On his level

Sometimes it’s hard to think of positives about being in a wheelchair.  There’s clearly all the old jokes (i.e. the good parking, not having to stand in long lines, etc.).  But real positives, it’s hard.  I don’t fall nearly as often, so that’s definitely a big positive.  My knees send me a Christmas card every year since I became paralyzed as a show of gratitude.

But this morning, it hit me.  I’m on the same level as my kid.  Literally.  (Sometimes figuratively too cause I have a really juvenile sense of humor and a weird obsession with PeeWee’s Playhouse.)  Because I am about 3 feet tall when I’m in my chair, I’m much closer to toddler height than all the other adults in his life.  It’s easier for him to see some of the things that I am doing than it is for him to observe other adults.  This morning he was watching as I brushed my teeth and he grabbed his own toothbrush and started brushing too.  (His brushing is really just putting his toothbrush in his mouth for 3 seconds and then clapping jubilantly over what a good boy thing he did.)  But when he stopped, he still watched as I brushed.  So I exaggeratingly showed him how to brush all the teeth.  He was enthralled.  The hubs was brushing his teeth at the same time, but the hubs is 3 feet taller than Little Mister.  It’s not as easy to see what dad is doing as what mom is doing.

When I talk to him or try to teach him something, I don’t have to bend over or crouch down.  I’m literally on his level.  I think that’s a really cool thing now that his baby mind is learning nonstop.

So there you go: a way in which being a parent in a wheelchair is not a terrible thing!

Flamenco dancing

I’m never going to Flamenco dance*. I had that realization yesterday as I was driving down the street.  I was listening to Rusted Root on the radio, which somehow made me think about the time I saw Ozomatli play a free show, which then led me to thinking about Spanish guitar, which led to flamenco.  This thought process took maybe 45 seconds start to finish.

And that’s when it hit me.  I’ll never flamenco dance.  Now, before you start wondering if I was big on that PP (pre-paralysis) (also, are you wondering why I used an abbreviation, when I immediately wrote it out?  I’m wondering that myself….), the answer is: not really.  It’s not like I had a huge bucket list and flamenco dancing was on it. I’ve always appreciated the beautiful dance.  It’s strong and powerful and seductive without being an outright sexy (read: gyrating) style.  It’s beautiful and poetic.  And I’ll never do it.

To answer another burning question, I’ve never really been a good dancer in general.  I probably should have gotten into line dancing when I had the chance, because that was about my ability level.  I’m good at memorization, slightly lacking in rhythm.  Most of my dancing occurred in my apartment when I was single, and consisted of twirling to 70’s greats like Joni Mitchell or Janis Joplin.  Twirling just seemed to fit the la-de-da, la-de-da-da’s of Me and Bobbyb McGee.  I was also known to mosh around to Rancid.  But something with technique and skill?  That was not in my wheelhouse.

But now I’ll never be able to try.

And before you get all “Stop being a Debbie Downer” on me, realize that I’m overly positive about my situation.  There is so much I can do.  And there is so much that I do do [12 year old sense of humor break: excuse me while I laugh at that for a few seconds].  And I’m grateful for all of that.

It’s just a sad and shocking realization when something is irrevocably taken off the table.

 

While writing this, my snooping husband looked over my shoulder and asked “What’s Flamerco dancing?”  I responded “Um, you mean flamenco?”  He replied “You’re far away, I couldn’t read it.  What is flamenco dancing?”  So, I realized that maybe not everyone knows what flamenco dancing is.  You know, people who have been living under a rock.  So I’ve added a video of a beautiful dance.  You’re welcome.

Hell on Wheels

I have a friend who is a fellow defense attorney [I know, I know…”friend” and “attorney” don’t usually belong in the same sentence. But he’s actually pretty cool.]  who has restarted a group email list for all of the defense attorneys in the area. The purpose is to support each other through problems and through victories. My friend, let’s call him Snappy Dresser (because he is always very impeccably dressed) puts a ton of work into his emails. When someone has a victory, he doesnt just say “so and so won such and such case.” The emails involve a superhero-esque name and backstory which turn into the saga of what great feat was accomplished. Yes, he could probably use a hobby or a dog, but I actually enjoy reading his emails.

