For the first time, I mean, EVER, we took pictures of our whole family! We finally got down and found the tripod, and set the camera to a 10-second delay, and took advantage of the photogenic trees in our backyard, and took a picture! I'm trying to make it a new family tradition. We did it on Thanksgiving Day, right before the big meal. I'm hoping that timing will remind us to do it again next year! :-)
This is the Astrophysics Lab, after all, isn't it? I probably should list some sort of astronomical phonenoma every once in a while. Thanks to my computer program, Stellarium, which is available free online, I found out that two nights ago was a great night to take this picture.
This is a crescent moon, of course, with Venus (the brighter one), and Jupiter (more dim). Beautiful, isn't it? :-) We had fun taking pictures out there. I should do that more often!
About two weeks ago, the kids talked us into going miniature golfing. It turned out to be a great idea, and we had a lot of fun! The only bad part about it was that we had to drive an hour to get to the nearest mini golf place that was wheelchair accessible. The close golf place is up on a high hill, with lots of steps, and no ramps, so there's literally no way to get to it. But, the good news is that now we have a mini golf place we can go to. It was lots of fun. There's even a movie of it below!
I wish there were more greedy capitalists. 'Greedy capitalists' is a phrase my Dad says. I thought it was a bad thing when I first heard it, when I was young, but he taught me that it means a person who wants to work hard to earn more money. That's a very good thing. He used to have his own store, and if someone wanted to use his business a few minutes after he closed, but he was still there, he would open the doors, and stay a while longer. That's how you make more money. This was a great lesson.
I just took my first offical yoga class. I've been doing it at home for 11 years. I was inspired to keep doing yoga even with my new limitations by a guy I heard of in Minnesota whose legs are paralyzed and who teaches yoga. I've been doing it at home, what I call "floor yoga". And I'm hobby-shopping right now, so I thought a real class would be fun. I wasn't too concerned about it. I can get on the floor, and do lots of things, just not the standing stuff, or the raising your legs stuff. I figured I would just do my best, do what I can..
I went on Monday to check out the place. It was nice. I asked the lady who showed me around if I could just stay on the floor for the standing poses, and just do what I can do and not do what I can't. She said it was fine.
I picked Yoga Yoga's easiest class, called "Gentle". The class flyer descrbes the Gentle class by saying "These classes support people with limitations." I know I can do harder yoga than "gentle", but I went to that class anyway, in attempt to follow the ways of the yoga studio.
I was late. I wasn't really late, but I was made to be late. There are only two disabled parking spaces near the studio, with a reserved space in between them. Look at disabled spaces next time you're out, there are reserved spaces between the spots, with yellow stripes, some on the left and some on the right of the parking spot. Since I am on the drivers' side, the left, I need extra space on the left to assemble my wheelchair. I lift it over my head in the car from the passenger seat to the ground out the left door. Then I have to put the wheels and cushion back on it to assemble it, and then turn it around into position for me to get in it from the drivers' chair. Anyway, the parking space with the left space was taken, so I went to the other one, and attempted to assemble my wheelchair, but it was physically impossible. It was too close to the next car on my left. I had to lift the chair from the pavement up over my head, while sitting in the drivers' seat, and I still didn't have enough room to turn it around, it was stuck. By now my arms are killing me, I'm sweating like crazy, and five people are resting at the sidewalk in front of me not caring at all. Then, a lady who can walk without visible ailment comes to the car on my right, in what I'd like to call "my parking spot". So, I lift the chair high in the air again, mostly with just my left hand, to disassemble it to put it back in my car, so I can move over one space. Assuming it was physically possible for me to get my chair unstuck between those two cars, and that wasn't looking promising, I also had the high risk, since I was parked pretty much on the yellow line, that a new car would be parked even closer when I returned to my car, thus completely preventing me from accessing my car. I had to take the extra time and effort to move. Unfortunately, the other lady took her sweet time to get out of the parking space. By the time she did, my class had started. Once she moved, I quickly moved to the other space, and unloaded my chair, again.
I "ran" into the yoga place, handed them my first-day form, then went to the class. I was 4 minutes late. I felt awful about it, but it really wasn't my fault. I would've been at least 5 minutes early if I could've used any parking space like everyone else can. Anyway, this probably started me out on the wrong foot with the yoga instructor. One lady and her mat were blocking the door, so she and a few others had to get up and pick up their mats in order for me to get to a space in the back of the room. The instructor asked if I wanted to use a raised platform space at the side of the room, it was about 3 feet off the ground, higher than I was seated in my chair. Unfortunately, the parking experience made my "kindness" factor a little low, so I just answered logically instead of super-politely. I said, "how would I get up there?"
