Cinderella on the Hunt

As we often do, we hit the Mall on Saturday. Parking was without incident and we were in the mall in record time.  Generally it takes us so long to get going we have to whip through so the nurse isn't locked outside waiting for us to get home. Not this time. We arrived around 11AM and the nurse was arriving at 1, so we had plenty of time to stroll.

We entered Macy's at one end of the and made out way to the middle of the mall. There Maggie chose to take the elevator UP and continue on the second floor. We went down one side all the way to Nordstrom, and started up the other side. We went all the way back to Macy's. I bought a pair of pants and as I was paying I noticed this

Maggie had lost a shoe

This is not unusual. Maggie's feet are so tiny and pliable, that it is difficult to keep shoes on her. Often once the shoe goes, the sock follows suit. Maggie looks like a small field goal kicker from a former NFL era.

The sock was still on, so the shoe could be nearby. I asked the clerk if anyone had turned in a shoe, but alas, it was not going to be that easy. We wound back through the departments we utilized, but nothing. We made our way back to the mall entrance stopping at an especially central and very busy cashier station to ask before we left the store.

I could feel the disapproval of the women in line as I interrupted the busy clerk, but that quickly changed to sweet concern. The clerk couldn't hear me at first, so I pointed to Maggie's shoeless foot and said "She dropped a shoe, did anyone turn it in here?" The ladies in line all clucked their concern but I just said airily, "Oh thanks, but don't worry. this happens all the time. She's Cinderella and she's trolling for Prince Charming." Maggie laughed uproariously at that. The ladies tittered politely.

We made our way back down the mall, looking on ledges and in corners for the errant shoe. At the food court I asked a woman if there was a lot and found because we were missing a shoe, but she didn't speak English and suggested I go to Aldo and buy Maggie some designer shoes. No. But thanks. If we are going to lose shoes, they are not going to be expensive shoes.

We continued our quest. We were getting close to the other end of the mall and I figured it was gone forever. Two women were walking in our direction talking about something that was likely stolen. Turns out they were referring to a single shoe. As they passed us the view behind them opened up and there it was.

 

All in all a good trip to the mall, though Prince Charming remains elusive.

I wrote most of this early this morning before putting Maggie on the bus. I noticed a familiar sight and had to grab this shot while we were downstairs waiting for the bus to arrive

Maybe Prince Charming is at school.

Shoeless Joe

 "I felt bad because I had no shoes until I met a man with no feet.*"

This is one of my favorite sayings. It's sums up my attitude toward life pretty well.

 Let's face it, we are shoeless here.  We have a tough assignment in life keeping Maggie happy and healthy, but we have the ability, the support and the desire to pull it off. Others have it so much harder that we have to stop sometimes and be thankful for the soft sand under our bare feet.

It's all a question of perspective. If I can find a positive way you look at things, it becomes so much easier to handle.Take my career for example. For a couple of years I really mourned that loss. Then Maggie's needs required more advocacy.  Perhaps instead of losing my career as an attorney I was supposed to acquire the skills I need to help Maggie (and others) live the best life they can. Whether true or not, it is certainly more comforting to consider there was some method to the madness.

My greatest lesson in perspective has come from working at the hospital. Every day I see parents dealing with as much or more than I do with additional complicating factors. Some are far from home, some don't speak English, some are losing their children. Most are walking their paths with grace, thankful their situation isn't as bad as that of someone else. As I walk home after working, I find myself thankful that we live so close to a major medical center and thankful that I have the tools to navigate the complicated systems we find ourselves part of.

Our life is not a bed of roses, certainly, but it is not all thorns either. We have found a place in our shoeless life that works for all of us. Yesterday I was thinking about all of this as I put Maggie in her chair. She gave me a huge grin and all was right with the world.

My moment of philosophical stasis was quickly interrupted, though. As I pulled the shoulder harness over the top of the chair to secure Maggie, I knocked the pole off the back of her chair. The pole, which weighs at least ten pounds, is the one used to hold the dynavox in place on the front of her chair.
It fell straight down onto my big toe. I cannot tell you how much that hurt. I screeched and probably let out a string of expletives. Steve came running in from the front room to see what had happened.

Though I snapped at him choosing to lecture me at that moment,  the irony of his comment wasn't lost on me. He looked at the bruise forming on my toe and said,
 "Maybe you should wear shoes."

