Today I got an email from the church that someone has been around the area possibly trying to assault kids (maybe just girls). That's just great. When everyone thinks of church as the safest place, we now have to be careful.
That makes me think about my time as a parent. Lori is almost 6 now and has been more independent than many kids her age. It's not that I don't have my eyes on her, but I have relied on a lot of parents to help keep eyes on her, particularly at church. In a sense, it's like she owns the church. She knows the building inside-out. And outside of church, I can't dart after her like most parents can dart after their children. It's really different. I have the advantage that Lori would ride on my walker when she was younger, and now she's too big for that but still rides on my lap on the wheelchair. But there are times when I can't be right there, when I suppose she could be easly "snatched." When we're home alone without my hubbie, we don't answer the door because I feel vulnerable.
I guess it's all somewhat confusing. And it seem to remain a world almost free of other parents who have disabilities, so it's isolating. For the most part, people help, but I don't think they realize the isolation, the frustration at feeling a bit reliant on others to help. And I really am sick of the comment to Lori, "Are you Mommy's helper?" No, I am the one with the disability. Yes, she helps. But she is a kid-let her live that. I am thankful she has been safe this long.
There should be a support group--parents with disabilities--where we can air our frusrations, but also air the joys of being a parent. There must be others out there.............
Friday, February 6, 2009
Sunday, February 1, 2009
Today--one of the best days of my life
Well, before today, this past week was horrible. So I thought of calling this post inclusion trumps exclusion. So, the inclusion part.
This morning, my daughter and I headed to Breckenridge where I, or we, ski. I've been thinking that I am resigned to falling a bunch every time I do the blue level (intermediate). I completely panic. But not today. Today I listened to Charlie (my instructor, but more of a friend), and just did what he said, and it worked! The impossible becomes possible, after a ferocious MS attack, after a bad week at work. This didn't make it happen (well, not exactly), but last night I talked to God--I guess that's what it's called--maybe contemplative prayer. I asked God to let me let go of the past week, and to be a part of the inclusive environment of the adaptive center, to help me let go of my panic. Then my daughter, who is almost 6, and I did a run together (green--beginner). She is awesome--has no fear-fast! That from a girly-girl! and the inclusion--I feel so myself there--so welcomed, such a part of it all. Everyone is welcomed and a part, no matter what their disability--accommodations are made, and everyone is challenged. It's like a home.
And the exclusion. Not today. Today I celebrate inclusion, being a part of something, feeling welcomed, loved, and when I did something I thought I would never do, I feell c elebrated. Thanks be to God for helping to let go of the past for a day, for helping me let go of panic, for helping me to see that people with disabilities are included, valued, loved, and celebrated.
This morning, my daughter and I headed to Breckenridge where I, or we, ski. I've been thinking that I am resigned to falling a bunch every time I do the blue level (intermediate). I completely panic. But not today. Today I listened to Charlie (my instructor, but more of a friend), and just did what he said, and it worked! The impossible becomes possible, after a ferocious MS attack, after a bad week at work. This didn't make it happen (well, not exactly), but last night I talked to God--I guess that's what it's called--maybe contemplative prayer. I asked God to let me let go of the past week, and to be a part of the inclusive environment of the adaptive center, to help me let go of my panic. Then my daughter, who is almost 6, and I did a run together (green--beginner). She is awesome--has no fear-fast! That from a girly-girl! and the inclusion--I feel so myself there--so welcomed, such a part of it all. Everyone is welcomed and a part, no matter what their disability--accommodations are made, and everyone is challenged. It's like a home.
And the exclusion. Not today. Today I celebrate inclusion, being a part of something, feeling welcomed, loved, and when I did something I thought I would never do, I feell c elebrated. Thanks be to God for helping to let go of the past for a day, for helping me let go of panic, for helping me to see that people with disabilities are included, valued, loved, and celebrated.
Thursday, January 29, 2009
You can't take my steps or feel my pain, but you can walk beside me.
This is really just a link to a cool song.
http://www.reachwithme.com/download.html
Then listen to "Cold Rain."
