And Hannah Makes Three
By Kara Ayers
My family isn’t one that can be captured by the stick figures you see adorning the back of so many minivans. It’s not one illustrated in the pages of most children’s books. And it’s certainly not what most people would describe as your typical family. My husband, Adam, and I have osteogenesis imperfecta. OI is a genetic condition that causes our bones to break easily. We are little people and full-time wheelchair users. After dating for nine years, we were married almost two years ago. It was a day that was so perfect, it still feels like a dream.
I learned long ago that the stereotypes and judgments held by people about Adam and me aren’t usually encased in their words. It’s often what is not said. Several of our friends were married around the same time we were. Almost immediately after our celebrations, my fellow brides would complain about the annoyance they felt when people peppered them with questions about when they were going to have a baby. That certainly wasn’t a question that people lined up to ask us.
It was a question, however, we were asking ourselves. With no models of a family like us, could we do it? We knew there was a 75 percent chance that Hannah would have some form of OI. Could we parent a child with OI? Would we be able to raise a child without OI? Few people know how much planning occurred in the months, and even years, leading up to those two beautiful pink lines on the pregnancy test. We’d found cribs, strollers and baby carriers that could work for us. I’d voraciously read anything I could from the perspective of other parents with disabilities. We’d had the life-changing opportunity to be godparents to a beautiful little girl, Jasmyn, whose mother also has OI. We’d visited specialists, and my husband has a knack for mentally mapping how we’d make lifts and transfers to parent independently. We knew that we’d need different vehicles and it would be important to stay physically strong.
However, the most difficult preparations were those to mentally ready ourselves for the likely probability that there would be — and will always be — people who doubted our abilities and worth as parents. After we announced our exciting news, people did finally ask a question: “Were you planning this?” They had absolutely no idea.
I can fully state that I was ready for parenthood. After Adam purchased half a dozen pregnancy tests to truly confirm the news, he was, too. My pregnancy was exceptionally healthy. I credit years of competitive swimming and the incredible foresight of my mother for ensuring that my body was strengthened by surgeries and physical therapy intended for greater goals than just the ability to walk. I swam several times a week for much of my pregnancy to maintain lung strength. With such tight quarters, my belly grew straight out. While teaching a college course later in my pregnancy, one of my students asked, “Are you going to get a maternity wheelchair, Mrs. Ayers?” The shift from children’s to maternity clothes was hard enough. Thankfully, I didn’t get large enough to need a different wheelchair.
I did learn to push my chair differently, though. My growing baby graciously offered me a preview of what would be a requirement for my parenthood that wasn’t discussed in the book, What to Expect When You’re Expecting. Adam and I would need to redefine accessibility. It would no longer be determined by our individual abilities, but would be defined by the needs of our family. The process of redefinition was initiated by the sudden discovery that I could no longer bend forward to push up ramps or hills. I came to this unfortunate conclusion after pushing up … and rolling back down a small incline from the parking lot to the building where I worked. It was an incline that I’d pushed up easily just days before. For the remainder of my pregnancy, I arranged to arrive at the same time as a co-worker who provided a quick push.
I began scanning parking lots, curb cuts, and grassy areas with an even keener eye on incline. This skill has proven valuable. Our primary mode of transporting the baby outside the house is her stroller. Each of us guides it with one hand and pushes one of our wheels with the other. Too steep of an incline isn’t an option until one of us learns to walk.
As my pregnancy progressed, we found that we’d also need to readjust our reactions to other people. Even blinded by hormones, I almost always found the humor in people’s baffled expressions when they learned I was pregnant. For some people, it just did not compute. When I was around 8 months pregnant, we were congratulated by an employee of Babies R Us while we registered for a few last-minute items. She touched her heart and said, “It’s so nice they let people like you adopt.”
Many a sleepless night during pregnancy, I worried less about our family and more about the world my child would have to deal with.
Handling Others’ Doubts
Ready or not, Hannah June entered this world on June 10, 2010. I was so incredibly grateful to have held her for 37.5 weeks. Her actual birthday remains somewhat of a blur. My epidural didn’t go exactly as planned, and I was put under heavy anesthesia seconds before her C-section birth. Somewhere between the rush of family members, friends and nurses, there were a few moments that I was alone with Hannah during her first few hours. I’d heard that it’s an emotional time but thought the near completion of my Ph.D. in psychology could trump those pesky hormones. I was wrong. I cried and apologized to Hannah. I told her how much I already loved her, how she was perfect, and how her parents were not. My years of disability culture, advocacy and pride flew out that 11th story window. I knew it would not always be easy for Hannah to have parents with OI. Yet I apologized that day not for our imperfections, but for the heavy weight of oppression that she, too, will feel.
