SOOOOOO Bad

Today's entry title applies to several things - my "darling" Sweetie, my attitude, my day. And it all started some time in the middle of last week when I caught my husband's stomach virus. For him it lasted four or five days, for me only two. Or so I thought. Now it seems that for both of us it's morphed into some gland-swelling-muscle-aching disease. But Sweetie? She's okay. We think. That's part of the problem. She woke up whining/crying at 6:15am, which escalated quickly into full out whaling and screaming for the following hour. Her apparent problem? She desperately needed a "napkin". Then she didn't. Then she did. And so on. We told her if she stopped crying then she wouldn't need a napkin to wipe her face. To be honest I don't know what finally happened in that little brain of hers to make her suddening want to play blocks - and all was right with the world. I was just happy it was over.

Next issue - I made plans to meet a friend for coffee this AM at a nearby shop. But after Sweetie's early wake up call and awful cries, getting myself pulled together to get out of the house seemed like the last thing I wanted to do. But my husband said I should go, it would do me some good. I went. My friend didn't show up. Looking back I realize where the chain of communication broke down - she emailed me about going, I emailed "sure", she emailed a suggested time and I emailed "sure". That's it. I didn't get a final email from her saying she got my time approval note. And who actually picks up the phone anymore to communicate? How barbaric! I came home and even now in late afternoon I still haven't contacted her about where our plans went wrong. But neither has she. My excuse is the lousy way the rest of my day has played out.

(Oh yeah - I forgot. Before I left we were dealing with getting Sweetie to eat breakfast. Our biggest parenting "flaw", I think, is not eating in the dining room but rather sitting around the T.V. This is not working for Sweetie anymore, though, because she mostly ends up refusing to eat and instead wants to play. So we've started with her regularly eating in the high chair at the table. Before I left this A.M. she had maybe 5 bites of pancake and claimed she was done. My husband thankfully got her to eat a small bowl of strawberries while I was away. Later, for lunch, she had strawberries dipped in vanilla yogurt. That's all. Big whooped-de-do. She needs to eat more).

Back to this morning... I got home and my husband and I decided we'd drive down to B&N to return a book I just bought. He went to get ready while I stayed with Sweetie, pushing her along to get ready as well. Since our living room looked like about five small tornadoes had hit down to do their damage, I had just one request of my daughter - clean up your blocks. Too often we just leave the house as-is and come back to the toys all over the place. She needs to learn to take care of her stuff. But she refused. But she did want to go to the train store (B&N - they have a train station toy set up in the kid's section). My husband and I stood firm - no train store unless the blocks were picked up. I told her I'd help her. No. I told her she only needed to pick up the green ones. No. But we held our ground. About 20 -30 minutes later she changed her tune and happily picked up all the blocks. Again, I don't know what goes on in that little head of hers.

This excursion went well enough. She played nicely with the other children gathered around the train. She didn't resist too forcefully when we picked her up to go home. But getting her physically in the car was a fight between my husband and her. Then, once we got going, she whined that she wanted to go to the O store (Target - named for its bull’s eye logo). We tried to humor her by asking her why she needed to go there. She said "get cookies at O store". Now, we have bought cookies there maybe once ever. So more likely she's remembering things that my mom has bought for her on one of their many trips there together. But we said no. She cried - screamed - practically the whole 30-minute trip home. When we were just a few minutes from home she stopped. I looked back at her and found her just vegging. Her eyes were dazed over. She just looked "done". It dawned on me then that maybe she was behaving this way because she was sick. So far she had not succumbed to the crud that my husband and I have, so it stood to reason that it was now catching up to her. So I felt bad for being totally annoyed with her behavior. Then we got home.

It was time for her to have lunch, but she wanted to play a little. She did, then requested lunch. REQUESTED, mind you. But would she get into her high chair? Not without some drama, of course. Then she had that huge lunch of strawberries and yogurt. She didn't want the crackers I gave her or anything else I suggested. At least it was a pretty good serving of strawberries. Then off to nappy time.

