Spina Bifida Resources
Sunday, November 27, 2005
Alison Lapper
"Alison Lapper Pregnant" is the bold, controversial and, I think, beautiful white marble statue of a disabled pregnant woman. Alison Lapper was born without arms and has shortened legs. Yet she grew up to be a beautiful, vibrant and vital woman who pursued and achieved not only a successful art career, but motherhood as well, along with so much more. Her story is fascinating and the statue, carved by sculptor Marc Quinn, is powerful. Currently displayed in London's Trafalgar Square until April 2007, I hope to some day get the opportunity to view this magnificent, important piece in person.
Saturday, November 19, 2005
A Whole New World
(Ever notice that I tend to name my entries with song titles? I love music, so I guess it's appropriate. Anyway....)
Two things have recently entered our lives that have totally opened our eyes to a whole new world of fun and activities for the whole family.
The first: activity books
Sweetie recently acquired a bunch of partially-used activity books. These books belonged to her sometimes-babysitter's young daughter. Now that she's outgrown them, she is passing them along to Sweetie. And Sweetie LOVES them! And we do too. My husband and I love them because it provides a brand new set of games we can play with her. Instead of her playing by herself with her puzzles or Care Bear figurines while Daddy and I sit on the sidelines watching T.V., now we have these activity books that we can all do together.
There are matching activities, fill-in-the-blank-games, letter and number tracing, connect-the-dots, and pick-out-the-differences challenges. Sweetie has quickly caught on to all of them. Sometimes she wants us to do the games while she tells us how to do them. But she is also happy to do some of them all by herself.
One evening early last week she was busy looking at one of the books, pen in hand, while I was checking email on the nearby computer. My back was turned to her when she ran up to me and proudly exclaimed, "Mommy, I did activity all by myself!", to which I answered, "Good job, Sweetie!". Then, two seconds later, she said, "Mommy, I want to hug you.". At that, I turned around to find her little face beaming up at me, arms open wide, ready to accept her congratulatory hug. I scooped her up and said, "I'm so proud of you!" to which she answered "Why, thank you!" Too cute. :)
(She really had completed a matching activity, correctly, all by herself. Wow!)
It's so fun to do the activities with her too. Watching the little wheels in her head turn as she tries to figure out the different games is fascinating. My husband and I are sometimes surprised, but always so proud to see all that she already knows how to do.
My only "complaint" with playing activity book with her is that it's doing a number on my back and legs. It's my own fault - whenever I change her diaper or her clothes, give her a bath or, now, play activity book with her, I'm always hunkering down, sitting with my legs bent beneath me. NOT a good thing for me to ever do (or so I've always been told ever since I was a small child), and certainly not something that will help my lower back pain. In fact, it is probably the main reason why I'm now experiencing shooting pain down my right leg. I know I need to stop sitting like this. And I don't mean to. It just seems to happen. And I've got to stop it.
The other new thing in our lives that is so wonderful is "NetFlix".
My husband's birthday is this weekend and for one of his gifts I signed him up to receive the NetFlix service. He is absolutely giddy with excitement over this. In fact, as I write this, he is watching the first movie I had sent to him, "Star Wars: A New Hope". Sweetie is watching it too. My hubby is in his glory right now - kicking back and relaxing, watching a movie he loves with his Sweetie, while he enjoys a nice, big mug of mocha coffee. Happy Birthday to him!
As for my point of view, NetFlix is a wonderful thing. I had always "pooh-poohed" it, saying it wasn't worth the money. But now that we've signed up, I see what a great service it will be for us, and me in particular. It is so hard for me to get out to the video store, especially with just Sweetie and me. Yet there are so many movies I want to see and I'd love to share with Sweetie. Now all I have to do is browse through all my choices on the NetFlix website, click on all the movies I've ever wanted to see, and they'll just show up at our doorstep some day. No fuss, no muss. Easy beans. So convenient for me, so fun for the whole family. Yay!
Activity books and NetFlix: in the words of Martha Stewart, 2 very "good things".
