It's Mommy's Turn

I’m disabled. More importantly, I’m a mom. When I was finally given a release date from acute rehab, all of my anxiety surrounded around my son. How am I going to change a diaper when I can barely pull my own pants down? How am I going to make him something to eat when I can’t even feed myself with my right hand? I had horrible visions of us both with mashed peas smeared all over our shirts and pee running down both our legs. Today I’ve been home exactly 30 days. It’s been a challenge for all of us to get used to mommy still being kind of broken, but it’s working out well. My son will be 2yrs old next month. At this age, there is no need to really explain because he wouldn’t understand. Instead, my husband and I have had to revise some ground rules around the house for safety, but for the most part life isn’t that different for our little guy.

The biggest changes for him so far are that mommy can’t pick him up when he falls down, and I can’t carry him up or down the stairs. He doesn’t think it’s a big deal. If he falls and hurts himself, I come to him and hold his hands. He was confused by this at first, wanting me to lift him into my arms, but now he is ok with it. Daddy has to carry him upstairs to bed now. Instead of asking for me, he runs to me for a good night kiss and says “night night mama.” I used to do all the bedtime duties because I worked fulltime during the day. Now that I’m on disability, I get to be home with him all day. It’s amazing fun.

I was once so nervous about how this was going to work. Now I’ve learned that children adapt quickly to new things. While I worried about how to do for him, it never occurred to me how much he would do for me. He isn’t used to having me home during the week. Now that I’m here, he wants me to read him stories, color with him, put on his favorite shows…all the usual fun kid stuff. Yes, it’s friggin’ awesome spending all day goofing off. But it’s even better than that. All this kid stuff is therapy!

My OT asked me if I have been doing my exercises. I said yes, my son makes sure of it! Reading stories means I have to practice using my bad hand to hold a book and turn pages. Turning pages requires dexterity in the fingers that I don’t quite have yet, but trying it everyday is great practice for my brain to remap that function. All of his favorite shows involve singing and dancing. He tries so hard to mimic the dance moves on TV so I do the same – awesome physical therapy for arm and leg! Building with wooden blocks and driving hot wheels have done wonders for my arm.  

I still can’t hold a fork, toothbrush, or pen with my right hand, but check out what I was able to do with a big fat stick of sidewalk chalk!

I made myself go from A to Z. My boy practiced saying his ABCs while mommy practiced writing again. I’ve been playing with my kid for a whole month now. Yesterday I went to write something on the family whiteboard, which is always with my left hand out of necessity. This time, without thinking about it, I started writing with my right hand. I managed 3 letters before I realized what I was doing. Of course the markers are big and fat so they’re much easier to hold than a pen, but up until now I couldn’t do it. I stood there staring in disbelief. I told my OT about it later and he said it’s called spontaneous use which happens when your brain starts figuring out how to communicate with your body again. I have to admit I couldn’t do any more than those 3 letters. (no, they weren't F-U-C...) It’s hard to describe the bizarre sensation I get in my hand when I use it, but it becomes so overwhelming my hand freezes up. It’s similar to trying to run in deep water, only it’s my hand. At least that’s how it feels right now while typing. Oh yeah…I made myself use both hands to type this.

Mommy is still broken, but a little boy’s tenacity and his cluttered toy box are going to put me back together again, one jumpy-jump-jump at a time. Quit breaking the damn crayons, it’s mommy’s turn.

Help Wanted. (Not.)

I was sitting in the waiting room in my wheelchair, balancing my purse, a folder, and some more paperwork on my lap. I cautiously opened the folder, which began to slide away from me, and tried to place the papers inside; a very simple, no-brain task for an able bodied person. My right hand was almost useless and my right leg kept flopping to the side, refusing to cooperate with my other leg to form an actual lap. I came pretty damn close to dropping all of it on the floor. As I finally got the paperwork to slide inside the folder I heard a woman say softly, "Good job. I almost got up to help you but realized I wouldn't be helping you."

That is one of the coolest things anyone has said to me. She is absolutely right. While there are things that I truly can't do yet, there are a ton of things I can do if I focus and give my body an opportunity to do them. What I certainly don't need is someone assuming I can't or worse, not giving me time and personal space to make an attempt. When you're disabled, people want to be helpful. But they have a hard time understanding when help is warranted.