She dutifully said night-night to Daddy as she climbed the stairs to her room with me. But at the top of the stairs, just as she did at yesterday's nap time, she turned the quick right into our bedroom instead of going all the way down the hall to her own. Yesterday my husband had to get her out of our bed for me and carry her to her crib. Today I actually got her to go to her room on her own, but she climbed into her big girl bed instead of letting me put her in her crib. She can't sleep in the bed yet. Make that, I know she WON"T sleep in the bed. She has to be in the crib for now. But I can't carry her, so I had to wait 'til she got out and neared the crib. Which she really never did. So after some time my husband came to help me out. I'm sure he heard her footsteps scampering about and my wild woman screams at her. Anyway, as soon as he entered the room I left in total frustration, and he plopped her in the crib and left too. She cried for about 1 minute, talked to her animals another 5 or so, then slept for more than 2 hours. I slept for most of that time too. She and I had both absolutely had it with each other.

Now everybody's up again, I feel better, and Sweetie is still somewhat clingy/whiney but mostly fine. Hopefully we'll all have a nice, relaxing and fun evening.

Updates Galore!

I have some exciting updates to talk about today! So step right up and find out all that's new and improved - with this site and in my life.

I'll start with some of the tangible differences here at my blog site. First of all, you'll notice on my sidebar that I've added a picture of the teal spina bifida awareness wristband (a la Lance Armstrong "Live Strong" bands). The SB awareness wristband is adjustable, fitting kids and adults alike, and is 100% latex free. Right under the picture is a new link to the updated order form page for the wristbands. They're only $1.00 each and they're for a terrific cause, so click on the link and order yours today!

Something that you might find missing from my site is the "Blogging Mommies" webring link. It's been awhile since (I thought) I successfully signed up to be a part of that webring. But the link still doesn't work, even after I tried to contact the organization again. So I've decided to just get rid of it. There, that was easy.

Where one door of opportunity closes (the webring), I'm pleased to announce a couple more doors opening for me! The first of which is that the weblog "Dot Moms: Writing Our Momoirs" has added my site to their list of "Moms Who Blog". Dot Moms is a weblog of moms who write from the many different perspectives that being a mom envelops. They are a group of fantastic writers whose collective tone is very light-hearted and friendly. Hundreds of people reach the Dot Moms site every day, often becoming regular readers catching up on the lives of the new mom friends they've made. I wrote to the founder of the site about a month ago, telling her about my site and asking if she could link my page as one of her many "Moms Who Blog". She wrote back that she has seen and enjoys my blog and would be happy to list me. You'll find my link, Spina Bifida Moms, listed alphabetically in her long list of other Moms Who Blog on the left sidebar of her site. While you're there, please check out as many other mom blogs as you can - the many that I've read are really well written by intelligent, funny women trying to get through each day's little catastrophes and triumphs that motherhood so readily guarantees. Enjoy!

Another fantastic opportunity that I don't think I've mentioned yet is that the webzine "Audacity Magazine: The Disabled Magazine for the Able Minded", is about to publish my first in a series of articles I'll be writing for them about my experiences as a disabled parent. I will be writing for them monthly, starting with their soon to be published August, 2005 issue. In addition to my articles, the kind folks at Audacity have added to their already extensive list of on-line forums a special section just for disabled parents. This forum, called the Parenting Corner, is a place where disabled parents can go on-line to talk with others and "share stories, tips and advice about how to raise a happy child in this happy world." I'm so excited to see this chat area established and I hope that my many readers will click on over to Audacity to check it out for themselves. To start chatting all you have to do is click on the above link, sign up and start talking. It's that easy! See you there!

