just am entitling this "Frustration II". Unfortunately, I envision a series....

I never realized how much it takes two people to manage Christopher at times...and if we want to get anything done it takes more. There's the frustration.

Yesterday I went to WalMart and found on of those "gazebos" dirt cheap. A nice one. On clearance. Well, after our screen-tent fiasco (it blew away and collapsed less than 72 hours after we put it up), I had been wanting a "porch" to sit out and watch the birds and just enjoy the outdoors.... and here it was....on clearance!

I purchased the thing (riding around WalMart in my scooter purchasing the 10 items I can fit in my basket is frustrating alone) and pulled the van up to the Garden Center entrance to load it. With my Jazzy in the back of the van, there isn't a ton of space. I struggled to rearrange the Jazzy and the middle seats (the rear seats were already stowed) so that the 10 foot box would fit...while three able-bodied WM employees stood and watched, somewhat impatiently, I might add. Now, my balance is bad and my fine motor skills are challenging and they're just watching with their thumbs up their............you get the pitcure. Anyhow, I finally make a space big enough for the box to fit and head home, totally exhausted but happy that I am still able to shop alone and excited to get a place to sit on the porch!

This morning, Amy and I hauled the box out onto our hand-truck and wheeled it to the back yard to assemble. Immediately upon opening the box it was clear that one of the posts was seriously bent. Not exactly something we could just 'live with'. A call to WalMart found that I have purchased the last one. So we can't even exchange it (and the thought of going through the process again tires me out just thinking about it). Tomorrow we're calling the manufacturer (Southern Living) to try to get a replacement post shipped....but now we have to wait again.

All the while we were outside, Chrisotpher was "helping" (i.e. pulling stuff out of the box, picking up the hammer and heading for the pieces with a demonic look on his face, etc.). My speech is bad enough now that I am not clearly understood and often can't complete an entire sentence without running out of breath. It kind of feels like someone has put cellophane over my mouth when I'm trying to talk. Now picture me trying to intervene with Christopher while Amy's fighting with the packing material and pieces. "Voice control" was not a high point on the menu with Christopher when I could talk CLEARLY and LOUDLY...and it is so much worse now. Kind of feels like herding cats most of the time.

SO, I'm frustrated. Mostly because I can't communicate and my hands don't cooperate and I struggle to do things I could do easily before. And Amy can't do it all!

We are earnestly seeking God's will regarding moving. Needing a one-story home that can be modified for handicap accessibility is becoming more and more of a necessity, but the real question is where to move? Obviously we need to be near "help"... but so far there is no one place where our help is centralized. So the group God is preparing to help us has not yet become physically visible to us. Please join us in praying for God's guidance as to where He has for us to be.

Thanks for your love, prayers and support. Love, Claudia

Summer time...and the livin' is easy

What a beautiful day....Memorial Day 2007. Today Julia, Christopher, Amy and I went to visit Kent and Lana and their extended family south of Indianapolis. We swam in the pool and sat in the sun. We ate yummy food and just generally enjoyed some relaxing time. Kent has ALS, also. He has two children 12 and 14. Keep him and his beautiful and loving wife, Lana, in your prayers. His progression is faster than mine and it is hard to see. It makes me angry! It isn't fair! I've already told God, too! Kent is an awesome man with so much to live for. This time last year he was healthy and symptom-free.

All that said, I am so grateful for the love of friends. I am so blessed to have some awesome friends....and Kent and I would never have met were it not for ALS and he's a great friend....so I suppose in that way I am thankful that ALS brought us together. It is so comforting to know that he and I will be friends eternally and one day we'll both jabber away effortlessly! I don't know what Heaven will be like but I know it won't have ALS in it!

Christopher had a ball today. He adores Kent (who has a "MAN'S truck"... poor kid is just a little testosterone deprived, living here in the estrogen ocean) and had a great time in the pool.

It was a good day. I'm grateful for every day...don't take them for granted. Hope you don't either. Love, Claudia

Tennessee

Here is the journal of our trip to TN:
5.12.07 - Arrived after dark at Hollyberry Lodge what an adorable home with so much “character”!

5.13.07 – Mother’s Day – We explored river’s edge behind the house, went grocery shopping and went to the river and took a “dip”.

5.14.07 – Drove through Gatlinburg – decided that the parking was too remote from what there was to do, found a spot on the river between Gatlinburg & Townsend and swam in the "Little River"!

5.15.07 – Went into Pigeon Forge to get some things at Walmart; decided we would go back for the helicopter museum and Huck Finn’s Catfish Restaurant another day; went back to the "Little River" beach from yesterday and spent nearly 4 hours splashing & swimming.

5.16.07 – Rainy Day. Slept, read, saw a Sandhill Crane at the river behind the house. Picked up trash the coons got into!

5.17.07 – Cooler today but sunny! We went to Pigeon Forge and visited the Helicopter Museum. Christopher LOVED IT!!! (Although a bit over priced it has some cool stuff for helicopter lovers!). We ate fried catfish, hushpuppies and drank sweet tea and drove through the mountains.

5.18.07 Drove up Newfound Gap Road – WOW! We stopped several times to take pictures and one stop to put our feet in the "Little Pigeon River" – the most crystal clear water I’ve ever seen!! Drove to Clingman’s Dome – it was COLD – but the view was breathtaking! What kind of tenacity brought the settlers over that summit?! We were speechless. On the way back down Newfound Gap Road (we didn’t go all the way to the NC side) we saw a young black Bear nibbling in the woods!!! We even got some pictures. We got some books to use for homeschool curriculum when we get back to Indiana. An AWESOME day!!!