Class resumed, and we did some floor things. My left arm was killing me from all the overhead chair lifting, so I kept trying to sneak in some arm stretches. It was unfortunate that I couldn't focus on what I was doing in the class, like the others there, because I had just injured my arm while trying to do something they take for granted: parking and getting out of my car.
When it came time for the first pose I couldn't do, a forward bending pose on all fours, I just sat with crossed legs and bent forward. I was quite proud of myself, that I was adapting and doing well. The instructor came over to me and said you have to do this pose in order to stretch your lower back. I said, yes, that's why I'm leaning forward like this. Then, he tried to talk me into doing it correctly again, up on all fours, and I just looked at him, surprised. I said, "am I making you uncomfortable?" He answered no, but it was clear that he wasn't okay with me not obeying his every word.
The class continuted. It was hard, because I had to work a lot harder than everyone else to do similar things, but I worked hard, and I got some good stretching and exercising done. I felt good about it. Though, I did feel like it was kind of a waste of my time, and that I should just do yoga at home like I'd been doing for years, because some things they do I just can't do, and are a waste of my time. Likewise, because of my leg spasms, and because my arms are getting so strong, I needed extra work for those issues. I should just do it my way.
At the end of the class, I hadn't yet decided if I would continue coming or not. I thought I wouldn't burn any bridges, and I would ask the instructor what might make him more comfortable about me being in the class. I just asked, "are you okay with me coming to your class and just doing what I can? I did my best, I'm just not physically able to do some poses." (and I was expecting that the wheelchair was a big tip-off to him) I continued , "I spoke with a lady about this on Monday and she said it would be fine." He said something to the effect that no, it's not okay to not do every pose. Then he said "you should just keep doing yoga at home."
That was a shock. I went to the front, and paid for the class. The great lady, the same one I spoke with on Monday, offerred to give me a free class, but I don't like to be in debt, so I paid anyway. She said "ah, first class." I said "last class," and I told her about it. She said she would talk to the management and call me back. I told her that I specifically went to that class because it was for "people with limitations." I also said that this was a business, and I figured they'd rather take my money, than require that I do every pose, even when I'm physically unable.
I was quite surprised by all of this. Why would they care what I did, as long as I did my best? I've heard it said that the disabled are actually the largest minority group in the country, from a population point of view, and I never thought much of it. But, I think, today I was discriminated against, and for no good reason.
At least I won't let it get me down. I just wanted to write about it, now I feel better, having recalled the story. I can take care of myself, do my own yoga, and keep my money. I'll be fine. I did ask the nice lady, however, to remove the phrase "These classes support people with limitations" from their paperwork. I told her I want other disabled people to know that they're not welcome in that yoga studio before they take their first class.
This is a newborn Alexander, he's about 5 days old here. He just had his 9th birthday a few days ago, so this picture is almost EXACTLY 9 years old. Cool!
We were teaching the kids about our great country, and the freedom that makes it great. We also talked about the men who created the country and those in the military who protect our country and its freedoms. While doing that, I introduced the kids to this song, which is a great song honoring the troops and the freedoms of our country. Here, I thought I would share it with you as well. :-)
Well, I think I'm finally finished with doctors. We've been seeing a very good Neurologist. Over the past month, I've been going to get even more tests done. I've had 2 MRIs, an EMG test, blood tests, reflex tests, and we've transferred our doctor all the records from other doctors I have seen, including the Endocrinologist I saw last year. Unfortunately, after all of the testing, the Neurologist gave us the same answer that the Endocrinologist did last year... that there's something wrong with me, but they're not exactly sure what.
When I last wrote on this topic, I had old information, and now I have new. At the time, I told you that I had cerebral palsy. I, indeed, had been told that I did, but that was a long time ago. However, doctors I've been seeing these past few months have now ruled out cerebral palsy. I guess it was easier to see what I have/don't have now that the symptoms are worse. My current neurologist says that it is some sort of neuromuscular disease, though he doesn't know exactly which one. My muscles are fine, but they have found atrophy in my spinal cord, which explains the loss of movement. I still have almost complete sensation in my legs and torso, so that is great. This is because my spinal cord damage is on the inside of the tract, where the nerves go down to the legs, whereas the outside of the tract, where the nerves send sensation up to the brain, is mostly unaffected.