Well, lets see... new wristband link, no more blogging mommies, addition of Dot Moms, and the Audacity Magazine opportunities. That might just about cover it. I guess my last thing to add is to ask you, my faithful readers, for more shared input. I've gotten so many wonderful emails from women with SB asking me questions, and I absolutely love hearing from you! Please, keep those emails coming and don't be afraid to ask me anything you'd like. That being said, I'd also like to encourage my readers to post their comments and questions right here on my site. That way other women with similar questions and/or concerns can see that they are not alone and can even share their own ideas on what to do. If we all combine our knowledge and experiences together, we can help each other get through our questions much more successfully. This is one instance where I feel there can never be "too many cooks in the kitchen". So if you're not shy about your question or comment, please, post it right here, on my very own Message Board. Just click on this link or on the pen icon underneath my name in the sidebar and post away! I'm excited to get my Message Board moving - get the dialogue started today!

So, that's all the great news from here! I hope everyone enjoys their stay here at my site and has fun bopping around to all the great links I have to offer. Until next time....

Our Fairy Princess Sweetie

Hi again. I thought I'd post a quick little thing about something my husband, Sweetie and I did this weekend with some friends. We took Sweetie to The Fairy Tale Festival, an annual event held at a local park every summer. Fairies and wizards, elves and gremlins, woodland insects and creatures of all kinds come out to celebrate summer with all its splendor. My husband and I were privileged enough to participate in the first few years of the festival, dressing up as a fairy and elf, blowing bubbles for all the children to chase after. My husband would make up elaborate stories for the kids about the magic of bubbles and how the magic spreads when the bubbles pop. We loved seeing the wonder in the childrens' eyes, eager to soak up all the fairy dust and magic around them.

Once we had Sweetie we decided to hang up our fairy wings and elf shoes in favor of cameras and sun visors - excited to go simply as the parents of an awe-struck little girl. Still, Sweetie has been too young to appreciate the festival until this year. We dressed her up in her prettiest pink party dress, summer sandals and feather-trimmed fairy wings and magic wand. With her blonde, curly hair and bright blue eyes, she was the picture of cherubic innocence and sprightly spirit. So cute, in my personal opinion, that I've finally decided to include her picture along with this post.

Yes, she was adorable, her friend was beautiful, and the two girls had a wonderful time together in Fairy Land. They blew bubbles, made bracelets (with the help of the daddies), played drums, ate ice cream, and danced on the grass in time with the Irish dancing act up on the stage. They both even got a brand new storybook of their choosing, just for coming out to the Festival! Yes, a fun time was had by all (even though it was an incredibly stinkin' hot day) and our little fairy princess can't wait until next year. Neither can I.

New Friends, Same Ol' Situation

This past week I've found and joined into a chat board for Adult Women with spina bifida. I was so thrilled to find it - where were they 3 years ago when I was pregnant and looking for answers? Actually, they were right there all along, but none of my keyword searches got me to their group. At any rate, I'm happy to have found them now, at the Yahoo home page under "Boards" . They seem like a really great group of intelligent women and they have happily welcomed me into their discussions. I even joined in on a live chat with them last Wednesday. It was quite the experience - very fast moving! My husband had to stand over my shoulder for a little while to read what was going on and who was directing what questions to whom so I knew who I should be talking to at any particular point. He even got frustrated with me at a couple points and offered to take over for me - I'd just dictate to him what I wanted to say. But I kept on myself (as this board is for SB women, and he really shouldn't be involved at all) and had a lot of fun. I'm sure I'll get more used to the pace and set-up the more I participate.

Anyway, I've met a few ladies in particular through this board who've written to me about their situations and who have expressed kind words to me about my blog (which I of course told the group about in my introductory message to them). These are women with spina bifida who are currently pregnant and looking for answers to their questions. Even though it's been 3 years since my own pregnancy, it's frustrating to learn from them that there still is not a lot of information available regarding being a parent with spina bifida. These wonderful, interesting women are searching for answers to questions that I myself had a few years back. Will they have to be in wheelchairs full time by the third trimester? Can they deliver vaginally or will they need to have C-sections? How will they handle day-to-day care of an infant when they themselves aren't steady on their feet in the first place?

