Wednesday, December 28, 2005


Okay, so I'll tell you right now this entry has nothing at all to do with being a disabled mom. But please, indulge me. I think you'll find what I'm about to say very interesting....

Sweetie is named after my maternal grandmother. That is, she has my grandmother's name as one of her middle names (yes, Sweetie has 2 middle names. Her first middle name was a last-minute add-on in honor of the time of year she was born).

My mom's mom passed away some time ago - before I was married. Before I ever met my husband, in fact. But yet, my mom says that she sees hints of her mom in Sweetie in her everyday actions. For instance, my grandmother hated opened kitchen cabinets and would always make sure to close them when she went in the room. Now my mom watches Sweetie as she skips through her kitchen, non-chalantly closing the opened cabinet doors as she scampers by.

So maybe Sweetie has taken on a bit of my grandmother's persona. I had never thought much about it until sometime last week when Sweetie told me something very interesting.

It was a day last week when we were all home. Sweetie was her high-energy, silly ball-of-energy self, running around our house and singing songs. All of a sudden she says to me "Mommy, I saw Nana's Chuckpa today."

Not catching exactly what she said - checkbook?, jackpot? - she repeated herself so that I could clearly hear her say that she saw Chuckpa today. Chuckpa is what my brothers, cousins and I called my maternal grandfather. (okay, if you need to know, it's because his name is Charles and they tried to get my oldest brother to say Grampa Chuck, but it came out Chuckpa. And so that's what we all called him).

Sweetie has never met Chuckpa. He passed away before she was born.

She went on to say that she saw Chuckpa sitting on a swing.


I called my mom to ask if she'd shown Sweetie any pictures of Chuckpa recently. She said she hadn't - not since several weeks ago. And certainly none of them showed him anywhere near a swing, let alone sitting on one.


We asked Sweetie if she saw a picture of him or if she actually saw him. She said she saw him.


So, what could I say? I told her to say hi to him for me the next time she sees him and that I miss him.

Cut to just yesterday. Sweetie is now sick with a pretty bad cough and cold. My husband picked her up from my mom's house after work and I greeted them at home when they arrived. Sweetie rested her head on her Daddy's shoulder and told me that she was sick and didn't feel good. Then she said something about Nana being sick too.

"Yeah, Nana doesn't feel very well either." I agreed.

"Nana's Chuckpa doesn't feel good, either." Were the next words out of Sweetie's mouth.

I asked my husband if she had in fact said what I thought she said. He agreed, that's definitely what she said.


We have not spoken to her about her "sighting" last week. No one has. So, for her to bring him up again like this is just totally weird.

And cool.

And eerie.

But, really, very cool.

I definitely have no problem believing in ghosts. I've never seen one myself, but I believe that they exist. And I know that kids and animals are highly susceptible to seeing ghosts and interacting with them.

So maybe Sweetie has taken on a bit of my grandmother's persona - and my grandfather is just hanging out around her to be close to his "wife".

I'm very interested to see if this connection continues/lasts between Sweetie and Chuckpa. At any rate, I'm very happy that they are able to know each other, even if they never met here in the physical world.

Sunday, December 25, 2005

Christmas Joy

Merry Christmas, everyone! Hope your holiday was filled with happiness and joy.

Wednesday, December 21, 2005

Happy Birthday, Sweetie!

Sweetie turned 3 years old yesterday! And, yes, she saw Santa. She did great - warming up to the Big Guy after he sang "Happy Birthday" to her. The small bag of M&M's he offered her didn't hurt, either.

We were happy to be the 4th group in line, but unfortunate enough to arrive just as Santa was leaving for his dinner break. Waiting in line for over 1 hour went better than could be expected, though, as Sweetie proved better behaved than the 5-7 year olds in line behind us.

As for me, I was happily shocked to find that standing in one spot for that long of a time had no ill effects on my leg. Up until recently, walking and/or standing for even 5-10 minutes at a pop results in my left leg going numb. But not last night! Thank you, chiropractic care! And maybe even the magic of Santa helped me through the long wait.

Sweetie took a very cute picture with Mr. Claus, but unfortunately, I don't have a digital version of that. So here's a shot of her opening her presents at home once the Santa festivities were over (still wearing her Santa-go-to-meetin' dress).

Sunday, December 18, 2005

"Stimpily Happy One Two The Christmas Time"

Now, imagine this entry's title sung to the tune of a popular Christmas song performed by Paul McCartney. That's right, Sweetie was entertaining us yesterday with her own version of "Simply Having a Wonderful Christmas Time". Very creative.

Sweetie has been able to talk very well for quite some time now. We have no problem understanding her wants and needs and she is very clear about expressing her creative ideas in words and song. In fact, she typically uses an over abundance of words to get her ideas across. "Mommy, can you come to my pretty room with me and you sleep around of me in my big girl bed?" and "Grampy, can you please pick me up so that I can see the balloons on the Christmas tree much better?" are two examples of her verbose sentence structure.

Given Sweetie's excellent grasp of language, it still surprises me how much she takes the things she hears at face value. Meaning, for instance, her understanding of the McCartney song above. She's only heard this song a couple of times, but what she believes is being said is "Stimpily Happy One Two The Christmas Time". Doesn't she get that that just doesn't make any sense?

Or, when watching T.V. recently, Dora the Explorer was visiting various animals, some of which were quite rare and exotic. Sweetie would ask me what the different animals were and it occurred to me that I could have said they were anything, and Sweetie would have believed me. I could have said, for instance, that the umbrella bird was a pumpernickel and Sweetie would have said, "Oh, that's a pumpernickel" quite seriously.

Anyway, Sweetie does understand quite a lot. And she does occasionally tell us when things "not even make any sense." So imagine my surprise when I read in a parenting magazine recently that, by the time a child is 3 - years old, they should be able to speak in three word sentences.

Heck, we just saw my cousin yesterday with her 22- month old daughter who was already clearly speaking five word sentences!

And then there's our babysitter's daughter, who was speaking full sentences (albeit not very complex) before age one. And at age 20 months or so, declared that her favorite 2 songs were "Twinkle, Twinkle, Little Star" and "Landslide" by the Dixie Chicks! Oh yeah, and she also loved "Mary Poppins" at this age and could say "Supercalifragilisticexpialidocious."