It could be Hereditary Spastic Paraplegia, which fits my symptoms perfectly, or if not, it's something similar to it. Our doctor has told us that there are cases like mine in which you can find what's going wrong, you just can't find what caused it in the first place. He says that happens a lot in neurology. I guess it's a complicated field of study, with nerves being so small and all. :-)
As for a prognosis, I'm expected to stay the same. It's possible that it could get worse in a decade or two; we just don't know until it happens. At least I won't get any worse for a while. That's fine with me. Staying the same is better than the quick changes I went through at the beginning of the year. I'm so happy to just stay where I am, so I'm glad that's what we were told to expect. So, that's it.
I'm glad that Brian and I have adapted to our life. It looks like there isn't any sort of treatment or medicine available for me, even if I was completely diagnosed. Nothing that could help me walk better. The doctor did offer botox shots to help with the muscle spasms in my legs, if I am interested. But I'm really keeping that controlled with lots of yoga, but there's nothing that can be done about the too-weak muscles.
That's the story. I wanted to let you all know what we had learned. Oh, and by the way, I finally got around to getting a disabled parking permit. Yay! That's been really nice! It's nice not living in fear that someone will park too close to the driver's side of my car and I won't have room to roll up to the door and disassemble my wheelchair. Now I feel much more taken care of.
Last Sunday, at church, all of the disabled spots were taken, so I parked far away in the back, and I parked in the middle of two parking spots, so that I would have the extra room I need on the driver's side of the car. I hoped no one would mind, but I also hoped that my disabled plates and the full disabled parking section gave me the permission to take up two spots. No one complained, so I guess it was okay. :-)
We got handicapped plates put on my car, and there's a rear-view-mirror placard we can use when I'm in someone else's car. About two months ago we had hand controls installed in my van, which are wonderful. Let's see, what else... all of the plates and cups have been moved lower in the kitchen, the boys are getting good at doing all of their new chores, we have a stair lift chair and a second wheelchair for upstairs, and a ramp to get down to the garage which is one step down.
I've learned how to open any door and get through it by myself. And I got some wide and cushiony tires on the front of my wheelchair, so now I can go over dirt, grass, and occasional rocks just fine. So, life is all settled once again. I'm so glad that this crazy summer is over.
Drop in solar activity has potential effect for climate on earth.
The sun has reached a milestone not seen for nearly 100 years: an entire month has passed without a single visible sunspot being noted.
The event is significant as many climatologists now believe solar magnetic activity – which determines the number of sunspots -- is an influencing factor for climate on earth. According to data from Mount Wilson Observatory, UCLA, more than an entire month has passed without a spot. The last time such an event occurred was June of 1913. Sunspot data has been collected since 1749.
When the sun is active, it's not uncommon to see sunspot numbers of 100 or more in a single month. Every 11 years, activity slows, and numbers briefly drop to near-zero. Normally sunspots return very quickly, as a new cycle begins.
But this year -- which corresponds to the start of Solar Cycle 24 -- has been extraordinarily long and quiet, with the first seven months averaging a sunspot number of only 3. August followed with none at all. The astonishing rapid drop of the past year has defied predictions, and caught nearly all astronomers by surprise.
In 2005, a pair of astronomers from the National Solar Observatory (NSO) in Tucson attempted to publish a paper in the journal Science. The pair looked at minute spectroscopic and magnetic changes in the sun. By extrapolating forward, they reached the startling result that, within 10 years, sunspots would vanish entirely. At the time, the sun was very active. Most of their peers laughed at what they considered an unsubstantiated conclusion. The journal ultimately rejected the paper as being too controversial.
The paper's lead author, William Livingston, tells DailyTech that, while the refusal may have been justified at the time, recent data fits his theory well. He says he will be "secretly pleased" if his predictions come to pass.