Maybe I should.  Life would be easier.



*author unknown but according to answers.com it is attributed to poetry from the Gulistan of Sa'di published in 1259

Spring Break 2013

Spring Break is already half over and I haven't even complained yet! I must be losing my touch. Actually, we have been very busy girls, and that is the key to keeping Maggie happy.

Monday we took Brisco for a walk in the park. It was quite chilly but we marshaled on until Maggie started saying "Mom, I'm cold." We headed home via Safeway where Maggie lost a shoe.The right shoe. It's always the right shoe. It gets quite expensive, though I do have a lovely collection of left shoes The dog was outside barking incessantly for us as we retraced our steps looking for the errant shoe. I figured she dropped it in the park and gave up. I was halfway down the block when the security guard from Safeway came running after us waving the shoe. Excellent! I left it on the back of the chair where I could keep and eye on it and we walked home.

Tuesday we had our obligatory outing to the mall, and Maggie had a meltdown in the middle of the trip. Not sure what was going on there, but we sat down in the mall until she could collect herself. I think she was so worried we were going to leave, she anticipated being sad and lost out on half the "fun." We did get her some cool new clothes and she bought chocolate bunnies to send to Tim and to Eddie and Grace.



Yesterday we had appointments to get our haircut.  She was excited about it and on Tuesday night said so on her talker. She didn't have a word for beauty parlor and improvised and you know that always impresses me. It's difficult to read the entire thing. It says Dad dad dad I am excited because I will go to the place for my hair Mom mom mom













 Maggie has been needing a haircut for quite a while. We have been using headbands to keep Maggie's hair from hanging in her eyes. I took "this before" picture at the Post Office where we stopped on the way to the "place for my hair"

While she was looking forward to getting her hair out of her eyes, Maggie also loves loves loves the haircut itself. It's hard to cut her hair because she is laughing the entire time. 

When Maggie was done I got mine cut too. When she paid attention she thought that was hilarious, but she mostly checked out herself in the mirrors. Lisa, our cosmetologist, took a picture of the two of us with our new haircuts. 

If I can fill in today and tomorrow, we will have this Spring Break nailed. So w e are off to Clement Street to shop in various stores for various things. It's not the mall, but it will have to do.  

A Cinderella Story

To match the fairy tale that is her life (sarcasm), Maggie emulates Cinderella. 

NO, we don't make her scrub the floors or lock her in a tower and she isn't headed to the ball to meet her handsome prince. In fact, she's takes after Cinderella in only one way - she loses a single shoe all the time. 

Because of her dystonia and cerebral palsy, Maggie moves constantly. Her body is in motion somewhere even when she's all strapped into her chair. A lot of times she is moving her legs and feet.  Her feet are very small. She is 17 years old and still in children's sizes. She wears a child's size 12 or 13 which is generally appropriate for a child about 5 or 6 years old. Her feet are little and skinny. Between the movement and the teeny feet, it is difficult to find shoes that will stay on her feet.  Most styles are right out.

Invariably when we go for a walk, someone tells us she's dropped a shoe. After a couple of tries putting it on again,  I will give up and stick it in my purse. We have been lucky that we retrieve so many.   With this new problem with her wheelchair footpad (see yesterdays post), her feet are out of sight and no one sees it drop. She lost one shoe last week while on an outing from school. They retraced their steps, but never found it. Then I lost another shoe that I tossed in the car after she dropped it. Hope springs eternal that one will still show up.  

Saturday morning I took Maggie to buy some new shoes. She thought that was the greatest time ever. We've done it before, but she never reacted one way or the other. That has now changed. Shoe shopping is the bomb!  I let her choose between a glittery/sparkly pair of high tops and some slip ons with peace signs. My girl went for the bling, of course. We also bought the white athletic shoes from yesterdays post. When we returned to Steve, she quickly said "Dad look new shoes." She repeated it over and over again until she felt his praise was sufficient.



Sunday morning came and Maggie and I were heading out to run some errands. I said, "Mag, where do you want to go today." She didn't hesitate at all. She just started making a sentence "Mom, shoe shopping please."  I had to nix that idea and quick.  I may have created a monster. 

Maggie may have feet the size of a small child, but when it comes to shopping, she definitely acts like a 17 year old.

