Let the Children Come!

To begin, these are two real-life scenarios that have happened to me in the last year.

Scene: The waiting room of the counselor Ayden sees:

1) I was waiting for Ayden to be done when a mom and little girl, probably about 5 years old, came in. When he did come out, I started to wheel past the two of them and the girl, looking at me curiously, said, "Why are you in a wheelchair?" Before I could say anything, the mom turned beet red and grabbed the little girl saying, "Don't ask things like that!", then to me, hardly meeting my eyes, "I'm so sorry!" I tried to assure her I didn't mind, but she was obviously grossly ashamed.

2) I was again waiting for Ayden to be done when another mom and little girl came in. The girl looked curiously for a moment then said, "Why are you in a wheelchair?" 

Me: Well, I was in a car accident and my neck was broken. The brain sends all its messages to your body parts through your neck and back, so when that gets hurt, your body can't do what your brain wants it to. My legs can't tell that my brain wants them to move, so I can't walk.

Her: Oh! Your hands neither?

Me: Yep, my fingers only get some of the messages my brain sends, so they can only move a little.

(Ayden came out, so I needed to turn and make his next appointment; also, I should mention, this child is knee-high to a grasshopper 😁)

Her: I'm gonna help! (Started systematically pulling my chair around and pulling me toward the desk while her mom and I laughed)

Her mom: In high school, I dated a guy with cerebral palsy who used a wheelchair. I used to ride on his lap and we'd fly down the halls!

Now, which of these 2 little girls do you think will be more comfortable with, and therefore inclusive of, people with disabilities when she gets older? Which will be more informed? Which will look at people like me with a smile and which will glance uncomfortably away, making me feel invisible? Which will recognize me as a productive member of society and which will see me only as broken?

For my first post in over a year, and my first post of Spinal Cord Injury Awareness month, I want to beg you to normalize disability for your children. We're just people, and those of us who are fortunate enough are still living our lives as "normally" as we can. There is nothing inherently amazing about us, nor is there anything inherently pitiful about us; it's equally as frustrating to me to be applauded for "managing" to live from my chair as it is to be pitied because I have to.

One of the best experiences I've had in public happened at Central Market in Dallas. I was waiting for Ty to come out of the restroom and a mom walked in with a teenage boy who had Downs Syndrome. He pointed at me and said, "Mom, look!" She glanced at me, smiled, and said, "Yep. She uses a wheelchair to get around. Some people need them. Cool, huh?", and they continued on their way. As if I were totally normal, totally routine. Just a person who happens to roll instead of walk.

I'm one wheelchair user; I can only speak for myself. But for myself, I ask you to let your children come to me. Let them, even encourage them to, ask questions. I'll give them a ride on my lap, show them how I can spin or pop a wheelie, and show them the gnarly scar on the back of my neck. I'll tell them how I do things differently than they do while showing them also that, though we're different, we're still essentially the same. 

My Nighttime Routine, or Why Girls’ Night Out is Mostly a Thing of the Past for Me

A few times since my accident, there's been an opportunity for me to go do something later in the evening. Early on, there was a wedding I would have loved to attend that started at 7 and was all the way across Houston. A few times, there have been invitations to hang out with friends till 9 or 10 PM. I’ve  come to realize (and begrudgingly accept) that, barring an emergency, I really need to be home no later than 9, preferably 8. And yes, it makes me feel like an old lady.

I’ve told you before about having to do a bowel program every day night, so with that in mind, let me walk you through my evenings.

On a perfect night:

7:00 – Get the boys going cleaning up their room
7:30 – Cleanup done. Ty takes the boys for tooth brushing, etc. I go set up for the bowel program
7:45 – Read with the boys, pray, tuck them in
8:10 – Get in my bed so Ty can help me stretch my legs (and doesn't have to wait till after the bowel program to do it)
8:20 – Back out of bed; Head to the bathroom
8:21 – Transfer to shower chair, start bowel program
(Bowel program starts with a suppository, wait 15 minutes, stim, wait 15 minutes, stim again, repeat as necessary)
8:25 - end of bowel program (between stims) –

• Change my catheter bag to the larger overnight bag
• Floss teeth
• Remove makeup
• Change into pajama shirt
• Binge watch Netflix or Amazon Prime

(On a perfect day, only 2 stims, so…)
8:55 – Clean up
9:05 – Get back in wheelchair
9:06 – 9:45 -

• Continue binge watching 
• Use face toner
• Take nighttime meds
• Clean out daytime catheter bag and let soak with vinegar
• Brush teeth
• Mouthwash
• Clean off bowel program tools
• Drain daytime bag
• Store daytime bag and replace bowel program tools
• Take out hair clips
• Plug in iPad
• Gather supplies needed for the morning

9:45 – Get back in bed and set up all the things I need for morning on my chair next to my bed
9:55 – Get pajama pants on
10:00 – 11:00 - hang out and talk with Ty a little while I simultaneously...