We brought Hannah home on the most beautiful Tuesday I’ve ever seen. This was the best day of my life. Her two bulldogs immediately displayed their cautious love and briefed her on their years of experience living with parents who have OI. Finally, we were able to put our plans into action. The transfers that we’d thought for months would work, did. And from the start, she has been a happy and healthy baby.
Wasting no time, Hannah offered her first smile on her second day home from the hospital. In response to the endless questions related to how we’d get Hannah in the car, we made a video to demonstrate our approach. I still laugh at Adam’s unshaven, bleary-eyed performance after our first few sleepless nights. We did, and still do want there to be more information for prospective parents with disabilities. But we’re also constantly fighting the temptation to do whatever it takes to stop other people’s doubts.
Some doubts represent such ignorance that we can’t help but laugh. We recently welcomed a new neighbor to our complex by introducing ourselves to him and his children. After we introduced Hannah, he cocked his head and asked, “So she’s your daughter?” Affirmative. “And she lives here? … with you?” In his typical response to further leave people befuddled, Adam answered, “Well, sometimes she prefers to live out back with the geese. But usually, yep, she lives right here with us.”
Other doubts are more hurtful. It’s these that I fear will be the most difficult for Hannah. A few weeks after her birth, we took Hannah to a wedding. It would be her first chance to meet several people close to us, and we were so proud. My anxiety peaked, though, as I had to rely on others to help push her stroller through the grass at the outdoor reception. Not yet skilled at stating my boundaries for her, I experienced the edginess of motherhood when others walk out of your sight with your child. It had already been a challenging evening when a little girl tugged on my arm. Shaking her head, she said, “We just can’t believe she’s not disordered, ya know?” Confused because I knew she had no way of knowing Hannah’s disability status, I asked, “What do you mean?” Matter of factly the child said, “Well, because she comes from a disordered family.”
Prior to Hannah’s birth, I might have felt that education and awareness is all that’s needed to remedy such ignorance. My focus now is on the hope that I can at least partially immunize Hannah from some outsiders’ belief that our family is anything but the strong and loving one that I know it is. I left that wedding with more gifts than the bride and groom received. I’d learned the need to be more assertive, the challenge to be flexible, and the call for courage that I would need to answer henceforth with pride.
We will not allow Hannah’s childhood to become a battle to prove other people wrong. Once one question is answered, doubters will always have others. “But how will you ever get her in and out of the car?” quickly became, “What will you do when she’s too big for your lap?” And that has since matured into, “What in the world are you going to do when she crawls?” We’re as prepared — and at the same time completely surprised by each new phase of growth — as any other set of new parents. I’ve wiped the phrase, “I can’t wait for her to …” from my vocabulary because I can and I want to relish each of her milestones. Each brings a new challenge, but each has also introduced welcome benefits.
She is heavier now, but her stronger muscle tone allows her to help more when I lift her. She rides on our laps perfectly sandwiched between our legs. Our family learns together. Hannah’s already shown an interest in standing. She’ll soon be taught to walk by two people who don’t! And yes, we’re preparing for that, too.
Some people are impressively creative with the lengths they will go to in thinking of something, anything, that we simply will not be able to do for or with Hannah. So far, I’ve confirmed for interested others that no, I likely will not be able to spot her as she learns to do a back handspring, and no, we can’t carry her to the top of those bouncy slides at fairs. I have faith she’ll be all right with that.
With our genes, Hannah has inherited an amazing gift. She’s already a loved member of the disability community. We are a family with a disability. The very things that some people question already bring Hannah a sense of peace. When she’s upset, she likes nothing better than to be pushed around in one of our chairs. It’s what she felt in my womb, and it’s her normal. She has no idea that most parents are not able to join their babies in the crib while they enjoy a late night bottle. The side door to her crib is the perfect size for us! We climb in, feed her, and sneak out as she drifts back to sleep.