Is it just me, or is the magazine's study purposefully setting the standard very low so that parents don't get overly concerned about their child's development, or are my husband and I, and the other parents we know, just doing an exceptional job of raising and teaching our children?

I'd like to think we're doing an excellent job - and I do believe this. I also have been told that Sweetie is very smart for her age. But seeing the development of all the other children in our lives around her age has shown me that she's not that far better or worse than any of them.

My husband and I also sometimes feel that we don't play enough with Sweetie - or ever have. We've often supervised her as she explores her own little world and learns to entertain herself with her toys and imagination. But we don't feel that we've truly interacted with her during playtime as much as we should have.

But I'm now thinking that this is not a bad thing. Learning to entertain herself and develop her own creativity has done her a world of good in her social skills and ability to self satisfy herself. Since as young as 6 months or so she has been able to quietly look at picture books and magazines for up to 20 minutes or more at a time.

This has been a lifesaver for me as a disabled mom, I must say. Not having to constantly hold, comfort and actively run around with her to occupy her time and make her happy has really been a necessity for both her and me.

Now, though, at 2 days away from 3 years old, things are changing (as I've reported here before). Now she's looking for a lot more interaction and entertainment from her mommy and daddy, and she's especially interested in daddy comforting her and picking her up to make her happy.

But playing Candyland, Caraboo, activity books and Memory with her, and talking with her about the rules of the various games, is a lot of fun for my husband and I. So great to help her learn from the activities in which we're all engaged.

Thursday, December 15, 2005

The Call

I did it. I made the call today to enroll my Sweetie in organized daycare. Yah, it's only going to be for 2 mornings a week, but it's still a big deal to me.

We made the decision to enroll her in daycare, even at these reduced hours, so that she can learn more about getting along and sharing with others her age. She does pretty well around her one good friend and her cousins that she sees often, but other young family and friends whom she sees considerably less is still a challenge for her.

We'd also like peer pressure to kick in a little bit to help her learn to eat more and, hopefully, to potty train. The facility we've chosen does not require their 3 year olds to be potty trained, but they do work closely with the kids and the parents to get the practice underway.

And, as my mom, the nurse, says, it will be good for her to get exposed to germs now, instead of waiting until kindergarten, so that we can hopefully get over and done with some of her nastier sicknesses ASAP.

But it's still going to be very hard for me to leave her on that first morning. She starts in early January - soon. I think she will do just fine with her new surroundings. I, on the other hand, will probably dissolve in a pile of tears.

Why do our kids have to grow up? Can't she stay two forever? There's too much pressure to be three: potty training, sleeping through the night, going to “school” and making new friends.

It’s a lot of responsibility for my little lady. But she can handle it. Can I?

Sunday, December 11, 2005

Update on Bee

Great news, everyone! Bee had her baby!

For my regular readers who have been with me awhile, you'll remember Bee from a post I wrote back in August. She's a woman who, along with her husband, was expecting a baby daughter, after many natural attempts, through donor egg fertilization (sorry if I have that phrasology wrong). Well, turns out that prenatal tests showed the baby had spina bifida. So, I've been keeping up with Bee's story to see how both she and her daughter are progressing.

Well, Bee just posted a new entry to her own blog and announced that Madelyn Faith is here - arriving on November 28th! Her spinal opening was smaller than expected, and she pulled through the closure surgery like a trooper. Madelyn came out kicking those little legs of her's and her hydrocephalus was so mild that it took a full week to determine that she did in fact need to have a shunt put in.

Bee, on the other hand, had a rough pregnancy, with gestational diabetes and other illnesses. I'll let you click on over to her site for the full report. But I am thrilled to let it be known that everyone is now safe and happy. And Bee, baby and hubby are all totally in love with each other and doing well.

So nice to report a happier ending to this story than the doctor's originally diagnosed.

Wednesday, December 07, 2005

Will The Real Sweetie Please Stand Up?

Hi All! Here's a quick mid-week post directing you to my article in the Autumn DPPi Journal, out of London, England. The article also features a few nice pictures of me, Sweetie and my husband - heck, they even made Sweetie and I their cover models! Really cool. I'm proud of this article and so excited about my international print exposure.

One thing to note about my DPPi article - I wrote it a few months back, before Sweetie decided to turn 3 before her time. My mom even commented that this article makes Sweetie seem almost too perfect. I agree, especially based on her recent behavior. It's as if Sweetie got a hold of my article, read it herself and decided "Ha! Mommy thinks I'm so great. Well, I'll show her a thing or two!".

And the juxtaposition between my DPPi article and my December article at Audacity Magazine is almost comical. One discusses "good" Sweetie, the other, well, not so much.

But seriously - it's just very interesting to see how Sweetie is growing and changing - adapting to her environment and her more complex wants and needs. It's a challenge - for her and for us. But one of these days I know the "real" Sweetie will find herself and settle into a good, healthy pattern.

Ah, kids. Can't live with 'em, can't live without 'em.

Sunday, December 04, 2005

I Got Nothin' - But Everything I Need

I'm racking my brains for something to write about today, but can't come up with anything.

It's been a homebody day, what with my husband and I getting over yet another round of colds (and an ear infection for me). We put the tree up last night and decorated it, and the rest of the house, today. We have a warm fire going in the woodstove, Christmas music and videos playing in the background, and hot drinks and soups to fill or bellies.

Sweetie loved hanging up the ornaments and covered one particular section of the tree very well. :)

Tomorrow I'll set out for what I hope will be my last gift-purchasing shopping trip before the Big Day.

With so much to do during the holidays, it sure is nice to have a quiet day like today to spend at home with your family, watching the snow softly fall outside. So nice to soak in the season and smile, taking stock of all the wonderful things I already have in my life.

Thursday, December 01, 2005

"It's My Birthday, And We Go See Santa!"

For several months now we've heard the above statement excitedly, yet matter of factly, come out of the mouth of our Sweetie. Her birthday is only days before Christmas, so I told her, sometime mid-summer, that we'd go see Santa on her birthday. Ever since, and almost daily, Sweetie has reminded us of this thrilling upcoming event.