I'm not at all saying the women who have contacted me, or myself, went into pregnancy blindly, figuring "Oh well, we'll get through this somehow." I'm sure they discussed with their partners and thought about this decision to have children just as much as they were able to before going ahead with their choice. But still, they now want to research as much as possible about what other women like themselves have been through and how they've handled parenthood. And they want to make absolute sure that their doctors are helping, to the best of their abilities, to prepare them for their babys' arrivals.

I see all the work these women are putting into learning about what life is about to hold for them and their new families as very honorable efforts. It is an incredibly self-less, respectable act on behalf of the unborn children to want to make sure you are comfortable providing the best life possible for your child, no matter your own disabilities and/or shortcomings. What a wonderfully loving thing to do.

I'm so proud to be here for these women. I may not be an "official", medically recognized reference for parents with spina bifida, but I am a parent with spina bifida. I also know that there are many diffent levels of SB, all requiring different consideration for various situations. But for my particular situation, I am successful. My daughter is a healthy, happy, intelligent and loving little girl. These are all things that I am able to instill in her regardless of my physical abilities, or lack there of. With the help of my able-bodied husband, and our close-knit group of family and friends, I am successful with my own parenting skills. Just like I know my new friends will be with theirs. Thanks for contacting me, please feel free to post occasional comments for others to learn from/advise upon - and do stay in touch.

Birth Week (Part I)

Not only were the circumstances of Sweetie's birth interesting, but the whole week leading up to it was full of "fun and excitement" as well.

On Monday, December 16th, 2002, I set off to work a little later than my husband. At that point I was working half days on Monday, so I got to sleep in a little before heading out the door. On this day, however, I was also heading out into a New England winter snow storm - complete with heavy snow and icy conditions. I wasn't 2 minutes from my house before I noticed how unsteady my driving was, accompanied by terribly loud noises coming from beneath. I called my husband on my cell to tell him what was going on. He said just take it easy, drive slow, and call him back if I needed to. If I could make it to the car dealership, have them check things out for me there, he said. But about 3 minutes later, as I turned onto the busier by-pass, I realized there was no way I was making it anywhere, let alone to the dealership. The noises were louder and the clunkiness became more serious in nature. I did the only thing I could - pulled over to the side of the road and reported back to my husband that I was stuck. I told him exactly where I was so that he could leave work to come get me. Meanwhile, I phoned our car care plan so that a tow truck could come to my rescue. As I spoke with the operator, a gentleman with a cell phone pulled up behind me to see if I needed to use his phone. It was only at this point (as I hadn't set foot out of my car yet) that I found out I had a flat tire. Now able to tell the car care operator exactly what I was dealing with, she asked me if I knew how to change a tire. "No", I laughed, "And I'm 8 1/2 month pregnant, I'm stuck in a snow storm on a busy road, and I'm disabled. I'm not getting out of this car." So I sat. And waited. My husband showed up first, about 45 minutes later, and the tow truck arrived within the next 15 minutes after that. Our car was hooked up and driven to our dealership and the tow truck driver chauffeured us along with it. Eventually, after waiting for a new tire to be put on the car, we made our way back to work. That was Monday.

On Tuesday I had what was to be my first of the weekly OB/GYN appointments women have during their last month of pregnancy. A seemingly routine exam for most women, but what do I find out from my doctor? That I'm already 2 centimeters dilated and that all other signs point to symptoms of pre-eclampsia. My urine tests concluded that my kidneys weren't functioning properly, my legs and feet were swollen more than they should have been and I told her that I sometimes saw lightening bug type visions at different points in a day. So, I was put on bed rest. Instead of leaving my appointment to go back to work, I left my appointment with a doctor's note in hand to give to work - I was to go home and stay there, at least until Friday when I would have more tests done. I asked my doctor what I should do about my appointment the next day up in Lebanon, NH. It was to be my first time visiting the facility and the doctors who would assist with my delivery. Could I still go to that? Yes, she said, that was fine. Go, and she will forward her notes up to them to let them know exactly what I was dealing with. That was Tuesday.