I’m learning to hold things again, which means I’ll be dropping things in the meantime. I’m learning to walk again, which means I’m going to stumble. No, I don't need you to catch me or make me sit down. I need you to let me be. It may frighten you to know that I might fall and truthfully, I already have. I slipped right off the couch and landed on my bad knee. Yes, it hurt like hell. But guess what? I could feel it hurt. Guess what else? I managed to get back up onto the couch by myself. Tired and sore isn’t exactly tragic. I understand it must be hard to watch me struggle at times, but it is in the struggle that I learn. Ask me if I need help and I’ll answer honestly. Otherwise, let me be. I don’t always know if I need help, but I appreciate the respect to allow me to assess that for myself. Thanks.

Let's Do This

I was looking forward to my first day back in rehab because I wanted to see what they thought of my progress. I was on my own practicing for 2 weeks and I was beginning to doubt if I was doing an adequate job at home. First visit with new therapists is always an evaluation. They need to assess where you're at so by the next visit they can hand pick the instruments of torture most suitable for your particular disability. Humans are naive and gullible by nature so we quickly forget there is an agenda and think "hey this is pretty easy! It doesn't really hurt so bad." Duh, stupid. This is the eval. They're assuming I can't do squat just to humor me for their little tests. A series of tests I began zipping through. The therapist said he was surprised to see how well I was doing. He hadn't planned on testing coordination since he thought I wouldn't be ready. While he went to grab the coordination activities, I took a moment to pat myself on the back for being so awesome.  He came back with a big wooden block with 12 holes in it. I had to put 12 little wooden pegs into the holes one at a time. It was challenging, but I managed to do it in 44 seconds. (I told you. I'm awesome.) So that was it. I showed them I could transfer (get from wheelchair to bed), hobble with a walker, and stick pegs in holes. Piece of cake.

Today was my 2nd visit with OT. As he wheeled me down the hall, we approached the room where I had displayed my awesomeness, only this time we kept going. Wait! Where are you taking me?! Ah shit! Folks, this is when reality hits. Last week was an eval. Today he had chosen his weapons wisely: a yard stick, a beach ball, and most gruesome of all, my own body weight. Oh the humanity! I lied on my back and raised the beach ball up and over my head and endured the horrific, sharp, spastic pain that ensued. 45min of various movements and stretches and tears. When you can't feel much in your joints and suddenly feel popping and stabbing, it's scary. The brain wants you to stop. The sadist wants you to keep going.

I was surprised that by the time we were done, my shoulder felt great! No really, it did. All the work I've been doing at home has been great for forward range of motion and hand movement, but my poor shoulder has been neglected. The pain will always be bad if you don't attempt to work through it. Pain makes us shy away from that which can help us. While it's far more easily said than done, it needs to be done. So do it.

Suck it Up

My right foot and I are not on speaking terms at the moment. Since I had my stroke, my right foot has felt like I’m wearing a sock that is way too small and someone is pulling it on tighter and tighter against my will. It’s also swollen nice and fat, apparently a byproduct of its lack of use. Useless, fat and uncomfortable…I think I’ll name it Bertha. I think that’s a name fit for a fat old hag. I don’t know what her deal is, but she is hell-bent on betraying me. I’ve been dragging her sorry ass around for over a month now and it’s getting old. Today was a rough day. And that was just my foot. My so-called good arm suffers from severe carpal tunnel syndrome. So while my right arm is still too paralyzed to be useful, my left arm spent most of the day burning and going numb.

Yeah, yeah…suck it up. It could be so much worse. Today was not painful because I have it so bad. It was painful because I pushed myself harder today than I have since this all went down. A walker requires both hands which is fine if you don’t ever need to hold anything while walking. I was so busy trying to do little things for my son that I actually ditched the walker at one point. Granted, I almost fell a few times but I started strategically planning my route to lean against walls, grab on to chairs, etc so I could get his food from the kitchen to the table. Then I had to get to where his bibs are, coerce him to come with me to the table, and help him climb up on a chair (highchair was obviously out of the question) so I could feed him with the good arm that was going numb from the carpal tunnel. Whew! And that was just breakfast.

