Shopping for the second time around.

It has been 7 years since Andy and I walked in to Babies R Us for the first time with the intention of registering. Back then we eagerly walked the aisle zapping everything and anything regardless if we actually needed it or not. Because come on how could anyone turn down the cutest daddy and me bib? You couldn't. Of course we came out with a wishlist miles long because as first time parents, well you actually need everything.

We learned something in those early days of little man being in our lives. The first, half of the stuff we actually didn't need, that bib, the one we thought was super cute and just had to have, didn't last two cycles in the wash. And third, most baby accessories, were not meant for those with the use of only one hand. That car seat may be beautiful but it requires both hands to unlock and pull the handle up (most of them do.) and that pack in play, the one that is a pain in the butt with two hands, is nearly impossible to do with one hand. Believe me it became just a park and play thing rather than a pack in play, because it was a hell of a lot easier just to keep in stationary than it was to cart from house to house or place to place.

And here I had thought my biggest challenge was going to be changing his diaper with one hand.

Flash forward 7 years now, Anderson and I are standing in the middle of the same Babies R Us now looking for items for baby #2. Once again, the aisles are filled with things we will need again, because lets be honest the things with Logan are either long gone, outdated or were already hand me downs to begin with. And yes there are still plenty of things we probably don't actually need. We make our way down the stroller aisle when woah what do I see? Is this what I think it is? A stroller where all you need to do is push the button with your foot to pop it open, lock it and hit the road! Where was this years ago? I have to test it out to see if it truly does do what they say, and if it is as easy as it appears to be on the instructional video they had going. Wouldn't you know, it is that easy, that sturdy and yes I can do it...I think I am in heaven all over again.

And then they show us the pack in play that you simply push a button and it unfolds, and locks. Meaning yes I can do it. I practically do a little dance around the store. Yes they are pricey, we tend to forget how expensive the baby industry truly is. But I have a decision, do I go for cheaper because it is cheaper or more of a necessity for me because it is something I could actually use? The money just may be worth it. And because of it, the thought only makes me cry harder.

The lady looks at me as if I had grown three heads right there. She is probably thinking its hormones, and I let her think so. But I am crying because for once  I won't have to ask for help. I won't have to get so frustrated with something that I say screw it I will just stay home.

Because for once, something just may cater to me.

A new chapter in raising a disabled mom.

Little man and me.

A couple years ago I wrote about what it meant to be a disabled mom raising a child. The surprising advantages that it has–and yes there are advantages–and the fears. Yes there are those as well. I got a lot of reaction from the piece, and was one of my first heavily viewed posts.

It remains one of my favorite pieces I have ever written.

I came across it the other day, and as I reread it, I realized just how blessed I truly am. How that little boy still remains the same sweet empathetic little 3-year-old he was back when I wrote the piece.

You see just this past weekend I found him sitting around our living room, a hockey stick in hand. He had the contemplated look on his face and for a moment my thoughts weaved from should I be worried about him to he is up to something, and if he was do I even want to know? Still I watched as he pointed the hockey stick and started making blaster sounds around the room, which sound suspiciously like the Stormtrooper guns. He would stop every now and then to ponder something. What that was, I wish I knew. He would adjust his hands, shake his head and then move on waving the idea away. His mouth getting a work out as it flipped from side to side. Now would be a good time to figure out what is in his head.

I assumed of course it was just a game of imagination, of Jedi meets Darth Vader, clearly never figuring out what side he was on, as he was playing on his own. This is why he asks for a sibling. But as I watched him, I noticed he was using only one hand, the other balled up.

“Honey, is everything OK?”

“Well I was just thinking…” oh dear, this could be dangerous. “You know that laser tag place; well I know you can’t play or use the guns because of your hand. (The laser tag guns required two working hands) But I was thinking of ways you could shoot with one hand, Mommy.”

Even if I had no interest in playing, the moment was beautiful. Given the choice, I would absolutely play laser tag with him. We sat in the living room for a moment both of us enjoying the silence. “One day it will get better.” He finally states. It’s a moment I knew would come, just as I know I will have to eventually tell him what happened. But I love that he is so matter of fact, as if by saying it would make it so. Still I know I need to admit the truth, even if he is five.