But will the rest of us? In the past 1000 years, three previous such events -- the Dalton, Maunder, and Spörer Minimums, have all led to rapid cooling. One was large enough to be called a "mini ice age". For a society dependent on agriculture, cold is more damaging than heat. The growing season shortens, yields drop, and the occurrence of crop-destroying frosts increases. Meteorologist Anthony Watts, who runs a climate data auditing site, tells DailyTech the sunspot numbers are another indication the "sun's dynamo" is idling. According to Watts, the effect of sunspots on TSI (total solar irradiance) is negligible, but the reduction in the solar magnetosphere affects cloud formation here on Earth, which in turn modulates climate. This theory was originally proposed by physicist Henrik Svensmark, who has published a number of scientific papers on the subject. Last year Svensmark's "SKY" experiment claimed to have proven that galactic cosmic rays -- which the sun's magnetic field partially shields the Earth from -- increase the formation of molecular clusters that promote cloud growth. Svensmark, who recently published a book on the theory, says the relationship is a larger factor in climate change than greenhouse gases. Solar physicist Ilya Usoskin of the University of Oulu, Finland, tells DailyTech the correlation between cosmic rays and terrestrial cloud cover is more complex than "more rays equals more clouds". Usoskin, who notes the sun has been more active since 1940 than at any point in the past 11 centuries, says the effects are most important at certain latitudes and altitudes which control climate. He says the relationship needs more study before we can understand it fully. Other researchers have proposed solar effects on other terrestrial processes besides cloud formation. The sunspot cycle has strong effects on irradiance in certain wavelengths such as the far ultraviolet, which affects ozone production. Natural production of isotopes such as C-14 is also tied to solar activity. The overall effects on climate are still poorly understood. What is incontrovertible, though, is that ice ages have occurred before. And no scientist, even the most skeptical, is prepared to say it won't happen again. Article Update, Sep 1 2008. After this story was published, the NOAA reversed their previous decision on a tiny speck seen Aug 21, which gives their version of the August data a half-point. Other observation centers such as Mount Wilson Observatory are still reporting a spotless month. So depending on which center you believe, August was a record for either a full century, or only 50 years.
Below is a letter that I just wrote and submitted to the City of Austin. There is a wonderful 3 mile paved trail through nature on my side of town. I want to use it to exercise and get out like I used to when I hiked a lot. It is only for bikers and roller bladers. Originally, it was just bikers, the roller bladers were given permission about 15 years ago. Anyway, to be brief, I think I'm a lot more like a bike than a roller blader is.
I have recently become disabled and wheelchair bound, and I would like to use the veloway for exercise and to train for our city’s many races. I used to love hiking and my heart is breaking at not being able to hike anymore. All of the trails in Austin are very rocky, and I need a nice paved surface for my "hiking". I called the city of Austin last month and they said wheelchairs are not allowed on the veloway.
I'm not slow. I'm very athletic, I push a manual chair, and I go very fast - as fast as a sprinting runner, though not as fast as a bike at full speed. I’m definitely faster than a roller blader. My wheelchair has much more in common with bicycles than with roller blades. Also, allow me to mention, my wheelchair has wheels! I am not a pedestrian, and I would not be using my feet at the veloway.
I strongly feel that I qualify to use this city’s resource, and I ask for the rules to change to allow me to use the veloway.
I have two sons who would be riding with me on their bikes. I can not bike along with them, and they love to bike and use the veloway. They are not old enough to go alone. If I can ride on the veloway, then they will be able to as well.
The veloway does not have many parking spots, yet of those few, three are handicapped spots! My only guess is that those spots are for those with handbikes. The problem is that handbikes are $3,000 each! There is a huge difference between requiring someone to own a $100 bike and requiring them to purchase a $3,000 handbike in order to use the veloway.
Just because my chair has four wheels instead of three, I believe that I should still be allowed to use the veloway for my exercise.
I can't go the miles I want to go on Austin's many rocky trails, and every sidewalk and street in town are graded, angled, so that rainwater can run off of them. This means that when going down a sidewalk, half of my body is lower than the other half of my body, so in order to not roll down into the street, I must push with only the street-side arm. This is incredibly exhausting and provides no exercise for the arm that is facing away from the road. It’s clearly not a method of exercising.
There are no paved hikes available to me in Austin. I only want a trail to use, just like all other bikers, joggers, walkers, and roller bladers have throughout our great city. Such a trail does not even need to be built. I just ask that the City expand the definition of the veloway as has been done in the past: when roller bladers were given access to the wonderful trail. Now, please give wheelchair users access to the trail as well.
There are probably no such things as Rights regarding trail usage. It’s not required by the law that gave me three parking spaces and full access to a trail that I am not permitted to access. However, in a progressive and health-oriented city like Austin, I ask that I be allowed to use the Veloway without spending $3,000.
I saw this on a site, and thought it was a good list. So, I thought I'd post it here, just in case anyone is curious. I especially like #1, #2, and #6. :-) Have a great week!
1. Do not automatically hold on to a person’s wheelchair. It is part of the person’s body space. Hanging or leaning on the chair is similar to hanging or leaning on a person sitting in any chair. It is often fine if you are friends, but inappropriate if you are strangers.
2. Offer assistance if you wish, but do not insist. If a person needs help (s)he will accept your offer and tell you exactly what will be helpful. If you force assistance it can sometimes be unsafe as when you grab the chair and the person using it loses his/her balance.