• Change the dressing around my supra public catheter insertion site
• Lotion arms, hands, and feet
• Take melatonin
• Get set up in my sleeping position
• Read
• Go to sleep

Let me just tell you how many perfect nights we have.

Let dinner get on the table late, or the kids’ cleanup to take more time, or me need a third stim, and the night gets later in a hurry. I simultaneously love the bowel program for helping me keep a handle on my bowel movements and hate it for the chunk of time it takes out of every day. There are many nights I don't get to sleep till after midnight, and then have to wake up around 7 AM, 6 AM during the school year. So farewell, girls' night out! I miss you already!

Momming Quad

During my second stint at TIRR, my therapists were doing everything they could to prepare me to return to my crazy little (then) 3 year old and 6 year old boys. They called in a former TIRR patient who, aside from being on the wheelchair rugby team and doing marathons on his hand cycle, was also a dad. He told me some great stuff, but then—

Me: So what do you do when your little (5 year old) girl takes off running?
Him: Well, we’ve worked with her, and she understands and really doesn't run off.
Me: … *cough*(crickets chirping) Um yeah, that may not be my boys...

Motherhood, or “momming,” as I call it (if anything should be a verb, it's momming, right?), isn't easy even under the best circumstances. It's long hours and LOTS of heavy lifting. It's rewarding and infuriating, often from one moment to the next. It’s hopelessly dull and completely enrapturing. Being a parent is not for the faint of heart. To add to all the crazy, most of us don't have perfectly ideal circumstances. For every family, there's something outside the “norm,” whatever that is.

For us, the “normal” parent experience ended at day 2 when the doctors told us Ayden's platelet count was super low. For any who don't know, both our boys were born with a genetic disorder called Wiskott-Aldrich Syndrome and needed bone marrow transplants to survive. Right about the time we were finally coming out of the woods from Ayden’s BMT, we discovered I was pregnant again, did an amniocentesis at 16 weeks, and found out it was going to be another WAS boy. Two BMTs, a stem cell top off, and a major move to a new city later, things finally seemed to be settling down. Even on the verge of Ayden getting an Asperger’s diagnosis, we were living the most “normal” version of life we’d ever had as a family.

So guess what happened next?!

Momming from a chair is a definitely a different experience than momming in “normal” circumstances. I’m not gonna lie: there are some serious disadvantages. For one thing, as a quad, it's a whole lot harder to grab them. Kids often need to be grabbed for a variety of reasons—to keep them from running out in the parking lot, to catch them before they fall down, to hold them still when they're in trouble so you can get right in their faces and do that scary growling kind of talk instead of yelling…

Eh hem.

ANYWAY, it's also harder to bathe them, make them food, help them get dressed, pick them up if they fall, etc. But, like anytime you deal with any abnormal situation in your life, your choices are to give up or adapt. We’ve chosen to adapt. Or rather, I’ve chosen to adapt and the boys have just done their thing because they're KIDS and kids can get used to just about ANYTHING. I’m also fortunate that they are at ages that they're learning how to do most things for themselves anyway; I’m sure it's harder with a baby.

Now they climb up into my lap when they're hurt instead of me bending down to pick them up. If there's something on a high shelf they want, we work together to get it. When I help them wash their hair in the bathtub, I lean way over the tub (thank God for my seatbelt) to rinse the shampoo from their heads. We give hugs from the side of my chair and big hugs when they climb on my lap. And as for that scary growling voice when they're in trouble, if I can get them close enough, I can lock my arm around their waists and achieve the same effect. 😉

There are some unique difficulties as well. For one thing, if you think Legos make it hard for YOU to get across a room, try doing it on wheels! Less painful, but just as frustrating. The boys’ room is between our room and the rest of the house, and every time I need to cross it, they have to do a clearing job. Ayden has issues that make raising him especially difficult at times, namely Asperger's Syndrome and ADHD. Most problematic is their tendency to ignore me when I get onto them. I don’t know for sure that it's because I’m in a chair, but they sure do straighten up when Daddy shows up and cut up in front of me, no matter how consistent I am with discipline.

