Girl-tastic Magic Kingdom Day! (Part 1)

My recent Animal Kingdom and Epcot trips were a bonus. I had only intended to take a one day girls' trip with Riley and my sister. Riley and I watched Tangled the night before. Roo knew the trip was soon, but I didn't tell her it was the next day because I wanted her to get a good night's sleep. After she went to bed Mike and I watched Congo. It ended up being a bad call because I woke up in the middle of the night screaming about a jungle spider on the curtains. The day finally arrived, a sunny (for the most part) Wednesday. I was so excited for this trip. I sprang out of bed with the alarm.

I happily put on my Aurora inspired outfit and went to wake up Miss Roo. She was confused about why I was waking her up when it was still dark out, but I asked if she'd like to...you know...maybe...visit the Magic Kingdom today?? She sleepily donned her Rapunzel inspired outfit. Isn't she the cutest tiny Rapunzel ever?!?

We had quite a few bumps before getting on the road, not the least of which was a severely flat tire on the wheelchair. Not, "This one needs a little air" flat, like "the tube inside is broken so every time I fill it it goes flat in minutes" flat. Mike suggested waiting until a bike shop was open and getting it fixed but it was already getting late. I told him to throw the chair and my hand pump in the back and we'd deal with it. The way I saw it, we could either rent a chair when we got there or navigate the park with a flat all day.

A whole bunch of other small irritating issues happened and then we got on the road for real. It was a lovely drive we played eye spy and instead of "I spy with my little eye" Roo kept saying "I spy with my yellow eye..." It was incredibly adorable. She played the way all 4yrs do, by deciding based on your guesses what they intended rather than a head of time. It was thoroughly entertaining.

When I saw that sign, I almost wet myself literally and figuratively because I had a huge latte and We MADE IT!!! We arrived just after 10am. Jessie was kind enough to switch lanes so I could get a clear shot. Yay girls day!

We took a ferry ride with a view of Cinderella's digs. Off the boat we were rushing on a flat tire (we decided not to waste valuable Disney time getting a rental) to Frontier Land for our first fast pass, Big Thunder Mountain Railroad! My very favorite Disney ride. This was beyond special because this was the first time my now 40in little princess was going to ride it with me! It fills my heart to bursting remembering how nervous she was waiting to get on and how full of glee she was when it was over. After that Disney milestone it was time to meet the fairies!

My house is well versed in the residents of Pixie Hollow, but Jessie learned their names as we inched through the line. Then we all shrunk to fairy size and took in the Magical Nook for the very first time...So, adorable. There was Rosetta (Roo's second favorite fairy! She's a hardcore Periwinkle lover.) Jessie (just as Rosetta sashayed over) said "Oh, is it Fawn?" Uh-oh. To which Rosetta replied "Do I Look like an animal fairy?!? I don't think so, Honey." I almost died. Bonus points to the Photo Pass Photographer for catching the moment on film. The second picture is when they were discussing when Rosetta had animal fairy talent in Pirate Fairy and all the bugs climbed on her and was like "ew, ew, ew!"

After some fairy hugs which transferred some pixie dust to Roo's absolute delight it was time to check in with Peter Pan's bestie.

Disney milestone-check! Meet the fiaries for the first time-check! What's next? Why a journey under the sea with Ariel of course! Yay, girls' day!! After the Ariel ride and a quick potty stop it was time for our second fast pass: Enchanted Tales with Belle! I'd never done this one before since we were with the boys over the summer and they were NOT interested in the least. You get to put on a play for Belle. You surprise her by re-enacting how she and Beast met!

Riley got to play Mrs. Potts! She did awesome, of course! I did my conservatory training/theater degree proud making galloping horse noises and wind sound effects. Seriously it was so fun! You have to do it at least once. We all enjoyed ourselves and Belle thanked Riley with a special book mark. It says "You'll always be part of my favorite story. Belle" So cute!

Coming up: Princesses, World Travels, Mermaids, Aliens and A Mad Tea Party!

Drip, Drip, Drop Little April Showers

Let's talk in-climate weather logistics. Honestly, since I rarely used a mobility device unless I was post surgery growing up, I guess it wasn't an issue. The first time I remember rain being an issue was in college when I was suddenly had to traverse a vast, hilly campus on wheels. Obviously, holding an umbrella was not an option while pushing my wheelchair up hills slick with rain so mostly I'd bundle up in my winter coat with my hood up.

Later, I suffered the standard how-do-I-get-the-baby-and-groceries-inside-the-house conundrum. I wasn't still using mobility devices on a regular basis. I just wished I had more hands (don't we all). When I had to carry a baby and an umbrella I was ok, but getting her and I into the car dry was always tricky. I started arranging the umbrella between the door and car roof so I had both hands free to get her situated. It meant a dry baby and mostly dry mommy. Usually, I'd get rain trickling down my back a bit before I could get in.

