My doctor had just begun the infertility workup on us when it happened. I guess that was the time my body decided that we really meant business after all. My period was very late, but that was not unusual. I was feeling very bloated, and that was not unusual. But it was the beginning of August, and there I sat on the couch, feeling as if a cement truck had flattened me. Something more than just my temperature was up. I went into the bathroom and used the plunger to fish the last pregnancy test stick from the back of the vanity cabinet where I had angrily flung it the month before. The directions on the box said to wait five minutes for the test results, but I knew within 30 seconds. There was no mistaking the bright blue line in the test stick window -- I was definitely pregnant!

I called John into the bathroom to look at the stick with me; I wanted to be sure that I wasn't seeing things. We laughed and we cried, then almost immediately the waves of panic washed in. What would we do to get ready for a baby? The small amounts of research we had done before becoming pregnant turned up nothing. Where would I start? How would I get the information I needed? Oh, well, I thought, thank God we have nearly nine months to figure this out. We experienced some bumps and bruises in the early weeks, namely that I had a previously undiscovered thyroid condition (so that's why even looking cross-eyed at a piece of cheesecake would make me fat!). My hormones were seriously out of whack. Unless we could get my hormones to behave, the possibility of a miscarriage could be increased. It was like a roller coaster, each day ending with me either laughing or crying on the phone with my doctor. She was fast becoming much more to me than just a medical professional. Though I deeply valued and appreciated how much knowledge she possessed about my condition, more important was the constant support she offered to me and my husband.

About a month after we found out I was pregnant, things finally were settling in the way they should. My hormone levels improved, and I was feeling other normal symptoms of early pregnancy. I finally felt as if I could breathe a sigh of relief. That's when the first blow came. The rehab hospital had decided to end its women's services program, and in an instant, the doctor whom I had grown to trust over a year's time would no longer be able to treat me. John and I were devastated -- how could find someone who could work with us and our unusual circumstances on such short notice?

Luckily, though I felt abandoned by the hospital for making the decision to end its program at such a critical time for me, the doctor herself did not leave me in the cold. She continued to provide advice and support by phone and she referred me to another ob/gyn who had at least spent some time working with her in the clinic. Though he had never worked with a pregnant woman with C.P. before, he had at least some exposure to people with similar circumstances to mine. What impressed me most about him was his willingness to learn. He didn't pretend to know everything, and seemed to have a relaxed "let-nature-take-its-course" attitude. He also listened to each of my ideas, and made me feel as if I were the one who knew my own body best.

It soon became apparent to me, however, that this pregnancy was going to involve more than just a highly qualified obstetrician. A team approach to medical decision making is something that I have always valued. Finding those doctors who are willing to play on a team is harder than it sounds, but when it comes to pregnancy and disability, establishing the team quickly was critically important for me. My whole body was pregnant, not just my uterus. I had not only to think about the pregnancy, but the effect that being pregnant might have on my disability. For that reason, my physiatrist also played a significant role in my care, working with my obstetrician. Between the two of them, they developed strategies not only for helping me get through the pregnancy, but they planned for my delivery as well. I found myself calling first one then the other each time something new happened to my body, as I was never sure whether the problem I was experiencing would be more due to my pregnancy or my C.P. Sometimes the doctors were not sure, either, but more often than not, my C.P. and my ever-changing shape affected each other.

I pity any woman who first finds out she is pregnant and then comes to me for advice -- my perspective on pregnancy would likely send her screaming into the night. It seems as if I had every symptom listed in my pregnancy book from the very beginning. Though I was very happy to be pregnant, pregnancy itself was not my idea of a good time. Most of my complaints were normal in any pregnancy, but a few were compounded by my limited mobility. My disability caused my abdominal ligaments and muscles to be weak, and when my expanding belly stretched and strained them, at times the discomfort was excruciating. I found this particularly true when I tried to lie on my sides in bed; for some reason, my spasticity would kick in like I had never felt it before. After laying in bed mostly awake for several weeks, I finally persuaded my husband to get me a recliner. The chair allowed me to sleep in a relatively straight line without being all the way on my back. I slept that way for two and a half months, which was a bit lonely, but it was a definite improvement over not sleeping at all.

One other problem that affected me most in late pregnancy was severe swelling. Many women have some swelling during pregnancy; some are lucky enough to have very little or none at all. In my case, I had to give up wearing shoes in the sixth month. My vanity was of little concern, but the swelling did interfere with my ability to move. Standing transfers became more difficult with each passing day. A salt-free diet would have done more good if I had followed it, but neither it nor the anti-edema stockings my husband tugged on me every morning would save me. Thank goodness pregnancy doesn't last forever, because if it had, I probably would have floated away with all of the extra fluid I was carrying.

