A Journey to Motherhood

 

My Pregnancy and Childbirth Experience

Everyone said I was crazy — even my mother protested. But I was already married three years, with two cats, a good job and a mortgage as high as the sky. There wasn’t much difference between other 30-year-olds and me. So why wouldn’t I want to take the next step? Motherhood seemed logical, at least to me.

Soon, however, I would discover that the rest of the world didn’t quite see things my way. It was almost as if having cerebral palsy and becoming a mother were two mutually exclusive notions.

The first logical place to start, I thought, would be with the gynecologist/obstetrician who had been treating my myriad of female problems for the previous eight years. He examined me, assured me that I was in good health, and then said, “A C-section is really the easiest way for you to have a baby, you know. We don’t quite know what’s paralyzed down there,’ and I don’t want you to take any chances.”

“What do you mean by that?” I asked.

“Well, you know, below the point of your CP injury…”

That was all I heard him say. I didn’t know how to respond — did this man who had been my trusted practitioner for so long really know nothing about my physiology? He didn’t seem to know that my disability only involved voluntary muscle movements; luckily, it leaves smooth muscles, such as the heart — and the uterus — alone. So my first step was to find a good physician who understood my whole body, not just the parts covered in a narrow specialty. This doctor told me that not only was getting pregnant not a far-fetched idea, but having a vaginal delivery wouldn’t be out of the question, either.

Getting pregnant wasn’t easy — suddenly what once had been a spontaneous romantic act had now been overshadowed by calendars and thermometers. Month after month, the pregnancy test stick stayed white. John and I were growing ever more discouraged, and I, being the half-empty-glass type, was beginning to think that I might never know the feeling of holding my own baby in my arms.

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!

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.

About a month after we found out I was pregnant, the women’s services program where I had been a client was ended, and in an instant, the doctor whom I had grown to trust over a year’s time was no longer able to treat me. Luckily, she did not leave me in the cold. She continued to provide advice and support by phone and she referred me to another OB/GYN. Though he had never worked with a pregnant woman with CP before, he had a 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 to think about not just 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 not only developed strategies for helping me get through the pregnancy, but 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 was due to my pregnancy or my CP. Sometimes the doctors were not sure, either, but more often than not, my CP 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 side in bed; for some reason, my spasticity would kick in like I had never felt before.

After lying 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 go 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 physical aspects of pregnancy were not the only issues I had to deal with. There were attitudinal ones as well. 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 with a disability, I was sheltered by my parents, and I never had the opportunity to take care of a baby. I didn’t know how to lift a baby or feed one, 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.

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. 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 manoeuvrability 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 saw a crib I should try, but inevitably, each one I tried wouldn’t work. I was feeling very frustrated.

Just as I had begun to resign myself to my baby coming home and sleeping in a drawer, friends told me about an organization called Through the Looking Glass, in Berkeley, California (tel.: (510) 848-1112), that 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. It was a place to start.

Though I now had ideas for what might work in crib designs, it wasn’t as if I had a catalogue 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 (similar to Canada’s Tetra Society, (604) 688-6464). The engineers in this group specialize in developing adaptive devices for people with disabilities that are not otherwise commercially available. The people there were eager to work with me.

My husband 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.

Throughout my pregnancy, I searched in vain for others who could share my experience. I even looked on the Internet, finding precious little advice. It was helpful that I could commiserate with another friend with CP 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. Most of the people with disabilities I knew who were parents had disabilities that were very different from 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 CP, 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 breastfeeding 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. I felt as if I bonded with Nancy instantly.

Other than working with my obstetrician, the most important task during my pregnancy 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 labour 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 labour 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.

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 labour. 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 now nearly four years old. She is a happy, active preschooler who delights in daily new discoveries of her world. She is aware that her mom is in a wheelchair, but when friends and strangers ask her about it, she casually replies, “Some mommies walk, and some mommies don’t.” To her, I am just Mommy. And that is all I ever wanted to be.

(Trish Day and her family live in Bowie, Maryland, U.S.A.)

USING THE ’NET TO BRING PARENTS TOGETHER

It wasn’t long after Diana’s birth when I longed to share the gifts of support and connectiveness that my friend Nancy had given me. My husband and I had recently discovered the Internet, which we realized immediately could be a powerful communication tool for people with disabilities worldwide.

We launched Diana Michelle’s Home Page: The Internet’s One-Stop Resource for Parents with Disabilities in June of 1996 with a few
meagre resources listed that we had found for ourselves. Soon, other parents with disabilities began finding us, and added to our list the products or solutions that had helped them in their own parenting journeys.

Our website grew in leaps and bounds, and today includes the Parent Empowerment Network, an e-mail listserver for parents with disabilities.

For us, having a means to bring people with disabilities together from all over the world to discuss parenting issues has been the most rewarding part of our Internet existence. Parents with disabilities or prospective parents can exchange ideas, give support and share those pearls of wisdom that come only from firsthand experiences.

For more information about Diana Michelle’s Home Page, please visit us at: http://ourworld.compuserve.com/homepages/Trish_and_John. See you on the ’Net!

 

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