“No sweetie, I will be like this forever.”

“You mean like always? It’s never going to?” Those grey eyes grow bigger with the realization of it all.

“Always.” And there it is, the silence once more. I do not fear rejection as I did years before when I told men. But rather I let it sink in.

“Mommy, if I had one wish do you know what I wish for?” I do not know where he is going with this, but we had just watched Aladdin, so wishes and Genies rank big right now. I’m thinking it’s to be a real life Stormtrooper perhaps or another trip to Disney World?

But what did my son wish for? “I would wish for your hand to be better, so you could be just like everyone else.”

“Oh Logan.” It is not every day a five year old would wish for his mom to be like everyone else. For a moment I do not know what to say. But then again, what do I expect this is the same kid that actually holds my right/bad hand while crossing the street. This is the kid that actually helps me in opening things if I have a hard time doing so.

“But you know what? Even if your hand never gets better, it doesn’t matter. Because I love you, just the way you are. And being a little different, well that is alright, too.”

Did I lose it then? Absolutely.

Why I hate dressing rooms....

I am standing in line for a dressing room. Around me teenagers are giggling at remarking about the end of the school year. Proms, graduation parties the same sort of feeling I used to get.  'I'll help you if you help me, you don't think this is too long do you?. Make sure it looks OK?'  They hug it out and march off into separate rooms.

The worker calls me up, grabs my dress, the one that is super cute and I am dying to try on and marches me back to the room.

Closing the door I slide off my jeans, my t-shirt and lay my hands on that very cute sundress. Please let this fit. Please let it look as cute on as it did on the hanger. Because we all know, it usually never does. These things are all so very typical of every female on the planet. We stare at pieces forever wondering things like fitting in to things. Believe me we do.

Taking it off the hanger I inspect it. And then I realize it has a zipper. Shit

I try not to panic, I can manage it. I can do it. I am like every other female. Except I’m not. I can’t use my right hand and so that simple zipper will eventually become a pain in the butt. Trust me on this one. Still I slide the dress over my head, and it looks oh so cute. Honestly it does. And yes, it does despite my worry fit me. I rejoice in my victory feeling the comfort of a win.

Now as long as I can get the zipper.

Twisting myself I contort my arm as far as I can. The more I do so, the higher the dress does, which is great I can inch the zipper up. But so does the dress, the moment I pull it down, I can’t reach the zipper to actually pull it up. It is an endless battle between my left hand and the zipper. The zipper was clearly beating my ass.

And people wonder why I hate trying on clothes.

OK so maybe turning the dress around backwards or to the side and sliding it around would work. Believe me I know all the tricks. And so I do. Except it isn’t made to be that kind of dress. And on the side, well I still can’t reach it. I think about calling out for help, but decide not to. What am I twelve?? And there is no sign that reads, dress assistant provided. Not that any stores have one. And I am sure if I begged someone some poor soul would have pity on me. But I always feel silly to ask for it.

 Beside me two girls are laughing and carrying on.Back in my own, I want to cry. Frustration begins to hit. And for a moment all I really want is to be like everyone else. I try once more before deciding the dress wasn’t all that worth it, I mean honestly if I couldn’t get it in the middle of a dressing room, how would I be able to do it at home on my own.

And so like I have done with so many other garments, I abandon it.

Cursing the dressing room on my way out.

Blog Post Challenge: Favorite Inspiring Quote

 

“I am only one, but still I am one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.”
― Helen Keller

 

Make all the joke about the woman to my left all you want. But from my standpoint, her words served as an endless amount of inspiration growing up as an American with a Disability. I didn't hear this quote until I was in high school, when my speech/debate teacher had me use it for a topic as a prose  and impromptu piece. I immediately feel in love with it.

 

While I am not one to dwell on the fact I was born without the use of my right hand, often at times especially growing up I tend to get frustrated with the things I can't do. The monkey bars annoy me more than anything really. Even today I find myself from time to time having to fight the urge to throw up my hands and just say 'screw you.' this is so not fair. 