I'm not complaining. I don't mind being a little damp. I just wanted to give you a frame of reference. Now several years after the baby and a few major surgeries later I'm on crutches outside the house. Aside from not easily being able to manage an umbrella there's the crutches on a wet surface issue. I can't count the number of times I've had my crutches go out from under me in opposite directions on wet ladies room floor, or on a puddle-ly sidewalk. A crutch on water is like stepping on a banana peel. I've never (knock on wood) been injured seriously, but it always scares me to pieces. One-a these days Alice, broken hip!

The other issue is that anyone with bad joints or any inclination towards inflammation isn't a fan of what rain does to their body. It never used to bother me much, but I grew up and got hit by a bus. Ever since the bus, rains hurts. It doesn't always take me out of circulation, but I always feel it to some degree.

These days, I ditch one of my crutches if I can because lopsided-ness is worth umbrella coverage. I really don't care about getting wet at all, except that it makes the joint pain worse. Wet equals cold, cold equals muscle tension. I try to keep my joints warm and keep my physical activity mid-level to minimum. I take fish oil twice a day to help my joints and minimize the need for anti-inflammatories. I try to get in for regular messages and stretch often, but it doesn't always work. Best case scenario is obviously to stay in, but let's get real kids have to get to school and errands must be run even on a rainy day. I keep an eye out for puddles so I don't slip, but things happen. Mostly, I try not to be too rough on myself if the rain throws a wrench in my to do list. Luckily, I know a little girl with pink kitty rain boots who's usually up for cuddle when the rain wins.

Thanks, Mom

Today I woke up to a mysteriously injured hip. The old rage, at everything unfair, was inflamed as my hip joint. I had rested after a long week of birthday fun. I rested more than I normally would and still I woke up in agony. Granted, I ran around quite a bit this week and then took the kids to a theme park over the weekend (in celebration of Isaac getting into his first choice magnet middle school), but 48 full hours later the pain was all in one joint. Do you know what it's like when your "good hip" hurts? Oye. Unfortunately, I have to severely limit my use of over the counter anti-inflammatory medicine so as not to upset another medical issue. It made for a long weepy morning and I am no wuss.

I ran around and wore myself out, than ran around with the kids (in the wheelchair) and I rested almost a full 12hrs prior to today. I was fine for a a whole day. The day it didn't matter. The day it was up to me what I got done. Now, the day after that one I get out of bed unable to bear weight on my right leg at all. Minimum doses of anti-inflammatory later, no change. I was frustrated and scared. What if I had really done it? What if my I'd blown out my good hip? It was too terrible to consider.

I confessed the gravity of the situation to Mike, but I wasn't about to give up on my day. Especially, after I gave my ungrateful punk of a body yesterday "off." No dice. I had plans to volunteer at an event at Riley's school. The hip pain would NOT win. It was the same situation I've been through a million times except I wasn't just tired or just in pain I couldn't step down on my good hip. Again, how is this at all fair? I over did it, then rested, then over did it and then rested. How can it hurt this much? Why today?

I babied it earlier in the day. By the time I had to head out I discovered wearing my braces and shoes helped a bit. I sucked it up, and hobbled to Riley's school with more weight on my crutches than either leg. I don't think anyone noticed my wincing or perspiration given all the hustle and bustle. I was able to slide into a tiny chair and craft my way to distraction. It was school-wide hub bub so there was a lot to take my mind off the evil presence in my joint. Nobody seemed the wiser, especially Riley.

I smiled as I guided her classmates through my craft station and the merrily escorted Riley through the others. In my head, however, it was a checklist: Craft One-check, You can do this. Breathe, Craft Two-check, Ok, wrapping it up. Turn in Card-check, Pick up Book-check, Hang in there. Breathe. Pick up Cookie-check and We're outta Here-check. I made it, without cheating Riley or her classmates out of any part of the experience. I got home, dictated some directions and collapsed until bath time.

It wasn't the first time and it won't be the last. It was just a more extreme example. I prefer to fight through pain that comes and goes or can be largely ignored, but when your eyes well up with tears every time you take a step it's a whole other level of pushing through. I suspect, all mothers have a sense that their children have no idea how much they fight and sacrifice for them.

I remember going through some nasty pre-term labor with Riley and a good friend assuring me she'd be happy to recant all I went through to bring this kid into existence when she's an ungrateful teenager. My children have no idea how many times I've wanted to check out and instead found myself in an "above-and-beyond" situation. They shouldn't know about it, not when I can fight and be there. Now and then they need, to know that I need my feet up or a request is just too much at the moment, but I don't want them to ever feel guilty for wanting me around. Someday they won't. I'll never be sorry for overdoing it, if I've been able to make memories with my rapidly growing kids. Now, cleaning is a different story...no one wants basketball sized swollen knees from scrubbing floors and tubs. I pick my battles, not always as well as I should, but I do.

For now happy faces have to be my thanks.

