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