Infertility and ME - by Susan Jennings

Turner syndrome (TS), and the loss of fertility that comes along with it, really was a roller coaster ride. It certainly was for me and my boyfriend, now my husband.  And don’t forget our parents. 

It all started when I was about 11 years old.  I had finally ended the adventure of getting diagnosed with TS along with, most importantly, my parents. But that is another story. I had just been buckled up in the station wagon preparing for the 35-minute trip back to the house from the endocrinologist’s office when my mother started her talk. 

“Okay, here is what the doctors said today.”  She understood that appointments for my care were mostly directed at her; the doctors rarely talked to me or maintained much eye contact with me during them. This was, after all, 1976.  “You know your Aunt Mary Katherine and your Uncle Larry”, she continued.  Fortunately for us there was a family member who had suffered this kind of monumental loss. There was the great blessing of an example for my parents, who had for the most part been on this odyssey without a roadmap. My aunt and uncle had given birth to not one, but two still-born babies after the horrors that were R-h factor disease. 

Again, that is another story. My aunt and uncle had subsequently adopted two children, my cousins, Paul and Nancy.  “You know how the doctors have been wrong in the past. Well, they are now saying that you might have a problem having children, like your Aunt Mary Katherine did. The doctors might be wrong, but they probably are not,” she said. It was a reference point - something to help us feel less alone. It was at this point in my life when I started collecting baby stuff. I got a small bin and put a baby book and an empty baby bottle in it. I started hoping.

Scroll forward to the teen years.  My sisters were off developing, dating, partying, and being their social butterfly selves. I, on the other hand, was coming to grips with who I was and how to navigate being locked up in a high school building all day with hundreds of hormonally charged adolescents while having this complicated chronic condition. Was I less than female?  Would guys even want to date me? 

I knew in junior high they knew me as Beth and Elena’s “cute little kid sister”, but I did not want that to be my claim to fame. Would they date me for me? I felt immature, less than, inadequate, and all those other juvenile descriptive words. I was the shortest student there.

I had only met one other human being on the planet with Turner syndrome, despite being raised in Houston, Texas with about 3 million other Houstonians. I truly did not date until I prepared to end my senior year in high school. No one asked me to prom.  I lost sleep over it.  I wanted to go, I felt I had to go, I needed to go, but how? I was petrified of going to prom alone. Nightmares! I paced. I thought it over for weeks, if not months. It consumed me.

Somehow, by the grace of God, I got brave and asked a boy who I had had a mad crush on in elementary school. I asked Joey Barnhart, a nice boy who lived a block away from my parent’s home when we were classmates. And even better…he was SHORT! And CUTE!  We had not seen each other since 6th grade. He took me out to a nice Italian restaurant before the dance and chins dropped when we entered the hotel ballroom. I suppose I was not the only one surprised I was attending the event with a date. With plenty to talk about, getting caught up, we danced the night away. My hope bin turned into a hope box and now included a baby blanket and a rattle.  

After high school, I got depressed and felt very alone. I would complain to my family and my roommate in nursing school about how my friends were all in Austin or California saying, “Houston just isn’t the same place anymore!” I had been in nursing school for 2 years and Joey was long since out of the picture. My roommate had been dating the same guy for years. My sisters were dating, of course. I was not. 

My eldest sister, Carol, God LOVE her, gave me an unforgettable piece of advice. That was one of several life-changing moments between us when she was hugely helpful. Oh, you’re right, another story. She said, “Why don’t you just be quiet and go to Autry House. There are lots of students there and you'll have a great time. “  

Autry House was the seat of the Episcopal Student Union and had a small chapel that held about a dozen students very close to campus. The first night I went I thought my heart was going to beat clear out of my chest when he walked in.  Tall, smart, cute, and that first night he walked me back to my car. Lee Jennings, a Rice University student. Houston was crime ridden at the time and I did not know that he walked most girls to their cars, but I was impressed. The very next day, I rushed to my mother to tell her of the boy I had met. 

Lee and I were friends for a long while. We sat next to each other at mass most Sundays and sat next to each other at most church suppers. I started to get frustrated wanting more than friendship from Mr. Lee. Was I “date-worthy”, I asked myself? Those old demonic feelings of inadequacy reared their ugly heads again. I started moaning and groaning to my poor roommate, “I have to ask him out, but I cannot ask him out, but I want to ask him out”.  My roommate started to get frustrated with me and said, “Will you just call the boy and ask him out for crying out loud!” I got brave and asked him out. 

Okay. This is where it gets even scarier!  We are dating now.  It’s official!  Now what?  How in the world do I tell him about my infertility? When do I tell him about my infertility? I felt the relationship moving towards engagement. We had been dating exclusively.