Stretched to the Breaking Point

The title doesn't refer to my psyche, but to Maggie's chair. Her wheelchair is once again in need of attention and repair. She can use it, but it is tattered and sad.  The parts were ordered eons ago and we are waiting and waiting and waiting for them to be delivered and installed. In this day of overnight delivery and immediate attention, it blows my mind that these parts take three months to get.

The most unsightly part of the repair is the fabric behind Maggie’s legs that is designed to help Maggie  keep her feet in place. This neoprene fabric  is stretched behind Maggie’s legs to keep her feet from dangling in space.  It is supposed to look something like this.  

Maggie tends to use it to rest her feet and the tone in her legs is so high that she exerts constant pressure on this fabric. Surprise surprise, she wore a hole in it.  The new one was ordered llong ago and they forgot about it. It was ordered again on the 1^st of March and now, 64 days later, we still don’t have it. That little hole got bigger and bigger. We turned the neoprene upside down so that the pressure would be on another part of the fabric, but that seemed only to exacerbate the problem. Now there is a gaping  hole all the way across the cihair. Maggie sticks her feet through it and looks like an amputee. They sent me this picture from school today.

We could just take it off, but even in its tattered state it is providing some protection for Maggie. When she sticks her legs through she is not keeping her feet in the right position, but the fabric is still between her legs and the footplates of the chair. Without the fabric, her legs would be behind the metal footplates and she would injure her shins on those sharp metal edges.  

But she looks like someone down on their luck hustling for handouts on the street.

Hmmm. Maybe she could earn her allowance.

Or she could contribute to her shoe fund.  A lot of shoes drop through that black hole.   The shoe story will follow.

A girl and her shoes!

Keeping shoes on Maggie’s feet is a constant battle. Her movement disorder literally extends down to her toes and she is constantly wriggling out of shoes.  As we push Maggie wheelchair, there is always a bump as we run over her shoe that has fallen off her foot. When she was smaller, it was not unusual to return from an outing with one shoe missing. Now we watch closer and just keep the shoes in one of her bags as they fly off her feet.

The other day at the wedding, Maggie’s shoes were hanging on the back of her chair. They had fallen off so many times we just gave up putting them back on. A woman at our table asked who the shoes belonged to – they were clearly “little girl” shoes. When I told her they were Maggie’s, she said, wow, her feet are small. She was right. Maggie has tiny feet.  It makes sense, of course. Bones grow, in part, from use. Maggie has never walked and those bones have not borne her weight; her feet have not had any reason to grow as large as they might have.

 Maggie does not look her age, but she does not look like a toddler either. She is small all over. She weighs only 70lbs (believe me that is plenty when you have to lift her 50 times a day.) but her body is proportionally accurate except for her feet. They are proportionately even smaller than she is. She has not yet reached a size “1” – something kids hit around their 4th birthday. She is 16 years old and wears a child’s size 12. To give some contrast, when I was 16 I wore women size 9 – which is big. In fact, I probably hit that at about 13 and stayed there until a couple of years ago when I finally decided I needed a 9.5. Here is a picture of our shoes next to each other.  My feet are big, but not clown sized. Her feet are extremely small.

Finding shoes that will work for her is always a challenge. We try all sorts of different styles. Her aunt bought her some fancy Uggs, and we had to use a rubber band to keep those on her feet. We have had some success with high top tennis shoes. It takes her a while to get out of those things. On the other hand, it is very hard to get them ON her feet in the first place. Getting that heel all the way down on a kid who’s foot moves like jelly is extremely difficult.  The “dress shoes” are the worst. There is no way those will stay on her feet. I don’t even try the slip-ons that do not have a strap of some sort; and even the straps just give her something to use to balance the shoe off her toe before she flings it aside.

Getting the shoes off is something of a game for Maggie.  It is another way she can control her surroundings – or at least the people around her. She laughs her head off as we find a shoe on the ground. I put it right in her face and say, “Can you explain this, young lady?” That really sets her off. Once the shoes are off the socks are pulled off by the toes.

Her wheelchair does have straps on the footplates to keep her feet in place. They are of limited utility, however, because Maggie manages to wriggle out of her shoes. Before we gave up on those things, it was not unusual to see Maggie legs and feet flailing about while her shoes remained strapped onto the footplates.  It looked ridiculous, but there were a lot fewer “lost” shoes during that period.