THE FINAL COUNTDOWN...

With less than two weeks to go until the arrival of "Baby Tummy" (as Caroline continues to call her), we are in full-swing trying to get things as ready as we can. I head in for a scheduled c-section on the 18th, which is fast-approaching! It still seems a bit strange to me that we actually have anything left to do. When Caroline was born, we were ready to go weeks before she actually arrived - I think I had myself convinced that if everything was in place then we would totally know what we were doing once this little foreign creature moved into our home full-time.

This time, I feel like we know better - the confidence we have regarding how to actually keep this little person alive and thriving makes it seem just a bit less important to make sure that every throw pillow is in place in the glider and that every room decoration is arranged just so. Combine confidence with the fact that we have a toddler running about and you now know why the painter is just now scheduled to come paint the nursery on Friday - exactly 1 1/2 weeks before the baby will be born (if she decides not to make her presence known any earlier than that)! Oh well - it will all fall into place. Having Caroline taught me that...

From the perspective of my wheelchair, I think I've been pretty lucky with this pregnancy. With Caroline, she was arriving in the late summer, which meant I had to endure alot of heat and humidity in the weeks leading up to her birth. My body was incredibly swollen, which is common in pregnancy but particularly of issue for women who are in chairs. Limited mobility means limited ways to relieve the fluid retention. My ankles and legs were huge towards the end, and I was so swollen all over that I developed carpal tunnel syndrome in my hands and wrists and couldn't feel my fingers a good deal of the time. Not only was it really uncomfortable; it also began to affect my ability to use my hands - writing by hand became almost impossible (I even had to be incredibly tacky and type my thank-you notes for my baby shower), transferring into my chair was really painful, and taking my chair apart to put it into the car was harder and harder every day. The perk to all of this, however, was that when I finally delivered, I lost so much water weight right away that I was well on my way to my pre-pregnancy weight - gotta look at the bright side, right?!

My issues with swelling, and specifically the carpal tunnel syndrome, made me initially reluctant to even have a second baby. Thankfully, however, this journey has been different! While I was initially nervous to have a winter baby, the toll this pregnancy has taken on my body has been far less dramatic. I've had swelling recently in my legs and feet, but nothing that I haven't felt I couldn't handle. And to my relief, the carpal tunnel syndrome that I dreaded has been non-existent. I am so glad that things have gone differently this time around, especially with Caroline to keep up with. It's also really nice to feel like we know what we're doing - we've got alot of the little tricks figured out where a newborn is concerned. Now if anyone could hand me an owner's manual for my toddler, we will be all set!

MY NEW FAVORITE PARK...

Caroline and her good friend Madison catch a ride on a swing together!

Yesterday, we went to an awesome new park with a group of our little (and big) friends. It's not too far from where we live, in one of my friend's neighborhoods. The park is brand-new, with a fully wheelchair-accessible playground (complete with a rubberized surface!), swings for kids of all sizes and abilities, a picnic area, a Bank Shot basketball court where people in wheelchairs and on their feet can play together, tennis courts, and a dog park, as well as walking paths and open fields. It's truly a place where all people can go to have a fun day outside without feeling limited by any challenges they might face.

The coolest part is that it's dedicated to an amazing boy named Mattie Stepanek, whose life was sadly cut short by a rare form of muscular dystrophy. Though he didn't live to see adulthood, Mattie did more to make a positive mark on our world than most people who live to see eighty. Mattie spent his time here spreading a simple message of peace and friendship that only a child's eyes could see or voice could speak, much of which was compiled into several poetry books that he wrote. He inspired so many to live their lives to the fullest while focusing on what was most important, and although he was wise beyond his years, he had a way of sharing his message in a manner that all could understand.

When the park was dedicated this past Saturday, a statue of Mattie in his wheelchair - with his service dog standing at his side - was officially unveiled within a peace garden that's adjacent to the playground. The ceremony was attended by everyone from people in his family, to people who live in the area, to dignitaries and news crews, to Oprah Winfrey, who became a friend of Mattie's several years ago.