I don’t know what I was thinking. Then again, I guess moms don’t really think about why. I won’t bore you with a play-by-play of the rest of my day but it was basically a lot more of the same sprinkled with a few trips up and down the stairs. I even managed to get 4 full size pillows and a large blanket up the 15 stairs to our bedroom in one trip; One long, painful, sweaty, dangerous, albeit stupid, trip. So yeah Bertha is pretty pissed off at me right now. I’m sure she’ll be handing me my ass tomorrow.

“There is no try, only do.”   ~Yoda

Could be runnin' this $hit

I’ve been home 5 days now. It’s so much different than being in the hospital or rehab. We baby-proof our homes, but we don't mommy-proof them. The people that do help are left to wing it and hope they don’t hurt you or invade your space. They inevitably do of course. If you’ve had a toddler in your life, you know it’s impossible to sit or lie down without becoming an instant indoor jungle gym. At first it was scary. I can’t feel all of my arm, leg, or foot so I couldn’t tell if my son was getting a little too crazy stepping and climbing on me. Then I realized that every time we play together I can feel sensation just a little bit more. Yeah it hurts like hell. But with every cringe I know in some twisted way it’s helping me.

I’ve also found that swatting my son’s fingers away from his nose has made for some great OT (Occupational Therapy for you noobs.) At first I could only swat; now if I concentrate really hard I can make a half grip with my bad hand and snag his forearm to yank his hand from his face. (Of course if the kid fights me, he wins which may be setting a dangerous precedent around here.) Luckily he’s a rambunctious boy who loves slapstick. He’d gladly pick his nose for half hour just to giggle at me trying to stop him. So yaay boogers! Or should I say “thera-boogers…” *snort*

I guess this makes it official. I’m a cripple. I’ve only been out in public once, so I’m not so sure I feel different. I notice other disabled people get treated nice probably because everyone feels sorry for them. But then I was thinking of how hot girls always get preferential treatment, which gave me a fabulous idea. If I continue to lose weight, maybe JUST MAYBE I could be a hot, crippled chick! Ah dude! I’d be running this shit! Just sayin’. Do you think it would be illegal to color red lips on my handicap placard?

Home Sweet Home

I’ve been home over 24 hours now. It feels good but it’s strange too. It’s my home but I have to learn my way around all over again. I spent 2 ½ weeks preparing for this. I told my PT that I lived in a 2 story condo and there is no way anyone was going to stop me from getting upstairs. In PTese that translates to “I’m a masochist. Bring it, bitch.” And they did. I practiced everyday with a walker. In the beginning I could hardly stand, but 3 hours of therapy a day began to make a difference. Last weekend I finally managed to walk – well more like hobble – 100ft. I thought I was going to pass out from exhaustion. I can’t move my ankle at all so I had almost no control over where my foot landed. I kept kicking the walker and damn near kicked it out from under me. But since I sucked it up and made it to the blue tape line on the floor, PT said “That was great! Now let’s try stairs!” Um…seriously? Oh right. I wanted this.

I think it was exactly a week ago that they had me step up on one of those Step Reebok aerobic step things just to try. They placed it in between 2 parallel bars so I could hold on – not with both hands by the way, as my right hand is useless. My husband and I giggle whenever they mention me on the parallel bars. As if I’m going to wheel myself into the gym wearing a sequined leotard and execute a wicked cherry drop from 20ft in the air, then land a flawless dismount on one leg with my left hand perfectly poised in the air. Come on. You know it crossed your mind.

I eventually graduated to real stairs. Not a full flight of stairs, but 4 stairs. I’d get so dizzy by the time I got to the top, sometimes resulting in vertigo. I’d take a 2 hour nap every time we finished a session.  I’ve been home now over 24 hours. I keep forgetting to count the stairs but there are at least 15. I’ve been upstairs about 4 times now. I’m not allowed to try alone because it’s too dangerous but damnit I got to sleep in my bed with my husband and toddler for the first time in 23 days. My son insisted on sharing a pillow with me. When I came to in the middle of the night, I found his little arm wrapped around mine. I still can’t walk too well with the walker, but I’ll get there. In the meantime I’m enjoying my wheelchair which I learned was modified for a dwarf. (I’m not joking but you can laugh anyway. I did.) At 4’11” it’s rare that I sit in any chair that allows my feet to touch the floor so this is pretty damn sweet.

And the best part of my first night home? No, it’s not the name brand toilet paper (although it may be tied for 2^nd best thing.) The best thing is that I got to sleep in the dark. Comfort is a thorn in someone else’s ass now.