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
Thursday, March 15, 2007
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
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
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
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!
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
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