Wednesday, September 28, 2005

Dance, Sweetie, Dance

Never have I been moved so much by one song than the first time I heard LeeAnn Womac's hit "I Hope You Dance" after the birth of my daughter. I was familiar with the song before she was born and liked it just fine. But once Sweetie was born and I heard the song again, it was an entirely new experience. The lyrics, ringing so truthfully and pure, wholly embody every wish I have for my darling little girl.

Sweetie helps me dance in my own way by inspiring me to new heights as I push forward with my dreams of a writing career. Stringing together words, ideas, feelings and beliefs into (at least personally) meaningful essays and articles is something I love to do, and being able to share it with so many people is a dream I love seeing realized. Every day Sweetie helps me realize my evolving strengths, determination, patience and ideals. For that I will always be grateful.

I wish for my daughter a life where she passionately pursues her own dreams, goals and desires. Whatever it is she wants for her life, I want her to go after it with all her heart and soul.

Sweetie - I hope you dance. I know you will. Thank you for teaching me how.

"I hope you never lose your sense of wonder
You get your fill to eat, but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed

Chorus: I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
and when you get the choice to sit it out or dance,
I hope you dance, I hope you dance

I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Livin’ might mean takin’ chances, but they're worth takin’
Lovin’ might be a mistake but it's worth makin’
Don't let some hell bent heart leave you bitter
When you come close to selling out, reconsider
Give the heavens above more than just a passing glance

And when you get the choice to sit it out or dance,
I hope you dance (time is a wheel in constant motion always)
I hope you dance (rolling us along)
I hope you dance (tell me who wants to look back on their years and wonder)
I hope you dance (where those years have gone)

I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance,

dance, I hope you dance,
I hope you dance (time is wheel in constant motion always)
I hope you dance (rolling us along)
I hope you dance (tell me who wants to look back on their years and wonder)
I hope you dance (where those years have gone)
(tell me who wants to look back on their years and wonder)
(where those years have gone)"

Sunday, September 25, 2005

Aches, Pains & Tingles, Oh My

I've been plagued this week by bodily aches, pains and, weirdly, even tingles. Actually, I've had bad lower back pain for about 2 years now (ever since Sweetie started gaining significant weight). But my chiropractor, whom I've been seeing anyway for about 5 years now, has helped me to manage it pretty well. But just this week it's really started to kick in again. Now with more tightness, pulling and "nervy" twinges.

Last summer I went to my doctors in Boston for a series of visits to see if there was anything seriously wrong with my back or not. Perhaps my spinal cord was tethered again, I thought. Nine years ago today (I know, because it's my brother's birthday) I had surgery to release my tethered cord. At that time I was experiencing a severe drop in mobility, agility, coordination and an increase in back pain. The operation proved very successful and took away my pain - but also left me with the need to walk with a cane. (Actually, for about 5 or 6 months I walked with crutches. Then, after meeting my now husband, he got me walking again with only the aid of a simple walking stick he made himself from wood from my parents' yard). I was happy to have had the surgery, happy to be rid of the pain, but disappointed that I now needed the extra walking support - before the surgery I only needed my short leg braces to get me around - no crutches, canes, wheelchairs or anything else. Oh well, at least I could walk.

At any rate, last summer's appointments didn't result in any major news. Yes, an MRI showed a small sack of spinal fluid at the base of my spine. Perhaps, one doctor reasoned, spinal fluid was leaking a little and collecting in this pouch and, as it grew, it was creating more and more pressure on my nerves, causing pain and the numbness I'd been experiencing in my left upper leg over the past year or so. But then I got a second opinion, from the doctor who actually performed my tethered cord release, and he wasn't convinced that this fluid collection was new or even increasing in size. He believed that this collection of fluid formed during the tethered cord release procedure, was not now leaking fluid and was therefore a benign blip on my spine. His opinion was, like mine, that pregnancy, childbirth and the constant lifting and activity of caring for a baby was the cause of my current back pain. By this time I had also discovered that a drug store back brace relieved my pain a great deal. So he suggested I continue wearing the brace, do exercises to increase my back and stomach muscles, and, as Sweetie grows and no longer needs to be lifted so much, my pain should decrease. No surgery - sounds good to me.

Now at 2 3/4 years old, Sweetie weighs approximately 28 lbs and needs to be lifted (by me, anyway) very rarely. I only need to lift her into her crib one night a week and at nap times during the weekends. And this past week I've had her help with this by having her climb onto a hassock first, so that the distance I need to lift is lessened. So it's weird to me that, starting this week, my back pain has started to really increase again.