Think about it. I can't count the times I feel alone; I feel ignored; I feel people are afraid to just say hello to me. And when people do say hello, it's about the wheelchair or the disability. This song says what is so awesome--that you can just walk beside me. We can do things together. Guess what? We can talk about anything. And please, let's get to know each other before we even think of talking about the wheelchair, the walker, or the disability. Let's be friends.
Thanks to God for people who write songs like this.
http://www.reachwithme.com/download.html
Then listen to "Cold Rain."
Think about it. I can't count the times I feel alone; I feel ignored; I feel people are afraid to just say hello to me. And when people do say hello, it's about the wheelchair or the disability. This song says what is so awesome--that you can just walk beside me. We can do things together. Guess what? We can talk about anything. And please, let's get to know each other before we even think of talking about the wheelchair, the walker, or the disability. Let's be friends.
Thanks to God for people who write songs like this.
Thursday, January 22, 2009
Moving Ahead
I think this may be the last post about my most recent MS attack, because I have some other things I wanted to write--relating policy and faith, utilizing disability to mentor those who enter a medical profession, a book review, etc. So many thoughts, so little time.
But, with cat on lap (see previous post), my update. Next attack hopefully I'll remember to look back and compare.
Things have settled down mostly. Yesterday my balance seemed to come back and I was able to do all of my balancing exercises. My upper body strength has returned. I feel less fatigued. My legs are not having more than the usual spasms, they do not ache, and they are not numb. They are still tired and drag more than usual when I am using Bart (my walker). I am not walking as far as I was. My hope is that my legs will improve next--I'll keep trying with them. My hope is that now I can resume my exercise routine. Frustration and feelings of hopelessness have also improved.
And what allowed this to happen--to start to get better? I'm not sure. I think I finally got sick of not getting enough help, and reached out to women at church and asked for a couple dinners for this week. Then when I got home from work, I didn't have to use that energy. I felt guilty asking, but I also thought something had to help. People cooked great dinners. Then there's the random nature of MS where the recovery might be random.
So I move on. I made a big deadline at work (stress probably didn't help the attack). I am going to a lunch tomorrow with other ADA experts (I'm still becoming one). The semester has started at school (I'm going for a Masters in Public Affairs). And I can now be a better mom because things are better. God with me through all of this--thanks be to the help of people at church, thanks be for me getting more rest, and as usual, thanks be to God.
And now to get the cat off my lap :)
But, with cat on lap (see previous post), my update. Next attack hopefully I'll remember to look back and compare.
Things have settled down mostly. Yesterday my balance seemed to come back and I was able to do all of my balancing exercises. My upper body strength has returned. I feel less fatigued. My legs are not having more than the usual spasms, they do not ache, and they are not numb. They are still tired and drag more than usual when I am using Bart (my walker). I am not walking as far as I was. My hope is that my legs will improve next--I'll keep trying with them. My hope is that now I can resume my exercise routine. Frustration and feelings of hopelessness have also improved.
And what allowed this to happen--to start to get better? I'm not sure. I think I finally got sick of not getting enough help, and reached out to women at church and asked for a couple dinners for this week. Then when I got home from work, I didn't have to use that energy. I felt guilty asking, but I also thought something had to help. People cooked great dinners. Then there's the random nature of MS where the recovery might be random.
So I move on. I made a big deadline at work (stress probably didn't help the attack). I am going to a lunch tomorrow with other ADA experts (I'm still becoming one). The semester has started at school (I'm going for a Masters in Public Affairs). And I can now be a better mom because things are better. God with me through all of this--thanks be to the help of people at church, thanks be for me getting more rest, and as usual, thanks be to God.
And now to get the cat off my lap :)
Sunday, January 18, 2009
The Cat
I love my cat, Boo Boo. I'm surprised she isn't here right now, requesting my lap. I'm typing on the laptop and when not doing that, I may be doing exercises on the floor. She will walk to me and pace, as if to say, "it's lap time." When I work in our office, she more blatantly comes in and meows to announce her presence.
