When It All Changed

 (Photos will be added - eventually - to break up this long, ugly wall of text!)


It was 1992, and I was 12 years old that Christmas. It was cold, of course, but we hadn't yet had more than a few flurries fall, and I was glad; the cold, dry air was great for breaking in my new birthday roller blades after school. I loved being outside. I wasn't much of a tomboy anymore, but I loved the crisp air, and the wind on my face as I rode my bike or skated around the neighborhood with my Walkman.

On a lazy Sunday morning, just before Christmas, I sat on the floor watching television. During a commercial break, I got up and walked into the kitchen.  I felt a painful, sharp twinge in my back as I moved, and it hurt bad enough that I went upstairs to look for my mom. Mom, who had recently gone back to nursing school, was studying for a final. She suggested I lay down, thinking I might have pinched a nerve, so back downstairs I went, where I promptly sat back down on the floor. Not long after, my calves started to hurt. Thinking I probably should have listened to Mom in the first place, I moved to the couch, where I immediately realized that I had to pee. Groan.  We had a two story house, and the first floor bathroom was occupied by one of my brothers, which meant that I needed to go upstairs.  Double groan.

By the time I walked from the family room to the stairs, which couldn't have been more than twenty steps, I was in a great deal of pain. My legs felt like they'd been stabbed, repeatedly, with hot knives. Calling to mom from the bathroom, she insisted I come lay on her bed when I had finished. I stood up, or at least, I thought I had, but instead, I found myself falling, crashing back down to the toilet. Something was definitely wrong.

Mom came running and helped me to her bed, where I lay on my stomach, trying to relax and figure out what had just happened, while she ran downstairs for ice packs. Her thought was to stimulate the nerves by alternating hot and cold packs, and so there I stayed, with ice packs and heating pads draped across my calves and thighs. I started to relax, comfortable on the bed, but I could tell my ice packs had melted. "Mom, I need more ice," I said. "I just refilled your ice," she said. We argued back and forth for a moment, before mom finally said "Isabella, LOOK", and sure enough, a fresh pack of ice was in the middle of my leg. We looked each other in the eye. "hospital?" I said. "hospital," she confirmed, and we managed down the stairs and into the car.

We arrived at urgent care, and I only remember a few select moments:

1- I was really frustrated. I didn't know what was happening, and everyone seemed to think i should know why I couldn't stand or feel my legs.
2- I was poked, repeatedly, in the arms and legs, to see where I could feel and where I couldn't. I was irritated when I couldn't, and it hurt when i could.
3- it was decided that I needed to be moved, via ambulance, to University of Michigan hospital. As I waited for the ambulance, I was strapped to a backboard with a neck brace, in case there had been a trauma they'd missed. It seemed like ages before the ambulance arrived, and I waited and waited and waited, annoyed and immobile, and bored enough that I lay there, counting the dots in the ceiling tiles, a task I would get very good at in the coming weeks.

Ann Arbor, MI was about a thirty minute drive from where we lived in Canton, but I have absolutely no memory of the drive. I was hauled into the emergency room, my clothes stripped. Nothing more embarrassing for a twelve year old, than being stripped down by strangers, right? Wrong. My lower half had stopped functioning, and I had lost control of two particular bodily functions. The testing began. X-rays, MRIs, Ultrasounds, and one awful and painfully memorable spinal tap. I had no concept of time. Everything just happened around me. At some point, it was decided the neck brace could come off and I could sit up a little, but I had also been given some steroids, so i was a little...loopy. The day passed, and I was admitted to Mott's Children's and taken upstairs. It was dark and quiet, clearly late, and I was settled into a room on 6 East. The pediatric floor was separated into east and west. East was for kids who were "sick", west was for kids with physical issues, so I was moved, at some point in the next day and a half, to 6 west. It felt like a week in East, I hated that side of the floor. I was annoyed by the volunteers. I hated the food (seriously. Turkey tetrazzini? Gross!).  I learned how to transfer into a wheelchair. I started physical and occupational therapy. I was moved to west, and started feeling a little more at ease. Mom stayed with me every night, except one, early on, when she wanted to sleep in her own bed and shower at home. She promised to bring back the comforts of home, and she did - with a pot of my favorite soup, a bag of nacho cheese Doritos and my baby blanket.  

It was December 20, 1992, when it all started, and I was sad to miss Christmas at home. U of M had a little hotel, The Med Inn, and my mom stayed there a few times over the eight weeks I was there. On Christmas Eve, my whole family came up to the hotel room, with a tree, stockings and presents, the whole nine yards, and we enjoyed our Christmas despite being stuck in the hospital. Christmas morning, I met them back in the hotel room, and I remember watching a Godzilla marathon with my brothers. You know, like most people do on Christmas morning?

