Sunday, May 13, 2018

Speechless

Candice and I after our presentation
On Saturday, May 12th, I attended an NF symposium at John Hopkins All Children's Hospital. I was eager to attend not only because I wanted to learn about new research findings on NF but more so because my hero and friend Candice was going to speak.
As I was sitting in the second row, sipping some coffee, I saw Candice approach the podium to speak to the host. They spoke for a few minutes, I figured they were talking about Candice's presentation and the other presenters.
A few minutes before the symposium was to begin Candice called me over, I figured she wanted me to meet the host for the day.
I was 50% right.
I was asked if I felt comfortable, if I could speak on my life and how NF has affected it. It took me less than 30 seconds to say "yes".



Giving my speech
So, I gave an impromptu speech on how NF has played a part of my life for almost 31 years. It was a cathartic experiance and at the same time exhilarating. I realized after giving my speech that I want to continue doing this, what can I say, I am hooked!





Thursday, May 3, 2018

Motherhood Part 1

In March of 2015, Joe and I had a scare. What followed were three weeks of anxiety and stress. I was so overwhelmed that I got sick with strep throat for the first time in my life. When this first came into play, we discussed our options and ultimately decided that we would wait to take a pregnancy test and go from there; I took two, and both gave a negative result.  If I am 100% honest, I was relieved that I was not pregnant. This does not mean that I do not want to become a mother, in fact, it is quite the contrary, I cannot wait for motherhood.

However, I want to adopt instead of having biological children. I made this tough decision when  I was in my early twenties, and I am not changing my mind. I know of many women with NF that have chosen to have children, my own mother for instance, but that is not a choice I want. I've had many conversations with my mom on this subject, and through them, I have learned that my mom at first was not aware of the risks for her or the baby.

My mother had three children, my two older brothers and myself; Francisco and I have NF. After each pregnancy, my mother developed more and more fibromas. She tells me every time we have this conversation that she does not regret having my brothers and me because we are her life; reassuring me that if she knew then what she knows now that she would still have my brothers and me. That I find very courageous and admirable.

Four months into my relationship with Joe, I told him that I did want to have biological children. I told him this after he made a comment one morning as he was getting ready to go to class. I asked him what he wanted for lunch, and his response was, " I can't wait to have you pregnant, barefoot and in the kitchen."  I knew he said that with no malice but his comment sunk my heart.
Here I was with the man, I then thought was my future husband, and he is letting me know that he wants me to carry his child. After he left, I cried because I knew I had to tell him and I knew I would run the risk of ending my relationship with him because of this.  Nonetheless, I found the courage I needed.  Once again I cried as I told him that I would not be giving him biological children and how I understood if he wanted to end our relationship before it got more serious. As he kissed and wiped my tears away, he said that he could live that, after all his dad and aunt were adopted.

I believed him.

Unfortunately, throughout the three years we were together he would ever so often mention the topic. He would say that he did not care if our child had NF or that he did not care if I got more fibromas. And no matter how many times I would explain to him that I was not changing my mind and how his comments hurt, he would still bring it up.

So, when the possibility of me being pregnant presented itself, I was faced with the possibility of making another tough decision. Ultimately, I decided that if it turned out that I was pregnant that I would go through with the pregnancy.

Yes, I want to be a mom. No, I do not plan on getting pregnant, but if it happens, it happens; and now, I am okay with that.