As I neared the very end, what was left of my balance went completely out the window. My husband had to help me do just about everything, even going to the bathroom. At home, it was not a problem to get his help, but at work, it was a different story. We both work in the same building, so when the time came I would call and have him meet me at the restroom. I made a sign for the door that nearly matched the ones used by our maintenance crews when they have to close the bathroom for cleaning. I would hang my sign, and we'd go in. Simple. No one ever knew what was really going on.

By the beginning of my last month of pregnancy, the edema and my blood pressure were getting a bit out of control, so my doctor finally told me to stay at home on bed rest -- or, in my case, recliner rest! I knew this would be bad news for my body, even if it was the best thing to do for my baby. Each time I got out of my recliner to go to the bathroom (which was about all of the physical activity I was allowed) was harder than the last. I knew that I wouldn't be able to tolerate the rest for too long without causing a serious long-term backslide in my mobility.

The Things People Say

The few people I had met who were parents with disabilities warned me. They all told me that many people in our society have definite opinions about people with disabilities becoming parents. They said that total strangers would accost me and tell me that I had no business being a mother. I spent many months planning how I would respond to these people, but each incident that happened wasn't on the list of what I expected. I never knew quite how to respond. One day, a co-worker, who I'm sure didn't mean to offend me, said, "I'd like to see how you're going to take care of a baby!" I can't remember what I said, but I remember thinking to myself, "I'd like to see that, too!" Growing up disabled, my parents sheltered me, and I never had the opportunity to take care of a baby. I helped with changing a diaper once when I was 10, but was never left alone with a baby in my life. I didn't know how to lift a baby or feed one, and I didn't and I didn't know anything about feeding and dressing. I went back to my desk in a panic.

As I sat at my desk, I realized that no baby is born holding an instruction book. Thank goodness for that; I could make up my own rules as I went along, and if I were lucky, the baby wouldn't notice that I was different. Maybe the baby wouldn't notice that I was doing things differently because he or she wouldn't know any other way. A similar philosophy has guided me through my life as a disabled person. If I've never experienced the things that the rest of the world thinks I'm missing, then, in my own way, I am "normal," whatever that is. So maybe the same approach would work for baby; at least I was hoping so.

Then, in January, at nearly seven months along and feeling larger than the proverbial beached whale, I ventured into a maternity store. My best friend at work had just had a baby, and I was looking at layettes and a scant selection of nursing tops. I was also eyeing the maternity sale rack for myself when the salesperson approached me and said:

"Hi! Do you mind telling me why you're in that wheelchair?"

Not, "May I help you?" or "How are you today?" I am quite accustomed to seven-year-olds asking that question in that manner, but it had truly been awhile since an adult approached me that way. I had barely picked my jaw up off the floor when she continued:

"Well, were you born that way or were you in an accident?" Phew, I thought she was trying to pin my disability on my pregnancy. At least that wasn't the case. I assured her that I had been this way for all of my 30 years, and quickly changed the subject to the clothing I wanted to buy.

"Well," I said, "I'm not quite sure if I'm shopping for myself or for a friend. Would you mind helping me get a few things?"

"Oh," she responded, "You have a baby at home?"

"Not yet . . . " I said, a little confused.

"Oh my goodness!" she exclaimed. "I didn't realize that you were pregnant!"

This confirmed my already strong belief that contrary to recent advances in our society, people with disabilities still don't get noticed much. There I was, pregnant, and in an environment where other pregnant people are commonplace. I did not try to hide my expansive self, and yet, I was invisible. At that moment I felt as if the world perceived me as a purple wheelchair with a nondescript blob driving it rather than the happy very pregnant redhead that I wanted all to see. I called the corporate headquarters for that store to report the incident and suggest that management train their employees that yes, all kinds of people really can have babies. I never heard from them again. In similar circumstances at other times in my life, I would not have let incidents such as this one go. But I had so many other things to prepare for the baby. I did not have much time to educate others. For once, I had to educate myself; I only had a few precious weeks left to figure out everything I needed to take care of the baby.

Do We Really Need All This Stuff?

It's amazing how much stuff a new baby needs. At least some marketing genius out there would like to make me think that I would be a terrible parent if I didn't have a completely coordinated nursery filled with hundreds of stimulating toys and a thousand things to wear. Nevertheless, as I was making my first trip down the aisles of the Mother-of-All-Babystores, my heart sank. All of the products were meant for someone who could stand. Row upon row of cribs revealed that not one of them was accessible to me. All of the side rails blocked the under side of the cribs, so I could not get my wheelchair close enough to lift a baby out. Not only that, but about half of them had these silly kickstand releases that I could not use, or some squeezy thing that left my limited dexterity in the dust. The changing tables were similarly amusing; all were too tall to use from a seated position, and most had stacks of "convenient" drawers that totally blocked the underneath area.