His mom, who also has muscular dystrophy, lives in a house across the street from the park. I couldn't stop myself from glancing over there from time to time when we visited the park yesterday, wondering what she thinks of having such an amazing place being named for her beloved son just outside her front door. Being a mother myself, I can only imagine that such a sight is all too bittersweet - a beautiful but painfully constant reminder that her child is no longer here with her.

When we arrived at the park and first went over to look at the statue, I got a bit teary-eyed myself - not because I knew Mattie personally, but because of the effect he has had on my own outlook on life by encouraging everyone to "always play after every storm." Caroline, meanwhile, just noticed that he looked like he was in "Mommy's wheelchair!" and wanted to pet his dog. Then we went off to play with our friends and take in the beautiful day, just as Mattie would have wanted all of us to do. How amazing is it that a simple day at the park could so easily be the most fitting tribute to such a special boy?

THE PINK TOTEBAG IS GETTING A LITTLE BIT "PINK"ER - AND AT JUST THE RIGHT TIME...

Caroline's future sister!!!

When we went for our "big" ultrasound this week, we got some really wonderful news! In addition to the baby looking healthy, with all its parts well formed and apparently in good working order (thank God!), we also found out that we will be adding another little girl to our family. Caroline will be getting a sister, which is something I have always dreamt of for her. I have 3 younger sisters myself, and there is truly nothing that can compare to that kind of bond. I know that if the baby had been a boy, I would have been so happy that things were as they should be (not to mention - Steve would have been thrilled to have a son and is feeling a bit outnumbered in our house these days). Caroline would have been a terrific big sister to her little brother, but I can't even put into words how I feel now that I know that she is getting a gift that I feel so blessed to be giving her - that of a sister.

This wonderful news couldn't have come at a better time for us. This time of year is bittersweet for me, as it has been for an unbelievable 19 years. While September is typically filled with the sights, sounds, and smells of impending Fall and all the newness and change that it brings, it also happens to be the month when I sustained my spinal cord injury. In particular, today - September 28 - is my anniversary. When I was 13, I had a spinal fusion for scoliosis. During surgery, a number of complications arose and a portion of my spinal cord was deprived of oxygen. When the doctors realized that the monitoring they had been doing to prevent just such an issue was not working properly, they removed the rods that had been placed along my spine, but the damage had been done, and I was paralyzed from roughly the belly button down.

Recovery from something like this takes a long time, but my yardstick for measuring mine hasn't ever really focused on the physical side of things. Sure, it's important to work to regain as much movement as you can to optimize your situation, and I spent a great deal of time in physical therapy over the years to heal. However, for me, the emotional journey that this experience has set out for me has been a far more difficult path to navigate at times. The anxiety and anticipation of all life's wonderful rights of passage, like dating, high school dances, starting college, getting married, or having a baby to name but a few, has always been compounded by the fact that I have this extra baggage in the form of four wheels.

It is a journey that I would not be able to face day in and day out without the support of my own sisters (along with the rest of my family and friends). This makes me value the future relationship that Caroline will have with hers so much. I know that when I was injured, they too were hurt and had to begin their own healing processes. I have the physical scars from my surgery and its aftermath, but the three of them also lost alot on the day I got hurt. They have always been there to help pick me up when I've fallen, both emotionally and physically. They help me turn limits into opportunities, and for that I am so grateful. I only hope that I return the favor to them in my own way. I am so lucky to have them, and I am a better person because of them.

My sisters and me

Like a really bad college roommate (not that I've ever had that!), my injury and I have reached an uneasy tolerance of each other while at the same time maintaining an extremely close proximity. We get in each other's way at times, and are constantly having to find ways to coexist. My chair and the limits it attempts to place on me are what I deal with every day, although I like to think that I push back hard to not let it stop me or my family from living our lives. I have to say that at this point in my life, I have reached an appreciation for the experience that I've been through, as it has helped me to learn things about myself that I don't think I ever would have learned otherwise. That isn't to say that I would even wish it on my worst enemy, but at the very least I can frame what happened to me in some sort of positive light.