We keep asking her what she wants for her birthday and Christmas. All she says is "presents". She doesn't quite get what exactly is going to happen - and this is a good thing. She's at the perfect age where she's excited for the holidays, but doesn't exactly know why. And she's also at the perfect gift-giving age because all the things she's "into" - Play-doh", children's board games, puzzles - are all pretty inexpensive. Perfect! Big fun for her, little expense for us. Yay!

We do plan to give Sweetie a train set for Christmas - set up and running around the tree when we come downstairs Christmas morning. She loves trains. Loves to go to the children's room at Barnes and Noble and play with the train there for hours. So when a commercial recently came on the T.V. advertising a similar train set to the one we've got her, I asked Sweetie if she'd like Santa to bring her one of those. She looked at me with the widest, most awe-struck eyes and said "yah". Cool. I can't wait to see her face Christmas morning.

This weekend we're going to put up the tree. We have an artificial one, so it takes a bit of work. So my husband will simply put it up and light it this weekend, then we'll decorate it next weekend - unless we just can't take having a naked tree in the house that long. I can't wait to see what Sweetie thinks of this tradition. In years past she hasn't shown all that much interest in the tree preparation. This year, I think she'll be totally enthralled.

Then there's her advent calendar. Last year she had one and it was great fun to have her open the doors every morning then go tell Nana what was behind today's door. "Teddy bear", "snowman" or "Santa" are examples of her one-word answers we prompted her to give. But now she's able to say "Guess what, Nana! I opened the door today and it was a snowman with birdies on his hat. hah!" So fun. Only problem is that she's much too interested in her calendar and it's a fight to make her understand that she can only open one door a day.

Yes, this holiday season is certainly going to be a ton of fun this year. Happy Birthday Month, Sweetie. We love you.

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".

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.

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.

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.

Sunday, October 30, 2005

Sick Children (and Husbands) Aren't Much Fun - A Study In Patience

Sweetie's sick again, with a mild cold. Not enough to totally incapacitate her, but just enough to make her cranky and indecisive about what she wants to do with herself. Happy and content one minute, crying and whining the next.

My husband has a cold too. He started it, in fact. His way of dealing with his sickness is to tell me, blow by blow, how it's progressing for him. He started with a sore throat - that's it - so he knew for sure he was doomed to be deathly ill within 24 hrs. Then he woke up feeling fine - thought he was getting over it - then by mid-morning he's drippy and scratchy again in the throat, but eating makes him feel better; he remembers when he was a kid being sick meant ..... etc., etc., etc.

It's okay, though. I don't mind listening to him too much - it's just his way and it's helping him work through it.

Just the same, though, with crankypants and analytical boy, I'm up to my eyeballs in miserableness. Having to listen to and take care of them, while trying to maintain my patience in the face of their feelings of "yuckiness" is incredibly trying. My only saving grace is that I myself have not caught the bug, and today both Sweetie and Hubby do seem to be creeping closer to health. There's light at the end of this tunnel - I can almost see it.

More about patience - with sicknesses in the house this week, along with a couple restless nights for Sweetie, my patience is being tried more than ever! I have always been a very patient person. My co-workers tell me I have the patience of a saint and they commend me for staying cool and calm in the face of deadlines, faulty machinery, and all the other factors that keep my job from running smoothly. Likewise, at home I pride myself on my ability to deal with Sweetie's antics much more calmly than her father. I am usually able to look at her behavior practically and understand that she's not doing things for the sole purpose of annoying me, but because she's growing and learning about her boundaries and life rules. Stepping back and realizing this has helped me a lot in getting through some of the tougher moments in raising her.

However, like I said, this week has really opened my eyes to just how impatient I'm becoming. Granted, my worst times of impatience lately have been around, oh, say 3:00 a.m. when Sweetie's wide awake, screaming at the top of her lungs about all the things she wants to do right then - except sleep. Then, out of desperation and looking for anything to calm her down, we give in to some of her wishes - only to be emphatically shot down because of course now she doesn't want that at all!

She wants milk - REALLY wants milk, ANYTHING for milk. We get her milk - she throws her cup on the floor because now she absolutely does NOT want milk - how could we possibly think to offer her that?! She wants to go downstairs - PLEEEAAAASSSEEE, go downstairs at 5:00 in the morning. I take her down - but NOOOO - she wants Daddy to go with her and pick her up. Just pick her up for the sake of doing it. She doesn't want a thing to do with me and what I can do to help her out.

(Maybe this is my big problem. I can't patiently deal with her when she's like this because, unlike past times, now she's simply not allowing me to help her however I can. She's looking more and more to her Daddy to pick her up and comfort her in her times of distress. I can't pick her up, and she knows it, so to her I'm no good at these times. But with hubby being sick this week, he's not been able to do what she wants of him so much. But she won't let me help her. Thus - the big problem).

Anyway, you get the idea. That's just a bit of what we've been through this week.

I think she's done having naps. Her hysterical behavior this week has only happened after days when she got good naps. But on her no-nap days, she's both gone to bed easily and she's slept soundly the whole night through - except for maybe the brief whimper or two in the middle of the night, which is quickly and easily dealt with.

Now if we could only get Nana, our daycare provider, to go along with our new no-nap routine.

Thursday, October 27, 2005

Priorities II

Hi all. I'm cheating a little today. I've decided to use as today's post an essay I wrote a little more than a year ago, when Sweetie was 1 1/2 years old. It talks about how difficult it was/is for me to organize my time.

(I just now realized that this is similar to an earlier posting I did on priorities- but I think the message bears repeating anyway. Organizing/prioritizing I think is one of the most difficult tasks for any mother. Maybe someone reading this can relate - I'm betting many of you can.)


"Sleep when the baby sleeps." That's the well-intended, seemingly sensible advice all new mothers are given, helping them ease into their new world of diaper changes, midnight-feedings, and baby talk. And as a new mother, I appreciate any bits of advice and wisdom I can get in regards to what lies ahead. However, this staple of sane mothering just has not worked for me. More to the point - prioritizing baby's needs, household chores and my own need for self-preservation is, as (Sweetie) toddles ever closer toward the Terrible Two's, a major bone of contention in my life.

The first several months – heck, the entire first year! - were very challenging for me. As a disabled mother, it was difficult for me to do anything but tend to my daughter when she was awake. Because of my weak legs, I wasn't able to carry her around in a pouch on my belly, taking her with me as I swept through the house cleaning and dusting. Therefore, the only time to really take care of the house was when she napped. Likewise, I found the only time I could do anything for myself - whether it be a quick nap along with her or to catch up on my reading and writing - was when she slept.