5.19.07 Drove through Cades Cove intending to drive Parson’s Branch Road. It was closed due to flood damage, so we continued through Cades Cove. Mid-day, Saturday = lots of people (!) but we still got to see a doe up close leisurely munching on grass. She posed so beautifully for photos! Then we saw a pileated woodpecker, up close and got a photograph that would invoke envy in the birdwatcher or photographers’ heart! We drove up to the Great Smoky Mountains Institute at Tremont and then followed the gravel road to the footbridge. We followed the Middle Prong Trail to see the Lynn Camp Prong Cascade. Last but not least, Claudia & Christopher walked next door to hear some dulcimer music on the Pickin’ Porch! What a wonderful week we’ve had!!

May 20, 2007 Headin’ home to Indiana!

PS There is a 2.5 snake living under the back porch of Hollyberry Lodge– we found the skin in the plants!

Since then.....

I don't know where the days go! Christopher turned 10-years old day-before-yesterday. Catherine graduated from Anderson University (with a BA in English) on May 5th and left for a two-week trip to London on the 9th.

Prior to Catherine's graduation, all we were doing for several weeks was running back and forth to doctor's appointments! Christopher was ill, running a fever for nearly a month. He is doing much better now and the immunologist/infectious disease physician is looking for the "why". We go back for a follow up in just over a week.

Tomorrow we are leaving for a 'retreat'. Amy, Christopher, a friend and I are going to Townsend, TN. Townsend is a little town right on the edge of the Smoky Mountains National Park. Amy and I have visited there numerous times through the years, the last visit being 7 years ago this year! It will be interesting to see how much it has changed.

Yesterday, Rob, one of the pilots I used to fly with came over with his lady-friend and put in a small garden for us! He gingerly transplanted my seedlings from their containers on the front porch into the rich brown soil. He added seeds for other veggies as well. I am SO excited. We will have fresh, home-grown vegetables this summer! MMMMMMM!

In the next week, another friend, Matt, is coming by to build a "retaining wall" around the garden out of railroad ties. Matt is coordinating the effort (and probably doing most of the work) to keep our yard mowed this summer.

I am so incredibly blessed. I am enjoying the slower pace, finally having weaned myself off the adrenalin I lived on for so many years. I am rested when I wake up in the morning for the first time since I can remember. Life is good.

I'll post pictures of graduation and Tennessee when I get back. Love to you all, Claudia

Christopher

Christopher has been sick with sequential ailments for a couple of months now. He's cranky and whiny and feels miserable (and makes life more of a challenge for Amy and me with his 'neediness'). He hasn't been sleeping well at all. I told him before I left for the support group meeting last night that I'd bring him a cheeseburger after the meeting but he was asleep when I got home. This morning he dictated this for Amy to type (FYI: Kathy is his imaginary friend...she is a real flight nurse in Tampa that he saw on Discovery Channel..he's never met her but she is in his life daily!):

Dear Mickey, Mommy, Sharyll, Julia,
I woke up at 3:30. I am sick. My whole body hurts. I am wiping snot all over Amys arm, bed, shirt and my clothes.
I dream about mommys muscles being tired. I wake up feeling very sad and scared. I don't like that mommy has trouble walking or talking. It makes me very, very, very, very angry. Maybe Kathy can help mommy. Maybe Julia and Sharyll can help mommy.
I want to see my friends more times. I miss Sharyll and Julia. They make me feel safe. They talk about Jesus and we pray.
I miss Phillip and Catherine.
I can't wait to see Mickey, Minnie, Goofy, Donald, everyone at Disney.
I am sleepy so Amy says it's time to lay down for a bit and then at 630 I can eat my burger.
I love you
From
Christopher

Poor kid. Keep him in your prayers, too. Love, Claudia

Bureacuracy and real people

I have had a week....fighting with the bureaucracy sea of insurance, medicaid, medicare and DME (durable medical equipment) providers...Today I literally thought I was going to come unglued! The "tipping point" so to speak, was when I got a letter from Medicaid saying that I have an $837 a MONTH spend-down (that is the out of pocket expenses I have to pay before Medicaid will start paying!). I hope and pray that it is a typo....... or that it is $837 a YEAR... good grief! I'll keep you posted on that one...frankly, I no longer wonder why people buy guns and go on killing sprees. What I can't for the life of me understand, is why only private industry, school children and the post office are targeted! (JUST A JOKE FOLKS!!!!!!!!!!!!!)

But then tonight I met some "real people". I went to my first ALS support group meeting. Now, I'm not a real "support group" kinda person, but I did have a cool experience tonight. There was a lady there with bulbar onset ALS who literally could not talk at ALL, and her name is Claudia. After the meeting we started "talking" (she wrote notes on a piece of paper) and it turns out that she got the "loaner" communication device (Dynavox DV-4) that I had for a trial period. And some of the info I had entered (phrases like "I love you Christopher" and some other semi-personal stuff) was still on it. She told me tonight that she had PRAYED for me, as soon as she got the device and felt that she knew my family a little from that information (none of it was private or personally identifying...it is just "coincidence" (ha!) that we met). Someone PRAYED for me who had never even met me or heard of me by name! Because they knew someone out there had ALS and had a young son named Christopher!