I spent eight weeks in the hospital. I had a lot of tests and exams, a lot of pokes and prods, a lot of relearning how to have a daily routine - everything from showering to tying my shoes. After about three days, my right toes started to wiggle.  I hated my physical therapist. I really hated my primary neurologist, but my nurses were great. I remember almost none of them now, except one - Trina, who used to threaten me out of bed with a Super Soaker. We had water fights often. I loved when the U of M swim team came to visit (oooh. boys). I had a few friends visit, one or two teachers, who brought homework (gee, thanks.)  I made the best of it all, what else are you supposed to do? I was sent to nine different shrinks over those eight weeks. Nine! Each one more insistent than the last that they were dealing with a girl in serious denial. My medical records actually stated that I was "a twelve year old with an inappropriately cheerful effect". They could not understand why I was NOT crying. By the time I met with the ninth guy, I was sick of it. I finally challenged him "what do you want?! Do you want me to cry? Fine. I will cry, but you have to tell me - will it fix it? Will it go away?" When he stammered and stuttered and mumbled "uh, well, um, no", I said “OK then. Can I go?,” and they never made me go back.

Coming home was unusual. Everything in our house was inaccessible to me. My bedroom was upstairs, and my cat loved the basement. All of the bathroom doors were too small. All of the cabinets I needed to reach were too high. Going back to school, I was met with MORE challenges, and certainly a lot more stares and whispers than I’d expected. I lost a lot of friends. Admittedly, I didn’t have a whole lot, being new to the school (we had only moved back to Michigan just before school started in the fall), but it was quite an adjustment, to see how many people I’d called friends just fell by the wayside. Some of them came back in 7th and 8th grade. Those who didn’t, well, they clearly weren’t friends I needed. My very best friend never gave up on me (Hi Amanda! Love you!!) and to her, and those who DID stick with me, thank you. I don’t know that I could ever articulate properly how much that meant.

My life had been typical up until I was 12 years old. My whole world was shaken up in the course of forty five minutes, when I went from walking into my kitchen to completely paralyzed from the waist down. I could feel touch, but not temperature or pain. I could wiggle my toes just the slightest, and it took a lot of effort to do so.  I felt frustrations, certainly, but overall, I managed to maintain a pretty positive outlook. OK, so I don’t walk anymore. Big deal, moving on!  And its that same attitude I’ve tried to maintain ever since. Things happen. You can either sit and pout and cry and shut yourself off from the world, or you can figure it out and just keep going.

Pregnancy: The Condensed Version

Hey, guess what? This post is about being pregnant. Being pregnant is a beautiful, sticky, bodily fluid covered experience. You've been warned.


When Matt and I decided we were ready to start our family, my regular OB referred us to a High Risk specialist, not because I was high risk, but because a specialist would be more equipped to handle any potential delivery issues, given my limited mobility. We had a consultation with Dr. H, who agreed that she didn’t see any reason why I might be high risk, and said “call me when you’re pregnant!” Ten months later, I called her and set my first appointment.

I peed a pink line!

At first glance, I always want to start by saying “oh, my pregnancy was fine, up until...”, but if I think back, it wasn’t. It never was. I had minor spotting through most of my first trimester. I had CRAZY horrible nausea and upset stomachs, always in the middle of the night. At six weeks pregnant, I flew to New York City for work, and spent every evening curled up in my beautiful hotel room, while all my friends and coworkers experienced NYC. The most I saw of the city was to and from the airport, and even then I felt sick, but I blame that on the taxi driver. I still don’t know how we got through that completely blocked intersection full of cars and people and street vendors. We were on one side, totally surrounded, then suddenly, on the other side, and I hadn’t seen anyone else move.

16 weeks

Anyway, as I was saying, it wasn’t a picture perfect pregnancy, but by Christmas, around 18 weeks, I was feeling a lot better, and I welcomed the relief. Unfortunately, relief was short lived.  At 21 weeks, shortly after getting out of bed, I started bleeding. A lot. After a quick exam in the doctor's office, we had less than stellar news:  the amniotic sac was coming through my cervix. It hadn’t broken - yet - but it was not good. I needed an emergency cerclage, a stitch to close my cervix back up, like a purse string. We were told there even with the stitch, there was only a 50/50 chance that it would work and the pregnancy - and baby - would be saved. Not good.  An ambulance was called, and I was taken in for surgery almost immediately upon our arrival.  The good news: my doctor was able to put the amniotic sac back where it belonged and stitch me up. The bad news: I was going to be on bed rest for the duration of the pregnancy, and there was no telling how long that would be. It was extremely unlikely that I would make it to 40 weeks, and I would be staying in the hospital “at least a week.”  Poor Matt was worried sick, especially when I was in surgery, which of course holds any number of complications, but now TWO people were at risk. I was, well, worried, but a little delusional, I think. This was a Sunday, and the following Friday, I was supposed to fly to Las Vegas for work. The first thing I said when I woke after surgery? “Call Nichole. I’m not going to be able to go to Vegas.” Poor guy, lol.