 

And then I think of this quote, and how I may not be able to do everything and I may just be one person. But I can do things. Like tie a shoe with two fingers. And just because I can't do everything doesn't mean I shouldn't do the things I can. This meant learning to play two instruments, horseback ride. It meant trying out for theater plays and manage the softball team in high school, because while I couldn't exactly play softball, I could at least get involve in things any other way I could....

 

Today, this means maybe I couldn't have two kids back to back. But I am thankful to have the one child I have at the moment, and love him the best I can. It means teaching him to be empathetic and caring. It may not mean that I can teach him how to tie the shoe with two hands, but I can teach him how to read backwards and swing. 

 

So yes, I may be one, but I am not alone. And I refuse to not do something just because I can't do everything.

 

Go ahead make all the jokes you want. But Helen Keller, was a genius. 

 

The great ECV debate.

I am an American with a disability. And being that I have a minor case of Cerebral Palsy to the right side, I know not every disability is easy to recognize. While some are more apparent on the outside, others are hidden within. Even my own is at times hard to notice as I have accommodated and adapted so it is.

On a normal basis I do not complain about my disability, I do not point it out or make a big deal out of it. In the long run there are far more that have it worse than I do, need the accommodations and the help more than I do. I am usually the first to offer my seat up to someone who can't stand. A mother with a young child. Even if I know I have just as much right as the blind person I gave my seat to. I do not abuse, cheat or neglect the system.

Though I realize many do.

 If you are a frequent visitor to the parks you are fully aware with the endless debate regarding the subject of ECV's. Some see them as a nuisance, others see them as a necessity, while others see them as something that made this persons with disability outraged.These are those that view the ECV's and see them as an opportunity to cheat the system.

For those that aren't familiar with Disney policy regarding those with disabilities and bus services let me introduce you to them. Like any other guests, they are-and rightly so-allowed to use and have the privilege to use Disney bus services to get around the hotels and parks. They wait in line no different, unlike the system we all knew as a kid there are no different or 'short' buses. When one pulls in to the space-usually every 20 minutes-these guests and their parties wait to the side, as the cast member sets up the ramp, fixes the set and then assists them on, after the members of the parties are welcomed to join before the rest of the waiting guests are allowed on.  I have never had an issue with allowing those with disabilities on first, I can even understand one or two accompanied guests, especially if it is a guardian. But I will say sometimes I find when the party consists of 20 members, I tend to believe they like the rest of us who are waiting could actually wait...

On my latest trip down to Disney World,  I stood in line waiting for the bus to bring us back to the Animal Kingdom Lodge. In front of us, was a row and a half of guests doing the same thing. It was late, it was hot and it was definitely past half the kids bedtime. On the side lined up was 2 ECVs, a boy in a decked out wheelchair and a woman in a pretty teal wheelchair. As the bus pulled in ECV lady #1 backed up hers, as ECV lady #2  stood up walked over to the line and had her son sit down in the ECV we all waited as the cast member rearranged and worked out the bus so he could get as many people, and the ECV's on the bus as possible. It was a struggle with ECV lady #1, but he managed to do it. Then it was the sons turn who raced it around before plopping the ECV on the lift and waited as the castmember brought him on board. When it was finally on the bus, he was asked if he could move, to which he said yes and got up. Two down, two to go, the cast member went back down to see to the wheelchaired guests, and with his back to him the ECV guy began to dance around the bus. And the lady who was the original ECV driver, not only walked all over to the walkway, but carried three strollers and climbed the stairs. The family then gave high fives to one another as the cast member talked to the wheelchair bound guests.Clearly not all of them needed that ECV rental.

The cast member was attempting to tell the wheelchair bound guests that they would have to wait for the next bus. The mother would not have anything to do with it, it took a little bit of determination on her end before he said he would see what he could do and finally managed to get her on as well...the teal lady had to wait for the next.

Maybe this issue wouldn't have gotten me so much had it not been for the fact there were two people who clearly did need the assistance. Maybe those two legitimately had reasons for the ECV's rentals, this we will truly  never know. But from where I stood in line, the lack of empathy and the appearance that these people thought that they somehow were above anyone and deserved to take advantage of this right and services was clear.