Wednesday arrived and my husband, taking the afternoon off from work, went with me on the 2 hour trek up to Lebanon. I had spent the morning back at my local doctor's office, involved in a stress test to check out how Sweetie was fairing. She tested out just fine, but I suspected that things were going to start "happening" for me, nonetheless. I took my hospital bag along with us to the hospital, complete with the tiniest of all the baby outfits I had received at my various baby showers. At the very least, I knew that I was going to ask the doctors about scheduling an induction, as I didn't know how my body was going to react during labor and/or if I'd even feel the start of labor. I didn't want to be 2 hours away from the hospital when I finally realized that the baby was coming NOW! Anyway, we arrived at the hospital and I met the kind doctors and nurses who specialize in high-risk pregnancies, and saw the maternity ward where I would deliver. Because they had already received the notes from my local doctor, they sent me for more urine tests and spoke to me more about what I was experiencing with my vision, swollen feet, and general health. The end result - they decided to keep me "for a few hours", just for observation, to see if/how I progressed. Mind you, it was about 7pm when they told us I was staying. The doctors checked to see if I was further dilated (I think I was to 3 centimeters by this point), and they did an ultrasound to check on the condition of the baby. Even if I was stable, we knew there was no way they'd kick us out during the overnight hours. We were there to stay. That was Wednesday.

I awoke early Thursday morning to a new team of doctors and nurses introducing themselves to me. They had reviewed my case and decided that, for the safety of the baby, I was not leaving this hospital without her in my arms. The plan was to get my epidural going by late morning (something I had learned I could have just the day before - I always assumed I couldn't because of the location of my spinal opening. No problem, they said, we'll just do it higher on your back). By mid afternoon they'd break my water, then wait an hour or so to see if I progressed naturally. If I didn't, they'd start feeding Pitocin into my veins to finally get the action going. However, as is typically the case, things didn't go exactly as planned. The ward became super busy as a woman with triplets went into labor, sending nearly every doctor on staff into high gear. With all this going on, I was surprised that their schedule for me veered off course by only a couple hours or so. But their hope of my labor starting naturally after my water was broken didn't come to pass. It was maybe 5pm or so that I was finally started on the Pitocin.

Meanwhile, both my parents and in-laws had been on the scene since about mid-day. When we called to tell them I was going to be induced, all four of them left their respective jobs so they could head on up to be with us for the joyous occasion of their granddaughter's birth. Unfortunately, labor was progressing so slow for me that I remained at 5 centimeters dilated for all of the afternoon and into the night. We finally sent them all home around 11pm with the promise that we'd call as soon as Sweetie arrived. This pretty much marked the end of Thursday for us - almost the end of this active week and its last several, intense hours.

Birth Week (Part II)

...We arrive at Friday - Sweetie's birthday! My husband and I secretly hoped that sending our parents home would some how bring on the end of this birthing process so that Sweetie could finally make her first appearance into the world. What I had been experiencing for labor so far was, at first, incredible itchiness like I had never known before. This was from the Magnesium Sulfate they injected my with to stave off seizures. I've had one seizure in my life, about one month before my wedding, and therefore I now take seizure medication everyday. The Magnesium Sulfate acts as a seizure deterrent, so it was something I needed to be on for the stresses of labor and delivery. Boy howdy, it does make you itchy, though! And then sleepy - really sleepy. Not only sleepy, but loss-of-ability-to-move-your-body sleepy. For the several hours leading up to Sweetie's birth, I actually slept on and off during the labor. Labor pains never really felt like anything worse than severe menstrual cramps to me. At the very end, finally a full 10 centimeters dilated, I pushed literally only 3 times, for a duration of a half hour, before she was born at 12:50 am Friday morning, December 20th. Weighing in at 5 1/5 lbs, she was completely healthy and safe.

