I am Small, but My God is Mighty - by Sharon Shary

I am small, but God is mighty. As with any family, God allows events to happen in a family’s or individual’s life that are life changing. I was born in our local small-town hospital, weighing only 5 pounds 9 1/2 ounces and 18 inches long. I was a “healthy” baby, but I had a swollen foot and puffy hands.

The doctors apparently examined me and couldn’t put it together that something was wrong. I believe my family doctor sent me to a specialist about my swollen foot, but they thought it was not harming my health and that I would probably grow out of it. My mother continued to keep track of my weight and height as I was growing up. Friends and family, along with my parents, sensed there might be something physically wrong with me, but no one could identify a specific problem. Everyone was content to believe that I would always be small for my size and that it was just part of who I was.

As a baby, I cried a lot due to frequent ear infections, but they loved me just the same. My family trusted what the doctors had told them and didn’t have any other resources to think differently. Growing up living a fairly normal life as any child, I continued to be the smallest child in my class at school. Many thought my small stature was endearing, and most couldn’t believe how old I was.

Now at about fifth or sixth grade, most young girls are developing into young ladies, but I was still the smallest in my class and appearing younger than my actual age. When I was about 11, my family moved to a new area and school district. As part of health requirements, the sixth-grade classes had to have an exam by the school nurse. I remember the nurse checked our height and weight, as well as any curvature of the spine. She must have suspected something during my exam. I believe I only saw her once or twice, but it must have been the providence of God. After the exam she called my mother and encouraged her to set up an appointment to see an Endocrinologist.

My parents discussed it and at first my father was hesitant. He must have felt that other doctors and nurses I had seen growing up would have noticed something if something were wrong. My mother convinced him they should make an appointment with this specialist to be certain nothing was wrong. I don’t remember the nurse’s name, but I will forever be grateful to her for making that phone call to my mother.

The day came for the appointment, and I still remember it vividly. We drove to the hospital very early in the morning on a fall, cloudy day. This was the first of what was to be many doctor’s appointments that followed. The endocrinologist examined me and reviewed my medical records. It didn’t take him long to come up with a diagnosis. He took some time to talk with my mom and I about Turner syndrome (TS). He stated that it was a recent discovery with the advancement in genetic research. I didn’t fully understand a whole lot of what the doctor was explaining to my mom. I was I guess preoccupied by the possibility that something serious was wrong with me and a little scared of what all of it meant. I may not have totally understood everything, but one thing I did understand and couldn’t get out of head was, that I would never be able to have children of my own.

Afterwards, I went to get my blood drawn for a test (karyotype) to confirm the doctor’s diagnosis. It confirmed I Classic TS. My mother decided we should have some mother and daughter time to talk. She took me out to lunch before taking me back to school. Mom tried to explain to me what the doctor had said about my potential diagnosis. She wanted to make sure I totally understood what all of it meant. She explained the female anatomy and why the doctor said I could not have children. In retrospect, I also think she wanted to see how I felt. I distinctly remember that I had a peace and calm about the diagnosis. Call it my innocence and maybe naivety, but I felt God’s presence and felt that this was His plan for my life. Maybe I wanted to not upset my mother as well. I wanted to handle this like I had been raised. God does not put us into circumstances that He doesn’t give us the strength to handle.

I had my “pie in the sky” ideas of God’s plan, but I knew He had a plan and future for me. I didn’t want to have any thought of letting this diagnosis hinder me from achieving my dreams for my life.

From the age of 8 or 9, I had a love for children. I would love going to help in the nursery at church. I, like many young girls my age, thought about having a family and children of my own one day. When I thought about what I wanted to be when I grew up, I would always think about being a wife and mother. God’s presence in my heart must have been with me because at the time, I didn’t seem to be bothered much by the diagnosis. Maybe reality hadn’t set in quite yet, but I was determined to have a positive outlook on this.

After my initial diagnosis, my parents made another move back to where we were from. I started a new school and started to see a new doctor at a teaching hospital with a medical school. I didn’t know at the time what it meant to be seen at a teaching hospital, but I quickly found out. This first appointment, as well as the many appointments that followed, usually started with a resident doctor coming in to ask questions of my mother and I about my medical history, along with a brief physical exam. Then the resident doctor would present my case to Dr. K and then they would both come into my exam room to finish asking questions and complete the physical exam. They sometimes would talk about my case like I wasn’t even there. Dr. K. was very academic and didn’t have much of a bedside manner. I was a little intimidated by all of this, so I usually did not talk much or ask questions and leaned on my mother to do all the talking. Sometimes I found it fascinating to listen to the doctors talk about my condition and how Dr. K. would point out all the physical features I had that were typical signs of TS. This made me feel somewhat important that I was helping young doctors learn about Turner syndrome.

