When I was 8 years old I was called out of fourth grade and into the principal’s office. I sat nervously in the office full of large and intimidating furniture waiting to hear what I had done wrong. My principal, who later went on to supervise the district, flipped through a manila file folder with my name on it for a minute then looked over it at my fearful eyes and said, “Don’t worry, you’re not in trouble. I just wanted to ask you about something.” My sigh of relief was so dramatic but necessary to me that it was nearly comical. After stifling some laughter out of respect for me he went on.
“It says in your file that you are still in foster care. You have been with this family for a very long time. Why haven’t you been adopted yet?”
“I don’t know.” My look must have been so miserable and confused that he decided not to press the issue further with me. Instead, he dismissed me back to class where 22 other students eagerly waited for a moment when our teacher wasn’t looking to ask me if I was in big trouble.
At the time, this little visit to the principles office was monumental for me because I had never been called into that foreboding and feared place of discipline before. Years later, I can see that it was much more monumental than a quick trip to a serious place for a student. It was actually the catalyst for my adoption. My principal played a leading role as a writer in the story of my life by pushing for action that led to my final adoption.
I was 8 years old when I was adopted but I was placed into foster care as an infant. I knew my mother because once or twice I saw her from across a crowded aisle of church pews before she quickly left. No one had to tell me it was her. I knew with an instinct so deep and true that it defied the logic of my foster family.
Being adopted left me feelings of rejection and insecurities that wound deep into my understanding of who I was as a person. Naturally, I struggled with this throughout those pubescent years of angst. As I grew more mature I found myself at peace with it. I no longer thought about it often and when I did, it was more with an understanding of the courage and care it took my mother, who was young, alone, and afraid, to carry me full-term and give me life.
The full reality of this came when I was pregnant with my first child. I imagined what it must have been like for her to carry me, knowing she would not be in my life, and willing to do it anyway.
If you’ve read my story, then you know my first baby was unexpectedly stillborn followed by a second unexpected stillbirth a year later. Clearly, something was wrong and I needed answers.
Before this point, I had always tried to respect my mother’s right to a second chance at life with her husband and children. For all I knew, they had no idea that years ago she had carried a little girl in her womb that still thought of her as mom. I didn’t feel like it was fair to try to contact her to appease some sort of emotional turmoil I had inside of me when it may have meant placing emotional turmoil on her, her marriage, or her daughters.
Two dead babies is a game-changer though. I knew something was wrong and I had to figure out what it was before I lost baby number three.
I needed my medical history.
Until this point, every medical history form that I had ever filled out consisted of a giant X marking out the half page of questions asking my family medical history.
There was a major puzzle piece missing and marring the big picture of my health.
I tried to approach my mother as fair and respectful to her life as possible. I knew of a mutual friend between us that could talk to her on my behalf without me showing up and possibly turning her life upside down with my announcement.
Our friend explained my medical troubles, the losses of my babies, and my desperate need to find out medical history. She conveyed my intentions not to interfere with her life and my request for just a piece of paper with some family medical information.
I don’t know why my mother denied this request. I’d like to think that it was because she felt her new life threatened by connecting with me but honestly, it’s hard to wrap my mind around withholding such vital information from someone who desperately needed it. Nonetheless, she has a right to her privacy just as I do and she chose to hold onto that right over helping.
I had to fight to be tested for diseases doctors assumed wasn’t in my genetic background, and thankfully, discovered and was able to be treated for intrahepatic cholestasis of pregnancy before my third child was born.
Not long after the autoimmune disease that is linked to ICP also became a reality for me. Still, doctors would ask, “How many people in your family have autoimmune diseases and which ones?”, only for me to shrug my shoulders and leave another mysterious hole in my medical care.
I refer to myself as an autoimmune mess because I have mixed connective tissue disease, an autoimmune disease that seems to overlap the major symptoms of several autoimmune diseases. As I struggle with this chronic illness I know that statistically, it is probable that I will develop another autoimmune disease. I often wonder what other autoimmune diseases lurk in my medical history that I might be susceptible to. I wonder if there are cancers and other maladies I am prone to develop that I should take into consideration as I chose treatments and lifestyles to deal with my mixed connective tissue disease.
These are no lightweight diseases or choices. The lack of information in my family medical history is a huge hinderance to me. My mother’s unwillingness to provide that information seems to place an unpassable road block before the bridge of information that I need.
Is there a way to discover my propensity for certain ailments and diseases?
If you have ever tried to fill in gaps in your family medical history or wondered what diseases you might be at risk for you cannot miss part 2 of this.