While the thought of snoozing sounded like heaven whenever (Sweetie's) head went down (and her cute little bum went up), I just couldn't stop thinking that there was laundry to do and dishes to get into the dishwasher (my first Mother's Day gift. The best gift I've ever received. Seriously!). So I’d inevitably set off on my "wifely", and now "motherly" duty of keeping house. The moment would soon come, though, when this pre-baby, self-centered spirit would return and say to me, "You know, Amy, the baby’s sleeping. Why don’t you sit yourself down with a hot cup of tea, a good book or magazine, and just relax for a bit." Taking the spirit’s advice - laundry and dishes be damned! - I would put down the detergents and sponges and set the kettle on high, picking up the latest issue of “Oprah”. What does she have to say about the best ways to prioritize and live a happy life in your impeccably clean house, adorably well-behaved children playing quietly at your feet?

Thankfully, (Sweetie) has always been a very happy, self-contented baby. So she is able to play unattended for short spans of time. This has allowed me to scoot away for a minute to get a load of laundry going or put the last plate into the dishwasher to run. But as a new mother, I am totally in love with my baby and want to spend as much time with her as I can - if not interactively playing with her, then at least watching as she plays, learns and explores.

I so love spending time with my Sweetie that, upon returning to a full time career outside of the house, I found I could not get home to her fast enough after a long day's work. I live for the evenings. My job is such that I cannot leave until everything is completed each day. If computers or machinery break down, I have to stick around until all is fixed and done. Before (Sweetie), this was not a big deal. I didn't mind (too much, anyway) staying to work out any problems that arose. Once I became a mother, though, if I am at work even five minutes passed quitting time, I get fidgety and stressed, ready to get the heck out of there and go get my baby. I yearn for the weekends, when I can spend two whole days with her.

Ironically, this leads to another point on this crazily spinning pinwheel called motherhood. In (Sweetie's) first several months of infancy, whenever those precious weekends came around I’d often find myself wishing (she) would settle down for one good nap so I could take care of some other things. In fact, there were more sleepless Saturdays than I'd like to admit where I'd end up calling my mom in tears, asking her if she could baby-sit that evening so my husband and I could get out on our own for some time. And then my hormonally crazed self would continue to cry because of the ridiculousness of it all - wanting to be with (Sweetie), but wanting her to sleep so I could do my own thing at my own pace.

I remember one evening in particular when, after a rough, no-nap day, my mom did watch (Sweetie) for us. I was excited to go out on a nice, grown-up dinner date with my husband but, as soon as dinner was over and he suggested that we go shopping, I was crying again because I had had my rest and now wanted to be with my daughter again!

Things have started to get better. She is 22 months old now – her own little person. I think I have finally gotten a handle on prioritizing - more or less. I find that I must get chores done immediately upon putting her down. Then by the time she settles herself into dreamland I can, perhaps, sit down too. I have tried it the other way but too many times I get so wrapped up in the luxury of my rest time that by the time I finally get up to do some real work, she's waking up and I'm mad at myself that "I never have the time to get work done in this place!"

Above any other lesson motherhood has taught me so far is this: learn to live life in 2 to 3 hour increments, letting the baby lead the way. Just go with the flow as best you can. She will tell you when and if you’ll get housework done or a rest in for yourself. And, if things don’t go as you had hoped they would, well – maybe “the boss” will appeal to your needs tomorrow… on second thought, better TiVo Oprah for the rest of the week and program that new Roomba I just got for my birthday. We’ve got many a board book to read and lots of play dates to keep.

Sunday, October 23, 2005

Oh, the Humani-pee!

So we started potty training Sweetie in earnest today, after a huge fight to change her diaper this morning. I said, "Okay, then we'll just put you in big girl Dora panties and you'll learn to pee in the pot!"

(After all, we've been a little reluctant to train her because it's just so darn convenient for us to have her in diapers. However, yesterday we went to visit friends and, having just changed her, I didn't take along another diaper when we decided to leave the house for awhile. But after some time Sweetie was telling us she was wet and needed a diaper change. She NEVER tells us to change her, and her pants were in fact wet. So this was an instance where it would have been much more convenient if she knew how to use the potty.)

Anyway - now, six or so hours later - I give up. I would never have guessed in a million years just how many times in an hour this girl pees! I intended to have her try the potty every 20 minutes. But EVERY SINGLE TIME, she'd beat me to it and pee in her pants beforehand. Then, having her sit on the pot for several minutes more, just to make sure she was done, she'd never do anything. Not one pee on the potty, no matter how long I kept her there. At one point I decided she’d just stay on the potty for however long it took - even if it's an hour or more! Well, after sitting there for more than 1/2 hour with absolutely no action, and her contentment to stay was waning, I got her dressed. Not two minutes later, she was playing "barn" in the living room when she wet herself again!

After seven or more panty changes - I've had it. Training has started and ending today.

I talked to my mom about this (she was nice enough to buy a couple more packages of panties for Sweetie this morning and bring them over to us). She recommended that we just try again in another month. If she doesn't "get it" then, then wait another month more before trying again. One of these times she'll understand. Mom also reminded me that my niece didn't get potty trained until she was almost 3 1/2 years old - at which point she trained very easily.

Another reason today's attempt was so frustrating for me was because I see another obstacle to the process due to my disability. I realize now that I will not be able to pick her up and rush her to the bathroom if ever she's about to have an accident. She has to get there herself. And, as proven today, she's not so put off by feeling wet that she wants to get cleaned up right away. She was okay with sitting in her wet clothes until we noticed that she'd had an accident. Then we had to force her to go to the bathroom with us to change and try the potty. So she obviously doesn't get the urgency of the situation yet, so therefore isn't about to get herself to the potty on time.

If I had continued with the training today and on forward, she and I were going to have to go to my parents' house tomorrow and the next day (my days off from work) so I at least had an able-bodied adult to help me with the emergencies. But, as it stands, we're waiting.

But she is now strictly a Feel and Learn Pull-Ups girl from here on out. No more baby diapers in this household, that's for sure.