Last weekend when we were away at the wedding, Sweetie successfully fell asleep in a regular hotel bed, with me at her side, and was then transferred to her playpen for the rest of the night. This gives me great hope that she can fall asleep in her big girl bed here at home now - and stay there for the night. If it means my having to lie down with her until she's asleep, so be it. Not having to lift her at all would be a wonderful thing for me, and moving to her big girl bed would be a great thing for her. It's time.

As for the tingling I mentioned earlier, I've been experiencing, for maybe a month or so now, tingling in both my jaw and hands. But, like the back pain, this past week it really seems to have gotten worse. Before, I hardly even noticed it, but now the tingling is down right annoying and unavoidably noticable. So a couple days ago I looked up "face tingling" on the internet and, lo' and behold, I found there's actually a connection between the face and hand tingling. According to the articles I read, TMJ can cause this sensation, and it's a matter of getting your jaw realigned to stop the tingling.

Good thing I go to a chiropractor. She's helped me with everything from back pain to allergies and colds, and she's even helped Sweetie through bouts of constipation and poor sleep cycles. I'm sure she could help me with a little jaw realignment. Who knew that chiropractors could help you manage so many different types of health concerns. Pretty cool. If only she could help me manage housework and finances too. Oh well.

Monday, September 19, 2005

Our Little Dancing Machine/Comedianne

We're Baaaaaaacccck! We had a long, meandering car ride home today and returned about 3 hours later than we should have. But we had a wonderful weekend away and a fabulous time at the wedding. My husband's cousin (the bride) was gorgeous and she and her new husband look very happy together. The weather was okay and it did clear up just in time for the pictures.

Sweetie proved to be quite the little dancer. Unfortunately for my husband, she pretty much only wanted to dance while being held by him. Oh, she did get down on the dance floor herself, but mostly - and certainly as she got more tired - she wanted to be in her Daddy's arms. She also was more comfortable dancing away from the dance floor. Whenever her daddy took her too close to all the action, her grip around his neck got tighter and her smiles and laughs turned into looks of serious concern. She did eventually warm up to the crowd though, but it was a bit by accident.

It was during the song "Shout". You know the part where it goes "a little bit softer now..."? And how everyone crouches down to the floor before popping up again? Well, since Sweetie was dancing on her own by our table, when everyone crouched down to the song I think she wondered where all the people went because she went barreling out to the dance floor to check out what happened. Fortunately, Grammy, Auntie and some of her cousins were right there and she found them easily - and felt comfortable enough to stay, dancing and jumping her little heart out. Let me tell ya, she was a BIG hit with pretty much everyone, and Sweetie was then happy and relaxed enough to dance with whomever would take her little hands.

Sweetie also tried to sing along to the music all night long. The funniest was when Donna Summers' disco hit "Hot Stuff" came on. There Sweetie was, singing "Hop Scotch" as loud as she could along with the music. (Also, at the church, a pianist was playing some classical pieces before the ceremony, during which you could hear Sweetie softly singing "Rock-a-bye Baby" to herself).

There was also a bit of comic relief during the ceremony, courtesy of Sweetie (besides from the exuberantly high-spirited minister, that is). Everyone was quietly listening to said minister tell stories about the bride and groom when he made some reference about the church being filled today with New England yankees. Just at this moment Sweetie called out, loud enough for at least our half of the church to hear, "Boo, Yankees!". The lady behind laughed and, thinking she had said, "Go, Yankees!" said to me "Doesn't she know she's in Red Sox country?" So I had to clarify for her that, "No, she said 'Boo, Yankees!'" Nana, a die-hard baseball (and, of course, Red Sox) fan has taught Sweetie well. I was laughing so hard I could hardly stop - and I was happy I was wearing waterproof mascara. At the wedding reception the bride's step-dad came up to us and said "So I hear we've got a young Red Sox fan in the family." So funny!

As for me - I had a great time. But I certainly can't dance the way I used to. At our wedding I danced all afternoon and could have gone on for hours. But with my increasing back pain and increasing age, I find I just can't do it anymore. Not that I ever danced particularly well - lots of body movement without so much feet movement - but at least I could do it without pain and fatigue. This time I just danced a couple fast dances and a couple slow dances and that was it. I was happy to have Sweetie take my place with my husband and to simply watch from the sidelines.