So, the reason for my blog. I had a small victory in court recently where I got a case dismissed. Nothing huge, but he wanted to write it up. He told me to choose my Nickname and sent me a list of really great heroic names. I liked “Black widow”. I liked “the Assassin” [mostly because it says “ass” twice and I have the humor of a 12 year old boy.] I liked “Rogue” mostly because it’s applicable. But none screamed “ME!”

I sent him a text. “Can I add a new one? Hell on Wheels.” I received a text back. “Hell on Wheels. Seriously?” Of course I was serious! I appreciate a good, strong wheelchair reference or joke whenever possible! He called me. He was worried people would think he came up with it and give him a hard time. I convinced him it was a good idea. He said he was forwarding any emails to me to handle if people gave him a hard time about it.

The email went out with my new nickname solidified in black and white, and with the caveat that I chose the name. And I am so okay with all of that! Personally, I think it’s a strong, fierce name. And as people who really know me well would agree, it’s pretty fitting!

 

Fear, fear, go away

I’m not sure if I’ve admitted this on here before but I have a confession: I used to be afraid of my kid.  Before the Little Mister was born, I was wrapped up in how exciting it was going to be to have a kid.  I pictured all the fun adventures we would go on.  I pictured having a little mini-me who would play games and laugh at my jokes.  I pictured the little guy who I’d get to dress in super cute clothes and who would justify my Ninja Turtle obsession.  Life was going to be good with the little dude.

And then, after our long journey, he was here.  Before I knew it, this slimey little guy was in my arms and I didn’t know what to do.  I’d barely ever held a baby before that moment.  And now, in a matter of seconds, the nurses took this kid and put him in my arms and said “Congratulations” before packing it up and leaving the room.  OK, it wasn’t quite like that, but it felt like that.  After all the waiting, he was in my arms and I was now responsible for a human life.

I had no idea the amount of love I would feel for this dude the instant he was born.  Or the amount of fear.  When we got home from the hospital the hubs was only home for a few days before he went back to work.  And then it was just me and him for a large part of the day.  We had (still have) an awesome nanny who helped in the mornings.  She helped take care of him, did his laundry, changed his bed, did so much every day.  But then in the afternoons, it was me and the Little Mister.  And that scared the living daylights out of me. I wanted to do as much as possible with him because I wanted him to get used to having a mom in a wheelchair.  That was hard, of course.  I had all the normal concerns of a new mom, but also a few extras which apply to mom’s with mobility disabilities: holding him while moving being a main one.

There are several things which would hurt my feelings.  When he was real young, he liked to be held while a person was standing when he was crying.  That obviously couldn’t happen with me.  It broke my heart when I couldn’t get him to stop crying and his dad, nanny or grandma would grab him and walk around and he was suddenly content.  Or, sometimes when I was home alone with him and I had to transfer from my wheelchair to the sofa, and I set him down on the sofa to wait while I transferred and he would just look at me and cry like I was abandoning.  I tried to explain to him that I can’t hold him and just stand up like other people can.  But he was stubborn a baby and didn’t understand.  He just felt severe separation anxiety in that 45 seconds of being alone.

It got to the point where I was literally scared to be home alone with him.  It was hard.  It was exhausting.  It was emotionally draining.

But then things began to change.  As he got older, he started to understand a little more.  I would wake him up from his nap and bring him out to the family room for a post-nap drink and snack.  I would put him down in the chair so I could transfer.  Until about 14 or 15 months he would cry when I set him down.  But then, I started making a game of it.  And after a few times of “throwing him” into the chair (I would lift him in a high arc from my lap to the chair and make a falling sound) he thought it was hilarious.  No more tears.  And now that he’s walking, I can put him on the ground where he waits by the chair for me to transfer.  After I transfer into a chair in the family room, he raises his arms for me to pick him up because he knows it’s milk and snack time on my lap.  No more tears [from either of us].

