Survivor: Part Three

By Liana Carlan

Freed from my wheelchair and determined to seize life for as long as I could, I roared into high school ready to try everything. You name it, I was involved: singing, instruments, drama, prom committee, visiting the elderly, environmental committee, open house committee, even the cheerleading squad.

It was in high school that I embraced my individuality, and in the process, made many friends due to my outlook on life.  The "episodes" still happened frequently, but they became less detrimental because of my growing support system.  By this point, I was about 70 percent deaf, and severely myopic. My fragile back was getting worse, yet I still refused to wear the back brace.  Maybe it was stubbornness or maybe vanity. Whatever it was, I wasn't going indulge in a self-induced pity party.

What surprised me the most was that I was still alive.  The doctors had upped my life span to around 25 or 30.  I believe it was my positive thinking and obnoxiously outgoing attitude that kept me kicking.  I was accepted into Assumption College in Worcester, Mass. and they let me declare biology as a major as a freshman.  My goal was to become a pediatrician. I was determined to find a cure for my disease, or at least find out why I was the only member of my family to have such a rare genetic condition.  Then the troubles began.

During my first semester, my parents declared that they were moving to another state to try to fix their marriage which, at that point, had become damaged due partly to their own personal issues.  But, I was convinced that my health issues were a major cause of it, that in some way I was responsible for their troubles.

I felt guilty, so I did what any person in my situation, with my history, would have done.  I went with them. My mother had recently had surgery. I wanted to be close to her and help her through her difficulties. By being there, I hoped to ease their concerns about me being out of state.

I realized quickly that I had made the wrong move. They had moved to Delaware and I hated the state, the people, the way of life, everything.  I had no friends or other family around me.  All I had were my parents, who had their own problems to deal with.  I tried living at the University of Delaware, but I never quite fit in.  It was a miserable, lonely, depressing four years. Thank God, my parents eventually decided to move back to Massachusetts, which was where my life finally began to start looking up.

I lived with my parents when we moved back to Boston, but I had no privacy, and my mother was constantly all over me for one reason or another.  I finally snapped and packed up my things, moved into a friend's house and got a part time job at Einstein's Bagels.  My first day of work, I met the manager. His name was Shawn. We felt an instant attraction.  He told his mother later that it was "cosmic."  We moved in together a week later. Shawn had a one-year-old son from a previous relationship.  He was going to college and working.  He had a few tattoos on his arms, which my parents found horrifying. But he was a gorgeous, smart, artistic and sensitive guy. Three years later, we were married.

I was taking birth control pills which are 90% effective in normal people. As per usual, I had to be the exception to the rule.   My mother immediately suggested I terminate the pregnancy.  I told her there was no way in hell that was going to happen.  If this was going to be my fate, then so be it.  My obstetrician immediately diagnosed me as High Risk.  He scheduled the C-section for Thursday, May 15, 2003.  

We knew it was going to be a girl and I was determined to do what had to be done to get her into the world. As we thought about names for her, my husband and I kept changing our minds.  One night, after a good amount of wine, my mother and husband came to me. They had an epiphany and came up with a name:  Shanna -- Shawn and Liana smooshed  into one name. It was perfect. When they happily made their way back into the other room, I looked up the meaning of the name. Shanna meant "precious gift from God."  She certainly was.

I had made it through my pregnancy and her birth was an amazing experience. It seemed that everything I had gone through in life was pointed to this moment, when I would bring a child into this world.  Best of all, there were no signs of the maladies and conditions I had lived with since I was born. My daughter was healthy.

I can remember breast feeding Shanna.  It was trying, due to the breast reduction I had at 19 because the doctors felt that the weight of my breasts could cause me to become paralyzed.   I wanted to attempt it, though, not only because it was a wonderful way to bond with my daughter, but also because the colostrums would help keep her immune system strong.

One day, after I had finally switched to bottle feeding, my mother was at my house and I asked her if she wanted to feed the baby. She was ecstatic. She kept asking me questions about it: How much formula?  How should she hold the baby?  How should she put the bottle in her mouth?  I joked that it hadn't been all that long since she had a child, had it?   She looked at me and said, "Yes, but I never got to bottle feed you.  You were always fed through a tube." 

I know that I speak harshly of my mother, but it is hard for me not to at times.  We have had a difficult, contentious and complicated relationship. After I gave birth to Shanna, I decided to have my daughter be a peace offering to my mother. I wanted her to experience as a grandmother something she never had as a mother - the joys of having a healthy child. And she has been a wonderful grandmother to Shanna.

Beating the odds once and having one healthy child was enough for me. At age 26, I decided to have a tubal ligation. God had blessed me with a pregnancy filled with nothing but happy memories, an uneventful childbirth with no complications, and a beautiful, healthy baby girl. There was no need to tempt fate.

I was prepared to lead a life as close to normal as I could as a mother and a wife. So, naturally, I wasn't prepared for what happened next.

Tomorrow, Part Four: "Six months after my daughter was born, I got a phone call from Children's Hospital...Since I was among the first of many people diagnosed with the disease, would I be interested in being tested? I went and had the test done..." 

Flag Photo: Shawn and Liana Carlan

Text Photo: Shanna Carlan