Thursday, October 20, 2005

Stunningly Cute

Boy, have I learned a lot about my disability since I've started writing this blog. In doing some research yesterday I discovered that people with spina bifida have a growth hormone deficiency - so that's why we tend to be of short stature. I always thought I was short because of my spine not being fully developed. After all, from the knees up, I'm proportionate in height to taller people - it's just from my knees down that I "stopped" growing.

If only I was given growth hormones when I was a kid. I could be a full 2 - 3 (or more) inches taller than I am now (5 ft.)!

"Do you know how stunningly beautiful I'd be if only I were taller?", I asked my husband. Now people call me cute - I wish I were stunning.

Sweet guy that he is, he said, "Yeah, but then someone else would have snatched you up before I came around and we would have never met. And there'd be no Sweetie."

No Sweetie? I can't even imagine it.

Sunday, October 16, 2005

Y'all Talk Back Now, Ya Hear!

Sweetie is fast approaching her 3rd birthday. Well, more so in attitude than in time, actually. With 2 months to go until the official day, she is certainly getting in her "Terrible Three's" practice time nice and early, so that by the time she actually hits the date she'll be a certified "Drama Queen". (I like that title - let's go with that. It's much better than "brat" or "Hell on wheels". After all, she's already got the hot pink shirt emblazed with the Drama Queen title right across her chest.)

So, what exactly is Sweetie doing lately to practice for her year of drama? Well, besides from her strong will and independent nature, for over a month now she's been telling people (Grammy, her cousins, me, whoever...) "Don't talk to me." "Don't look at me." and "Don't tell me." Whether or not said offenders are actually talking, looking or telling her anything, it doesn't matter.

I find she's particularly grumpy in the morning and/or right after a nap. I've also considered that it may be a jealousy thing when it comes to her attitude toward her one cousin in particular. My niece is currently living with my parents while she's at college. So Sweetie may be jealous of someone else taking Nana's attention away from her. Not that my niece demands that much attention or anything, but she's someone "new" in the house sometimes where there's usually only Sweetie and Nana

These are not excuses for her behavior, mind you. I'm just trying to work it out for myself what would possess my sweet little girl to start regularly talking back to people and being so contrary. I suppose I maybe can't reason it out - it's simply her age and the stage she's going through.

(Funny side note: at one point when I was visiting with my mom and niece, Sweetie started being rude. My mom tried to reassure me that Sweetie will get over herself in time and that this was just a phase. So, what does Sweetie do, but put her hands on her hips, stuck out her chin and informed her cousin that "It's just a phase, Abby. It's just a phase." In spite of ourselves, we all of course laughed. It's so difficult to teach about manners and not being rude when you're laughing at your child's defiant attitude and posturing. Ugh!)

Anyway, it turns out she's not just talking back to people. No, my daughter finds it necessary to tell both the songs on the radio and the commercials on T.V. that she doesn't want to do whatever they're suggesting either. For example, the new version of "Listen To Your Heart" recently played on our car radio as we were heading off somewhere. There Sweetie was in the back seat saying, "No, I don't want to listen to my heart!". And not just once, but every time that line repeated throughout the whole song. As for T.V. commercials, I can't think of a specific example right now, but I know she's plainly announced to the set on at least a couple occasions that she didn't want to buy or do whatever it was that was being advertised at the moment. My husband and I constantly have to remind her that "It's just a song, Sweetie." or "It's just a commercial - you don't have to do anything." But this doesn't seem to appease her. Again - ugh!

Sweetie is also very much in the "mine, mine, mine." frame of mind. When visiting friends recently, she was happily playing with the ride-on toy that they have for their 1 year old son. Whenever this little boy came over to her, though, Sweetie was all about "no, baby, this is mine!". NOT so cool at all. (What was somewhat interesting, though, was when this same little boy was looking at my walking stick, trying to figure out what it was, Sweetie quickly piped in her 2 cents that "No, baby, that's my mommy's stick. Don't touch mommy's stick." Cute that she was "sticking up for me", not cute that she felt it her business to be so bossy.)

So, what can we do? We've talked to her about good manners and sternly told her when she's being rude that she needs to be nice to people. We've also tried to ignore it, thinking not giving her any added attention over this might make her attitude quickly revert back to the sweet demeanor she usually has. And I've been looking for Veggie Tales videos and/or other children's shows that might discuss the importance of good behavior and being nice to others. But when all is said and done, I'm afraid I might have to just admit that this is in fact a phase she's going through and that she'll work through it in time.

I just hope she works through it sooner rather than later. I don't know if I can deal with a whole year of this 'tude.

Wednesday, October 12, 2005

I was a Vegan/Whole Foods Pregnant Woman

My husband is a vegetarian. Well, he was, anyway. He mostly still is, but will now have some chicken on occasion. Anyway, when I met him I was a strictly meat-and-potatoes girl. There are not a whole bunch of veggies that I like to eat - in fact, I'm pretty picky in what I eat in general. But I was having more and more indigestion and "tummy troubles" some years back and he suggested that I at least try to eat like a vegetarian to see if that relieved my symptoms. So I converted, mostly. I'd still allow myself a McDonald's hamburger treat or my absolute favorite indulgence of a steak and cheese sub every once in awhile. But I have to admit - the better I ate, the better I felt. And whenever I did fall back into my meaty ways, I would really pay for it later in terms of my stomach pains - my system obviously didn't like me cheating my new diet.

My husband and I agreed, however, that once I became pregnant I would not only eat a strict vegetarian diet - I would eat a vegan/whole foods diet (no meat or dairy and the most organic, non-processed foods we could find). We wanted to do this for the health benefits to our baby. We knew we weren't starting out with great odds for her health because of my spina bifida. So we felt it was very important to do what we could to increase her chances for a healthy existence in any way we could.

We researched and met with a nutritionist to be absolutely certain we were okay to do this. After all, we wanted to help our baby, not deprive her of necessary nutrients and minerals. But our nutritionist assured us that we were wise to choose this pregnancy diet and that, with a little extra care in choosing appropriate foods and supplements, it was a perfectly safe - even preferable - way to go.

I remained on the vegan diet until Sweetie stopped breastfeeding - about 7 months old. Since she was still taking her nutrients directly from me, I wanted to be sure I ate healthily for as long as she needed me to. Once she stopped nursing, though, I began to slip further and further from the vegetarian path. Now we subscribe more to the whole foods diet more than anything else. That is, all three of us eat a wide variety of food options, from chicken, to cheese, to fruits, veggies, pasta and more - all as organic and non-processed as we can get.