Please join ME in praying for Claudia. She is a grandmother and is very rapidly progressing (but you should have seen her eyes light up when she talked about when she dies...she gets to go to HEAVEN!). God is good...even when life is frustrating. Love, Claudia

Slippery Noodle, Sick Kids, Storm Spottin' and a Jazzy

Slippery Noodle - Last Wednesday (April 18th) some wonderful friends of mine organized a fundraiser to help offset non-covered medical expenses at The Slippery Noodle in downtown Indianapolis. It was awesome to see some "old friends" from the past and to make some "new friends" from places as far away as Ontario Canada, Missouri and NYC! Of course it was FDIC week, with 75,000 firefighters attending the convention. Many stopped by "the Noodle" to raise a glass as well. The Band of Brothers Pipes and Drums (a bagpipe corps comprised entirely of firefighters from all over the country) stopped by to play a couple of tunes in my honor....that was AWESOME! I hope you'll take the time to link to the photos and video on the "Slippery Noodle" page of my website!

Sick Kids - Naturally, since there was a big event coming up (my fundraiser), Christopher had to get sick. Just a cold but of course, it has hung on, and now his asthma is flared-up. We started oral steroids tonight... thankfully the first he's had to take since last September! Of course, the poor kid has been sequestered all winter.... now we take him out to Target one time (he rode in their "kid-friendly cart") and he had to acquire the latest germs!

Storm Spottin' - Last night I attended a "National Weather Service Storm Spotter" course at St. Vincent Indianapolis Hospital. So now I have a new hobby.... being a "certified storm spotter". Look out... when those storms come rumbling through I'll be the one outside with my camera!!!! :) Of course, I've always been that person, but now I'm just certified (or certifiable, but most of you already knew that!!).

A Jazzy - Thanks to the kindness and generosity of some firefighters in Goshen, Indiana and a mom and dad who lost their young-adult son to pulmonary fibrosis in 2003, I inherited a Jazzy powerchair this weekend! It is awesome! With some of the money raised at the Noodle, we were able to purchase a collapsible/portable ramp for the van, so once it arrives I'll be able to run errands knowing that I've got my "ride" all arranged! :)

Love, Claudia

Frustration

I am so incredibly blessed emotionally right now...the warmth and caring of friends feels like a big'ole warm fleece blanket wrapped around me........

But, lest you think life is perfect (or think I'm smokin' something), just know that I face my frustrations, too. I received a "Shower chair/transfer bench" today.... ordered off Amazon (100 times faster than dealing with insurance and I got a STEAL!).... assembled by Amy and myself (with the slightly-over-eager help of an autistic 9 year old which probably tripled the time it took to complete the assembly). Got it upstairs and it doesn't work the way I need it to in either bathroom! GRRRRRR. So, I'll just use it as a shower chair for now and tomorrow we make a trek to HomeDepot to buy a grab-bar (the whole purpose of the transfer chair is to be able to sit down and then swing your legs into the tub....Ah, not so much...).

As I sat, fully clothed on the transfer-bench-turned-shower-chair in the empty tub, I told Amy, "OK. I'm tired of playing the special-needs game now." She just laughed. All this has just driven home the need that is looming for a wheelchair van and "handicap accessible" home....

Otherwise, life's good...although I am sorely disappointed in the so-called "spring" that we are having here in central Indiana. We had a one-day "heat wave" yesterday (it got up to 61 degrees) but a line of T-storms moved through in advance of a cold front and today it has not gotten above 35 degrees since sun-up.

But.........my heart is warm.... Love, Claudia

Friends for Eternity

In an earlier post I talked about the fact that I have been surprised to see which of my "friends" have actually continued to have a part in my life since my "retirement", and which of them have not. I remain puzzled by my respective mental "lists."

One thing I can say is that I have made some wonderful NEW friends on this journey. Two special friends I've made are (to my knowledge, anyway) the only PALS (persons with ALS) besides myself in the US that are also former EMS professionals. Danny and Ken share a special bond with me. They have lived the "brotherhood" that is EMS and the fire service. We share a unique sense of humor (some things that some of you might not find so funny we totally crack up about) and a sense of loss at the passing of our time "in service". Then there is Kent, a PALS who lives here in the Indy area. Kent and I don't share a vocational past in common, but we have become fast-friends, none-the-less.

Part of the common denominator is probably that we are all fairly close in age and have younger kids (elementary/middle-school age) at home. Obviously all of us are LIVING with ALS. And all of us share a faith that there is more to this life than what we can see with our earthly eyes....that God is real and that He cares about us! I can't imagine facing this illness without some Hope that THIS LIFE is NOT all there is!!! I hope that my friends (current and past) can feel my prayers that go up for them. I pray that they can live with the hope and joy that I am finding in abundance through this journey. Funny, huh? You get a terminal illness that eventually will lock you in a non-functioning body with an intact mind and you find JOY and ABUNDANCE?! Wow. Isn't God amazing!?

I simply can't imagine living without the love of God in this world, let alone with this illness. It is all to ugly and too hopeless. But with God comes HOPE and LOVE for all eternity and for all situations. Isn't that cool!?