Stranded

From time to time, I have been truly stranded. I have been stuck in a bed, a chair, in a room or some other place that I don't want to be, with no way to leave. I have woken up unable to to climb out of my bed. I have found myself on the couch unable to reach my crutches. I've had a child take off in my wheelchair and leave me stuck. I have crawled like a baby across rooms and been carried. It is a vulnerable thing to be stranded. Somehow, I never feel relaxed like a cartoon man in tattered clothes sunning himself on an island beach waiting for rescue. It is pure frustration to be stranded, stuck and stunted. It is the battle against my flawed body to accomplish my goals at it's extreme low.

I can forget where I put my crutches the same way someone else might misplace their phone or keys. Nothing like forgetting your legs, right? I expect on my worst of days to be besieged by frustration and I plan accordingly. The trouble is that sometimes it's a good day physically and something completely out of my control strands me. Those days knock the wind out of me.

It is hardest when an overly physical task sprung on me: a wet bed in middle of the night, a broken pipe under the sink or any of those day to day emergencies that happen to everyone. Things that wear on my joints and test the limits of my fused spine. I take them in stride, but they always cost me. I balance things as much as I can, because that's what Moms do.

I have a friend who left her wheelchair in the driveway when she transferred into the car and didn't realized she didn't have it in the car until she was pulling into a parking space at her destination. Stranded. Another disabled mom friend of mine recently went shopping prior to a snow storm and couldn't find an electric cart that functioned. Not one electric cart with a charge in the whole store and no one who cared. Stranded.

I had a similar experience recently with a happier resolution. I went to Target bright and early, grabbed a electric cart and went on my way. I picked up everything on my lengthy list working my way to the back of the store. It was there, of course that the battery died. There I was perched on a paperweight, in the back of this sprawling store. I was mildly irritated until I turned around and saw another woman in the same situation, a handful of aisles behind me. She was older and heavier than me, but she had a shopping companion. I'd say the competition for who was worse off was a draw. My basket was ridiculously full and I didn't want to abandon my haul to find help. I sat there scanning the aisles and debating whether to just walk out. I couldn't bear the thought of being stuck or giving up after my trip was all but done.

Finally, I saw someone coming and felt completely relieved- for about two seconds. He passed me on his way to rescue the other lady. He swapped her bum cart for a new one. I waved him over, now visibly upset, and he explained that he just gave her the last charged chart in the store. I looked from my cart to him in dismay, but before I could embarrass myself with any further emotional display he offered to fetch a cart. He said he would load and push it for me. While he was gone the rescued lady's second cart ran out of steam too! It was almost so ridiculous it was funny. That poor woman.

My hero followed through, cheerfully getting quite the cardio-workout placing all my stuff in a regular cart. He walked me through my last few items and on to the checkout line. He unloaded everything on to the belt and disappeared to save the other victim of the-day-all-the-batteries-died. The managers were appalled by the situation and my new friend even came back to help me get everything in the car.

I've been lucky a few times and not so lucky many more times. I think everyone has those moments, but they are more routine when you have mobility issues. I find being prepared: shopping early so the carts are still plugged in from the night before, not patronizing stores that are too hard to manage, stocking up on things when I'm out so that if I can't get out later we have them, being very vocal with management when there's an issue in hopes it won't happen again...and so on. Somethings are just beyond our control even if we do everything we can to prepare there will always be surprises. "Pick, yourself up, dust yourself off and start all over again..."

You Might Be a Disabled Mom if...

There are so many common experiences for every mother, but there are a few that I find myself giggling about because of their unique circumstances.

• You've burned your lap bringing dinner to the table.

• Sometimes it is safer for the 3 year old to carry something than Mommy depending on terrain.
• You've ever balanced on one leg/one crutch/up a step on wheels while your kid spotted you.
• You take your little one to more of your doctor's appointments than their own.
• You were excited when your child could help you put your shoes on.
• You've tossed imaginary objects (keys, potions, jewels) to the jungle gym from the playground bench
• You fall down just as much as as your toddler.
• You were surprised how quickly your kid was better at walking than you are.
• You've bent over to pick up a toy and rolled over your own foot.
• You've been tangled wheelchair around laptop cord, purse around crutch handle, foot through cord and simultaneously ripped something from the wall/dumpped something while hitting the deck.
• You clean to gain passage through a room rather than for tidiness
• Your kid is the only kid on the playground who gets hurts, gets up and comes to Mommy before she cries
• Your kid has left you stranded by running away with your means of transportation (Usually while you're on the toilet or in bed).
• Your kid thinks Mommy's picture is all over the parking lots
• If you're skilled at pushing something on wheels while you yourself are on wheels
• Your kids can literally push you around!
• Your kid squeals with glee at the novelty of being given permission to climb a flight of stairs in a public building rather than ride the elevator again
• Your child learned to walk on your walker

I know there's more...help me out disabled parents

Beach Day

The beach is not my favorite. I'm not ungrateful to have it as an option, but physically it's less than easy for me. It's about as easy for me as bowling is for a T-Rex. It's not impossible and I do appreciate the atmosphere. Probably slightly more so than the dinosaur in the bowling ally. My crutches and fused ankle don't appreciate sand. My bad balance and fused back do not appreciate the waves. It makes my beach trips infrequent, but not completely out of the question.