The fundamentals of being a mom, however, haven't changed. Some things are harder to figure out (I just built a Lincoln Logs cabin with Caleb. Let me tell you how touch-and-go THAT was.), but most things worth doing take figuring out and practice anyway. All I know is that 2 years years ago today I was sitting in my mom’s kitchen unable to do much more than watch Netflix with my kids and now I can build with Lincoln Logs. I can make them lunch. I can wash, dry, fold, put away, and help them pick out their clothes. I can take them to the playground, and I can hold them when they cry. And I don't know any mom worth her salt who wouldn't fight to do the same. Momming is hard no matter your circumstances. When the choice is between giving up and learning, I can’t believe any of the wonderful moms I know would make a different choice than I.

It's the Little Things

After the accident, my hair started falling out in clumps. It got ridiculously thin and there was a big completely bald spot in the back to boot. I asked a doctor about it and she said that most likely my body was responding to the physical stress of healing from my injuries. It took months to begin to grow back in. All that time, and even after I got home for a while, I had to depend on other people to put my hair up in a ponytail, my days of French braiding officially over. Not to mention, I live in a house full of Y chromosomes whose ponytail skills are limited, at best.

I imagine most of the ladies and many of the men reading this can understand how frustrating it can be to have little control over your appearance. After a few weeks at home, I decided I'd had enough. I searched store shelves to find any kind of clip I might be able to maneuver with my limited hand function. Finally, I found one kind of clip that works better than any other and figured out how to make my hair presentable in a way that I liked.

It's such a small thing, but I know for me, when I became able to do my own hair in a style I like it was a great moment of freedom and independence. So here's me doing my own hair. I'm hoping that having this video on YouTube will help some other curly-haired quad someday. 😊

Mixed Signals - Autonomic Dysreflexia

As I've said before, I never lost all sensation after the accident. The majority of people with spinal cord injuries lose all sensation below their level of injury, so technically I shouldn't have any sensation below my chest. However, my injury is incomplete, meaning my spinal cord was not completely severed. In my case, that means I still have sensation throughout my whole body, but it's imperfect. I don't feel pain at all on my left side (below my chest) and only a nominal amount on my right. I can tell if someone is touching me, no problem, but not if someone is pricking me with a pin on my left foot. I have no sensation of hot or cold on my left side, and an odd, mildly painful perception of it on my right.

So, that doesn't sound so bad, right? Smack your leg into a wall and feel no pain. Get an ingrown toenail, but feel no discomfort. Except for...

(Dun-dun-DUUUUUUNNNNN)

Autonomic Dysreflexia

Turns out that even a paralyzed, desensitized body is a pretty astute thing. It can tell that something is wrong, even though it can't identify what it is. But it REALLY doesn't like not knowing what's wrong. So, for instance, I had an ingrown toenail at one point and I put my sneakers on -- my body FLIPPED. THE HECK. OUT.

Dysreflexia can come on in a variety of ways. With the ingrown toenail, it was intense nausea. At other times it's been an insane pounding headache that aches in waves across my head and the bones of my face, loud ringing in my ears, a flushed face, and strong tingling all through my arms, legs, hands, and feet; often a combination of 2 or more of those at once. The one thing it always does is skyrocket blood pressure.

My blood pressure has always been below 120/80, but since the accident it's been much lower. Spinal cord injury generally lowers blood pressure for a while, but then it will stabilize after a few months. Mine never has stabilized, and I continue to need medicine to raise my blood pressure before I get up in the morning. (I was curious the other day and took my blood pressure before I took the meds. 85/58, no joke. I've had a doctor suggest I ADD salt to my diet.)

ANYWAY, all that to put this into perspective: the last time I was dysreflexic, my blood pressure was 185/130. 

Dysreflexia can happen when there's anything "wrong" that your body can't identify, most commonly a full bladder or bowel issues. Big things can set it off, of course, like spilling boiling water on your legs; but, small things can do it too. For someone with a complete injury who has no sensation at all, even a wrinkle in the fabric of their shirt that their body doesn't like can get it going. Once it's started, it's then up to you to figure out what's causing it and fix the problem; as soon as you do, the dysrelexia subsides in moments. In the case of my ingrown toenail, as soon as I took off my shoe and sock, the nausea completely disappeared in about 30 seconds and my BP was normal again. It's pretty trippy.

So next time you stub your toe, try to be a little grateful for the pain! Your brain and body know exactly where and why you're hurting and are making sure you know too. It's a blessing in disguise. 😉

TMI Talk

A person with a spinal cord injury (SCI) not only loses the ability to walk, but all function and control below the level of injury. This diagram shows the levels and what is affected by an injury in each. My neck was broken at the C6/C7 level, so everything there and below was affected.