I scrutinized endlessly every item in every major category of baby merchandise -- testing strollers for their maneuverability and trying the snaps and buttons on onesies and rompers. I was determined to be able to take care of my baby by myself, because I had heard horror stories of mothers with disabilities whose children were taken away from them. I knew that taking care of a baby was possible for me, but since I had never really done it before, my limitations in this area were completely unexplored.

Some of my major areas of concern would be carrying a baby, dressing, and accessible baby furniture. I was most worried about finding a crib and changing table I could use. Occasionally, someone would call and say that they thought they saw a crib I should try, but inevitably, each one I tried wouldn't work. I was feeling very frustrated, and taking it very personally that not one crib was designed with the wheelchair user in mind.

Just as I had begun to resign myself to my baby coming home and sleeping in a drawer, two or three of my friends then told me about an organization called Through the Looking Glass, an organization in Berkeley, CA that had recently concluded a federal grant program for parents with disabilities. As part of the grant they had developed the Adaptive Parenting Aids Idea Book One, which contained a gold mine of ideas for inventing parenting devices or modifying products that were already on the market. Included in the book were four or five designs for a crib, each of which had its pluses and minuses. But it was a place to start. (For information on ordering the Adaptive Parenting Aids Idea Book, see the resources section of this article.)

Though I now had ideas for what might work in crib designs, it wasn't as if I had a catalog in front of me where I could just call the 800 number and say, "I'll take that one!" I first contacted the National Rehabilitation Hospital in Washington, D.C., to see whether the rehabilitation engineering staff would be able to help me build what I wanted. The guy I met with seemed eager to tackle this new project, but since baby furniture is not a covered item in my health insurance policy, I realized quickly that it would be financially infeasible to work with him. A few weeks later I found a blurb in another local paper about an organization called Volunteers for Medical Engineering The engineers in this group specialize in developing adaptive devices for people with disabilities that are not otherwise commercially available. This sounded like just what I had been looking for. I contacted the organization, and the people there were eager to work with me.

After meeting with a project manager who asked a lot of questions aimed at determining my specific needs, an engineer came to talk with me about the design of the crib itself. We had decided to modify an existing crib rather than build one from scratch, so John and I bought one that had two working sides. One side, we figured, could be modified for me, and the other side would remain intact for daddy. We then decided to raise the legs of the crib so that I would be able to pull my chair under it as if I were approaching a table, and to change the side railing from a drop-down mechanism to a door. I felt I would need to be able to get to either end of the crib, but having the whole side railing open as one huge door would have been somewhat unruly. So the engineer split the side railing into two doors that latch on either end and open toward the middle. The latches have a peg-in-the-hole closer on them, which will probably need to be upgraded for me when the baby figures out how to operate them. For now, though, the crib works amazingly well. I only wish it wasn't the only one like it in the world -- so many people could probably benefit from having this piece of furniture, but after what I went through to get it, I will probably never let it go.

John and I were lucky enough that with most of the other baby care items we needed, there would be at least one product in a group of products that I could use. We found a single stroller that worked, and a high chair, and then a car seat. We chose each item carefully, but by the time we were done getting everything we needed, everything we had was a product I could use independently.

Enter Nancy Sunshine: Parents Helping Parents

Throughout my pregnancy, I searched in vain for others who could share my experience. I even looked on the World Wide Web, finding precious little advice. It was helpful that I could commiserate with another friend with C.P. who was also pregnant, but she was a first-time mom as well, and not experienced with taking care of babies. Much of the planning I had done and the product choices I had made seemed to me to be good ideas, but they were only theories in my head. What I needed most of all was reassurance that I really was as prepared as anyone for the realities of parenthood, and for someone to tell me that I was on the right track. Most of the people with disabilities I knew who were parents had disabilities that were very different that mine, and I longed for someone that I had something in common with to talk to.

One night about halfway through my pregnancy, an unfamiliar voice came over the other end of the phone as I answered it. The woman said, "Hello, my name is Nancy. You don't know me, but I have C.P., and I have three kids. I thought we could talk. Would that be okay?"

I couldn't believe my ears. The person I had been searching endlessly for had just landed in my lap! I spent hours with her on the phone, barraging her relentlessly with my endless stream of questions and concerns. Nancy shared with me her experiences with everything from breast-feeding to diapering to hospital politics. She told me that the worst of all for her was knowing that when she had her children, she and her husband solved their parenting dilemmas totally on their own, and that somewhere out there, other couples were doing the same. We parents were not benefitting from each other, and the cycle of the lack of information continued. She said that she had been waiting for the opportunity to keep another parent from having to start totally from scratch, and luckily, she found me! I felt as if I bonded with her instantly.