I had a horrible illness and several days in bed. It was time for fresh air. Everyone gets stir crazy when Mom's that sick. Riley had announced the week before she wanted to learn to swim. Even if I just laid on the towel snapping pictures it was time for the beach.

click any picture to enlarge

Finding Oz

We recently watched a Star Trek Deep Space Nine episode in which the main character was "disabled." Technically, all disability and disease has been eradicated at this point in the future. This woman is native to a planet with very low gravity which makes it very physically exhausting to get around in normal gravity. I know how she feels, Damn Gravity! Seriously, I love the idea that a low gravity planet exists! I would love to go there. When I was a little girl I always wished I could live underwater.

So, this capable young woman finds the station's doctor smitten with her and of course he has a plan to fix her. Collective groan from my disabled readers. Although not as overdone or ridiculous the sitcom stand by of meeting a girl you like and then finding out she's (gasp!) disabled and having angst about perusing her, this plot's been done. My favorite example of this plot is actually a subplot in The Poisonwood Bible. A book that when presented to me as a gift bore the inscription "Can't wait to see you play Ada in the movie." Ada's is the disabled character who falls for a neurologist. Her doctor succeeds in "fixing" her and then one of my favorite audition monologues ensues. The gist is that she's not sure who she is anymore and how arrogant the able-bodied are always trying to "fix" people.

In Star Trek's version the doctor falls for her before he tries to fix her unlike the the asshole in the book. Other than that it's fairly similar. She undergoes the first round of treatment and experiences euphoria at her temporary change. Then she feels all the discomfort that goes hand and hand with a major change to your physicality and she starts to doubt herself. I emphasized with her struggle. She is already a strong beautiful woman who's struggles have made who she is, in her case a Star Fleet officer. In her situation though there is the added element of never being able to return to her home planet for any length of time once the changes are permanent. Another character compares her to the Little Mermaid which is funny after my underwater comparison, but completely apt. All the sacrifice and pain to be other than you are (each step is like walking on broken glass in the original fairy tale)and you can never go home.

I enjoyed the episode other than a fleeting moment or two of yelling at the screen. I understood her. I, like her have never asked to be "fixed", but there were some moving moments related to this in Oz the Great and Powerful (not spoilers). As he's performing magic tricks a wheelchair bound girl in the audience asks him to make her walk. He refuses, apologizes and flees the theater. At that early point in the film I was attempting to roll my eyes at the cliche, but his reaction to it was so human, I couldn't. Later, in Oz, he meets a little China doll whose legs have broken off. He produces super glue and that girl does walk. Again, I wanted to roll my eyes, but it was so real (feelings not circumstances) I couldn't. It is a shallow victory because she has her legs, but she's lost everyone she loved.

The china doll was a character I could relate to. Only her body was fragile, everything else about her was tough. She was braver and more resilient than most. She becomes an important part of the group, but the Star Trek character like so many disabled TV characters leaves the show after one episode. I think the it would have been fascinating if the doctor had married her. Than they would have had to navigate being military, living in space and her unique physicality. On top of which the doctor would allows be trying to fix her and it would cause all kinds of tension.

I'm not saying I would watch a show because it had a disabled character. I'm just saying we have lives and adventures too. It would be nice if television used disabled characters to further interesting plot lines and complicate character relationships rather than as token minorities for "movie of the week" style writing.

Same Old...

Most of the time, it doesn't matter. Most of the time no one mentions it. It just is. The sky is blue, the Earth is round and I walk funny.

I don't exaggerate; it is usually of very little consequence or importance. There are moments, days, or even stretches of time when it does matter. Times when someone says something that brings it to the forefront in a way it doesn't deserve to be often. If a friend of mine adapts to a challenge and then laughs about it (like it's the most ridiculous thing ever), I might find myself thinking "Oh, yeah I'm different than you." Those kinds of stories resonate because my disabled mom friends and I have made those adaptations to cope without a second thought. When someone rails against keeping a toddler on a lead. When someone talks about me like I'm a decorated war hero for taking my kid to the playground. It matters.

I'm not saying it should never matter - of course it matters sometimes. It matters greatly sometimes. My existence is different than a lot people I know. I live in a physical flux. I am not a normal specimen of humanity. I have not been injured and recovered back to some magical epicenter of functionality. I started out with a set of issues and challenges to adapt to. When there is an injury, surgery or other change in circumstance, I adapt. I am changed each time, and each change is a link in a chain. It's not a ripple in a pond that will still itself again.