Way down there at the bottom, you'll see that it says "Bowel, bladder."

Just so you know, if you're opposed to TMI stuff, stop reading now.

Before my accident, I just assumed people in wheelchairs would just go in the handicapped stall, get onto the toilet somehow, and do their business like anybody else. Yeah, not so much.

#1. Most quadri- and paraplegics use intermittent catheters inserted into the bladder through the

urethra roughly every 4 hours. For REALLY TMI reasons I won't go into, I have a suprapubic catheter, which is a catheter tube that goes through my belly into my bladder. The other end attaches to a tube with a bag on the end that I change twice a day. During the day I use a smaller bag that I attach to my lower leg with straps. I empty it as necessary throughout the day directly into a toilet or into a bottle if we're on the road or at my mom's or aunt's where I can't fit into the bathrooms. At night, I change to a larger nighttime bag that I don't have to worry about emptying until morning.

#2. Spinal cord injury leaves a person with little to no control over when they have a bowel movement. Problematic, right? To avoid accidents, we have to do a bowel program daily or every couple of days. Daily for me. ChristopherReeve.org describes it this way:

The program usually begins with insertion of either a suppository or a mini-enema, followed by a waiting period of approximately 15-20 minutes to allow the stimulant to work. After the waiting period, digital stimulation is performed every 10-15 minutes until the rectum is empty. 

As a quad, I need tools to help me do this, namely a suppository inserter and a digital bowel stimulator. Or as Reanne, the lady who trained me on doing my bowel program independently called them, "party sticks." 😄

So now you know! There are lots of odd things about spinal cord injury, but I'm grateful that someone figured out how to manage this stuff!

Will I ever walk again?

A few weeks after the accident when I first went to TIRR, during my entrance evaluation a therapist asked me what my goals were while there. I'm pretty sure I said something like, "Uhhh, well, I mean, I want to walk again." I was still pretty fresh from the wreck, I had a neck brace and a very fractured scapula, and I had no real idea of my prognosis. I had heard of spinal cord injuries, but I couldn't really resolve it in my mind that THAT's what I had. It hadn't clicked that the thing that keeps people in wheelchairs their whole lives, THAT was what had happened. My friends and family all said they were sure I'd be up and walking soon, and I thought for sure they were right.        

In the 3 weeks I was there at TIRR, my therapists very kindly but plainly let me know that I had the kind of injury that could take up to two years to heal if it was going to, but which might never heal at all. My job was to "hope for the best, but prepare for the worst." I learned that the thing about physical therapy is that while it's awesome, it's limited. Therapists can work any muscle that has return (some function restored to it), but when there's no return naturally, there is very little a therapist can do to force it. Some research suggests that electro stimulation can help as well as bearing weight on the paralyzed muscles, but it's ridiculously far from a guarantee. After that stay at TIRR, I went to my mom's house for 4 months to give my neck and scapula time to heal enough to allow me to bear weight. While I was there, I watched my family shoulder the burden of my care, which took a great toll on everyone involved, while I sat around feeling virtually useless, unable even to sit up unsupported on my bed.

He

When I went back to TIRR, I had a very different set of goals in mind. I wanted to learn how to transfer with a slide board, dress myself, manage my own bodily functions (a subject for an upcoming post), push a manual chair, cook, and get on with the functions of daily life. I wanted to build my arm strength and practice using my hands. I wanted -- needed -- to learn how to use my  body as it was, not as I wanted or hoped it would be. My amazing occupational therapist Katie and physical therapist Adele worked their butts off with me, and though I didn't leave TIRR completely able to do everything I needed to do, I had the building blocks. I can never show them the gratitude I feel for all they did. All it took from there was practice (and a lot of patience on Ty's part!).

The question I get asked most by old friends who don't see me often is something along the lines of, "So how's physical therapy going? Can you walk yet?" The answer is no, and barring some serious medical advances, I probably never will. What's more, I'm not actively trying to do so. I am working toward getting a job and a vehicle I can drive myself. I'm looking forward to learning more and more things I can do.

I have a husband and two little boys who need me now, not just at some theoretical future time when I can walk again. If I could get all my friends and family to understand anything about me, it would be this: I am ok with my disability. There are things I miss from before and a few things I regret I won't be able to do, but overall, I know there are more possibilities than impossibilities.

So would it be great to walk again? Sure. But I've got more important things to do.