Two things have recently entered our lives that have totally opened our eyes to a whole new world of fun and activities for the whole family.
The first: activity books
Sweetie recently acquired a bunch of partially-used activity books. These books belonged to her sometimes-babysitter's young daughter. Now that she's outgrown them, she is passing them along to Sweetie. And Sweetie LOVES them! And we do too. My husband and I love them because it provides a brand new set of games we can play with her. Instead of her playing by herself with her puzzles or Care Bear figurines while Daddy and I sit on the sidelines watching T.V., now we have these activity books that we can all do together.
There are matching activities, fill-in-the-blank-games, letter and number tracing, connect-the-dots, and pick-out-the-differences challenges. Sweetie has quickly caught on to all of them. Sometimes she wants us to do the games while she tells us how to do them. But she is also happy to do some of them all by herself.
One evening early last week she was busy looking at one of the books, pen in hand, while I was checking email on the nearby computer. My back was turned to her when she ran up to me and proudly exclaimed, "Mommy, I did activity all by myself!", to which I answered, "Good job, Sweetie!". Then, two seconds later, she said, "Mommy, I want to hug you.". At that, I turned around to find her little face beaming up at me, arms open wide, ready to accept her congratulatory hug. I scooped her up and said, "I'm so proud of you!" to which she answered "Why, thank you!" Too cute. :)
(She really had completed a matching activity, correctly, all by herself. Wow!)
It's so fun to do the activities with her too. Watching the little wheels in her head turn as she tries to figure out the different games is fascinating. My husband and I are sometimes surprised, but always so proud to see all that she already knows how to do.
My only "complaint" with playing activity book with her is that it's doing a number on my back and legs. It's my own fault - whenever I change her diaper or her clothes, give her a bath or, now, play activity book with her, I'm always hunkering down, sitting with my legs bent beneath me. NOT a good thing for me to ever do (or so I've always been told ever since I was a small child), and certainly not something that will help my lower back pain. In fact, it is probably the main reason why I'm now experiencing shooting pain down my right leg. I know I need to stop sitting like this. And I don't mean to. It just seems to happen. And I've got to stop it.
The other new thing in our lives that is so wonderful is "NetFlix".
My husband's birthday is this weekend and for one of his gifts I signed him up to receive the NetFlix service. He is absolutely giddy with excitement over this. In fact, as I write this, he is watching the first movie I had sent to him, "Star Wars: A New Hope". Sweetie is watching it too. My hubby is in his glory right now - kicking back and relaxing, watching a movie he loves with his Sweetie, while he enjoys a nice, big mug of mocha coffee. Happy Birthday to him!
As for my point of view, NetFlix is a wonderful thing. I had always "pooh-poohed" it, saying it wasn't worth the money. But now that we've signed up, I see what a great service it will be for us, and me in particular. It is so hard for me to get out to the video store, especially with just Sweetie and me. Yet there are so many movies I want to see and I'd love to share with Sweetie. Now all I have to do is browse through all my choices on the NetFlix website, click on all the movies I've ever wanted to see, and they'll just show up at our doorstep some day. No fuss, no muss. Easy beans. So convenient for me, so fun for the whole family. Yay!
Activity books and NetFlix: in the words of Martha Stewart, 2 very "good things".
Wednesday, November 16, 2005
Makes Me Happy
When life gets too complicated and stressful - unexpected car repair payments, holiday visiting and shopping, bodily aches and pains (for both myself and my husband), and a child that likes to play "Dr. Jekyll and Mr. Hyde" (with a major preference for the Mr. Hyde side), etc., etc., etc. - I can always count on my very own (bug-guts-splat-on-the-wall) pressed fairy to make me happy.
Sunday, November 13, 2005
Tea Time
I'm going to take a bit of a break today and simply direct you to this study I found regarding a link between tea consumption and spina bifida.
As an avid tea-lover, I found this very interesting.
There are many articles on this subject all over the internet, but this one in particular had a relaxed tone and was easy to understand. I hope you find it as interesting and informative as I did.
As an avid tea-lover, I found this very interesting.