It's not linear. Injuries, healing, back to normal? Not quite. Yesterday, you saw me hobbling around unaided by crutches and today I'm in the wheelchair? In your world it means there's something wrong, but in mine it's day-to-day adaptation. I'm not "getting worse", I'm coping with uneven terrain, distance, a swollen joint, a speedy preschooler. I just didn't feel like walking/finding my other crutch, needed both hands, wanted to wear a bigger purse. You change clothes, I change my method of mobility (or whatever else is needed). You take Aspirin for a headache, I walk less when I need to.

I'm not saying it's never linear. Particularly after surgery there is a reasonable progression, but in my day to day life things are always changing. Please don't take any of my comparisons here as hostility - on the contrary, I adore all my able-bodied friends and fans so much that I felt I could share. I am not trying to elicit pity from you. I see what is different between us which is tricky when so much is the same.

Maybe I'm just permitting myself to record a stream of consciousness with no real significance to anyone but me. In which case I'll indulge further and say I don't have any aspirations to be "other" than I am. We all have struggles, it makes us human. I never seriously longed for a "cure" from what is, as I stated at the start, simply a fact of my existence like any other.

It's all in the "eye of the beholder", as Rod Sterling so nicely put it, it is merely "an accident of birth."

Three Years Postpartum

It was Sunday, September 6th (My due date was October 13th): My contractions started at 11:15am. They were 10min apart to start. I had been experiencing pre-term labor since 23 weeks, so I wasn’t terribly alarmed. I chugged water, which had always stopped contractions in the past. Before I knew it, they were 5min apart. By 2:00pm they were 2 min apart and strong. I didn’t want to go back to the hospital and be sent home again so I resisted the idea. I had done everything I could think of and it wasn’t stopping. Mike donned his “World’s Best Dad” shirt with a picture of Darth Vader and double checked our bags.

When we got to labor and delivery they gave me IV fluids in an attempt to stop the contractions and said I was still "only a fingertip" dilated. My OB was down the hall, so she stopped in. She said she may have to do a Magnesium Salifate IV, but wanted to hold off for a bit (Thank God). Instead they kept giving me Procardia (my regular anti-contraction medicine), 3 doses on top of what I'd already had. By 4:30pm the OB said it was clear the labor was not stopping and we were going to have a baby today. Of course this occurred in the five minute window in which Mike was getting a soda so he thought I was kidding when he came back.

I had to get in line behind the other 34wk mom delivering down the hall so the NICU team would be ready and then the OB ran to another hospital to deliver a baby. It was about 6:30pm when they started prepping me for surgery. As they were wheeling me in I could feel tiny fists slamming against my belly. “Knock, knock Mommy! Let me out.” When I laid down on the operating table my water broke, it was time. Riley was born via C-section at 7:26pm she was 5lbs 6oz. She came out screaming! I knew she would.

The trio of new babies in my life inspired me to read over some of my pregnancy blog. I can't believe how long it's been! Here's Miss Roo fom birth to 3yrs:

Photo on the top right by Rebecca Brittain Photography

I truly have trouble grasping how much time has gone by. Since pregnancy, so much changed for me physically. I was tighter (who knew that was possible). So tight that my taut muscle began to bend my spine. The answer: Fusing the bones of my spine together with metal rods. No more scoliosis. However, I used to be able to comfortably put on and tie my own shoes. I used to walk without assistive devices. I used to carry my baby. Now? I have to wear shoes with no laces, use crutches and never lift anything or get down on the floor without careful consideration. It's not entirely fair to blame the back (although mostly it's the back) I also have fused ankles (from childhood and a bum hip (since collage). Things were easier with a bendy back just more painful, maybe?

Is it worth it? I hope that things improve physically, but I wasn't willing to risk being in too much pain to take care of my baby. I knew pregnancy was a one shot deal for me. I also knew there would be a price. I'm so grateful that I made it through with a healthy, beautiful, smart girl. I wouldn't do much differently if given the chance. I have certainly never regretted Riley.

Physical Impairment vs Playground

I used to play on the playground with Isaac. At least the swinging and sliding and such. I always left run and chase to others. Since Riley's existence I find myself parking it on a bench more often than not. God, that sounds sad. Maybe it is...I'm very hands on at home. I color, paint, build with blocks and all that good stuff often. Outside, even in my own backyard I do a lot more watching than playing. I do make frequent use of the swing though.

Today (covered in SPF 50), I took Riley to a new playground. I went on crutches, thank goodness. There were a fair amount of challenges.

As you can see in this picture there was a plastic barrier around the sand area. A very tall one. I think it hit Riley near chest level. I was unprepared for this and not super quick about observing it. I set our stuff down, shoved the camera in my pocket and abandoned one crutch. Bad call as it turned out. I made a few failed attempts to swing my legs over before enlisting Riley's help. Bless her she tried, but alas I was gravity's victim once more.

Recovering from the fall "into the playground" was something of a puzzle too. I had very little traction in all that sand and only one crutch. Hmmmm....I ended up on the 4th try digging my back foot into the sand and pushing the crutch against the plastic half wall. Then I was up and limping.