No not everyone abuses this sort of thing. There are several out there that need them and do not use them in this sort of fashion. But its families like them the kind that use them to take advantage that give those who actually need them, the bad rap that they have.

But until something further is done, this will continue.

Although I do have one final thought to those that decide to use it to gain advantage. Karma has a way of coming back on you.

Raising a disabled mom.

From the moment we find out that we are going to be parents, worry begins to kick in. Doubts and fears we never gave even half a thought to creep into the back of our heads. What will the kid look like? Will I be a good parent? Will I know what to do in (insert situation) We worry about everything from feedings, to late nights to disciplining actions. And I am/was no different, except there was another worry that crept into the back of my head.

Will he love me for me? Will he accept me for what I am?

This may seem like an unusual fear, but believe me it was a legitimate fear. As a mother with a disability of her own I feared I wouldn't be able to really provide my kid(s) with the kind of same love that others could. I know there wouldn't be things I couldn't do with him physically-like show him how to cut meat. Or tie a shoe. Yes I could give them unconditional love, and read stories to them. But sometimes late at night I stared up at my ceiling and wondered if it would really be enough.

I feared that they would grow up hating me because they would see all the other mothers in all their normalcy and wonder why they weren't able to have a mother like little Johnny's. Or Sammy's. Will they get teased as they grow up because of this? Believe me kids are cruel. I know this first hand. I know what its like to have a staple gun to the face, to be pushed and shoved into things, down things. To be called names by classmates. They don't understand, they will tease, they will torture and they will laugh. And will my own kids be the subject of such bullying? Because of me? I hated that thought.

I never once thought that my kid(s) would be the one to bully. To act out on those that are less fortunate than they were. I didn't want to think they would be the kind to do such horrible acts on anyone. Maybe I didn't think this because deep down I feared this. Yes, that's exactly it. I would rather wish for them to be the kind of kid to stick up for anyone. To help those kids that remind me so much of myself.

Would he understand?

Explaining it to adults is hard enough. How does one explain it to a kid? Would he even get it? I knew I was years away from even really having to address this, and for the first few years it will be referred to as simply my bad hand, as it was referred to during the my years of babysitting. But I knew eventually it will have to be addressed.  And when it does, will he actually understand? How do I explain? Or will there just be this unspoken agreement that he won't know.

Yes I worried about all of these things.

But something happened last night that I had never expected. Last night, I discovered that there was in fact a positive in being a mother with a disability. You see as I was walking him up the stairs last night I held out my left hand for him to grab on to when he stopped me.

'No, no no mommy.' He said shaking his head and looking up at me with those beautiful grey eyes. 'I want to hold your bad hand. Is that ok? I can hold on to it right? I like this one.' I stuck out my hand, which was stiff but still he grabbed onto it like it was soft and warm and as if it didn't bother him in the least. The moment seemed to freeze as he looked up at me and smiled. 'I don't mind holding this hand mommy, do you?' He held onto the hand the entire two flights of stairs and only let go when he hit the bedroom. I couldn't remember the last time anyone had given that hand so much attention.

As I walked down the stairs, I thought about all those fears and negative thoughts I had, had a couple of years ago and how the one thing I hadn't counted on was a positive. And here it is. My disability is normal to him, he is growing up as if its his every day life. I am raising him to be compassionate and understanding and loving. He is growing up knowing that beauty and ability and love comes in all forms.

I know there are other fears ahead, girls and dates. Getting hurt on the ice. And in the future I am sure they will have to be addressed. But being accepted for who I am, is no longer one of them

Then you might know what its like.

 ''God forbid you ever had to walk a mile in her shoes
'Cause then you really might know what it's like to have to choose
Then you really might know what it's like''
-Everlast.

Ever wonder what its like? To have a disability? For those reading this many may never know what it would be like personally And in a way, I pray those that are reading will never have to know.

Why?

Because as much as I try pass it off, the ugly truth is there often times its one of the most difficult things anyone will have to deal with.

But do you ever wonder what its like? For just a day? A month? For a lifetime of dealing with a disability? 