In the past week or 2, she has been here more often. A bit strange, but it has fit with my MS out of control. It's as if she is telling me NOT to do my exercises, but to rest. Stop. Pet her. She knows--she's in renal failure--let's rest together.
And in between those times of her insistence of rest, there is chaos. Steroids treated my MS attack. But attacks don't just end. Things seem to be mis-firing all over the place. My knees will now stay locked. But my legs spasm as if they want me to walk, they ache as if they want me to walk. I walk, and they are tired and ask me to sit, which leads back to the spasms. An exhausting week, and when it occurs at night, it is more mentally difficult to handle. By the time it's morning, I'm ready for a nap!
Back to the cat--maybe it's her that can calm the cycle. She's still not here now, but my lap is ready and open.
In the past week or 2, she has been here more often. A bit strange, but it has fit with my MS out of control. It's as if she is telling me NOT to do my exercises, but to rest. Stop. Pet her. She knows--she's in renal failure--let's rest together.
And in between those times of her insistence of rest, there is chaos. Steroids treated my MS attack. But attacks don't just end. Things seem to be mis-firing all over the place. My knees will now stay locked. But my legs spasm as if they want me to walk, they ache as if they want me to walk. I walk, and they are tired and ask me to sit, which leads back to the spasms. An exhausting week, and when it occurs at night, it is more mentally difficult to handle. By the time it's morning, I'm ready for a nap!
Back to the cat--maybe it's her that can calm the cycle. She's still not here now, but my lap is ready and open.
Friday, January 9, 2009
Meetings
This isn't a religious posting, but I still think God is there.
People have asked me how I know I'm having an MS "attack." So I thought since one is hitting, I'd document it so I remember what to tell people.
Usually they are about 6 months apart. Sometimes they start with a virus, like whatever I had at Christmas, but not always. Generally, the month before the attack, I feel awesome. Then at some point I get really tired. Following that, I start to have a series of meetings. I'll sometimes have these meetings anyway, but they become more frequent. The floor is where I meet--it seems to really like me. Boom, boom, boom. Legs give, hello floor! And when do I know this is really and different than "regularly scheduled" meetings? The meetings are more frequent and generally there is a special meeting, somewhere other than the floor.
This week I was tired, and then yesterday had a series of floor meetings. Today I thought maybe I was ok (I shouldn't do that), so I didn't call my doctor. Then I started feeling "off" at work. I picked up my daughter from school and it was cold! I got the wheelchair back in the car and opened the front door. Then I slung my body around to the meeting of my forehead with the steering wheel. And I didn't make the seat--well, I made it halfway. Then I started to cry at the whole mess and after pulling myself together, re-did the "slinging around" by somehow pulling myself up, and this time doing the usual sling into the chair. No one came along or was there to witness the meeting--help would have been nice.
It was great planning in that it was 5:30pm on Friday, and so I have the weekend ahead of me. Luckily I had some leftover steroids which should be ok until Monday, when I WILL call my doc.
And that is an MS attack (for me).
And God is there, and God is a loving God.
People have asked me how I know I'm having an MS "attack." So I thought since one is hitting, I'd document it so I remember what to tell people.
Usually they are about 6 months apart. Sometimes they start with a virus, like whatever I had at Christmas, but not always. Generally, the month before the attack, I feel awesome. Then at some point I get really tired. Following that, I start to have a series of meetings. I'll sometimes have these meetings anyway, but they become more frequent. The floor is where I meet--it seems to really like me. Boom, boom, boom. Legs give, hello floor! And when do I know this is really and different than "regularly scheduled" meetings? The meetings are more frequent and generally there is a special meeting, somewhere other than the floor.
This week I was tired, and then yesterday had a series of floor meetings. Today I thought maybe I was ok (I shouldn't do that), so I didn't call my doctor. Then I started feeling "off" at work. I picked up my daughter from school and it was cold! I got the wheelchair back in the car and opened the front door. Then I slung my body around to the meeting of my forehead with the steering wheel. And I didn't make the seat--well, I made it halfway. Then I started to cry at the whole mess and after pulling myself together, re-did the "slinging around" by somehow pulling myself up, and this time doing the usual sling into the chair. No one came along or was there to witness the meeting--help would have been nice.
