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
Tuesday, April 24, 2007
Thursday, April 12, 2007
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
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
Monday, April 9, 2007
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
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
Sunday, April 1, 2007
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
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
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