Because of the effects of the Magnesium on my body, by Friday morning I was not able to move my legs at all and my arms were getting weaker by the hour. I very laboriously (pun intended) fed myself my own breakfast that day, but by evening my dad had to feed me dinner because I absolutely could not move. The doctors said I had to be on the Magnesium a full 24 hours after the birth, but by Friday evening when the night shift nurse who helped me during the labor came in to check on me, she could see what a changed condition I was in. Thankfully, she saw to it that I was taken off the Magnesium as soon as possible. It only ended up being a couple hours sooner than what it should have been, but as soon as I was off of it I saw my mobility and awareness increase exponentially hour by hour. I kept waking up as I slept Friday night, and every time I did I was able to feel and move a part of my body that was higher up than the previous time. By Saturday morning I was able to get out of bed and walk myself to the bathroom, although very, very carefully.

Also because of the Magnesium, Friday, my first day with my brand new daughter, is totally a blur to me. I could only see her through hazy eyes, similar to the effect of major intoxication. I was so incredible sleepy that visiting with me was absolutely pointless. Pictures taken of me on that day show a pathetic, drugged-out shell of myself. It really wasn't until Saturday, December 21st that I got my first good look at my sweet, beautiful daughter.

We stayed the weekend at the hospital and were released on Monday, December 23rd - Christmas Eve eve. I was fine to go home before this, but, because Sweetie was so small to begin with, she needed to show signs that she was nursing successfully and gaining weight. Once that was achieved, we went home to start our lives together as a happy, healthy family. Our very eventful week had finally ended with the introduction of our new love, ready to face the big world outside to see what this life has in store for her.

Wanted: Other SB moms & families

Hi everyone! I hope it's a beautiful July 4th Weekend wherever you are. Here in New England we are finally having the beautiful, not-too-hot/not-too-cold summer weather we love.

I want to take today to say hi to all my new readers who find their way to me everyday, and to thank all my regular readers for continually coming back to see what I've been up to with my daughter and husband. I'm having so much fun writng every week for you and am so pleased to get the occasional email and/or comment from other SB moms and supporters out there. It's great to know I am reaching other women with similar questions, concerns and interests. Thanks to everybody for the encouraging words and inspiring messages!

On that note, my regular readers will notice that the look of my site has changed a lot since last week. My graphic designer husband has been like a man obsessed, often working late into the night to adjust my blog's look to the way I want it. He's also helping me make the site more user-friendly and interesting for all. For instance, he's made drop-down lists for several categories of interest, including resources of relevance and blogs I like. I've also found a SB chapter in PA that is selling Spina Bifida Awareness Bracelets (similar to the Lance Armstrong "Live Strong" bracelets), and I've provided that link here as well. Lastly, I have a link for the "Blogging Mommies" webring, although it's not working quite yet. I guess they still haven't approved my site for inclusion on their ring. Soon, I hope.

In order to link the best information available, I'd love to ask you all a big favor. If you or someone you know is an adult and/or parent with spina bifida, and you have a blog or other SB related website you'd like me to include on my listing, please email me to give me the information. Likewise if you are the parent of an SB child, please give me the link to your special page and I'll be happy to include it on my drop-down list.

Like I said, I'm so happy to be hearing from my readers. I'd love to provide you all with as many useful and interesting resources as possible to help guide you on your journeys into parenthood. Please help me out by allowing me to link your SB site(s) to mine. Together we can provide some great information!

Well, thank you all, very much. I look forward to hearing from you. Right now I've got to wrap things up so my husband and I can get ready to take Sweetie to her very first movie theater movie - "Madagascar"! Hopefully she'll be interested enough to last through the whole thing. Wish us luck!