3. Talk directly to the person using the wheelchair, not to a third party. The person is not helpless or unable to talk.
4. Don’t be sensitive about using words like “walking” or “running.” People using wheelchairs use the same words.
5. Be alert to the existence of architectural barriers in your office and when selecting a restaurant, home, theatre or other facility, to which you want to visit with a person who uses a wheelchair.
6. If conversation proceeds more than a few minutes and it is possible to do so, consider sitting down in order to share eye level. It is uncomfortable for a seated person to look straight up for a long period.
7. When children ask about wheelchairs and people who use them, answer them in a matter-of-fact manner. Wheelchairs, bicycles and skates share a lot in common.
8. Make sure meeting places are architecturally accessible (with ramps, modified bathrooms, wide doors, low telephones, etc.) so that people with disabilities can be equal participants.
9. Encourage your community to put “curb cuts” in sidewalks. These inexpensive built-in ramps enable wheelchair users to get from place to place independently.
10. Make it a point to try to reduce barriers in your physical surroundings. Often these barriers have been created by architects, engineers and builders who were unaware. A simple “How could someone using a wheelchair get in here?” will help identify any barriers.
Taken from the handbook entitled Free Wheeling published by the Regional Rehabilitation Research Institute on Attitudinal, Legal and Leisure Barriers, Washington, D.C.
I'm tired of so much. I'm tired of the question "do you have MS or MD?" 'It's neither! It's CP, not that you need to know.' (I don't really say that, it's just what I feel.) I got asked that today for like the 7th time. I'm tired of little kids asking why I'm in a wheelchair. I just want to answer: "I can't walk, ok. Want me to have to admit it to you? Because I won't admit it to myself, so why should anyone else get the honors?" I don't wanna talk about it sometimes.
I had a hard day today. There's a term I've heard on the internet called supercrip. And you know, some days, I just don't feel like being the supercrip. Today was one of those days. No big deal normally, I could just slink around the building, and not draw attention to myself. Those days are gone, my friend. Never again will I have the sweet pleasure of entering a room without drawing attention to myself. :-(
Usually, I'm fine, and I can do all the sweat and toil it takes to get ready to go out, and to get around the church building, and to field way-too-personal questions from people. Either deal with not knowing, or get to know me and I'll tell you everything. :-) But when they just want the soundbyte, and otherwise don't talk to me at all, sometimes it feels less like they care and more like they're just using me for information.
I'm tired of going for a door at church, and having MANY people try to help me. I want to say it's 18 people, but really it's more like 4 or 5. Still, that's a lot. It's a door, how do they think I get around the rest of the week? One person helping would be fine, not that I need it on those interior doors. Now, the outside doors are worse, though, because there you've got the combination heavy door with bumpy threshold on the ground. Not to mention that it's one of those things where you have to go through two successive doors just to get in the building. I have to use both hands to do a minor wheelie to get my front tires off the ground in order to get over the bumpy threshold. That's easy, unless of course, I'm holding a door that's so heavy I can't push it out at all to make it swing open for the 2 seconds it takes to pop that wheelie to get over the bump. So, I almost fell today trying to get into church. So embarrassing!
At least I figured out that if I go backwards up the ramp in the parking lot that it's possible to get up that steep hill. That ramp is too steep by ADA standards for a self-pusher in a wheelchair. They probably don't care, though. The only people to use that building are those in motorized chairs and those being pushed. No one's ever had to go through these hoops before like me.
That ramp isn't actually so bad. The worst part is when folding chairs are set up with too narrow of an aisle for me to even enter a room without people and chairs being moved to make space for me. That happened TWICE today!!!!
Brian and I have been going rounds this weekend over something as simple as who should hang up the clothes. Because I just can't do it. Not only am I too short, but the doorways into the boys' room and into my closet are too narrow for a wheelchair. I just can't do some stuff. He says I should make Alex do that too. Alex is doing so much. He already does all the grocery shopping and all of a lot of other stuff too. I feel so bad for him.
I feel awful that I have to make Alex do sooooo much. He's really not tall enough, but still he stands on our 2 step ladder and dives down into our washing machine repeatedly on laundry day to get the clothes out so that we can dry them. He's really too short for it, he has to stretch so much to reach every last sock, but it's the only way to wash clothes.
I'm just not in the mood to be supercrip today. I wanted to stay home.
My other two nephews. Sebastian, one sister's son, on the left, and one of our other sister's sons, Jacob, on the right. Jacob is Jordan's older brother. I love my nephews!
