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
Monday, May 28, 2007
Friday, May 25, 2007
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!
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!
Friday, May 11, 2007
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
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
Friday, May 4, 2007
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
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
Thursday, May 3, 2007
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
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
Subscribe to:
Posts (Atom)