There are many articles on this subject all over the internet, but this one in particular had a relaxed tone and was easy to understand. I hope you find it as interesting and informative as I did.
Thursday, November 10, 2005
Are You Ready for a New Sensation?
Yesterday my husband and I went to our weekly chiropractic appointment. We've been going for about 5+ years now. We also had Sweetie adjusted yesterday. She goes about once a month (what she's allowed per year through our health insurance). She's gone enough that she now knows how to lie down on the examination table properly (putting her face in the hole and looking down at Daddy, who gets down on the floor to play peek-a-boo with her) and she knows what exactly our doctor is going to do to her ("push on my bum." she says)
Sweetie's been adjusted, on a non-regulated schedule (basically, whenever my husband and I feel she needs it) since she was just a couple months old. Chiropractic visits have helped her with everything from recovering from toddler tumbles to bouts of constipation and uneven sleep patterns. We see her benefit from chiropractic care and we're happy that she's learning about this still-considered-alternative, yet very effective form of healthcare.
Chiropractic visits have also done a world of good for me. For instance, without regular weekly adjustments, I truly believe that I would not have been able to walk throughout my entire pregnancy. Our chiropractor helped to keep my back strong and straight, enabling me to carry my ever-growing, hormone-crazed body. Before my pregnancy, she straightened my spine so successfully that I no longer stood with my belly poked out and my knees deeply bent. Rather, I stood as straight and tall as anyone else. Now, almost three years post-pregnancy, my posture is practically straight again. And, while I have had chronic lower back pain ever since giving birth, our chiropractor has helped me to manage my pain and to strengthen my back as much as possible. Most recently, she's successfully reversed the numbed feeling I've had in my upper left leg since having Sweetie. I can now confidently walk through the grocery store or mall without fear of my left leg giving out and/or weakening - all thanks to regular adjustments.
But the absolute coolest thing that chiropractic care has done for me is that it seems to have regenerated some of the nerves in my lower legs. That's right - you heard me correctly. Regenerate. For my entire life I've not been able to feel much more than very weak, very spotty sensation below my knees. So imagine my surprise when, oh, say a year ago or so, I all of a sudden was feeling what can only be described as a pins and needles sensation first in one lower leg, then in the other. Totally weird, and not all together pleasant, I might add.
This sensation (what I imagine it must feel like to have your leg fall asleep on you) has come and gone ever since, but every time it comes back, it comes back stronger and with more "symptoms". I don't think that's the right word - what I mean to say is that, each time the feeling comes back to my legs, it comes back stronger and somewhat different. At one point I could start to feel pain whenever I pinched myself anywhere below my knees. But I still could not detect temperature at all. But now, I am starting to feel differences in temperature - however, not completely accurately. I'll step into a nice, hot bath, first with my right foot, which will sense that the water feels cool, then with the other foot, which still doesn't feel a change in temperature at all.
Lying in bed one night a couple months ago, my husband climbed in next to me and cuddled up around me. We shocked each other, though, when he draped his legs on top of mine and I, without having time to even realize this was out of the ordinary, yelled at him to get his cold legs off of me. He instantly did, but it took us both a few seconds more to understand what I was saying - I could feel his ice-cold legs on top of my own lower legs! Totally "cool" (pun intended).
In talking with my chiropractor about all the new sensations I've been experiencing, we are both learning so much about what the human body is capable of. It seems that in my case, perhaps my lower leg nerves were never completely dead - just "kinked" or blocked in some way. Through proper chiropractic adjustments, these blockages have been relieved and I'm starting to gain feeling where I've never had it before.
It is a slow process, but I'm excited to see what continued chiropractic care can do for me in the months and years to come.
Sweetie's been adjusted, on a non-regulated schedule (basically, whenever my husband and I feel she needs it) since she was just a couple months old. Chiropractic visits have helped her with everything from recovering from toddler tumbles to bouts of constipation and uneven sleep patterns. We see her benefit from chiropractic care and we're happy that she's learning about this still-considered-alternative, yet very effective form of healthcare.