Anyway, tonight, I just wanted to give a little shout-out to all the sisters (and future sisters) out there. They get us through some tough times, and for me especially, I had the opportunity on this anniversary to not spend too much time being sad about what happened so long ago, but instead focus on the future and all the hope and promise that it brings...

SOME COOL ADAPTATIONS TO SHARE!

I am a member of The Paralysis Resource Center, which is an online community that was started by the Christopher Reeve Foundation to help connect people facing paralysis to each other. I have met lots of great people there, and one in particular has become a pretty good long-distance friend - a woman named Cheryl. She and I have alot in common - we're both married, have one child, and want to do this whole parenting-from-a-chair thing in as uncomplicated a manner as possible. We connected before Cheryl got pregnant, as she was looking for someone who had some first-hand experience with having a spinal-cord injury and pregnancy. As I had just been through it, I jumped at the chance to help someone else who was facing a similar situation to mine!

Cheryl and her husband welcomed their first son a few weeks ago, and it's been really nice to have someone to compare notes with! Her husband made some pretty interesting adaptations to some of their nursery gear that I thought I would pass on. The crib, in particular, is pretty clever, and goes to show that a little ingenuity can go a long way! Here's what she sent to me:

Here's what their Pali "West Point" crib

looks like when closed (notice the latches?)

Here's what it looks like when it's opened up so that Cheryl can reach in

Here's their Stokke changing table,

which they adapted by removing a lower shelf

so that Cheryl can roll her wheelchair underneath

Sometime, when I get my pictures organized, I will post about some of the solutions we came up with, as we did things a bit differently than Cheryl and Mathew did. Either way, it's nice to have options, as well as a connection to someone else who may encounter similar obstacles and come up with creative solutions. That way, no one is having to reinvent the wheel!

KEEPING UP WITH THE JONESES... ER, CAROLINE...

Ah, those were the days. Caroline coming home from the hospital,

contained and content. I was using our Flying Falcon infant car seat carrier strap

to keep her car seat on my lap - it was a great find and worth every penny!

Sigh. I don't love Winter. Cold weather just makes me want to hibernate. The Groundhog saw his shadow last week, which means that we're stuck with 6 more weeks of this. At our house we've been stuck doing indoor activities for the better part of 3 months now, and it's starting to wear thin. Caroline's bored, and I am bored. We've been able to get out onto our deck when it's sunny, and Steve's occasionally gotten her out to the park or on walks, but for the most part, we're stuck in this little Winter rut.

As you probably know from your own experience, boredom can lead a person to do things they wouldn't ordinarily think of doing - say, take all the aluminum cans out of the trash, or stand on the sofa. My daughter's new fascinations with our recycling bin and climbing are beginning to drive me crazy, and show no signs of waning anytime soon. On the one hand, I'm excited to see that she's doing things that a normal toddler would do - while on the other hand, it would be nice if it would just get old to her and she'd move on to something else. I am thoroughly convinced that if she was distracted by something better, like the sound of birds outside, she wouldn't have discovered that she was capable of dragging our trash cans out into the living room or scaling the walls, but now that she's got these down to a science, I'm having to choose my battles (and keep the Wet Ones on hand...). In short, I find a good deal of what she does these days both hilarious and infuriating all at the same time.

When Caroline is told "no," she doesn't take to it kindly. What 18-month-old would? Not that this stops us from setting limits with her, but it can sometimes be incredibly exhausting to deal with, especially when we aren't out and about as much because of the cold. I'm reading The Happiest Toddler on the Block, by Dr. Harvey Karp, to see if I can get some pointers. I'll post another time on how it goes - some of his tips seem to be helping. I have to say that this is one place where my wheelchair is currently a bit of an obstacle for me - the fact that she throws a fit like any 18-month-old is not the issue as much as I sometimes just don't feel like fighting the battle in public, and also have come to rely on the fact that in our small house, she'll eventually run out of places to go and I will catch her whenever she runs away. Occasionally, even though there's something to do, we just skip it because I just don't have it in me to worry about the "what if's" in terms of how I'll manage her while out and about. Am I a bad mom for that? I hope not...