Well let me be the first to open your eyes to what the truth is. Born with Cerebral Palsy to the right side,  I consider myself  one of the fortunate ones. I say this because it  has mainly only affected my right hand. Believe me I know how lucky I am for there are several out there that are in far worse conditions than myself. Other than the fact I can't wiggle my toes-which annoys me more than anything-the rest of me, while still affected, is for the most part pretty normal. Still one never realizes how important something is until one can no longer use it, or in my case never been able to.

Which brings us back to what its like.

For starters, nothing is easy. Like tying a shoe. I wore Velcro shoes for so long until a therapist taught me how to tie my shoes with two fingers back in elementary school, for a quick second it made me the most interesting person around. Still they never were tied tight enough and always came loose. But hey its a skill that most will never even attempt.

Its having to learn to type with one hand, which may not sound as complicated as tying a shoe. But with all this modern technology, my fingers often at times can't keep up. Nor can I hold the device in one hand, and type with the other. A couple months back my company offered me a new keyboard. Which was fabulous since I really needed a new one. Until I realized that half the keys were on one side, the others, on the other side. A nice big gap lied in the middle of it. To wide for me. I quickly declined, and to this day am still dealing with the old keyboard.Interesting,  its the same sort of reason I gave up on playing most video games a long time ago. 

For the record, I can type somewhere around 80 (give or take) words a minute with one hand.

Its trying to change my two and a half year old son's diaper when he is one active toddler. Thank god the diaper stage will be coming to an end shortly.  My latest challenge is bringing a sleepy little man up the stairs, and if he has fallen asleep in the car seat, trying to get him out, unlocking the door and juggling everything else that we left with. This is also my main reason that we want/need to have a little age difference between kids, should we be blessed with another one. Changing and handling a kid with two hands I am sure is stressful enough. Now take out one of the hands...it is doable I assure you.

Its putting on jewelry, doing your hair, shaving in the morning. The jewelry thing is not that big of a deal when you wear the same thing and don't need to change things. But the hair and the shaving thing, to this day still brings up a challenge. Curling the hair is usually out of the option, as is braiding, and half the other hairstyles of the day. If it wasn't for the fact I think I would look horrible, I would contemplate shaving it all off. And yes, lets not go into whole shaving thing..that is a whole other topic that is probably best left un-talked about.

Its learning how to drive with one hand, doesn't sound horrible, until you realize its my left hand that is 'normal' Still not horrible but dif. a challenge, and eliminates certain car models and stick shifts. And motorcycles. If your in to that sort of thing.

Its never driving through a drive-thru because, well you can't eat and drive anyway. So what's the point? Seriously I have never gone through a drive thru myself unless I am with someone else and they are driving me through one. 

This is also probably a good reason I don't smoke. I need my hand to do three thousand other things.

Its going through the salad bar line, when they don't have a ledge and you have to ask for assistance even though your a grown adult. After all, you try holding a plate and serving yourself with one hand. Considering I hide my disability pretty well, the looks I have received at times aren't the most friendly of sorts. I assume they think I am lazy or a diva. Neither of which I am. I assure you of this. 

I hate buffets for the same reason.

Its going through job interview after job interview wondering if this will have any impact on whether you get the job or not. Knowing that it probably will. And should you get that job, its knowing that your advancement isn't going to be as likely as Jo Smo next to you..

Its just the facts of life, and one you may as well get used to.

And its going to class and hearing a classmate sit there and use the word handicap a thousand times over and over, and knowing as much as you want to punch the living crap out of her, you know you can't. Jail doesn't sound appealing, and she is about two of you. Besides this is something you hear on a daily basis. No matter how much you try to convince them otherwise, you know you won't be able to  So why bother?? You go on about your day, and the next as if nothing is wrong. As if you are just like everyone else. But every where around you, there are constant reminders.

The right handed water fountain. The security doors that you have to swipe, even if you have a million things in your hand. And its the classmate in the class the following night who decides in the middle of your presentation to refuse to help when you ask her to. 

And then laugh.

And you walk out smiling, because you don't want them, can't let them see your pain, or your own embarrassment.  But as you climb into your car, what you really want to say is for one day, wouldn't it be nice not to have to worry about any of this.

For one day. Wouldn't it be nice.

To just be.

Like everyone else.