I now feel a similar resolve to reach out to other parents or future parents with disabilities. That is my motivation for writing this article, so that I can share what I've learned with others. Maybe one of you will benefit. Maybe someone else won't have to feel alone.

My husband John's approach to sharing has a modern twist He has developed an Internet site that lists many resources and products we have found that may be of assistance to some parents with disabilities. The URL for the home page is as follows:

http://ourworld.compuserve.com/homepages/Trish_and_John

Of course, the list is not complete, but we are always looking for information to add. Particularly, we would love to have products or organizations listed that could benefit people with other types of disabilities, so that our list could have a wider scope. If you visit our home page and think of other resources, please feel free to drop us a note, via E-mail, at 74731.2325@compuserve.com.

In addition, we would like to start an E-mail discussion group for parents with disabilities. If you think this is a good idea and would like to be part of the group, please let us know by sending an E-mail to the same address. We may be new parents, but we know from experience that hanging together is the only way to go.

Preparing for Birthday -- Make Sure They Know You're Coming

About halfway through my pregnancy, my doctors, my husband and I began preparing for the inevitable -- the birth of my baby. I figured out quickly that no detail was too small -- I had to plan ahead for everything.

Most important, other than working with my obstetrician, was making sure that the hospital would be able to meet my needs when it came time for the delivery. I had assumed correctly that the labor and delivery staff didn't get too many customers who used wheelchairs, so I met with the head nurse to discuss my needs for transferring, bathrooming, and other personal care concerns. I also met with the head anesthesiologist to be sure that he would inform his staff of my spastic reflexes and my slight spinal curvature, both of which can affect how drugs are administered. I also took a tour of the labor and delivery and postpartum units to try to address potential accessibility problems, and I met as many of the staff as I could along the way.

The hospital was in the middle of constructing a new labor and delivery unit as I was expecting our baby. The new unit was not only cozy and ultra-modern, it also offered several labor and delivery rooms with accessible bathrooms and showers. I couldn't believe my luck that I was going to have my baby in a facility that would respect my need to be independent and to move about during my labor.

I was 36-and-a-half weeks along when my doctor and I decided I'd had about enough of being pregnant. I had been on bed rest for about a week, and though 36 weeks is a little early, tests revealed that the baby was doing well enough for us to go ahead and induce labor. As luck would have it, construction was not yet complete in the labor and delivery room, and I found myself in a completely inaccessible environment. Even the best laid plans can go awry when it comes to having babies, and I was in no mood at that point to have to deal with accessibility issues. My doctor did everything he could to ensure that I would be as comfortable as possible under less than optimum conditions, and the nurses, for the most part, were able to work with me instead of around me.

The original doctor who had worked with John and me in the beginning of our adventure came to the hospital for added support. She told me that she had started something and she wanted to see it through. My mother also came and stayed with us, my brother popped in, and so did John's parents. Everyone waited, and they paced. After 37 hours of contractions with little progress, we decided it would be best to go with a C-section delivery.

Diana Michelle Day greeted the bright lights of the operating room at 11:06 p.m. on March 7, 1996. After she received a medical assessment and treatment, the staff handed her tiny body to John, who was sitting next to me. She was wrapped up so well that I thought she looked more like a caterpillar than a baby; only the area from just above her eyebrows to the top of her chin was uncovered. Even with the little bit of her that I could see, however, it was obvious to me that she was all ours. Our miracle had finally happened. I was no longer a mother-to-be, but a parent-in-fact, and this was the moment that all of our planning and arranging had been for.

Diana Michelle is four months old as of the writing of this article. She is like any other baby, with any other mommy and daddy. She laughs and smiles, plays with her toys, and notices everything new we bring into her world. The one thing she doesn't notice, however, is that her mommy is in a wheelchair. I am just mommy. And that is all I ever wanted to be.

P.S.: The last lesson learned came just two days after I came home from the hospital with Diana. While I was pregnant, my center of gravity and balance had changed slowly over time. After I had the baby, my center of gravity changed instantly, and I was unprepared to get around using my newly un-pregnant body. Because the baby was suddenly not inside me any more, I felt lighter than air and stronger than I had in months, but I had a false sense of security and gravity found me, fast. I lost my balance while getting out of the shower, fell to the floor, and fractured a kneecap. (Everything that happened after that will be the subject of another article someday.) The moral of the story is be cautious when you move around in all stages of pregnancy; even when you think it's over, it isn't, and you may have a long way to go before you see your old self again.

END OF ARTICLE