We’re also becoming adept stroller drivers. Adam has mastered guiding the stroller, his wheelchair, and our two dogs for a roll. To credit those that tend to stare, I’ll admit that these strolls around the block are quite a sight! A trip to the mall is equally interesting to many people, though. Pushing behind Adam, who’s pushing the stroller, I’ve nearly lost my life to the incredibly large walking people who have their heads completely turned, walking aimlessly in a trance. I’m always on the lookout for the characteristic able-bodied sideways shuffle, but I’ve nearly been tripped over more times than I can count since Hannah has joined us. We’ve also had to fend off more than one well-intentioned stranger who has grabbed her stroller because they “just want to help.” I actively work to quiet the tempting urge to stay in, avoid others, and enjoy our family within our cozy, adapted and safe home. Hannah’s here to see the world, and we’ll make sure she has that opportunity.
What I’d somehow like to convey to those “interested others” is how I’m not embarrassed to say that there are many things our family does better because of our disability. We work together, we communicate and we parent interdependently. Hannah’s body image will be shaped through the lens of pride, not peer pressure or cultural bias. We’re creative, adaptive, and we see both the humor and the beauty in the imperfections of life.
Adam and I can’t wait for Hannah to attend her first disability conference. We’re desperately searching for inclusive play programs, and she enjoys most Saturday mornings watching her daddy and other friends play wheelchair football.
Disability is not the central aspect of our family. Our family is built on a sturdy foundation of love and pride. It’s not a pride that any of us were born with. As one of our family’s late heroines, Laura Hershey, wrote, “You get proud by practicing.” Our years of preparation for Hannah will be followed by years and years of love — and being proud.
Glen Dick, 41, a C5 complete quad, and his wife, Monica, also 41, recently celebrated their daughter Elaina’s first birthday. Her conception and birth was the result of years of research, perseverance and commitment. The family lives in Chalfont, Pa., where Monica works in marketing and Glen, previously a teaching assistant, is a stay-at-home dad. In this interview, Glen shares how he and Monica were able to get pregnant:
New Mobility: After your injury, what were you told about your ability to father a biological child?
Glen Dick: I’ve been a quad since 1995, when I was pulled off a dock into shallow water at Dewey Beach, Del., by a friend of a friend. We were just guys messing around in the water. I was 25 at the time, and even though young, it was a goal of mine to be a father. I was drawn to fatherhood. Initially the doctor said I could father children, since at first after an SCI the sperm are viable, but become less so over time. But this was 10 years before I met my wife, Monica, so becoming a father was on the back burner. I was getting my life back, and it seemed a tall order to find somebody who would look past my limitations and all my junk — I definitely wanted to find someone who also wanted children.
After Monica and I met in 2004. we started looking into having children, but first we had to conquer erectile dysfunction. Aside from children, it was important for intimate reasons. We tried Viagra pills initially, and I don’t know if the timing was off, but they weren’t successful. Then we used a vacuum pump, and that was semi-successful, but clumsy. I tried injectibles, and they were also semi-successful, but invasive and time-consuming. So I went back to Viagra, only this time instead of 50 mg, I took 100 mg, and we had great success with that.
NM: Were you able to ejaculate on your own?
GD: Some quads are, but I wasn’t able to, so we had to look into an alternative method. I’d heard of electrostimulation, but that’s outdated and has to be done in a clinical setting, and the risk of dysreflexia was higher. Also I wanted something I could do in the privacy of my own home. So my urologist recommended a vibrator. I bought a FertiCare for $700, not covered by insurance. We figured, I’m healthy, she’s healthy, and we thought my sperm was viable, but we weren’t successful. I could get an erection and ejaculate, but it’s different without the muscles working. It kind of just dribbled out. I needed help. That’s when we contacted fertility experts. We were 38 when we started that.
NM: What procedures did you try?
GD: I was lucky to have insurance that covered six trials of intrauterine insemination, but we didn’t have success. Also, I realized the clinics are geared more toward women’s fertility than men’s. They didn’t even offer electro. They did offer aspiration — putting the needle right into the testicle. But when sperm is taken directly from the testicle, it’s kind of sleepy, less motile.
We’re lucky we had the Ferticare, since they left it up to me to get my own samples. We had our appointments in the morning, and I’d get a sample real quick, then keep it warm, keep it sterile. You have an hour when it’s viable. The clinic’s 40 minutes away. When we got it there, they’d wash it before IUI. After we did a couple that were unsuccessful, we got a urologist involved through their clinic, not my own urologist.