I also forgot to bring a catheter to the wedding and reception. I ALWAYS, ALWAYS have one in my purse, so I didn't even double check before we left the hotel room. But apparently I had been using the catheter from my purse as my hotel room catheter - so that's where I left it. The reception was just far enough from the hotel to not really want to make that round trip if not absolutely necessary. So I toughed it out and didn't drink as much as I would have otherwise. We left early so Sweetie could get to bed on time, so I managed just fine, making it safely back to the hotel with my full bladder.

Now we're home and exhausted. We're planning an evening of vegging in front of the T.V. to watch all the new shows starting tonight. Sounds like about as much excitement as we can all handle right now.

P.S. Oh yeah, the last song that played before we left the reception was "Y.M.C.A", and Sweetie got to show her stuff. It seemed like she was pleasantly surprised at first to find that this song I'd been singing her all week was a real song. Then toward the middle of it she began to do the appropriate arm gestures, along with everyone else in our family gathered around her jumping and gesturing as well. It was a great dance to end a great evening. She sang "M.Y.C.A" all the way back to the hotel.

Friday, September 16, 2005

Weekend Trip

I'm not going to be around to post this Sunday, so I thought I'd say a quick "hi". We have a familiy wedding to go to. We're all excited, and I've even taught Sweetie how to do the "Y.M.C.A". I can't wait to see her dance and have fun at "the wedding party" (as she's been calling it).

Well, off to pack. It's only a quick trip, so I'll post a real entry as soon as we get back. Until then, have a great weekend.

Sunday, September 11, 2005

1000?! You don't look a day over 750! (A retrospective of the last several months)

Welcome to my first official entry after reaching 1,000 hits. (And I've only personally contributed to that number by 10 or so hits, I swear). According to my site meter, I'm averaging 12 hits a day and am regularly visited by people from all over the word - Germany, Switzerland, England, Vietnam, the U.S.A, Canada and more.

I'm happy to see that most of my hits are people either intentionally coming to my site because they already know about me, or they've found me via spina bifida and/or parenting web searches they've performed. The most common "other" web searches that have landed people at my blog are searches for any and all information regarding the Disney Channel's show "The Doodlebops" (which I mentioned one time in a blog earlier this summer. And, look what I've just done - given said web searchers even more reason to find me via that search word. Oh well).

I've heard from lots of people - mostly women with spina bifida - who enjoy my blog and have found it helpful in answering some of their questions about parenting with spina bifida. And I've also been motivated, since starting my blog back at the end of April, to seek out and join in some wonderful spina bifida chat forums. Not to mention the several writing assignments I've gained since I've become a blogger - either because I queried places for the opportunity or because I've been approached through my blog to write an article or two. I LOVE writing, and I LOVE writing about being a mom. I hope to one day make a living as a writer. So I am forever grateful to all the publications that have so far given me the opportunity to practice and hone my skills. Now, I just need someone to say they'll offer me money for my work - wouldn't that be cool?!

The most recent terrific opportunity that has happened for me is that the Genetics and Public Health Blog is currently listing Spina Bifida Moms as its "Featured Blog of the Week". This is a wonderful website, created by Dr. Hsain Hsien Lei out of Vietnam, and is chock full of information offering "Insights, articles, and other resources on Genetics and Public Health". The Genetics and Public Health Blog has also recently been recognized by as "The Best of the Web: Health and Fitness Blogs." Wow! Do I feel honored to be associated with such a well-respected site. Thank you, Dr. Lei. I've added your blog to my list of Resources/Links at my sidebar so that others may benefit from the information you provide.

I've also recently added a few new sites to my other side bar categories. Namely, three new cyber-friends, Steph, Shanta and Jennifer, who have their own blogs or websites relating in one way or another to spina bifida or living with disability.

Steph is an able-bodied mother of three. She loves to read, write and have fun at being the best mom she can. One of her children, Donovan, has spina bifida. She writes about this occasionally, but does not at all focus on SB as the theme of her entire blog - as well she shouldn't. She doesn't love her children any more or less based on their individual abilities or personalities, so why make a big deal out of her one child who happens to have SB? SB is just another one of several issues she and her family deal with every day. Steph's got a lot of great interests, talents and thoughts to share - and she does it so eloquently in each and every one of her entries. I know my readers will love her site just as much as I do. You'll find her under "Raising SB Kids".

Shanta lives in London, England and she's just recently established her blog in which she talks about her experiences living with scoliosis. I've been fortunate enough get to know Shanta through her work with DPPI, and now on a personal level through both our mutual love of writing as well as our desire to share our stories of living with disability. Her blog is great and I wish her continued luck - both with her blog and her writing in general. I've listed her blog, "I'm Not Gillian McKeith" under "Blogs".