Chiropractic visits have also done a world of good for me. For instance, without regular weekly adjustments, I truly believe that I would not have been able to walk throughout my entire pregnancy. Our chiropractor helped to keep my back strong and straight, enabling me to carry my ever-growing, hormone-crazed body. Before my pregnancy, she straightened my spine so successfully that I no longer stood with my belly poked out and my knees deeply bent. Rather, I stood as straight and tall as anyone else. Now, almost three years post-pregnancy, my posture is practically straight again. And, while I have had chronic lower back pain ever since giving birth, our chiropractor has helped me to manage my pain and to strengthen my back as much as possible. Most recently, she's successfully reversed the numbed feeling I've had in my upper left leg since having Sweetie. I can now confidently walk through the grocery store or mall without fear of my left leg giving out and/or weakening - all thanks to regular adjustments.
But the absolute coolest thing that chiropractic care has done for me is that it seems to have regenerated some of the nerves in my lower legs. That's right - you heard me correctly. Regenerate. For my entire life I've not been able to feel much more than very weak, very spotty sensation below my knees. So imagine my surprise when, oh, say a year ago or so, I all of a sudden was feeling what can only be described as a pins and needles sensation first in one lower leg, then in the other. Totally weird, and not all together pleasant, I might add.
This sensation (what I imagine it must feel like to have your leg fall asleep on you) has come and gone ever since, but every time it comes back, it comes back stronger and with more "symptoms". I don't think that's the right word - what I mean to say is that, each time the feeling comes back to my legs, it comes back stronger and somewhat different. At one point I could start to feel pain whenever I pinched myself anywhere below my knees. But I still could not detect temperature at all. But now, I am starting to feel differences in temperature - however, not completely accurately. I'll step into a nice, hot bath, first with my right foot, which will sense that the water feels cool, then with the other foot, which still doesn't feel a change in temperature at all.
Lying in bed one night a couple months ago, my husband climbed in next to me and cuddled up around me. We shocked each other, though, when he draped his legs on top of mine and I, without having time to even realize this was out of the ordinary, yelled at him to get his cold legs off of me. He instantly did, but it took us both a few seconds more to understand what I was saying - I could feel his ice-cold legs on top of my own lower legs! Totally "cool" (pun intended).
In talking with my chiropractor about all the new sensations I've been experiencing, we are both learning so much about what the human body is capable of. It seems that in my case, perhaps my lower leg nerves were never completely dead - just "kinked" or blocked in some way. Through proper chiropractic adjustments, these blockages have been relieved and I'm starting to gain feeling where I've never had it before.
It is a slow process, but I'm excited to see what continued chiropractic care can do for me in the months and years to come.
Sunday, November 06, 2005
Weekly Wrap-up
Whew! What a week! It's been a busy one, and a sad one. Bad news arrived 2 Fridays ago when I was told my 92 year old grandfather was not doing very well and would probably not make it through the weekend. He has not been well for a couple years now, starting after he suffered a stroke. A second stroke earlier this year really started him on his downward spiral and he went to stay for good at his town's nursing home/hospice facility. So although his death has been imminent since around May or June, it was still very sad and jarring to receive that sad phone call early last Saturday morning saying he had in fact passed on.
The service was Tuesday - a beautiful fall day here in New England. Several Minutemen from his town's organization attended the burial and fired 3 shots in his honor. My grandfather was the one who first organized this group of historians way back when, and he was an active member for many, many years. The church service was well attended. We all gathered to remember the great, exuberant, full-of-life man that was Papa. It was a very nice day, full of tears and fond memories.