Sam likes to sleep holding something, so recently I gave him Purple Bunny to hold. Then we decided to put him in Sam's stuffed animal sling. Purple Bunny is 31 years old -- my mom got him for me when I was 3 and in the hospital. I love that bunny! :-) Now I get to share him with my son.
Here's a picture of Zoe, my new wheelchair, for those of you who don't live in Texas. (Because the people here have already seen it.) It's a very nice chair and I am a lot more free in it than in the previous one. :-)
And for those of you from Tucson: A view of Sombrero Peak from my Dad's backyard.
What happens when my favorite band puts out an album of children's music? ..... Finally... music that my kids and I all like to listen to!!! Yay!
The Barenaked Ladies is a odd titled band that is now almost 20 years into their bandhood, and now they're all dads. So, they made an album of all new original kids songs. Below are the videos for probably the two best songs on the album (though I really like a lot of them.) If you like BNL at all, or if your kids are ready for more songs, I highly recommend "Snack Time" by BNL.
Pollywog in a Bog -- by Jim Creegan, bassist
789 -- by Ed Robertson, guitarist
There are a few other videos from this album on You Tube as well. Click here for all of the Snack Time songs on You Tube. I also really like "Things" and "The Ninjas" and "Raisins" and "Crazy ABCs". Sam's favorites are "789" and "Here Come the Geese" and "Drawing" and "Popcorn" and "Pollywog in a Bog". Ok, we like them all!! :-)
It's that time of year again. Time for school pictures for our annual new Homeschool IDs. Here are today's pictures for those IDs.
They protested against having their pictures taken while they were dressed up for church this year. So, instead, they picked out their favorite shirts.
Last Saturday, Brian and two of his friends installed my new stair lift. At first, I was really sad and in shock, because, you know, I'm under 85 years old, I shouldn't need a stairlift. But, then, I started using it, and I'm getting so much more done now. It's really helping me to do things again, instead of being trapped on one floor like I've been for so long. Much thanks to my Dad for talking me into getting it. :-)
Carnival rides at my house for 50 cents a ride! hehe. :-)
I really shouldn't blog tonight, since I only have two woking fingers on each hand today. The thumb and the index fingers work almost all the way, the rest are curled up and won't come out to play, probably not until sometime tomorrow mid-morning, as usual. That happens often, so I'm getting used to it. I guess this is what they call 'hen picking' at the keyboard. But I'm just so happy that I've told everyone about my life now, so I don't have to keep it all to myself anymore and I can keep you updated as things happen. :-)
After a very long week of researching, I finally placed two very big orders this morning. I ordered the stair lift, which might be here for Brian to install as early as this weekend. Also, I ordered my new wheelchair. Since I needed a 2nd one for upstairs, we decided to make my current one the upstairs chair and get a new, much better one for the rest of the time. I didn't get a very nice one the first time because I was thinking it would be for part time use. But, since I'm using it more and more all the time, it's time to get a good one that will allow me to go off-roading! --ok, maybe not off-roading, but not quite confined to sidewalks so much, I can't wait to show it to you, but you'll have to wait 2-3 weeks while they make it.
I'm thinking today that I might name it Zoe. It's dark blue, which seems more Zoe to me than Ellie. But then I have synesthesia, and I think of colors when I think of numbers and letters, so that's why I have to change the name if it's the wrong color. Zoe is blue-black to me, whereas Ellie is yellow, so that doesn't fit. (My sister says that the scientists would love to study my brain!) :-)
Thank you to everyone for your kind words. Yes, we're doing better now. Yesterday Brian took a day off of work. He moved everything stored in the garage from one side of the garage to the other, and we added my first ramp. Now I can get from the house down to the garage all by myself. And also, now we can park my car on the far side of the garage from the door, so I have room to ramp down and still get to my car. What a huge improvement! I just realized I should be showing you a picture instead of describing something so complicated. Well, I'll have to get pics when all the work is done.
I guess you could say that it's simpler to be able to not need the wheelchair every minute of the day, but I wouldn't call it easier. It's a whole lot harder to walk a few steps for me than not to, but that's just life. The problem now is that I keep having to walk in our non-accessible places in our home, like upstairs, out to the garage, into the bathrooms, etc., when necessary, and it's completely wearing me out. Either that or I just sit still and don't do anything, which is what I have been doing most of the past 2 years. I'm too young to stop living, I need to keep going. If I go upstairs, I need Brian to lift my legs for me step by step to help me climb the stairs. He lifts the leg onto the next step, and I push up with my crutches to shift my center of gravity up, then we doing it again with the other leg. And once we get up there, I have to lay down and rest or take a nap. It's a huge waste of time and energy. So, the goal is to make the house accessible enough for me that I can still have enough energy to homeschool once school starts up again in about 1.5 months. So, that's my "deadline" to get it all done.