What do I do now? He deserves to know. He needs to know if we are going to go that route. Oh NO! His parents will no doubt end up finding out, right? UGH! I prayed and prayed for the right time, the right place, and the right words. He must be told. I had no clue how he would react. Would he leave me? What will he do?

Then it happened, a divine moment. We were driving back from a church retreat, a 2-hour car ride alone at 55 miles per hour. No phones. No interruptions. No outside distractions. I knew this was it. This was the time. This was the place. Put on your big girl pants and TELL HIM. He was a captive audience. He said, “I am so relieved!  I knew you were keeping something from me. I just didn’t know what it was.”  The hope box morphed into a hope crate with all kinds of infant clothing and baby toys in it. 

We married in December of 1987. I was the only little person in the whole church that day.  My sisters Elena and Beth both got married and made me an aunt. Years passed and there were no babies in the Jennings home for Lee and me, unless you counted the cat.  I would pet that cat on the couch crying, “I’m never going to be a mom!”

I wondered if God wanted me to become a mom. I attended baby showers for my sisters and was honestly thrilled for them. Cute “Gerber babies” that smelled like Johnson’s baby shampoo!  Little by little, it got harder. I found it difficult to even grocery shop; the baby aisle loomed like a dream that would never ever come true for us. Was I meant to be a mom?  Oh, how I ached to be a mom! 

It gets worse! My mother-in-law is an only child. My father-in-law had one sister who never had any children. Our wedding was like something out of a version of the movie “My big fat Greek wedding”.  Lee has no cousins. Lee has only one sibling, a brother, who wasn’t married and decided not to have children. Was I going to chop off the Jennings family tree?  Any children we had would be the first grandchild and the first great grandchild on his side of the family. The glaring huge hole in our lives just got bigger. I wanted to hold a baby. I wanted to hug a baby. I wanted to teach a baby the ABCs. I wanted to dress a baby. I wanted to rock a baby to sleep. I was a pediatric nurse at this point, for Pete’s sake.  I wanted to feed a baby. I wanted to sing to a baby. I know I don’t sing well, but nevertheless… not just any baby. MY baby! OUR baby!  

I wanted to be a mom. Oh, the tears, the misplaced guilt, the loss! But what are we going to do?  We attended workshops with the Turner Syndrome Society of the United States (TSSUS), as well as Resolve. That is where I learned a tremendous amount about myself, and about dealing with what was reality for us. I met other infertile couples, met other women with TS, made some decisions, and came to grips with it; or some of it. 

We decided, after more soul searching than anyone should have to go through, that we were going to adopt. Now I had a hope area in the basement that no crate, box or bin could contain, including the crib. 

Years passed. I am still petting that poor cat. The soul searching got deeper, if you can believe it. There are many kinds of adoption, open adoption, closed adoption, international adoption, domestic adoption, interracial adoption, special needs adoption, private adoption, the list goes on. Whew! We had so many decisions to make! We had to make the choices for us as a couple, but we were also asked to take into consideration what type of support we would get from friends and family. 

What kind of baby were we comfortable bringing into the family?  We attended workshops on openness, read books on adoption, and wrote articles about our experience as part of a “home study” process to adopt. The adoption social worker we ended up choosing learned more about us than our own parents knew!

We were on our knees praying to God that we were making the right decision. I could not bear the idea of dusting an empty nursery for years and years. I also did not want the hurricane of getting “the call” about a baby and having to furiously hit JC Penny to get all we needed. We physically had all our baby supplies. They were just disassembled and tucked away so I did not have to face it daily.  We waited. And waited. And waited.

In January of 1996 we got a call from TSSUS!  It was a frantic call about an adoption agency in New Orleans who had just received custody of a baby with Turner syndrome.  Along with information requests about TS, they wondered if TSSUS knew of any parents who had adopted a baby with TS and would they be willing to do it again. Yes, and OMG!

Next came a mountain of paperwork, and a million long-distance phone calls to doctors, travel agents, and attorneys.  A whirlwind of activity turned our guest bedroom into a nursery, and a couple of weeks later we were in a New Orleans adoption agency holding, kissing, feeding, reading to, singing to, and loving our beloved REBECCA. She is ours!

The moment my father-in-law, Jack, laid eyes on her was incredible! He was remembering his heart scare a few months earlier including 4 heart attacks and quadruple bypass surgery. He said, “I could have missed all this! I could have missed all this!” My father died in April of 1997. They both got to see her! The moment that adoption paperwork was signed and we finally held her in our arms, her whole identity changed. She is a totally different person altogether than if she had been raised in the home of her birth-family. She became a JENNINGS through and through. No doubt about it, she was ours. Our prayers were answered.