He’s also gotten so good at going out in public with me.  I was so scared to go places alone with him.  It’s easy to drown in the “what ifs”.  What if he won’t sit still?  What if he has a diaper accident and there’s not an accessible bathroom?  What if people look at us funny?  But I guess you can’t really give in to all the doubt and fear.  Today, Little Mister and I had an awesome adventure.  We had an entire morning to ourselves as his nanny had the day off and the Hubs was in meetings.  So Little Mister and I went to Hobby Lobby where we spent an hour just looking at everything.  He was loving the bead aisle, with all the colorful, shiny things to look at and different textures to feel.  Then we went to the mall where he played in the soft foam play area.  His idea of playing in public is often just standing there watching all the other kids run around.  He’s a people watcher, like his mama.  When he was done, he walked to the exit and tried to leave.  I tried to usher him back in several times, but he was done.  He sits on my lap so nicely that I didn’t even wrap him while we rolled around the store.  It wasn’t until we were exiting to the parking lot that I tied him back to me.

I don’t think there will ever be a time that parenting from a chair will be easy for me.  I think the obstacles will just change.  But I am learning that he and I will both adapt.  We are learning how to get through this all together.  I’m just so lucky that Little Mister is such a great kid and so willing to learn.  He’s too young to really get it yet.  He just knows that I’m his mama and this is our normal.  And I’m glad that I don’t let the fear overwhelm me.  Because he is my mini-me who loves to play games and laughs at my jokes.  And I’m glad because we had such a fun adventure today and I look forward to all the fun mom-son adventures to come!

Getting rid of the lazies

I love working out.  I think that I have made that clear over the past year since I joined my gym.  I mean, maybe I don’t love it as much as I love shopping or watching TV.  Or eating.  But, I do really love it.  I love the feeling I get after a good workout.  I love the soreness that I get after a good workout.  And I love buying workout clothes because again, I love shopping.

But, it’s easy for me to fall into a rut and get super lazy.  Last week was one of those times.  I’m not entirely sure why I was so lazy.  I just had absolutely no interest in working out.  I use the excuse that I was busy with work, which I was.  However, I still managed to find time for all the other activities I mentioned (i.e. shopping, watching TV.  And don’t get me started on the cake I had over the weekend!  Yum!!).  I just wasn’t feeling like the gym.

The cool thing about Ninja Trainer is that he didn’t fight me.  He strongly suggested that I get my lazy butt into the gym, but didn’t give me a super hard time about it.  I think he understood that I needed to push myself.  He can only do so much.

I decided to get over the lazies and get back to the gym this morning.  Since I’d taken the time off, he went kind of easy on me. (So he says anyway.  My sore arms beg to differ!!)  But, I can tell that he wasn’t pushing me.  I know when he’s pushing me because I can see the excitement in his eyes when I’m going above and beyond.  And when I’m really killing it, I get a loud “Woo!” Needless to say* I did not get a “Woo” today.  And I know that I didn’t deserve one.  I know that I didn’t kill it.  I did do well. (See above about sore arms!!) But did I do my best?  Well, I guess my best after being lazy for over a week.  But that’s not as good as I can do.  I need to not be lazy.  Someone once told me that you never regret going to workout but you will regret not going.  And that’s true.  I know that I’m going to get lazy again.  But I have to push past it and remember how good it feels after!  And I love seeing results, even if other people can’t really see what I see.  And I want to keep pushing so I keep getting the exclamations from Ninja Trainer, because then I know I’m killing it!

Squint hard and you can see some defintion!

Don’t be so hard on yourself

Life is hard.  Like, really, really hard.  Work, bills, loss, stress…it all adds up.  Life is also beautiful.  Friends, family, kind deeds, thoughtful words, the beauty of a sunset.  It can all be beautiful.  It’s not one or the other.  It’s not so black and white.  But sometimes, it’s hard to see that.  When you’re on a high it’s hard to remember that life can have it’s downs.  And when you’re down, it’s hard to think you’ll ever get back to a happy, or even normal, place.

I try to be a positive person.  I am good at finding silver linings and positive twists on things.  And I try to share that positivity, both on this blog and with people I know.  But it’s also really easy for me to go to a negative place.  You know, the place that’s filled with “I can’ts” and “I miss” and all the other things that one should try to keep at bay.  But, why should you keep those negative thoughts away?  If you ignore the negative I think they creep back up and overwhelm you.  And it’s easier to swim in the shallow end of a pool than in a tsunami.  (I don’t know if that exactly made sense, but I think you’re getting what I’m saying.)