Jennifer is a 30-something woman living with spina bifida. She does not have children, but may be looking to start on that journey in the near future. She is an intelligent, well-traveled person with diverse interests and a very caring heart. Her own website has touched the lives of parents raising children with spina bifida and others interested in finding out just how much a disabled person is able to achieve in life. She's a great inspiration and her site is definitely worth checking out. Find her under "SB Adults/Parents".

So, that's about it. Thanks to everyone who has contributed to my reaching this milestone of 1,000 hits! I'm not going anywhere and will continue to write to you weekly (or more) about the ups and downs, ins and outs, of being a disabled mom raising my little Sweetie. We sure do have a lot of fun together, as well as some unique circumstances where we have to figure out the best way to deal with the problem at hand. We're both continually learning how to help each other manage the best way we can. I'm so happy to be here for you all, helping you learn what may work for your family as well.

Saturday, September 10, 2005


Woo, Hoo! 1,000 hits! Thanks for visiting, everybody. And keep coming back for more.

Sunday, September 04, 2005

Tea and Sympathy

Hi All. It's time to write my weekly entry, and I just don't feel like I have it in me. Who cares about my daily trivial trials in parenthood when the people of the New Orleans area have experienced such traumatic, tragic loss?

It's an absolutely gorgeous, cool, late summer day here in New Hampshire. I'm comfy in my oversized long sleeved shirt and shorts, sipping my afternoon tea and filling up on trail mix. Sweetie is snug in her crib and hubby is lounging on the sofa, watching "I Want That" on HGTV - a show that demonstrates all the cool, new gadgets for your home and yard. He deserves this rest after the morning he's had in our basement, building himself a woodworker's bench and tool storage area.

But what about the people in the Gulf Coast? They have nothing. I mean, absolutely nothing. All taken away from them by an angry freak of nature. Hurricanes are actually commonly found in nature, especially in this part of our country. But the sheer magnitude of devastation and horror that Katrina left behind is, thankfully, not so prevalent, But here we are. It's over. There's nothing to do but survive and look forward.

As a mother, it is the images of the innocent babies and children that really disturb me. At least adults can try to grasp what's happened and do whatever they are able to survive now, knowing that one day life, though never the same, will go on for them. But the children - they have no idea. They trust in the adults in their lives to take care of them so that devastation like this will never touch them. They don't understand that loss and destruction can sometimes just take over on its own. To them, life really does seem over, I am sure, and they simply don't know what to make of anything right now.

Tiny babies, who want for nothing but food, sleep and fresh diapers, can't even be sated with these simple basics. Oh, maybe now, with all the looting and the supplies that are finally coming into the area, the necessities are available to some, but I'm positive that hundreds - thousands - of others are waiting for what must seem like an eternity now for any form of help to reach them.

As a disabled woman, I also feel for my disabled companions in the New Orleans area. People who may not have been able to evacuate because of their condition, or were in hospitals that had to be evacuated when Katrina was about to hit. And for the thousands of survivors who have been injured by the storm and/or trying to pick up the pieces afterwards. I know I cannot get around as easily as others and need the added help of both my braces and walking stick to easily move about. If I was caught in the eye of such a storm I would be hard pressed to be able to protect myself because of my physical limitations. I pray that everyone who needed and still needs that added bit of life assistance was granted it in evacuation from the storm and in life moving forward.

Sure, I'd love to complain about the rising cost of gasoline in this country - but I can't, knowing that every single one of us here is dealing with the same rising costs. And, really, who cares about a little extra money at the pumps when so much chaos continues to erupt every second down by the Gulf? In fact, there are so many, now plainly made trivial problems in my life that I could complain about - I'm always tired, the house is never clean, and work is so busy. But at least I have a house, a job, and a nice, big bed to take a nap in whenever I get the chance. I feel like the richest woman in the world compared to those who've been hit by Katrina.

So, as I sit here drinking my tea, all I can really offer is my sincerest sympathy to everyone who's survived Katrina and is simply looking to regain some semblance of what life was once like for them and their family. Sympathy to the survivors who have lost loved ones in this storm and/or still have family members separated from then as a result of it.

I will continue to pack up clothing, toiletries and more. I send these down south, along with my prayers of strength to everyone who is picking up the pieces, hoping to get back on their feet and start anew. I know, there seems like an infinitesimal amount of pieces still to find and gather.