We're very proud of all the different types of foods Sweetie is willing to try and often likes. Personally, I often feel that she doesn't eat enough food, but I know what she is eating is very healthy for her.

Anyway, I was doing some research tonight and found this informative article on vegetarian diets and pregnancy at It's got a lot of good advice and guidelines to follow if you're interested in following this type of diet during your pregnancy. Happy eating!

Sunday, October 09, 2005

Spina Bifida Awareness Month

October is National Spina Bifida Awareness Month. If you haven't already, click here to purchase your SB Awareness Wristbands today. Also, click here to read my latest parenting article at Audacity Magazine. Make sure to pass the word along about this fantastic webzine for disabled individuals and the audacious, courageous things we do!

Spina Bifida Pregnancy - Big Deal or Big Void?

Am I making way more of a big deal out of things than the situation actually warrants, or is there truly an incredible lack of information available for women with spina bifida seeking advice on pregnancy, labor and child care? Granted, my own pregnancy went smoothly and was handled very professionally by my doctors. But still - before I became pregnant it would have been nice to have at least been able to read some first-hand accounts of spina bifida pregnancies, or to read up on the latest research and scientific findings on the subject.

As I've written here before, I found no information of this sort available to me when my husband and I were considering pregnancy. Even my doctors - professionals who either specialized in spina bifida, bone structure and/or high risk pregnancies - were not able to give me and my husband any concrete answers to our questions regarding what a pregnancy would entail for me in my situation. I'm sure the fact that spina bifida is so multi-faceted - so different for each individual who has it - does not help to form any sweeping generalizations for any medical issue, least of all pregnancy and childbirth. But answers such as "sure you can have a baby - we'll just have to see as you progress what will happen" are not altogether comforting messages to process.

What did I find out back when I first became pregnant? Well, for starters, I was told by both my neurologist and OB/GYN (whom had discussed my case with each other) that I should remain on my Carbatrol anti-seizure medication throughout my entire pregnancy. The ill-affects to the fetus of having a seizure while pregnant, they told me, far outweighed the increased risk of disability to the baby as a result of the medication. Fine - both my doctors agreed and I knew that I would be closely followed throughout the pregnancy to see that my medication levels did not rise too high. And at 16 weeks gestation I would have a Level II ultrasound to check on the health of my baby. I trusted the decision and stayed on the Carbatrol.

But you know what's now disturbing? I now see a new neurologist whom I love and he has agreed to monitor me as I go off of my medication altogether. He said, though, that if I had decided to remain on the Carbatrol and if I then decided to have another baby, he would highly recommend that I switch to a different anti-seizure medication for the duration of the pregnancy. If I recall correctly, he said Carbatrol carried the greatest risk of spina bifida occurrence in fetuses. Hmmmm. VERY interesting. I knew I never really liked my previous doctor and that both my husband and I found him to be old fashioned and highly conservative in his medical thinking. Let's just say that this new information from my current neurologist doesn't do anything at all to improve my opinion of my previous doctor.

Anyway, I also was told that I should remain on my 4000 mcgs of folic acid that I had already been taking for the previous couple of years. The average woman with no history of birth defect in her family should take 400 mcgs/day of folic acid in order to decrease the risk of neural tube defects for her baby. But a woman with a family history of birth defect - or who has the defect herself - is to take the prescription dosage of 4000 mcgs/day to ward against spina bifida and other neural tube defects. I never had any disagreement with this decision and was happy to do what I could to increase the chances of having a healthy baby.

My OB/GYN also kept close tabs on me in terms of UTI's. Women with spina bifida are more apt to suffer from UTI's during pregnancy than healthy women. So, every time I went in for my OB/GYN appointments, I was tested to see if I had developed a UTI. Fortunately, I never did and I remained in general good health throughout the entire pregnancy.

Well, you can read more details of my pregnancy and delivery in previous blog postings here, but suffice it to say, it really all went very well. But that's just me. I've since heard from other women with spina bifida who have had very different experiences in pregnancy and childbirth from my own - both better and much worse.

It's high time there were some published studies done on the effects of pregnancy in women with spina bifida - even if it doesn't prove anything earth-shatteringly surprising. But maybe it would. Both outcomes would be interesting to discovery, I think. Just having some legitimate information out there for interested women to read, perhaps enabling them to feel more comfortable with what may lie ahead for them in their journey towards pregnancy and childbirth would be a wonderful thing.

Thursday, October 06, 2005

Okay, So Maybe Not So Much Success

Well, Sweetie's sleeping soundly right now, all cuddled up with Teddy, Bunny and Winnie - in her crib. Yes, she's back in her caged walls, for now. After this weekend (when she'll be spending an overnight at Nana and Papa's anyway), then we'll give the big girl bed another shot.

It's all the fault of a spider. A daddy long legs, to be exact, that she saw a few nights back after we tucked her into her bed. She told me she saw a spider, but I thought she was looking across the room and I didn't see it myself. After another minute she said again, with much more concern in her voice and fear in her eyes, that there was a spider. I could see now that she was looking at her bed rails, but at my first glance here I still didn't see the offending creature. Then, right there in front of my face, I saw it. And it scared me. And I screamed. And so did Sweetie.

Well, that was it for her. I took care of the daddy long legs and told Sweetie everything was all better - it wouldn't bother her again. But she was still scared. She didn't want me to leave her side to go turn off the light, nor did she want me to merely sit at her bedside until she fell asleep. No, she wanted me to "sleep around next to me, Mommy, and hold my tummy with two hands."

I should have done this. I should have recognized that her spider fear set her back a few notches in her strides toward successfully staying in bed by herself. I should have comforted her better and stayed with her as she wanted. But I didn't. I was insistant that she either accept that I was only going to sit next to her for awhile or I was going to put her in her crib. Because the crib won out.

Then the next night, when Daddy took her to bed and he asked her where she wanted to sleep, she said her crib. And he accepted that (much more easily than I would have, mind you. I would have questioned her more, arguing that she at least try her bed first).

So here we are now - with Sweetie consistently chosing her crib over her bed. Oh well. Like I said, come next week we'll start again at square one and see how well she does. Pray for no more spider.