Here we are on St. Patrick's Day 2007,

at a local Irish bar. Yes, she was a baby...in a bar, but

no worries - it was daylight and there were, like, 10

other kids there! The Bjorn worked so well back in the day...

Caroline's outgrown her Baby Bjorn, which used to keep her on my lap and relatively constrained while we were running a quick errand or two. I found a new brand of carrier, called the M1 by Lascal, which has a higher weight limit. I'll probably invest in it for the next baby, but it seems silly to pick one up now. Her Bugaboo Chameleon stroller - which was another great investment that we made in that I could push it easily and Steve had not trouble either - is getting a bit heavier to push so I don't take it out every time we have to pop into a store. I'm currently on the hunt for a lightweight one that maneuvers as well as our big stroller, and will keep everyone up to date on what I find that works. I'm also now in the process of thinking of our next step - we're not quite at the baby harness (although I think we'll be heading there soon and I've picked a couple up to test out and see), but I need something to keep her from climbing off of my lap the moment we stop moving. I'll be keeping everyone posted about this, especially if I find something that works for us, so that any other parents with disabilities can try it too!

It's not that Caroline isn't generally a really happy, curious kid. In fact, I know that if she weren't happy and curious, she wouldn't care so much about exploring what's around her rather than stick close to her mom. And truthfully, in the long run, I would much rather have raised an independent, inquisitive girl than someone who's a timid follower of the crowds who has no opinion of her own. I want her to take risks - albeit calculated; to wonder; to ask questions. I know the way she is behaving right now means that she will do all these things, and that makes facing the occasional bad day much easier. We are working with the end in mind here.

I know that other "non-wheelchair" moms would commiserate with me on this subject - nothing is more mortifying than having to wage a wrestling match with a grumpy little kid in the middle of the grocery store, which makes me feel better that I'm not alone in feeling the way I do. I just wish sometimes that I could conduct said wrestling match more quickly, more capably, and know that I could win it every time, and because of the chair, I don't have that confidence right now.

When I was pregnant, and even before that, I had myself convinced that managing a newborn while using a wheelchair would be the hardest thing we would face. Luckily, that turned out to be enough of a breeze that I'm convinced I could do it again - no problem. I don't know what I was so worried about! It's this second year that's been much more challenging - you have this little person who you've helped to reach all these fabulous milestones, and now all she wants to do is practice them on her own terms. Too big to hold on to, and too little to reason with. Nothing is more exciting or terrifying to a new-ish mom, at least from my perspective.

Anyways, I think I am ready for Spring. Warm weather always gives me perspective and a fresh outlook on life. Plus, Caroline will be a little older and if I'm lucky, a little more cooperative... I'll be keeping my fingers crossed for all of you moms out there who are in the same boat as I am! We'll keep you posted...

A REALLY COOL BOOK LIST...

Today, I was visiting this website called Disaboom, which is a site I check out occasionally to see what's new in the disability culture. I came across a really great kids' book list that I wanted to pass along. It's comprised of a large variety of books about people with disabilities, from wheelchair-users to people who are blind or deaf, as well as people with developmental disabilities like Downs syndrome. The books are sorted into age-appropriate categories, which is so convenient. Some of our family favorites are Mama Zooms by Jane Cowen-Fletcher, that my Aunt Karen gave us and is about a mom who's in a wheelchair, and A Very Special Critter by Mercer Meyer, which one of my sisters gave me a long time ago. There are some other fabulous books on the list that I've read with Caroline or in my classroom with my students when I was teaching elementary school. If you're looking to change up the whole bedtime-story rotation, be sure to check these out - they are great for ALL kids!