I have a friend who I love deeply who has struggled with God. He was in a difficult marriage and sought counsel and refuge in the 'church' only to be sorely betrayed by the person who was his 'mentor'....this mentor was not just a fallen human (as we all are) but he was a criminal and was caught molesting a child. With that as the breaking point, my friend decided that God doesn't exist or that at the very least "God isn't for [him]". How sad that makes me. I pray for this friend and his children every day. I now see the battle between God and Satan acted out in this man's soul in a very real way. He is a wonderful, kind, caring man. He gives of himself for others in tangible ways. But he has rejected God because he looked for the good in a person to represent God. It causes me to take pause.

"Of one hundred men, one will read the Bible; ninety-nine will read the Christian." Dwight L. Moody.

We don't have to be perfect or sinless, because we will be neither, but we have to LOVE...that's where it all begins and ends because GOD is LOVE. I hope that I have shown LOVE to some of you. I know that many of you are showing LOVE to me. This LOVE is the kind that has TRUE meaning...the kind that isn't seeking anything for self but only seeking to give to the other.. and the irony is that when you give this LOVE you get it back in more abundance than you could ever "demand"! I'm living this right now and I want the world to know that GOD is real, that he DOES love each of us, that this has NOTHING to do with "church" or "religion" but it does have to do with how we will spend eternity. I KNOW that this life, this "world" is not all there is. I've experienced a glimpse of what "heaven" will be like...you and me will be LOVED... totally and completely and UNCONDITIONALLY.

I have another dear friend who lost her 21-year-old daughter on this past Sunday (Easter Sunday!) to complications of a serious chronic illness. Can you imagine the pain of loosing your child? Your precious daughter? I know that I can't. But I do know that in her 21 years she touched more people with God's love than her parents will ever know. She has her "angel wings" now and I can't wait to be with her and the others that I love -- singing with our perfected voices for all eternity. There is HOPE. Hope has a name: Jesus. Love you, Claudia

Out of the Mouths of Babes

It was a wonderful day today... sunny, mid 70's, breezy...my friend, Julia, came for a wonderful long visit...it was perfect. We even saw the most amazing, vibrant DOUBLE rainbow (you could see BOTH ends) after a brief shower moved through. So, this is what life can be like when you slow down enough! :) Nice....very nice.

A couple of cute things have come out of Christopher's mouth in the past 24 hours and I just have to share. This morning Amy woke up with a headache. Christopher wanted to pray for her and this is how it went: "Dear God, Come into Amy's heart. Bless her. Help her headache to feel better. A dream is a wish your heart makes. May all her dreams come true. Forever and ever. Amen." OK, so he's got God and Walt Disney a little mixed up!

Today was Palm Sunday, and Christopher wanted to know what that was about. After sharing the traditional Palm Sunday story of Jesus "riding into Jerusalem on a donkey, like a parade, with people waving palm branches" , Christopher asked: "Why didn't he just ride on a float?"

*SMILE* Love, Claudia

Reality Check

"Love People. Use Things."

Back to Base

Yesterday, for the first time since I quit working last October, I went to visit the (new) PHI Dove Flight 3 base (St. John's Hospital, Anderson, IN). It was good to go back. Some things have changed (they've moved the base from the Anderson Airport to the hospital) and some are still the same (Golden Hour, personalities on base). It was good to go back.

For months after I quit working I couldn't even consider going to visit. It just hurt too much. To say that being an air-medical flight crewmember is an intense and competitive career is an understatement. I would be lying if I told you that "flight paramedic/RN" wasn't part of WHO I WAS. What I realized yesterday is that it was only PART. I am still "me". I always had a life outside of work.

Some of my former co-workers are always mentally at "work" and they ARE (in sum total) "flight nurses/paramedics/pilots". I realized yesterday that while I love what I did (and still do), I was able to go on after a period of mourning my loss. I'm not sure some of my co-workers would be able to do that and it saddens me immensely. Ask yourself "Who ARE you?"...not "what do you do" or "what role do you play in society" but WHO ARE YOU? Are you a person who has a great sense of humor, integrity, steadfastness, industriousness, etc.??? That's what I mean and if you can't answer that question quickly with at least a few personality traits, maybe it is time for YOU to take a quick "inventory".

Emergency Medical Services (EMS) has never been known to foster a great balance between personal and professional life. It is more common than not to have EMS personnel so immersed in their work that they forget (or never even know) that there is life beyond the "lights and sirens". It is no wonder that the divorce rate (not to mention the rate of infidelity among those who remain married) in emergency services (and I include the ER staff in this group) is astronomical.

I am happy to say that, while I may not always have had a good "balance" between work and "life" outside work, I was reassured by yesterday's visit that I am still "me" and that I truly do value other people more than any "thing" or "career".

I miss flying more than I can put into words, but life is still FULL. I am blessed! Love, Claudia

I'll Do It Tomorrow

I just read an interesting story and I hope you'll take a minute to read it and think about it. Click Here to be linked to the story. I'm finding out what our hurried lifestyle looks like....from the OTHER SIDE. Do you know that I have a wonderful, well-meaning friend who has CHRISTMAS GIFTS for us that they haven't found time to get to us yet?? Please don't misunderstand.... I'm not writing this to condemn or criticize or complain. It's just the fact. How many times have I been the person who carried something around until it was so "belated" that it was meaningless???? I never MEANT to procrastinate. It just happened. I had two (and sometimes three) jobs. I had special needs kids at home. I needed my "down time". The dryer broke down...YOU GET THE IDEA. I'm realizing, painfully as I watch the emails announcing "another angel has their wings" on the ALS list serve, that time zips by and before you know it "tomorrow" (and the next day and the next) are gone, sometimes with the people you care about gone too. Yes, this IS about ME but it is also about YOU and ALL those people you love who you are just "too busy" to see, to say "I love you" to, to give a "hug" to. You see, that somebody who needs the hug or the "I love you" will be YOU before you know it..... life is a terminal disease. Check your priorities carefully. Love, Claudia

Come to the PARTY!