Sunday, October 02, 2005

Get The Word Out

I've spent a good deal of time both last night and today searching for ways to make my blog more user friendly and accessible. I've just registered with several blog search engines, so hopefully this will get this site more recognition and more traffic. I've also added a link to Blog Top Sites on my sidebar, where I've registered and can now have my readers rate my site. Please click on over today and tell me what you think! Finally, I am going to make a concerted effort to write more not only about my daily doings with Sweetie, but also about more spina bifida/pregnancy/child care related information as well. After all, that's why I established this blog - to give other women and men with spina bifida a friendly resource for answering all their pregnancy and childcare related questions.

I love writing this blog, but do sometimes feel that I stray from my initial purpose. Then again, one main point I'm trying to make through my blog is that I'm not very different from other able-bodied mothers out there. My Sweetie puts me through all the typical trials and joys that most other little ones put their own mothers through. Sweetie doesn't care about my spina bifida or that I'm not physically able to do some things for her - we just make the best of the situations that arise. That being said, I know my readers would really appreciate any concrete information I can pass on regarding pregnancy, labor and delivery for women with spina bifida, as well as information on adapting to the daily childcare needs of your healthy child.

To that end, I also spent some time on-line this morning researching anything spina bifida/pregnancy/childcare related. And again, I was disappointed to find more information about raising kids with SB than information about the parent having it. Don't get me wrong - it's absolutely terrific that there's so much out there for parents who are raising children with spina bifida. But what happens when those children grow up to be adults who want to get married, have successful careers and start families? There's a serious lack of information for SB adults, and that's just pitiful.

In short, I want to write about what you want me to write about. Please don't hesitate to contact me - either through my comments, the comment board at Blog Top Sites, my message board or personal email - and tell me what's on your mind. I'd love to fill you in on how I've handled any specific parenting and/or pregnancy challenge - just let me know what issues you'd like me to focus on.

In the mean time, yes, I'll continue to write my typical ramblings on raising my Sweetie. We have a ton of fun together and she's always got something new and interesting to say and do. Just know that you can start to look for more frequently updated posts with more informative/resource-oriented entries. My goal is to make this one of the top resource blogs of its kind. Together, with your help (both in topic choices and simply getting the word out about my existence) we can make this happen!

As always, thanks for reading!

One Down, One To Go

Well, everyone, we have success! Sweetie has been sleeping in her "big girl bed" since last Sunday night. 2 or 3 of those nights have been complete successes, spending the entire night in her bed. The other nights have seen her waking up in the middle of the night and either wanting to spend the rest of her sleep time in "mommy and daddy's bed" or back in her "baby crib". And one night when she woke up around 1am she actually wanted to be tucked back into her bed, but have me stay with her for awhile. Not being a work night, I agreed and actually fell asleep until she woke me up around 6:45 am.

Each night this week when we put her to bed, I've stayed with her until she's fallen asleep - either lying next to her in the bed or sitting on the small hassock beside her. Most of the time I've found that within 40 or so minutes she has stopped squirming and talking to me and she falls asleep. Last night, though, she fell asleep within 15 minutes. She didn't get a nap yesterday and instead spent the entire day running around with other kids at a Welcome Autumn party we went to at our friends' house. Thus, the quick transition into dreamland.

Nap times, however, are still spent in her crib. I tried to lie down with her last Monday for her nap but, what with the daytime light still streaming into her room, she wasn't able to settle down and rest while I was there. And she wasn't about to stay tucked in all by herself once I left the room either. So in the crib she went. But this is a decent trade off to make, I think. Nap time is crib time, while bedtime is bed time. Makes sense to me.

Now for the potty training. I've had enough fights with her over diaper changing time. It's time to get this show on the road.

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.

Sunday, August 28, 2005

It's beginning to look a lot like....zzzzzz

Guess what I bought yesterday? No, not Christmas gifts, per se. I bought the materials to MAKE some Christmas gifts. Now, I can't say what I bought or what I'm going to make because various readers of this blog just might be the recipients of some of my homemade treasures. But I can say that I've got at least a couple fun projects ahead of me to get crackin' on.

(Sweetie is starting to get into the holiday spirit as well. Her birthday is December 20th, so I told her the other day that on her birthday Daddy and I will take her to see Santa. Ever since, she's been thinking about this and will even stop her regular play to get up, run over to me, and whisper to me like it's some great secret she's trying to keep "Guess what? It's my birthday and I'm going to see Santa! Yeah!" So cute! She'll then go into singing Happy Birthday to herself and tell us all about her cake with letters on it. It's not that she really thinks it's her birthday now, I don't think. She's just excitedly thinking about when the day comes. Okay, so maybe she's more in the birthday spirit. Whatever - it's all joyous.)

Another way I can tell it's getting to be that time of year is because - A) I'm starting to get really freaked out about all the money we end of spending for Christmas (hence the move toward more homemade gifts), and - B) I'm starting to get really overwhelmed with all I have to do (i.e. - the homemade gifts. What a vicious circle.) Not just with making the gifts, though. It's everything I have to do, today and looking forward. For instance, Sweetie is down for her nap now, so I really should start organizing my gift materials, but I also always write my blog entries during this time (which is what I've obviously chosen to do now). Then I have to check on the laundry every so often, as there are piles of it to do. I have a second Christmas gift I could get started on. I really should write a little more for the at-home/writing portion of my 40-hour work week (I have a couple hour's work to make up from last week because life was too chaotic to get it done then). But what I want to do most, since I was the one to get up with Sweetie this morning at 6:15 am, letting my husband sleep in until 8am, is to take a nap. And the damp, dreary weather today is strongly pulling me in the direction of my comfy bed.

When I went to my first visit with my new neurologist a few months ago, I was given a five question sleep deprivation survey. I had to rate, from 1 - 5, how sleepy I felt in different situations. My results showed I was "highly" sleep deprived and should seek medical attention ASAP. I rechecked my answers to see if I could better my score, but even changing a few numbers here and there didn't get me out of the "red zone". Hmmm. Is this really a problem, or is this a relatively-new-mom/disabled-woman-who's-not-used-to-so-much-constant-activity issue? I tend to lean more toward the latter, and I suppose my doctor does too, because he didn't talk to me about the survey's findings.