While visiting with my family, I met a distant cousin (actually, my grandparents' niece-in-law) who introduced herself to me and told me a little about her own granddaughter. This 9- year old little girl also has spina bifida, she said. She cannot walk, though, as her level of disability is higher on her spine than mine. Apparently, she is not happy to use her wheelchair either, and much prefers being carried to any other mode of transportation. However, as she's getting older, she's also getting heavier, making it harder and harder for her dad to lift her. According to her grandmother, she's not enjoying school very much and is generally feeling very down on herself - I gather, from the simple fact that she is different than her classmates. Unfortunately, I didn't get to talk to my relative for as long as I would have liked, but I hope she was able to observe enough of the good things going on in my life so that she can take the info back to her granddaughter, encouraging her toward a happy and fulfilling life. She just has to learn to give herself a break and let herself live a little. I wish her good luck and happiness - and I look forward to one day getting to meet this beautiful little girl.
The rest of the week went on as it usually does, but "usual" in this house typically means hectic and busy! And so it was, culminating yesterday in a trip into Boston and Faneuil Hall for my husband and I. This trip was partly "business" and partly pleasure. Thankfully it was another beautiful day (after the morning mist wore off) as we walked A LOT, but it was fun to wrap up our adventure with a relaxing lunch at Sam's Cafe at Cheers.
Today we're off to take our Sweetie to see "Chicken Little". There's an afternoon showing, so hopefully she'll take this usually calmer part of her day to sit back and enjoy the film. She's been very interested in all the commercials and seeing some of the promotional toys. So we think she'll do well and have fun. We can't wait to see it to. :)
So, that's about it this week. Sorry I didn't get to post a mid-week entry a few days ago. I hope to get back on track this week. I'll also be busy writing up my December article for Audacity Magazine as well as waiting to see an article of mine appear in the DPPi Journal winter edition - both on-line and in my mail box. As always, you can read my monthly Audacity articles here and, as soon as it's available, I'll be sure to create a link in my sidebar to my DPPi article.
Take care, everyone, and I'll see you in a few days.
The service was Tuesday - a beautiful fall day here in New England. Several Minutemen from his town's organization attended the burial and fired 3 shots in his honor. My grandfather was the one who first organized this group of historians way back when, and he was an active member for many, many years. The church service was well attended. We all gathered to remember the great, exuberant, full-of-life man that was Papa. It was a very nice day, full of tears and fond memories.
While visiting with my family, I met a distant cousin (actually, my grandparents' niece-in-law) who introduced herself to me and told me a little about her own granddaughter. This 9- year old little girl also has spina bifida, she said. She cannot walk, though, as her level of disability is higher on her spine than mine. Apparently, she is not happy to use her wheelchair either, and much prefers being carried to any other mode of transportation. However, as she's getting older, she's also getting heavier, making it harder and harder for her dad to lift her. According to her grandmother, she's not enjoying school very much and is generally feeling very down on herself - I gather, from the simple fact that she is different than her classmates. Unfortunately, I didn't get to talk to my relative for as long as I would have liked, but I hope she was able to observe enough of the good things going on in my life so that she can take the info back to her granddaughter, encouraging her toward a happy and fulfilling life. She just has to learn to give herself a break and let herself live a little. I wish her good luck and happiness - and I look forward to one day getting to meet this beautiful little girl.
The rest of the week went on as it usually does, but "usual" in this house typically means hectic and busy! And so it was, culminating yesterday in a trip into Boston and Faneuil Hall for my husband and I. This trip was partly "business" and partly pleasure. Thankfully it was another beautiful day (after the morning mist wore off) as we walked A LOT, but it was fun to wrap up our adventure with a relaxing lunch at Sam's Cafe at Cheers.
Today we're off to take our Sweetie to see "Chicken Little". There's an afternoon showing, so hopefully she'll take this usually calmer part of her day to sit back and enjoy the film. She's been very interested in all the commercials and seeing some of the promotional toys. So we think she'll do well and have fun. We can't wait to see it to. :)
So, that's about it this week. Sorry I didn't get to post a mid-week entry a few days ago. I hope to get back on track this week. I'll also be busy writing up my December article for Audacity Magazine as well as waiting to see an article of mine appear in the DPPi Journal winter edition - both on-line and in my mail box. As always, you can read my monthly Audacity articles here and, as soon as it's available, I'll be sure to create a link in my sidebar to my DPPi article.
Take care, everyone, and I'll see you in a few days.
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