I guess the worst part of visiting the doctor was the physical exam. I wasn’t really prepared for the type of “female” exam he would do. I was about 12 years old and was only beginning to learn about the “birds and the bees”. I was embarrassed when these doctors would examine my private areas. However, the hardest part was the anxiety of learning there could be different things that could be wrong and impact my life long term.

I continued to make my annual visits to see Dr. K. during my teenage years and most of the time the visits were uneventful. I would miss a few hours of school and be back to my routine everyday life. But it was always awkward for me. Do my friends notice I was out of school? Do they wonder why I had to see a special doctor? What do I tell them if they ask me questions? How much do I tell them? Will they understand? I didn’t have any answers to all these questions. I knew I was different from my friends, but did they notice? What do they think of me? Would I be accepted by my friends?

That’s what concerned me. It was hard enough for a normal teenage girl to be accepted and feel included by friends, but add to it my physical differences, and I felt like I had a mountain to climb over! I never said anything to my friends about my condition. I felt like they wouldn’t understand, plus it was uncomfortable to talk about all the personal female things involved with TS.

Dating was a whole other issue I was uncomfortable with. I wanted to be “normal” and have dates like my friends, but I was uncomfortable. Should I tell my date about TS and when should I tell them? But getting a date was difficult enough. I did find friends and my niche in being involved with high school band, orchestra, and chorus, as well as church youth groups. My family barely talked much about it. They wanted to treat me as if I were a normal teenager, which wasn’t wrong, and I did want to feel as normal as possible. In my family’s perspective, TS didn’t exist if it wasn’t talked about.

I guess my family thought they were protecting me. However, I felt like I had no one else to talk to about it or someone who truly understood me. I didn’t know any other girls who had TS. God did provide some friends throughout my high school years who accepted me, and I felt I could trust them with sharing my diagnosis. However, I didn’t share or talk about it with anyone very much because I felt they really could not understand my feelings or what I was going through. I guess it was difficult to trust anyone because I was afraid they would use it against me or treat me differently. I didn’t want anyone’s sympathy or pity. I didn’t want to be thought of as a victim. I just wanted to be understood and accepted.

In retrospect, I didn’t like to be thought of as “cute” or thought of as younger than I was. I wanted to keep up with my peers doing everything they could. I wanted to be thought of as “pretty” like other girls my age. “Pretty” sounded more mature than “cute.” I wanted to be respected for my age and not looked down upon or looked over because of my size. I didn’t like when people didn’t pay much attention to me because they thought I was too young. I was everyone’s “little sister.” I tried to overcome that by being gracious, sweet, and kind. I tried to overlook when other people overlooked me or didn’t pay much attention to me. I tried to overcompensate by keeping up with everything my peers did, which included playing an instrument and singing both in school and at church.

After high school, I attended college, but it was a challenge for me both socially and academically. Looking back, I probably wasn’t ready, and I was not sure of what I really wanted to do as a career. I struggled with finding the right fit for a career but ended up becoming a medical assistant and worked at the hospital I was treated at for TS. I worked in a pediatric clinic for 8 years there, which satisfied my need to be around children. I then decided to go back to college, and I earned a master’s degree in elementary education. I taught special education and was a reading specialist for 20 years and retired in March of 2020. I enjoyed being around kids and always told my students that I treated them as if they were my own. God gave me many “kids” of my own. God also blessed me with a husband, stepdaughter, granddaughter, and another grandchild on the way over the last fifteen years.

In conclusion, I have had my ups and downs over the years living with TS. I’m still learning a lot about TS and try to walk through this life with grace and faith, although I sometimes fail at doing that. I believe God made me just the way He wanted and has plans for me, and my story hasn’t ended yet. I want to encourage my TS sisters to continue to walk and grow. Be your own fiercest advocate and gain as much knowledge as you can about TS. I would say the same to parents. Instill in your TS butterflies confidence and consider that God gave you a special gift He thought you could handle. Finally, I’ll end with this. When I was a little girl in elementary school, the one comment I had on my report card more than once was “little but mighty.” I like to think that I am small, but my God is mighty.