The, what I call a stair chair, is technically called a stair lift. I'm going to order it from this company: http://www.jamesonmedical.com/stair_lifts.htm. So, if you'd like to see what it looks like, you can go to that site. We're also going to order a 2nd wheelchair, so that one can always stay on the top floor. I've been fighting this inevitiblity for a while now, because those two things will be SO expensive. But, I'm just too exhausted without them to do anything, and that's no way to live if it can be helped. I talked with my Dad, with Brian's Dad, and with Brian, the three men in my life, two of whom (the Dads) can build anything and know a lot about house modifications, and all three of them said it's cheaper to do the stair lift and the 2nd wheelchair than to move to a one story house. So, as much as it costs, it's still the better way to go, I guess.
So, now that the garage ramp is in, we're spending the rest of this weekend on small house maintenance chores, partying tonight of course, and picking out all the details for the stair chair and the 2nd 'chair.
Speaking of which. She'll need a name. My crutches are Abby, or Abigail if they're falling and I can't catch them and need to use a stern voice with them, hehe. My chair now is Charlie, named by my sister Krysten. I'm thinking of maybe Ellie for the next one. I'll have to wait until I order it and then when it gets here, then I'll know which name to go with.
Hey there old friends! Sorry I haven't written here in a while. My life has been changing a lot. Kelley, congratulations on your new baby. Brian, congratulations on the move to Georgia. Lisa, congratulations on the move to Kansas. Anna, yes, I actually wrote in my blog! :-) Miracles never cease! hehe :-)
I hope everyone is doing well. Since about February, my mobility has been quickly declining, and I've been dealing with and adjusting to that, so I haven't had time for blogging. But, things appear to be stabilizing out now, and life is attempting to return as much as possible to normal. So I've been eager to write here and to reconnect with my friends all over the country.
I wanted to take this opportunity to let everyone know that yes, I look different than I used to, but that it's going to be okay. I'm doing alright. I use crutches and a wheelchair to get around now. These are just tools for travelling, like a bike or a car. To quote Christopher Reeve: "I'm still me." :-) Actually, I'm a whole lot more social and talkative than I used to be. Interesting side effect. :-) I like it!
I write this to inform my friends, and not to complain. I was born with a spinal cord disease that has been slowly getting worse the older I get. I didn't know how bad it was going to get, and so I thought it was best that I didn't tell anybody, so as not to worry them with something that couldn't be fixed. If I had known that I would be where I am today, I would have told everyone years ago, in order to prepare them for what has come. But, I didn't know either.
In the past 4 years, I've slowly done fewer and fewer things that I love. I've stopped hiking, going on walks at town lake, biking, gardening, home improvements, and other recreational activities such as going to Sea World. In the past 2 years, I've cut down on even required things, such as some grocery shopping, cooking food, doing laundry, cleaning the house, and following my kids around. Going to the beach last year meant mostly sitting on the shore watching everyone else try to surf, and being in incredible pain from trying to walk on the uneven sand.
Earlier this year, around February, everything progressed a whole lot quicker. In addition to the pain of spastic muscles, I began to also have incredible weakness in the affected areas. It has become incredibly hard for me to move my legs and feet and sometimes my right hand. I went from a cane (which I really should've started using about 2 years ago, but I wasn't humble enough back then), to crutches, to now, in which I use crutches for really short distances and a wheelchair for medium to longer distances. It takes a great deal of effort to do what I used to do with a lot less effort when I was younger, so I can only walk a very small amount each day.
This is just how it happens with some people, and it appears I'm one of them. It should steady out soon, if it hasn't already. I have it in my legs the most and also on the right side of my body, so my right hand, for example, isn't nearly as useful as my left hand. I have a therapist who helps me, and I do lots of stretches to help the muscles not get too tight. Since I'm not a young child, though, that's about all that can be done. So it's just a matter of adjusting.
I know it's a big shock for a lot of people, and I'm sorry for that. Anyway, I don't write this here to complain or anything, but because I know so many of you care about me, and I wanted you to know what's happening. It is permanent, but because I can still take a few steps now and then, it's still better than a complete spinal cord injury, and I'm grateful for that.
Our home has stairs. We considered moving for a while, and instead we've decided to modify the home with ramps and stairlifts, etc. It's cheaper to modify than to move, plus we love our home, so we're staying put.