When I first met my now husband he took me on many wonderful weekend adventures. We went mini golfing, shopping at the outlet malls, dancing under the stars at outdoor concerts in the park, out on dinner dates to some great local restaurants, and to meet his extended family at their annual reunion picnic, plus so much more. And you know what happened after dating for just one month? I found myself in the hospital overnight with mono. I was hospitalized because my doctor wanted to be certain in ruling out meningitis, which, of course, it was. But my point is, all this new activity in my life - when I was used to staying home on weekends, reading or watching T.V. - had exhausted me to the point of illness. I'm thankful that my spina bifida is at a level where I am able to be more active if I choose, but I guess my body had had it at that point. It taught both of us that, even though I technically can do the physical activity, I still have to be careful to take it easy.

Writing this entry has made me realize that it's okay for me to feel so stressed - and so pooped. I see that I do have a lot on my plate and it's okay for me to feel overwhelmed about it all. I also don't have to be engaged in lots of physical activity to feel tired. The housework I do, plus all the little mental and physical things that fill up my days in caring for my daughter and completing my job, are enough to wear me out. And that's okay. I just have to remember to pace myself.

This morning when my husband and Sweetie were running around like lunatics, playing "chase me", I was feeling really down on myself that I couldn't play this with them. It especially got to me when, after my husband left to work on some home projects, Sweetie asked me to chase her and I had to say I couldn't. She was totally fine with this and easily transitioned to some calmer activities. I just was having a mini pity party for myself, feeling like I'm not as active a parent or as fun a parent as she wants me to be.

But, then again, who's since woken up from her nap and is now sitting on my lap as I write this - and not with her Daddy who's now resting on the couch? My Sweetie, that's who - the best Christmas gift I've ever received.

Sunday, August 21, 2005

Fear and Turtles in New Hampshire

Lately Sweetie's been saying that she's "scared" of many things. Everything from Grampy to bugs to the T.V. (both off and on) and even her toys supposedly scare her. This has got to stop.

It seems to have started after we took her to an amusement park where we all went on the tilt-a-whirl style ride, fashioned in the shape of friendly turtles. She really wanted to ride it and, technically, she was allowed to go on this ride as long as her parents were with her. But really, I was even scared of it! She lasted through the ride (barely - she REALLY wanted to crawl into her Daddy's lap) and we told her how proud we were of our brave little girl. But the lasting impression for her - the story she told over and over for the next few days to anyone who would listen - was of the "scary turtles". "I cried on the scary turtles, Grampy" she said as she talked to him on the phone the next day. Uh oh - now we've done it. We've brought fear into Sweetie's life.

In her infant and even early toddler days, I would pass by certain commercials for horror films, or watch somewhat scary scenes on popular shows like "CSI". Gruesome images that I needed to turn away from flashed across the screen as Sweetie sat calmly on my lap drinking her juice. She didn't even flinch at such visual stimulation. I remember one episode of said show where I told my husband "she has to go to bed NOW." because the storyline and scenes were just that terrifying and brutal. She didn't seem to mind what she saw on the T.V., but I personally didn't want her subconscious mind to take over and give her nightmares from it. Or would she? Who knows. It always made me wonder just when does a child "learn" about what things are scary or yucky to look at or just plain bad? Well, now I know, because we've taught her ourselves. "We won't go on the scary turtles again." we promised as we quickly got off the crazily whirling ride. "That was scary." we told her, followed by "you were so brave!".

I wish children never had to learn fear. But I guess it's better to be scared and cautious than absolutely fearless, always putting yourself in potentially dangerous situations.

I'll tell you what's scary for me. Change. Changing Sweetie's routine has always made me scared. Well, let's say, uneasy. Simple things - like putting her to bed unswaddled for the first time as an infant after weeks of successfully putting her down tightly wrapped up. Or changing how much milk she drinks in a day and when she drinks it. Will getting a little less milk earlier in the late afternoon mess up her system so that she wakes up earlier from hunger? Anyway - you get my drift. Change can be scary.

Now we're facing two of the biggest changes to Sweetie's routine. Potty training and moving her to her big girl bed loom straight ahead of us - and I am terrified. About how to execute the changes and about how she'll take to them.

I've talked about potty training here before. We're still not there yet and I don't know how to teach her, given my own personal experiences. She has successfully peed in the pot once, for which she was abundantly praised, but that seems to have been just a flukey "accident". But within the last couple weeks she has been talking more and more about when she's "tooting" in her diaper and she has even told us when she feels wet - both very good signs that she is approaching readiness. We also have her Dora panties, that she picked out herself, waiting for her in our bathroom. A prize for when she’s learned. We'll see how soon it is before she can wear them full time.

Then there's sleeping in her bed. I'm not afraid of her falling out, really, because we have a safety rail attached to the side. I'm just worried about how to keep her in bed. She also doesn't have a headboard yet, and until she gets one, I think the bed is off limits. Her bed rests along its side against one wall of her room, leaving the head of the bed open to the room. Without a headboard I feel she could easily scoot up to the top in her sleep and fall out that way - or simply use it as an easy escape any time she feels like it. It really scares me that we won't be able to ever convince her to stay in bed. I don't wear my braces at night and cannot help my husband chase after an escaping child all night long. I don't know how parents do it. Should we stay in the bed with her the first few times until she falls asleep? Should we lock her in her room so if she does get out she at least can't go any farther than that? If anyone out there has any suggestions, I'm very open to hearing anything you've got to say.

From Sweetie's fear of the twirling turtles, to my fear of an escaping child at night - it's all about loss of control. Big or little, we all like to feel in control of both ourselves and our surroundings. But growing up - and growing stronger as a person - means giving up some control. You've got to give yourself over to what's out there in this world to see how to manage yourself in new situations and where they can lead you - for good or bad.

I still don't think Sweetie has any cause to be scared of her Fisher Price barn, though. I think she's got that "situation" pretty much under control.

Just a quick update - I asked my husband this evening if he got a chance to read today's entry. We were talking a little bit about the turtle ride again when Sweetie piped up "I want to go on the turtles, Mommy!" So, it looks like she's over that fear, anyway. Thankfully, at her age, she's much quicker to get over certain things than older kids would be. I just wonder what she'll say the next time we visit that park...