I stayed in the hospital for five weeks. We met with the Neonatologist and had a tour of the NICU, because it was pretty likely that I would deliver early. That was a terrifying chat. There’s nothing like being pregnant and hearing “OK, if your baby is born this week, he won’t survive. If your baby is born this week, he won’t survive. If your baby is born next week, he might survive, but will have severe lung problems, could be blind, could be deaf, could be...”  Every single week that passed was a celebration. The longer I stayed pregnant, the better our chances were. At 26 weeks, I was able to come home, but I was on STRICT bed rest. My mom came out from Michigan to help out so Matt wouldn’t have to take an extended leave from work. I sat in my recliner and directed all of the “getting ready for baby” stuff with my feet up. Everything seemed to be going really well. At 31 weeks 4 days, I was quite uncomfortable with, what seemed like a very bad UTI, and I went to the hospital for IV antibiotics, as I was certain the infection was moving to my kidneys. It had to be, with the amount of pain I was in.  I was admitted to the hospital, likely just overnight or so. Right? Wrong.

The next morning, as I sat and ate breakfast with Matt and my mom, my water broke. I was just shy of 32 weeks pregnant. It was determined that labor couldn’t be stopped at this point and the cerclage was removed (I was already 3-4cm dilated WITH the stitch in. Ow!) The first stage of labor seemed to last all day. It wasn’t until evening, 6pm or so that labor really started progressing, but after a few hours, I was stuck.  Around 11pm, Dr. H came in and suggested that we try pushing, even though I was only 7cm. She said that we knew the baby would be small at this stage of the game, so it might just work. I pushed for five minutes, and Travis was born, tipping the scales at just 3lbs, 7oz.

Travis, around 12 hours old

Travis within his first 2 days of life

Coming Soon: The NICU Experience, and what it was like having a Preemie.

Sleep Regression, or "Become a real Halloween Zombie in just seven days!"

OK, Moms of toddlers. Help me out here.

Have you experienced sleep regression with your child(ren)? We’ve had our share of sleep ups and downs, but for the most part, in the last few months, everything has been pretty great, minus the fact that Travis is a total night owl and rarely goes to bed before 10pm.

In the past 2 weeks, however, we’ve had more bad nights than good, and when I hear that baby monitor go off between 3 and 5am, I know I’m probably getting up for the day. We’ll find Travis wide awake in his crib, usually at least a little cranky because he doesn’t want to be awake (trust me, kiddo, neither do I!). But nothing will soothe him back to sleep, and I wind up parked in my family room with Season 1 of The Muppet Show or any number of Little Einsteins episodes on repeat. When it seems apparent that he won’t be nodding off any time soon, I’ll fix him breakfast and make my coffee. Making coffee for me means “I’m not going back to bed”. I just can’t once its done.

90% of the time, I’ll fix my coffee, turn around, and find Travis fast asleep in his eggs and toast. Once, he still had his waffle in his hand, up to his mouth, and in his teeth! He’ll go back down to bed for a couple hours, and I’ll stumble into my office, catch up on a few reports or emails, feeling like an extra on the set of Walking Dead. And of course, by the end of the day, I’m so exhausted and frazzled that I earn the label of “superbitch” in the household, dishes aren’t done, dinner is pizza delivery, and I want nothing more than to be left alone.

I’ve done the slightest bit of reading on sleep regression (meaning, I got up at 5am with Travis today and read about four articles while he ate his eggs and I drank not-enough-coffee), and it would appear that the only solution here is time. We are NOT “cry it out” people, and I know that if you leave Travis alone in his bed, he’ll almost never just fall asleep. He gets mad, madder and maddest, until he is too wide awake to sleep anymore. 
 
Aside from crying it out, have any of you found a decent solution (and don’t say benadryl!) or are you, like me, just sitting up before the sun rises, waiting out the next month?

Moving Right Along

So I know what you’re thinking. Another bored stay at home mom, starting a blog about being a bored stay at home mom. Dime a dozen, right? Well, maybe not. Hi, I’m Isabella. I’m 31 years old, I live in Arizona with my husband and our 18 month old son, and, oh yeah, I’ve been in a wheelchair since I was twelve.

January 2012 - ish. First ride in Mommy's wheels!

When I was pregnant, I spent a lot of time searching for information about being a mom in a wheelchair. I looked for other moms just for support. I looked for information about accessible options for cribs, changing tables, baby gear, etc. Well, I shouldn’t say I spent a lot of time, because it didn’t take long to realize that there just isn’t a lot out there. I know there are other moms out there in similar situations, but where are they? Oh wait, maybe they’re struggling too, trying to figure out how in the heck to get anything done when you are chasing a toddler and trying to work and hold the house together AND have a disability. Some days, its just like everyone else, and other days, it really, really sucks.

My hope for this blog is twofold. First, I need an outlet, and I’ve always used writing as a way to work through frustrations, problems, and all the everyday stuff. I’m hoping this provides a little catharsis for me on days when the only thing that helps is screaming into my pillow at nap time. Second, I hope that other moms - with disabilities or without - might find the support and ideas that I longed for and couldn’t find.



I’m open about my disability; you’ll be hard pressed to find a question I haven’t been asked already. If there’s something you want to know that I haven’t yet shared, please ask!  Welcome to my blog!