I thought that with an SCI, it’s just about getting the ejaculate out. But the urologist said motility, morphology (shape), and quantity are all important. Also he found I had retrograde ejaculation — some sperm was going back into my bladder and being contaminated. This is connected to how men cath. I use a Texas [external] cath, so I usually have some urine in my bladder. I take meds to help the urine flow, but when it comes to ejaculation, you want to have an empty bladder.
We’d go in the facility, the doc would cath me and flush my bladder with Hibiclens, a solution to sterilize the environment, so if the sperm did go in there, the solution kept it safe. Then I used the vibrator, and the sperm would have to be washed from the solution. Then we were able to select from both samples, including the retrograde. Anything in the normal ejaculate, no matter how small, is usually the best sample. We froze some, to have samples of the best.
NM: What toll did these procedures have on you and Monica, and what finally worked?
GD: They weren’t giving me what I needed. It was geared toward Monica, putting her on fertilization drugs, because of her age. That was another thing we faced. My injury, her age. Also, insurance didn’t cover the meds. You’d think if they covered the procedure, they’d cover the meds, but it was probably $1,000 for her meds for increased egg production. We went through six IUIs and none of them were successful. We don’t know why. Did the egg not get fertilized? They don’t have the capability to figure out why. When you do IUI, you have a two-week waiting period, and that’s the emotional rollercoaster. Waiting for the phone call, or for her period to know if it was successful. We were on the edge of our seats. The first time I thought no problem, we did the procedure, we’ll get good news. I was hopeful, but the failures started to deteriorate my hope.
We looked at our savings and ways to come up with funding, and tried in-vitro fertilization next, using a new process called intra cytoplasmic sperm injection, which means one single healthy sperm is injected into the egg, so they know they have penetration. We thought that’s more of a guarantee, let’s try it. This time the meds they put my wife on were more substantial, so she’d produce more eggs. It was close to $5,000 just for her meds. They focused on her to give my guys more targets.
Our life became built around this process. Since she had to stay close so they could watch her cycle, we canceled vacations. After two years of using up all our insurance, and the IVF using up all our funds and savings, we were financially and emotionally at the end. We had money for one more procedure. We said we’ll try one more time and if that didn’t work, we’d look into adoption or accept that we were unable to have children.
I was a teaching assistant for a special ed class at the time — and at the end of the day, we were supposed to get the news. I’d come home and know it wasn’t successful because she wasn’t on the porch. The door didn’t fly open. So I’d console her. It was difficult because I had to deal with my own feelings as well as hers, and try to be strong enough to pick up the pieces and move on. But in March 2009 we got the phone call. It worked. Monica was pregnant.
NM: How’s life as Dad?
GD: I find myself staring at Elaina’s little hands, how she is able to manipulate her fingers. And I watch her walk. She used my wheelchair as her first walker. It’s neat to see her abilities quickly surpass mine. Elaina is very fortunate because she will have to learn her independence. Growing up with my disability will teach her about her own responsibility and independence in the long run. I’m going to have to talk her through it, and allow her do it on her own. It’s better for children to learn this way.
She loves riding on my chair and in my lap and I realize that she sees me as just Dada, not Dada in a wheelchair. We found every possible way for her to ride on my wheelchair — my lap, my footrests. We use a Boppy pillow, and I can feed her the way I feed myself, so now I’m in charge of meal planning and feeding.
We’ve become “those” people … all we talk about is our baby. They become the center of your life. I may have a disability, but I am fortunate enough to have the one thing needed, time. I am so lucky.
Nutrition and Sperm
Proper nutrition is critical to growth and quality of sperm. First, Glen quit smoking and drinking (so did Monica). Glen also began taking Vitamins C and E and selenium, folic acid, B6, B12, iron and zinc, all included in a supplement. Also, amino acids L-carnitine and L-arginine are available in ProXeed.
He noticed a dramatic increase in quantity and quality of sperm after
using these supplements for three months (the length of a sperm’s growth cycle). But “the kicker,” Glen says, was taking Clomid, introduced by his urologist. “We had success directly after I began taking that. My numbers went through the roof, especially motility. I was well into the acceptable range after this. Between that and the vibrator, we probably had the best success. Now we are at the stage where we’re able to try for a second baby.”