If you would like to be a part of Claudia's Champions, an awesome group of folks and maybe some of the COOLEST people on the planet (and NO, I don't mean ME!).... email Sharyll Martin at claudiasfamily@yahoo.com for more information. We're having a get together at my house on April 9th in the evening. I would love to see you there!!! Love, Claudia

To Sleep, Perchance to Dream, er um, Breathe I mean

Well, Melissa (respiratory therapist - RT) came to the house today and brought me my new "gadget"....I'm in for a lot of those (wow, I'd have settled for a home theater system! It would have been cheaper!). This time my new "toy" (ha!) is a Respironics BiPAP S/T. Evidently I was having a LOT of apneas and hypopneas so now I get "timed" respirations with my BiPAP. If my body decides it is tired of breathing (which evidently it had on numerous occasions), the machine will "breath for me" (or as Melissa put it, "you'll get at least 14 breaths per minute, whether you like it or not!") The technical explanation is: "In Spontaneous/Timed (S/T) the BPM (breaths per minute) control is active and synchronized breaths are given. If the patient doesn't initiate a breath within the set BPM interval, a time triggered inspiration is given and the BPM indicator illuminates."

My hope is that I'll feel more energetic during the day if I am actually getting enough oxygen (and, more importantly, less carbon dioxide buildup) during the night.

While Melissa was here, she checked my PIP (Peak Inspiratory Pressure) again, this time lying down (as opposed to at clinic Tuesday when I was sitting up). At clinic my PIP was 50 sitting up. Today, lying down it was 25....big difference and Melissa said that explained a lot.

SO, now I have "better living through pharmacology and TECHNOLOGY"! Love, Claudia

Payin' The Piper

In between big games yesterday, Sharyll and I went to Greenwood to have lunch with a new-dear-friend and fellow PALS (person with ALS) and his wife. Kent is 40 years old, and he and his wife have 2 middle-school-age children. We had a LOT to talk about. Kent also has bulbar-onset ALS and was diagnosed this past December. We spent 3 hours talking (I'm sure we were a funny pair to listen to, both of us slurred and slow!!!) and then Sharyll and I went back to Hinkle to watch Phillip's team win the state championship! It was a BIG day!

While I was gone yesterday, the respiratory therapist (RT) from the ALS clinic called. She downloaded the data from my BiPAP data card and was very concerned (according to Amy, who took the message). Evidently I am still having "more than 30 (possibly life-threatening) hypopneas a night"...since I couldn't meet with her yesterday, and because I know how to change the settings on my BiPAP, she instructed me to increase my settings to an IPAP of 18 and an EPAP of 10 (for those of you who have no idea what I'm talking about, lets just say it is now the equivalent of having a blowdryer on "high/cool" blowing in my nose all night long!). I will meet with her on Monday and will probably need to go to a BiPAP machine that has a rate setting to force breaths for when my body doesn't do it on it's own. With the settings how they are, when I get fully relaxed and my mouth and jaw relax, the air BLOWS MY MOUTH OPEN! LOL.

Today, I have had my worst day yet in terms of weakness, balance and fatigue. I slept until 11 AM, got up and ate and was back in bed at 1 PM. I got up at 2:30 and decided to get a shower and try to do some stuff (you know, have a life), but I found that in the shower I barely had the strength to hold my hands above my shoulders (which, by the way, does make washing your hair a bit of a challenge). Then there was the fact that I felt like I was about to fall over the entire time, and I needed to shave my legs (aren't we women lucky!). There was NO WAY I was going to be able to balance on one leg with the other up on the edge of the tub to shave, so I tried sitting on the side and kept feeling like my feet were still slipping out from under me (and like my butt was soon going to be where my feet were)...so I ended up doing a "quick and dirty" job with both feet flat on the floor of the tub, holding on for dear life to the counter-edge when I finally finished and had to step over the side of the tub. No primping today... I was lucky that my hair dries very quickly or it would've just had to stay wet! And I had to sit on the toilet while drying my hair at that!

The sum-total of my daily accomplishments is negligible, and all that I was able to do was done with arms and legs filled with lead-blood, slurred speech and virtually no "projection" of my voice. Just "payin' the piper"!

TOO MUCH EXCITEMENT yesterday! ;-)

Tomorrow will be better....Until then..... Love, Claudia

A Lesson in Sportsmanship

Yesterday Sharyll and I went to Hinkle Fieldhouse at Butler University to watch my 19-year-old autistic son, Phillip, play with his Special Olympics Basketball team and WIN the state semi-finals at 10:00 AM.

At noon, we met a fellow PALS (person with ALS) and new friend, Kent and his wife for lunch. We spent nearly 3 hours talking about all the changes we are experiencing (he is 40 and has two young children).