It was a meager little playground, long since abandoned for the fancier upgrades in the distance. It has a slide, a swing set with toddler sized bucket swings and a bouncy pelican. I told Riley it was a playground just for her. She was excited and slightly dubious, but she had a lot of fun.

By the time I started to go around the slide to help her up the ladder she'd made it to the top. It was shady enough that she didn't scald herself on the way down either. Of course with so few options I knew we were headed for the swings soon. I did take immediate notice that they were all "tot seats" as the sign called them. Not a "big girl" swing among them which meant two things: 1)I couldn't swing too 2)How in the heck was I gonna get her in there?!? When she was a baby no big deal she was a light weight. At home these days it's rare for her to request the "baby swing", but if I'm in my wheelchair I let her climb me and then from standing in my lap put her in. Otherwise I drag a lawn chair over and let her climb that.

From the ground, in sand, into a seat that high...I didn't get this on the first try either. I propped my crutches against the the swing set (I always choose the swing next to the support so Riley expects it now). Then I attempted to brace myself and lift. Fail, of course. I tried a few things before I finally backed up against the aforementioned pole and pulled on the swing to see how far over towards me I could get it. That's how I did it, picked her up leaning on the pole, pulled the swing toward us and aimed her feet in. Once she was situated I picked up a crutch and pushed her until my arm was falling off.

Talking her out of a swing it always a job, but I convinced her to go bounce on the pelican. We used the same exit procedure we do at home: she stood up leaning on me, I leaned on a crutch while lowering her in kind of a roll down my body until her feet where on the ground. The pelican was super appealing to me because she could do it by herself and it was outside of the sand. I caught my breath for a minute while she figured it out. We decided her name was Princess Pelican. She and Riley had a few adventure while I caught my breath.

Right before we left Riley got creative she decided the top of the slide was a tower (hers is at home, Daddy built it) and then she was a trapped princess. I tossed her the key to her tower from the bench. She caught it, unlocked the door with gusto, discovered the "tunnel" (slide), took it to freedom, ran excitedly through her private playground and then climbed the ladder to repeat the whole thing.

So, now that I've done it once I've got systems in place for this playground and will happily return. Many thanks to my amazingly smart little girl for insisting I swap her sandals for sneakers before we left. The last obstacle and only unsolved issue was the potty. I suspect it's by the new playground that was crawling with summer camp kids in the distance. There was no way I was making that hike or braving that crowd to be wrong either. We rushed home which is about 2 minutes away (and made it). I felt both proud of myself and Riley's teamwork and totally frustrated at points. The truth is my daughter would have enjoyed walking around an empty field, but I hope she never feels defeated by a problem. I'm also happy that she had so much fun playing a game with me while I sat on the bench.

Now that I write that we do that in the backyard a lot. We swing together or she climbs the tower and I swing. All the while having a dialogue/playing games/singing songs. I guess we ended on a rather cheesy note, so I leave you with Galaxy Quest: "Never give up. Never surrender!" (Take that playground.)

I'm Not In the Mood to be Stared At

The right to be ignored. Is that what I'm looking for? When I suddenly, after making it a lifelong habit of ignoring it, notice and become incensed by staring, is that why? When I choose to share the story with an empathetic friend is that why? Now I'm hollowed out from a long couple of hours with the kids and that same friend calls to say he's been thinking about what I said. Huh. So while receiving his advice a toddler enters the room screaming at me to spin something. Ah, there it is again the desire to be ignored. Not indefinitely just for the short term. I wonder if that Potter kid rents out the cape.

My whole life I've been wishing the other people at the store would become uninterested in the lady walking in her funny way down the aisles. They don't and on an average day I tune them out completely. On a great day, I may even mess with them a bit, but on a bad day...on a bad day I wish they would disappear. Maybe I've had it exactly backwards. Certainty having kids brings on this desire on a pretty regular basis.

Respect and listen to me, but for the love of God let me use the bathroom for 2min without an audience. I remember a moment when I was in middle school that I was taking my time about going to the bathroom. I mean like an extra 30 seconds nothing excessive and a friend knocked to ask if everything was ok. Does that happen to the able bodied? I know it happens to every mother of two. Everything from I'm bleeding profusely from the head to what's for dinner warrants a knock on the bathroom door.

As an actress I never wished to be ignored and had the contrary desire. As a human being who happens to be disabled and later as a mother I have often silently prayed I could be invisible. I know there are disability advocates who say staring is good, because being noticed is good. Right. Sure. Only I am not the disabled population of the world I am just a girl in grocery store. I am grateful that I can get out and about on my own have been my whole life, but some days I don't want to feel like I'm on display.

I am also grateful to spend so much time with my healthy, happy kids. I still want privacy for a trip to the bathroom or a phone call now and then. Pretend I'm not here. Just get all zombified and sucked into Mickey Mouse at an opportune moment for me instead when we're running out the door late for something. I was never late before I had kids, sigh.