It was great planning in that it was 5:30pm on Friday, and so I have the weekend ahead of me. Luckily I had some leftover steroids which should be ok until Monday, when I WILL call my doc.
And that is an MS attack (for me).
And God is there, and God is a loving God.
Tuesday, January 6, 2009
"Those" People and God still there
A few posts ago, someone posted a comment which I deleted because of the language in it. What it basically said was who is Jesus, expressed disbelief in Jesus, and the feeling that Jesus couldn't have been God--this person obviously didn't feel God's presence anywhere. I believe that's where faith can step in.
This part of this post isn't pretty. Yesterday was a frustrating day. I live here in Colorado where it snows in the winter, but not as much as people would think--just enough to be annoying. Yesterday I picked up my daughter at school and took her to dance. We got there and the WHOLE parking lot was free from ice, EXCEPT the accessible spot where I needed to park, which was filled with snow and ice. But I needed to go in. So I parked, got out of the car onto the snow, and then realized under the snow was a layer of ice. I clutched the car, got my walker out, somehow got my bag out, somehow closed the doors, somehow walked backward, and made it into the dance studio (of course, there were no offers for help--people too busy dropping and picking up kids).
We got in, I bought what she needed, and I sat down. A nice lady was telling me about someone who teaches pilates which sounded exciting. She gave me the lady's card and said to use her name as a reference, so I had to admit I didn't know her name. Here it comes. She said she only knew my name because she has a friend named Beth who is HANDICAPPED. That "H" word--hate it!
Leaving dance--back over the ice. Before that, some dad not paying attention almost plowed me over--he wasn't looking--no shock! Getting the walker back in the car is more difficult, and the ice! Some may wonder why I didn't ask for help--too stubborn, I suppose! Anyway, as I was getting the walker in the car, I thought of the person not believing in the presence of God. And I thought where is God now? And then I thought of all the frustration of the afternoon, but I was still there and hadn't fallen. So I think God was with me. And if I had fallen? I don't know what my answer would be. Stuff happens. Bad stuff happens. There aren't reasons. God is still there. That's my leap of faith.
As I say so many times, through whatever good or bad, because good happens and MS just sucks--it does...but through it all,
thanks be to God.
This part of this post isn't pretty. Yesterday was a frustrating day. I live here in Colorado where it snows in the winter, but not as much as people would think--just enough to be annoying. Yesterday I picked up my daughter at school and took her to dance. We got there and the WHOLE parking lot was free from ice, EXCEPT the accessible spot where I needed to park, which was filled with snow and ice. But I needed to go in. So I parked, got out of the car onto the snow, and then realized under the snow was a layer of ice. I clutched the car, got my walker out, somehow got my bag out, somehow closed the doors, somehow walked backward, and made it into the dance studio (of course, there were no offers for help--people too busy dropping and picking up kids).
We got in, I bought what she needed, and I sat down. A nice lady was telling me about someone who teaches pilates which sounded exciting. She gave me the lady's card and said to use her name as a reference, so I had to admit I didn't know her name. Here it comes. She said she only knew my name because she has a friend named Beth who is HANDICAPPED. That "H" word--hate it!
Leaving dance--back over the ice. Before that, some dad not paying attention almost plowed me over--he wasn't looking--no shock! Getting the walker back in the car is more difficult, and the ice! Some may wonder why I didn't ask for help--too stubborn, I suppose! Anyway, as I was getting the walker in the car, I thought of the person not believing in the presence of God. And I thought where is God now? And then I thought of all the frustration of the afternoon, but I was still there and hadn't fallen. So I think God was with me. And if I had fallen? I don't know what my answer would be. Stuff happens. Bad stuff happens. There aren't reasons. God is still there. That's my leap of faith.
As I say so many times, through whatever good or bad, because good happens and MS just sucks--it does...but through it all,
thanks be to God.
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