Then it was back to Butler to watch Phillip's team play in the state championship at 4 PM. It was a VERY exciting game, and I was so proud of Phillip's team and of his wonderful coaches. It was one of the most touching experiences I've ever had. For those of you unfamiliar with Special Olympics (as I was) it isn't quite what you might imagine. In S.O. basketball there must be at least 3 players on the court who are special olympians, while the other two slots may be filled with special olympians or with "partners" (non-disabled peers).

First let me brag on my friend Lisa's son, Cody, who is a Special Olympian and is the KING of the THREE POINT SHOT! I have never seen a kid who loves to shoot three-pointers so much and does it so well! I lost count of the 3-point baskets he made for the team! It was amazing. Now, for those of you who don't know Phillip, just the fact that he can get out on the court (with all that echoing and those buzzers!) and has learned to listen to the coaches' direction is a huge step. Phillip's team has players with a wide range of abilities, ages and sizes... the team captain is a small 10 year old boy with Down's Syndrome who literally beams every second he is playing......his chubby little legs straining to keep him at the same end of the court as the rest of the team. The biggest kid on the team is more than twice as tall as the little guy with Down's and probably 3 times his weight, but they are best buddies. It is inspiring just to watch these kids interact as a supportive group for one another. There are a few "partners" on the team, at least two of which are on the (regular) high school basketball team. All the "partners" are awesome at making sure that they give all the special olympians an opportunity to handle the ball at some point during the game, to the extent that the special olympian is able. And this is no slow-paced gig. These kids run the court and shoot, dribble and guard with all their heart and soul. The finals was won in OVERTIME with a score of 58-54!

What was so amazing to me was the contrast between the two teams that played in the finals. The other team had greater than 1/3 of it's players who were not special olympians. There were always TWO "partners" in the game......always. Several of the team's special olympians never took the court and it was obvious that their "partners" had not been coached to play as a team with the SO's. They pretty much played "for" them. The coach of the other team acted like many "typical coaches", rolling his eyes at the referee's calls, throwing up his hands in disgust when things didn't go "well" and (again) didn't even rotate in all his special olympians.

Despite this, Phillip's team (the Madison County Scotts) played a fair, sportsmanlike and team-oriented game and they WON. In my opinion, they won, regardless of how the score had ended, because they played honorably and with the values that all athletes ("challenged" or NOT) should embody! I was so proud of everyone and I am so grateful for the awesome coaching (two Anderson University Special Ed/Adaptive PE majors). It was great!!!!!

More on why I have no pictures posted yet in my next blog entry...but I'll get some on here soon. Until then, if you know Phillip and see him tell him CONGRATULATIONS! He's not only learned a little basketball but he's been part of a TEAM of WINNERS in the truest sense of the words. Love, Claudia

STATE CHAMPIONS!!!!!!!!!!!

Phillip's Special Olympics Basketball Team WON the STATE CHAMPIONSHIP at Hinkle Fieldhouse today in overtime!!!! I am exhausted but it was worth every minute! I'll post pictures and maybe some video soon, but I just had to let the world know about this great day!

My ALS Clinic Visit March 20th

Here I go, having to apologize for a long lag between posts....I'm sorry! The past couple of weeks have been pretty busy and I've discovered something... when I "go" for 4 or 5 days in a row without my (3-4 hour) nap, I CRASH. I spent 3 days basically sleeping all day! I have found a level of fatigue that I couldn't have conceived of before. And frankly, it sucks! Oh well, part of the learning-curve. Hopefully, the RT will discover from my BiPAP data card that it is just a matter of tweaking my BiPAP settings and I'll rest better and have more energy during the day. Keep your fingers crossed.

I had my ALS clinic appointment on Tuesday (March 20th). No surprises there (nor did I expect any). My FVC (forced vital capacity) is lower (it was 111% - down from 120% last October and 135% in October 2005)....but still GREAT! I still manage to be "above average"...LOL......over-achiever that I am! My PIP (peak inspiratory pressure) is 50 and that's good too. My shortness of breath is more from airway floppiness and fatigue than muscle failure at this point! :) That is good news!!

On muscle strength I got mostly "4's" on the left side and "5's" on the right (1-5 scale, 5 being the strongest)...so that isn't bad. My reflexes are all still hyperactive (+3 and that won't get better).

I'm having more balance problems over the past month and I'm using a walker when I'm feeling tired, have any distance to walk and can't use a store-provided scooter. On really long treks, like from the Wishard parking garage to Regenstrief building where the clinic is, I use Phillip's old manual wheelchair (someone has to push me most of the time). Still no scooter to be had, but I'm making due pretty well and I'm hoping that I'll get my power chair before summer comes. Of course, then the issue will be that I'll need a wheelchair van, since the power chairs weigh 179 pounds and there won't be any hoisting it manually into the van we have!....no small consideration since I have NO money to put towards a van. But, I'll cross that bridge when I come to it!

I am getting a bath transfer chair to help prevent falls getting in and out of the tub. I've been using the counter next to the tub to hold on to getting in and out, since my balance is off at times, and the physiatrist (physical medicine doctor) and PT think it is time for a transfer chair for fall prevention.

There was talk of my getting fitted for AFO's (leg braces) since they can help not only with balance but also with fatigue, but I'm not sure if I'm ready to take that drastic a step (no pun intended).