I digress, staring is ok if you're under 5 or if it's a precursor to a social interaction. Like, "Sorry to stare, but you're hair is on fire" or even "That is a fabulous dress."

Your Mom Could Beat Up My Mom!

I was reading a friend's blog (not a fellow blogger I now consider a friend although we've never met, but a friend-in-real-life's web log.) and she mentioned her precocious little 5 year old daughter's dramatic accusation that she had not won the jumping competition at camp that day because her mother never taught her how. Her mother, like myself, has CP. I pondered this a long minute after I read it. I used to worry as a child that if I ever had kids they would grow up and resent my disability one day. I decided as a kid that a)I was awesome and b)I was NEVER having kids.

Clearly, I was at least half wrong there. Funny, I never stressed over what Riley would make of my physical ineptitude for anything athletic or requiring balance. Maybe it was the fact that Mike already had a very active 5yr old when we met. I had to adapt quickly. I didn't teach Isaac to ride a bike, that was a job for his dad, but I did teach him to swing by himself and tie his shoes. He seemed to have the physical milestones well in hand.

I just needed to teach him the stuff I was good at. Fine. Good. Mike can do the running and jumping. I never thought about how balanced we are in that way. Just last weekend we took Riley to a gymnastics birthday party. I got her ready to party and then socialized and took pictures. Mike jumped, flipped, ran and climbed.

One day, surely the kids will realize that I'm different than the other moms. They will probably even resent it at some point, but all parents (aka human beings) have strengths and weaknesses. My mother certainly never taught us sports of any kind and she was perfectly able bodied. I resented my parents not being cooler or having more money briefly over the course of my adolescence. So, my kids can go for the easy, obvious failings if they so choose.

I have moments like the other day when Isaac asked why we never go to the beach, when I feel a bit guilty. Any post surgery, injury or exhaustion moment when my kids are full of energy, that I feel mopey. On the honeymoon when all Mike wanted to do was snorkel and I epically failed (and then childishly whined about it), I felt guilty. Doesn't he deserve a wife that can snorkel? Don't the kids deserve a mom who can play at the beach? Or ride bikes with them? Sure they do.

The reality is they don't have one of those. Just like they don't have a mom who can reach the top of the fridge without a step stool. They have me and I get the job done. They have a dad who can run, jump, flip, etc so they're lucky that way. Mike and I balance each other in lots of ways. Do they deserve a dad who doesn't feel anxiety meeting the other parents? Probably, but that don't have one. I pick up the slack there and no one misses out on much.

I suppose it's all well and good to ponder it as a hypothetical. I imagine it will be much more emotional when Riley accuses me of ruining her life because I can't help her with her pliés or pirouettes. Somehow it will be my fault when Isaac, who is currently going through an incredibly spoiled sport phase, doesn't win some kind of physical competition or doesn't get to go on a class trip because I'm just not capable of supervising a spelunking expedition. It will sting, but I'm only as perfect a parent as I am a human being. I have done and will do everything I can to make sure their childhoods' are full of new experiences, but please don't ask me to take them to the beach by myself, UGH.

Back To Adapting

It was a slightly different "back to normal" today. I found myself with kids neatly squared away at their respective schools rushing home to Miss Leeloo. Which wasn't an altogether unfamiliar thing, to have a baby at home. I reflected on what I saw as the biggest challenge all the way home: How will I get her outside quickly? Luckily, she had been out a few minutes ago and was lazily munching her breakfast in her "room" (crate) when I got back, passing my husband in the driveway.

She was calm enough and settled down to sleep for a bit afterward so I had time to ponder. I mulled it over while I folded laundry and tidied toys. I wasn't going to cause a regression making her pee on the pee pee pads all day. Plus, that wouldn't be super fun for my back either. I decided to try my go-to in Middle School, I would attempt to use my wheelchair as a stroller and push her to the backyard. If that failed I could attempt to carry her on my lap.

Plan A was an epic fail. She wanted nothing to do with being in the wheelchair by herself and even with my arm serving as a seat belt she jumped out. Than I attempted to sit down and scoop her up, but she is no longer the 13.1 pound baby we brought home. While I am still able to lift her from the lower couch trying to pick her up from my wheelchair is a no go. Shoot. We'd have to do it baby duck style. She'd have to follow me.

I got her outside, but she recoiled from the heat and camped out in the shade on the patio. I rolled down into the grass and tried to coax her out. I used the same words Mike does "pee pee time". She didn't budge. After such a long nap she had to be bursting. I got down on the ground and petted her, eventually pulling her into the grass. I got up and watched her for what felt like forever and then finally she got up sniffing. With her bouncy puppy run she found a nice spot in the flower bed and took a tinkle. I praised her no end and thought maybe we might just make it.

The rest of our potty trips were increasingly longer and in some cases unsuccessful. Just like a toddler she followed happily then almost immediately began testing my resolve. On the plus side she knows Mommy and Daddy can take her out to potty now with certainty. Also a bright spot she's 11 weeks old Thursday which means in a week she'll be old enough to hold it. She's growing up so fast.