Loss of mobility is hard to deal with.  Yes, I can adapt (and have) pretty well.  But it’s still tough.  There are things I can’t do anymore.  That’s something I have accepted.  I do my best to find a positive side to things I can’t do (i.e. I can’t walk, but at least I don’t fall and scrape my knees up like I used to) when I can.  But there are still times when the sadness creeps up and I get emotional.  And then I look at everything I can do and recover from the sadness.

Recently I wrote an article for a magazine and I tried to cover this very topic in it.  I talked about how the first time my son went in a pool, I wasn’t able to be in it with him.  We were at my aunt’s house for a family party and there is no lift at her house.  My husband and mom took my son in the pool and baby boy had a blast!  But it was really, really hard for me to not be a part of that.  Sure, I could have gotten in the pool (you know, gravity) but it would have been hard to get out (again, gravity).  And then it would have been about me and my safety which would have taken away from the Little Mister’s first pool experience.  In the article I wrote about how sometimes you just have to accept that there are some things you can’t do and find ways to turn them into a positive.  In the pool example, I mentioned that I took one million photos of the Little Mister in the pool to commemorate his first swim.  If I had been in the pool we would have missed out on those photos.  See, positive outlook!  I was still super sad, but at least there was some positivity that allowed me to move on and not be overwhelmed.

The editor told me that I was being negative and said something along the lines of “where is your can-do attitude?! There are public pools with lifts that you can use.” That wasn’t the point.  I do use public pools with lifts.  I love swimming.  I’m part mermaid.  And I appreciate that the editor wants to portray a positive image.  But the point is that I was in a place that didn’t have a lift and I missed out and I was sad.  But I dealt with it and moved on.

And I guess the point of this blog is that if all people do is portray positivity it makes the people going through hard times feel alone.  Or misunderstood.  Or unrelateable.  We all have down days.  We all have things that hit us the wrong way and make us sad.  It’s human nature.  And when you have a disability there are things that will come up that you can’t do that will make you sad.  And yes, there are ways to adapt.  But sometimes that isn’t an option.  And to ignore this publicly is to make others feel that they are all alone.  I’m here to say that you are not alone.  We all struggle at times.  We all get down at times.  And, even when you’re in the thick of it and feel that life is going to overwhelm you, it will get better.

And acknowledging that isn’t negative. It’s real.

First wheeled trial

Last week was big for me: I did my first jury trial in a wheelchair.  It’s crazy that I’ve been in a wheelchair for 2.5 years and it was my first one.  I say it’s because I am really good at pleading out cases (which is true).  But, I’ve also been hesitant.  The ones that I knew for sure were going to trial I was kind of pushing off.  And then the ones that I wanted to go to trial sooner ended up getting pushed for reasons beyond my control.  Such is the chaos that is the legal profession.

But last week, a case was ready, and away we went.  I was nervous.  Not for the case.  I felt as prepared as possible for that.  I had a whole other set of worries.  Would the jury be preoccupied with my wheelchair to listen to my arguments?  How was I going to take notes and address them at the same time?  I can’t use the podium because they’re wooden and set to a standing person’s height.  Not very wheelchair user friendly.  And things like standing as a way to show respect to the judge or jury.  Those were out the window.  Would they understand that I was still trying to be respectful?  Before my so called wheeled life, I would stand every time I addressed the judge.  And I would stand when asking questions.  It was professional.

But, I pushed all that aside so I wouldn’t be distracted from the main goal: winning.  The jury didn’t seem to react outwardly to my wheelchair.  They seemed to be focusing on the facts, which is exactly right.  Though, in my closing arguments, my investigator said a few of them were watching intrigued as I put my pointer and whatnot in my cup holder (I call it my “holster”).  Apparently they thought that was clever.  I hope they’re as amused by my arguments as they were by my cup holder.

Overall, it wasn’t that different from when I was walking.

Negatives:

-Couldn’t stand for the jury or judge

-Couldn’t use the podium

-Couldn’t bring in my normal wheelie bag to carry all my stuff, so I was limited on what I could bring in.  I have some big cases coming up with way more files.  I’m going to have to figure something else out.

Positives:

I love my job and I’m doing it.  Nothing can stop me.

Ladies and gentlemen, the positives win.  Now I go back to waiting for my jury to return a verdict.

P.S. Shout out to the hubs who taught me the difference between an ax and a hatchet.  There was one involved in this case and that was actually a pretty big difference.  I was able to educate the judge and DA.  So, thanks hubs!