My fine motor skills are getting a bit clumsier, again worse on the left, and I got a new "toy" for buttoning (a button hook) that I can use when I feel I need it. In fact, the durable medical equipment rep at clinic gave me a whole CATALOG full of new "toys" I can look forward to (woo hoo). I can't look too far into the future on that, though....hoyer lifts and the like just are too much for me to contemplate!

My neck muscles are also a little weak (good thing I don't have to wear that heavy flight helmet any more I guess *sniff*). Dr. Pascuzzi is concerned that I get a power chair with good head support right from the start.

For those of you who read all this and have no idea what any of this means, the summary is "I still have ALS and it is getting slowly worse with my left side progressing - loosing strength and dexterity - faster than my right. I'm still the same crazy, stubborn and persistent person I was before, though, so not to worry!"

Love, Claudia

Invisible People

March 10, 2007 - Spring is trying to come to Indiana. Right now, at 5:30 PM it is 53 degrees with a light wind. Earlier, while breezy, the sun was shining and it was rather pleasant outside. Phillip is here today and earlier, Amy, the boys and I had a "picnic" lunch out on the back patio. Nothing fancy, but we breathed some fresh air and saw a little sun. After we finished our PB&J's, the soccer ball came out and (with significant grumbling from Phillip) we "kicked" it around. I was pretty proud of myself...actually got up and walked around in the yard a little and even kicked the ball once or twice...then I got ambitious and Christopher and I went around to the front of the house...the flower bed in front was full of dead foliage from last fall, and I began to pull up some of the easier-to-pursuade detritus. It wasn't long though, before I was feeling like I just couldn't keep standing up without leaning on something. At first I tried the rake that I had grabbed to help clear the flower bed of the 'junk', but I immediately realized that rakes aren't much help when you want to "lean".
On Thursday (the 8th) I went to see my friends Judy and Tim at Riley for my wheelchair fitting. As always it was a pleasure to see them (Judy is an OT who specializes in wheelchair fitting and Tim, well, he's the "tool man" ... or as I like to call him.. the MIRACLE worker when it comes to wheelchair adjustments and modifications!). Anyhow, while I was there Tim gifted me with a walker that had been "longing for a home" for quite some time. TODAY, I gave the walker it's first "test"...there in the front yard, I was leaning on the walker and trying to "particpate" in the yard work. Now, suffice it to say that it isn't easy to get much done with Phillip and Christopher "helping" on a GOOD day...and I quickly realized that I had bitten off more than I could chew. Amy was great to jump in and "pursuade" Phillip to help with gathering the dead foliage. Christopher was content (for about 3 mintues) to just walk with me (and my walker) down the sidewalk. Eventually, even this was too tiring for me (we made it past the distant property-line of the house next door!) and I "sat" while Christopher chopped on and dug at the only remaining pile of "snow" (more like dirty ice pellets) obscuring the sidewalk. While we were enjoying our outdoor activities, several of our neighbors were coming and going.
Mind you, we live in a nice, suburban neighborhood, full of young families with the 1.3 children and the 2.4 cars they're supposed to have. Last evening (yesterday was warmer than today) there were probably 15 children (ages 1-10) and 8 adults in the street, gathered together just enjoying being outside for the first time in months. By that time of day (6 PM) though, our day is "over"....Christopher is in near-to-full meltdown mode from fatigue (and so are we!) so all I could do was watch the social gathering from my window with envy.
Today, as the neighbors passed by our home...with my "family" all outside, all I saw was averted gazes. We were "invisible"...in this "friendly" neighborhood where everyone waves at everyone else when they drive by...there were no waves, no greetings, not even any curious stares. I'm not sure why we were "invisible" today, although I have my suspicions. And, yes, it was obviously an intentional act on our neighbors' part to ignore us.
My suspicion is that we were "invisible" because we are "different". Maybe they think Amy and I (two adult women living in the same house) are gay (although I doubt they think that about the two young-adult men who rent the house next to us on the south)...maybe it was "all those disabilities" (two obviously mentally "challenged" boys and a woman who "looks fine" but talks like a drunk and uses a walker).
Regardless of the "why" I can tell you that it bugged me. Next time you see someone "different" I hope that YOU just take a second to share a quick but sincere smile. It is amazing what that simple act means. Love, Claudia