Well, that's all I can think of. Don't hesitate to ask me questions if you want to. At first, earlier this year, I was very hesitant to tell people something was wrong with me because I'd been hiding it for so many years, and it was a strange adjustment for me to start telling people. But I'm over that now, and I'm sorry that I was so shy about it for so long.
Anyway, Brian and I are adjusting, and are beginning a new chapter in our lives. Brian is a wonderful help, and has really been a great support to me. I'm so grateful for him! He's taking such good care of me that I feel he needs more support than I do right now. We know it'll be okay, the Lord is taking good care of us.
Alex's Cub Scouts had their Pinewood Derby last week. Brian and the boys had fun making cars. Here, you can see Alex's car, it's the blue one with racing stripes in this lineup.
Out of 13 boys, he placed 5th in the race, which is really good! He also won the award for the Sportiest Car. (He actually enjoyed himself that night, he just didn't feel like posing for this picture.)
We had some sub-floor leaking and mold in our master bathroom, so it was time for renovation. Brian's dad came and spent all week reflooring it and retiling the bathroom. It looks gorgeous!!
It's a basic tan tile that we picked out, with bone colored grout. I love the baseboard perimeter tiles too! They really class up the joint.
We also took the opportunity to change out the boring light fixture and replace it with this, which I love.
The toilet had to be removed for a week, and has now been reinstalled. It's a whole new bathroom! Much thanks to Brian and Brian's dad who did all of this amazing work.
(The chair there is just for when I get ready in the morning or brush my teeth, since I can't stand very long.)
We also bought a used sports table from our neighbors who moved last month. Under the foosball level, there's also ping pong, air hockey, pool, shuffleboard, and a few other games. We placed it in Sam's room, partially because he loves it the most, but also because it was the only space in the house where it would fit.
Brian's parents were just here for a week. It's my kids' favorite time of the year when they come! They brought us a Christmas present for last Christmas and for the one this year, a Wii! So, you can guess what we're doing with our spare time now.
An aerial shot I took from above them while I was on the stairs. (Or maybe I was hanging out of a helicopter like my dad!)
Hi there. I know it's been a while since I've updated this blog -- so I thought I'd get back into the habit by just saying a few words here tonight. I downloaded our camera to see what was in it and found these pictures...
Sam took this picture of his animals.
Now he's "feeding" them.
And here's a picture someone took of Sam all ready for church.
The boys recently planted seeds in their gardens, so when those seeds sprout, I'll show you pics of that as well. Have a great week!
Yes, I worked on the library again. I know I talk about it a lot, but it's my favorite room in the house. Brian's too. Now that it's finished, I love to go in there in the evenings with a book, some water, and some Mozart. I love it!
We moved the loveseat leather sofa from the living room. Now there are two leather sofas in the living room, and the shorter loveseat one is upstairs in the library. With this great seating, and now that we've moved the tables around, the library is now a place to stop and rest.
A part of the book section.
Here you can see the sofa in its new place, and the tables in theirs.
Now I'll show you gifts from my family that are in my library. Here is a Tornado machine that I got with money from my mom for my birthday. We call it the Vortex of Death. :-)
It really helps with the ambiance in the room. It changes colors, too.
This conch shell is from my sister Kim from when she visited the Florida keys.
This shell and pumice are a gift from my dad from when he went to Hawaii.
This Newton's Cradle is a gift I got for Sam with my mom's birthday money for me.
If you ignore the folders on these two shelves, most of the remaining books were given to me from my dad. They are books that he's ready over and over, so that means a lot to me. The yearbooks on the bottom left from Brian's and my years at Mountain View for Jr. High and High School. There are two of each book because we went to the same school.
Lots of gifts here. The blue ladybug rock was painted for me by my sister Krysten, who is an amazing artist. I know this is just a rock, but you should see what she can do on paper! The little stone turtle is a favorite of mine from my mom, who knows I love tortoises. The two sisters are a gift from my other sister Kim.
The quartz in the center here was given to me from my dad when I was very young one day when he took me to Colossal Cave. I loved seeing that cave with him, and this is my favorite rock out of my whole collection (and that's saying something).
This is a beautiful rock-covered globe given to me from my mom. It's the most gorgous globe I've ever seen, and I've looked for decades. Nothing tops this globe. It is layered (somehow) with beautiful stones to represent each country and ocean. It is one of the reasons I wanted a full library, so that I could properly display it.
I call this one: The Evil Power Twins.
The crazy picture. :-)
Brothers.