Hindsight is Twenty, Twenty

I should not have walked the combined square footage of three stores in between physical therapy appointments. I should have spaced out the trips. The trouble is my wedding is two weeks away and my groom just decided what the boys were wearing this weekend. All that walking and then home empty handed mid-week, but the weekend was worse.

I should have rested before the baby shower. I should not have run errands first. I certainly should not have gone to the mall afterward! I was so disappointed about not finding anything during the week I made some not great choices. Isaac wears a size 8 and he needs brown dress pants. I checked online, Target, Kohls and Ross, Nada. Apparently, little boys ONLY wear black or navy dress pants EVER. Also, brown pants were plentiful in toddler sizes and mens sizes so that's the only age window it isn't done I guess. I shall have to file a grievance with the prepubescent boys union about this.

Aside from Isaac's pants, he's a groomsman, I needed to see if the shirt I liked for Mike was available in store to save us the $10 shipping and I needed shoes to get married in. Now, I escaped without kids having had Mike load the wheelchair into the back of my station wagon for me. I never go to the mall on weekends I always go early on weekdays. There's a good reason for that. Not only was every handicapped space gone, but every space near the store I wanted in general. I should have thought about what that crowded of a parking lot meant and gone home.

I got a descent space, used my crutches to get to the back of the car and then pulled on my wheelchair until it kind of fell out. I left my crutches in the back and wheeled in to Macy's (I should also mention I really hate department store). They did not have the shirt in the color I needed for Mike. They had a similar one (also on sale), but it wasn't in the size he told me. I pondered that and called him to discuss while I searched the boys department. Mike told me to get the size smaller shirt.

LOOOOOOOOOONG story short, that was all I came home with. There were no brown pants in Isaac's size. I found several shoe options, but none in my size/the right color. It was a bust. I dragged my tired butt back to the car after those fruitless hours of searching and could not remember how I'd been able to load my wheelchair up by myself before. I took my crutches out of the back, folded up the wheelchair and then made several comical attempts to put it in. Basically, I have to tip it back in a giant wheelie until the front wheels are in the car. Then I have to reposition (and brace) myself so I can push it up it enough force to get it in. Once it's standing up in the back I just tug it until it's on it's side and shut the door.

I got home beyond tired to discover the shirt didn't fit Mike at all. It has to be returned. I just put all the cardboard and pins in a bag because I have no idea how to redo them. He also got the wrong size bathing suit at Target earlier in the day so that has to go back. It gets better. I went to order my plan b shoe choice online and it was sold out!

It was so stressful. I did order Isaac the only pair of brown dress pants in his size in all of creation. They better fit. Other than that I busted my butt on minimal sleep (been having nightmares)for almost nothing!

Dance Class Derailed

Riley's been going to dance class since the summer. It's a small class of two year olds and she loves it! It's once a week on Tuesday and she usually rides over with her buddy Boo. I'd been pre-surgical and then post-op for a long stretch of the time she's been going. So Boo's Mommy had been driving her and dropping her home afterward. I have awesome friends.

Almost as soon as I was able and up to driving again I started having therapy on Tuesdays. Intense tiring therapy. So, I became dependent on the arrangement even though it was never meant to be permanent. The first week they missed class was because they were both very ill. Then a few weeks later Riley and Boo circulated a memo about behaving so badly neither mother would permit them to go.

Last week Riley was on her best behavior all day. I dropped her at Boo's for dance class. Then I got a phone call that Boo's Mommy's keys were locked in the car. Oh, no! I was tired and in pain. I knew I was barely up for driving let alone taking two 2yrs anywhere by myself. Mike gets off work the same time her class starts so he was no help. I so wanted to be a hero, but my body is broken and my bones were tired. I sent Mike to fetch her when he was done working and she was a terrific sport about it. Her consolation prize was a trip to the grocery store, poor kid.

I felt horrible guilt about not once taking the girls. I was mad that I never do my therapy and rest. I always wreck myself completely. Overachiever plus adrenaline equals non functional Mommy. I couldn't even get my own kid to her dance class when she was so well behaved all day. Failure. Riley loves dance class so much and I love that it makes her so happy. I was in ballet when I was around her age, but it didn't last. I bet Riley will still be in years from now.

Today after I picked Riley up from Grandmas's after my therapy appointment she said, "I'm very concerned about dance class." I couldn't make this up! Those were her exact words. I promised her no matter what Mommy would get her there today. She said she was "(s)till concerned about dance class". I reassured her as best I could after missing two weeks in a row.

I took precautions and napped after we got home while Riley was sleeping. I knew I'd be able to take her if I needed to and also if I was prepared to it wasn't likely I'd need to. Sure enough we got our ballerinas to class on time. They did a great job tonight and earned lollipops from their teacher.

So you see, broken failed ballerinas with metal in their hips can still sire dancers. Isn't she adorable in her tutus?