Recently I have been reflecting on people who have had a large impact on my life.  I have been thinking about the people who have taught me life lessons, or have given me information/skills that have prepared me for the life I live now.  I have been trying to reach out to some of these people to let them know.  Below is a letter I sent to my biology teacher from middle and high school (I went to a small school, so I took more than one class from him). I never took another science class after leaving high school, but the information this person taught me stuck, and prepared me for life with Lyra.  So next time your child/student complains, “I’m never going to use this information later in life.”  You can tell them, “You’ll never know what you will need.”

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Dear Mr. Bromley,

You probably don’t remember me. I graduated all the way back in 2003. Since we received my daughter’s diagnosis, I have written this letter in my head a hundred times, but I have never put it out there for you to read it. You have no idea what a profound, positive impact you made on my life. And you have no idea how your biology classes have comforted me over the past two and a half years. Let me explain:

As a junior in high school, I remember sitting in your 2001-2002 AP Biology class in under the red tail hawk. At the time we were learning about the reproductive system and touching a bit on genetics. You were trying to impress upon us how complicated the whole process of meiosis and mitosis really is. You began discussing the topic of chrome disorders and how many chromosome abnormalities simply aren’t compatible with life. You spoke of a former student who called you after losing a child soon after birth due to one of those disorders.

As a teenager I was profoundly impacted by this lesson and this story, even if I believed it wouldn’t happen to me. It would always be that I knew someone, who knew someone that experienced this.

Fast forward to June 2015, on the 7th floor of Children’s National Hospital in Washington D.C. The room had a beautiful view of the city and weather was alternating between sunshine and thunderstorms. We waited for a team of doctors to come talk to us about our daughter’s genetic test results. At only six weeks old she was on her third hospital stay. We had almost lost her once and she was recovering from emergency surgery on her airway. No one knew why she was struggling so much. In my head, I was reviewing that lesson from 2001. I understood how complicated everything was. I just wanted to keep my baby.

As the team of doctors came in the room, and the geneticist began talking, I knew it wasn’t good. But strangely, I found comfort in your AP biology lesson from so many years before. I knew what chromosomes were and what they looked like. I understood what a trisomy and a deletion were. I also understood how something like this could happen. How complicated meiosis was. How it wasn’t really my fault that my daughter was born with both a trisomy and a deletion. It didn’t make the doctor’s words any easier to hear, but at least I felt like we were speaking the same language. Thanks to you.

So here is another story for class. Below is a picture of Lyra Jane. She is the first documented case to have both a p9 trisomy and a p16 deletion. She will turn 3 in May and continues to surprise her care team (I think we are at 8 doctors and 3 therapists). While she is very developmentally delayed, she is a happy and social kiddo who loves her family very much (even if she can’t say it). We still have no idea how long we get to keep her, but we are enjoying every day with her.

Thank you for you lessons and for giving me tools to better understand what was going on while I was so scared. Thank you for preparing me for a part of life I never saw coming.

Thank you,

Jaime

*This letter was sent to my teacher before it was posted to my blog.  I wanted to give him a chance to read it and respond before letting the rest of the world read it.*