Monday, September 10, 2018

What's Up with the Hair?

 I miss my long brown hair. I can't wait to have it down to my waist again. The concept of short hair is foreign to me, and the only reason I have short hair right now is purely medical. I would never in a million years have a pixie cut by choice. But my body decided that it was going to misbehave and thus resulted not one but two unplanned surgeries.

I like my long hair not only because I have gorgeous hair, yes that is a conceited statement, but more importantly, because it has been my security blanket for 31 years. And now I am completely exposed to the world, and I do not like it. I used to be able to cover the right side of my face and not be seen, and now, I have nothing! I am forced to go out into the world without my protective shield.
Ironically, everyone and I mean everyone loves my short hair! This I do not understand! Nor do I want to because the pixie is not staying.
Yes, I feel more comfortable and confident than ever before, but that does not change that fact that I feel the most secure when I have long hair. That will never change.
So thank you all for the compliments. I  appreciate it and trust me, your kind words do help, but you will not change my mind.

Saturday, September 8, 2018


Not too long ago I told someone that I was still getting used to my new face, he looked at me and said,” your face looks the same.” I looked back at him and just stared. I didn’t understand how he did not see that I had a new face, I  got irritated at him because he was unable to see how different I looked. I was annoyed that he failed to see how my surgeries had improved my face. How is he unable to see the same reflect that I see each time I look in the mirror? A more symmetrical and beautiful face. A face that I like a lot more.

I then heard that tiny voice in my head say, “ To him, your face has always been beautiful.”
He shared that he really wished I was able to see just how remarkable I am. He held my hands looked into my eyes and  said," You are beautiful, intelligent and the strongest person I know."  I looked away into the distance, he pulled my face towards his and repeated it. 

In the eyes of many, my face has not changed, or if it has, it is minor. However, for me, it is day and night.  I no longer have the large fibroma on my right temple, nor do I have the protruding plate on the side of my head. My eyes also appear to be more leveled than before.  I now find myself enjoying makeup a lot more because I do not have to hide scars or a fibroma.

I know that to many of my friends and family the changes in my face are minimal, but to me they are significant. Between August of 2017 and March of 2018, I had four surgeries that in my opinion vastly improved the appearance of my face. I feel like my disfigurement has been reduced; to me, I have a new face. And like my friend Izzy said to me not long ago, I live with this face so I will notice the changes more than anyone else.

Even though I have a scar running down my forehead, like Harry Potter as an acquaintance has described it; I have never felt more confident with my face than I do now.

Saturday, July 14, 2018

Motherhood Part 2

 As  I was recovering from major surgery in January, I received the most fantastic news ever, not once, but twice was I told that I would become an aunt! Both my sister-in-law and friend gave me that happy news that they were pregnant. I cannot begin to express the excitement I feel towards this new title I am earning! I have sheer joy and cannot wait to hold my niece and nephew (of course not at the same time). I am going to enjoy every second of being an aunt because I know I am going to rock it!
After I digested the fact that I would become an aunt to two babies this year, I asked myself, if becoming an aunt would or could replace my yearning for motherhood. I have yet to find the answer, and I do not know if I ever will.

In Motherhood Part 1, I shared an experience I had in a previous relationship where the possibility of becoming a mother was very likely. How different would my life be right now if that pregnancy test would have been positive?  Would I still be in the same relationship? Would I have been promoted to supervisor of Gateway Services? Most importantly, would I have had four surgeries in seven months?   I really do not want to consider having an alternative life to the one I am currently living. I still believe that it was a real blessing that it was only a scare because I was not prepared for motherhood at that time and honestly, I am not ready now either.

I do not know how different things would have been, so all I can imagine is living this same life, having had the same experiences but only with a toddler. If that were the case, then, I would be a single mother with an incredible support system because I would not have been able to go through surgery alone while raising a child. But all this is just hypothetical of course.
Motherhood is in my future, but for now, I am going to enjoy aunthood to the fullest!!

" Do you even belong?"

I was born in Barranquilla, Colombia, a city on the northern coast of the country; the same city that Shakira and Sofia Vergara call home. My family and I immigrated to this county when I was six years old, I became a citizen at the age of sixteen; but to some, that does not matter because to them I will always be an immigrant and they will always question my legal status. 

Imagine being a kid and having a classmate say to you, " How did you get here? did you swim over?"  Or, how about being told to go back where you came from because you do not belong, this had happened to me and not just once or as a kid. As an adult, it has happened.

I am one of the blessed immigrants in this country that has had it "easy" because my parents were able to do things "right."  I have never lived with the fear of being deported for not having a piece of paper that gives me the false protection of being here. I never had to question myself after graduating high school about life, because I knew I could go to college if I wanted to. However, I knew many classmates in high school that lived with that fear. I had a handful of friends that questioned themselves because they did not know what they would do after graduating. 

Being an immigrant in this country is not easy, it will never be easy. But currently, it is not just not easy but also dangerous. I turn on the news, and all I hear is the continuous hate speech and not only towards immigrants but all minority groups. It has to stop. No one person is better than the next. No human has more rights than another.

Sunday, May 13, 2018


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.

Sunday, April 29, 2018

Flashing Yellow

I've come to a moment in my life in which I have realized that I need to stop proving myself to others and just live my life freely. This has been a tough lesson to learn because by focusing on proving myself to others I have in actuality been failing myself. 

This, I realized very recently, As I began shutting down and creeping into a depressive phase.  I was scared of being depressed once more and of not having the strength to pull myself out of it. It took me a very long time to dig my way out that when I did, I promised myself I would not be in that hole again.

When I spoke to my therapist about my current mental and emotional state he told me that I was, in fact, exhibiting the warning signs.  The way he worded it was that I was flashing yellow and that I was able to turn it around to prevent the light to change to red.

I don't want my yellow to turn red. And so, I need to focus on me and not on others, which always seems to be the most challenging thing for me to do. 
For someone that dislikes being in the spotlight, I genuinely do a  disservice to myself by needing to prove to others that I am capable of everything. I know I can do anything and everything I set my mind too I just need to do it for me and not for them.