Porches

March 2, 2007 - The wind is howling outside....Indiana spring is around the corner. I am SO ready for warmer, sunny weather. I am excited that this year I might be able to spend some "leisure" time outside enjoying the sun and the breeze. My dream house has a big 'ole porch that is about 10 feet deep...plenty of room for a few rocking chairs, a wicker loveseat set and maybe a porch swing. I love to sit on a porch...something that is missing on almost every house built after 1930 it seems. I love our subdivision, but everyone works all day and when they get home they're too busy working at home to just "set a spell". Now, I realize I sound like a grandma Moses here, but I've longed for the front porch moments for as long as I've lived away from my parent's home. Especially with hyperactive autistic kids, the serenity of a porch just sounds that much more appealing.
Years ago, when Christopher was 2 and I was a full-time student at Ball State, we lived on a house on West 5th Street in Anderson. Now, those of you who know Anderson know that this is by far not the WORST part of town, but it is far from the best. But the wonderful thing there (besides having the world's greatest landlord, Tim Basey) was that the house had character. The house was built in the 30's or 40's and had a front porch...not the porch of my "dream house" but a nice-sized deep porch. We put a gate up at the top of the stairs to the porch and Christopher (who didn't walk until after he was 2) could crawl around in relative safety while we sat, had a glass of tea or just watched the world go by. It was nice....relaxing and some of the best memories I have of that house were of that porch. Unfortunately, the area surrounding the house wasn't the greatest, and within less than a year there had been several serious crimes committed within a few blocks. The final straw was when Amy stepped out the front door with Christopher to find the police, guns drawn, making a felony arrest right in front of the house....instructing her to "go back inside...NOW!". Time to move and, well, let's just say that the move (to Muncie, so I'd be closer to school and have more time with the kids) wasn't a move "up" in terms of housing. But I remember the porch on 5th Street. And when I think of spring, I think of sitting on a porch with the birds chirping and the breeze blowing... only this time in my imagination I am in a motorized wheelchair. I can't sit in the porch swing or rocker. But I can still take in the sights, sounds and scents of spring. I hope that by the time I'm in that wheelchair full-time, I have a porch like that to retreat to.
I am so grateful that I now have time to stop and look forward to spending time doing those things I didn't have time for when I was working 2 or 3 jobs just to make ends meet. I have so much to be thankful for!! Much love, Claudia

The Spoon Theory

February 16, 207 - Life is different now...of course, my life was different than 'most' before ALS....raising children with special needs changes even the most basic day-to-day tasks. Not that life is WORSE, but it is different. Today I stumbled upon a story that helps explain how my life was different even before ALS and especially how it is different now. The story is called "The Spoon Theory" and it was written by a young woman with Lupus. I encourage you to read the story by clicking here (this is a .pdf document and you will need the free Adobe Reader to access it). And the next time you face a choice about what to do...think about the number of "spoons" you have in your life. What the story doesn't discuss is how those around us can share their "spoons" with us. This is a perfect time for me to thank those of you who have taken the time and effort to "lend a spoon"...in so many different ways. There are so many things that you may take for granted that we no longer have the luxury to.... Now, make NO MISTAKE (!) I DO NOT WANT PITY from ANYONE. I have a wonderful, rich life full of blessings! But, sometimes, I do need help...and that need will only increase as my ability to function declines. I am grateful to those of you who choose to help....the co-worker and neighbor who just stops by with jugs of distilled water for my BiPAP because she knows I need it every night...the co-worker who mowed my yard (before the deep freeze hit!)....the friend who stopped by just to say "hi" and took time to play with Christopher....the friend and co-worker who cleaned my bathrooms and of course the friends and strangers who have donated as well!!! There is no gift too small. You bless me with an email or an IM and I need that friendship as much as we need material and tangible help. THANK YOU!
I hope you'll take the time to read "The Spoon Theory" and that it reminds you of all the blessings you have in your life! Don't take your "spoons" for granted! As the author of "The Spoon Theory" says: “I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.” Love, Claudia

News Update

February 13, 2007 - For those of you not in central Indiana or the upper midwest...yes, the weather here today is the PITS...at my house we're getting snow and sleet with gusty winds and near-white-out conditions at times. Good day to stay HOME! ;)
Speaking of home...my mom is home from the hospital. Everything that could be emergent checked out "OK". She's had a rough month....and I'm sure the stress would be getting the best of any of us under the circumstances!
I'm feeling pretty well today...just tired, but it is a great "nap" kind of day (lucky me!).
I'll post more later. Love, Claudia

The "Champions"

"The Champions"

February 12, 2007 - Well, all the build-up and POOF...my wheelchair fitting appointment today was cancelled because the OT that was doing the assessment broke her leg (what a LAME excuse!)...and tomorrow's ALS clinic was cancelled because of the freakin' blizzard we are supposed to get. SO. Back to square one. I'm glad there is no urgency in getting things, because the "system" knows no sense of urgency!
My speech has been really bad today. On really bad days, along with the slurring, I feel like the back of my throat has just "collapsed"...and I talk really nasal and can't articulate and it is very annoying (I think I sound like people used to with cleft lip...back in the old days before they did good repair...YES, I'm old, I admit it!)
Speaking of old...I had a fun experience in WalMart the other day. I was walking along in the health and beauty (LOL) section and a lady was handing out samples...she stops me and asks if I'd like a sample of the new Dove product...I say "sure" and she proceeds to explain that this new product is Dove Pro-Age and it is the new line for WOMEN OVER 40! Now, I AM over 40, but not THAT much (OK..I'm 45) and I didn't think I look THAT OLD!!! WAHHHHHHH! You know my favorite saying is "It's not the years, it's the miles"!
My mom is still in the hospital, and I have no real idea what is going on since I can't talk on the phone and I'm getting all the medical info 4th hand (doctor---->my sister-->Amy--->me). It is so frustrating not to be there. Last night there was talk of a "TIS" according to Amy...and I'm thinking, "do they mean TIA or is this something else???". Amy and my sister are both really trying to keep me informed...but medical jargon is not their 'native tongue' like it is mine and I, of all people, understand how hard the jargon can be to understand!
Christopher has had a whiny, grumpy day. I can't tell what is wrong with him....he has big black circles under his eyes, but no other real symptoms. If he could only tell me!
I'm SO proud of Phillip and his basketball team!

Well, I'm off to indulge my once-a-week, can't-live-without-it moment of TV and watch "24"! Love, Claudia