Friday, March 12, 2010

THE BLOG (16 weeks old)


I started to write this blog the first Sunday of February, 2010. I remember it well because it was Super bowl Sunday and I could not focus on the game at all (not that I am a crazy American football fan either). I went to the office and sat down at the computer for a while, I really did not know where to start or how. I just wanted to connect with other JXG parents wherever they were: "a very simple goal". The only thing that made sense to me was to write about our story, and I made a conscious choice of telling the good, the bad and the ugly. I am a firm believer that for anything to be good, it has to be truthful even if that means making myself vulnerable or upsetting other people. I wanted this blog to be very good (not just good) and make it a safe place where people could share the feelings that they do not show anywhere else. This was part of the beauty of using the internet. Writing has always helped me processing difficult moments of my life and this time has been no exception. But besides, creating a “stress releaser” for me, I wanted to validate other parent’s journeys with JXG. After I wrote my first text, I went to Google to find my blog and I learned, to my big disappointment, that the Internet is not magic and my page was not showing. I ran to my husband to tell him what happened and he said that it would take about a month for my page to show up, he said that Google needed to “index” my page. “What do you mean?” I said, “Google gotta be faster than that. Plus, I do not want to wait a month to connect with JXG parents”. I left the room thinking that my “tech support guy” did not know what he was talking about and I emailed my Internet savvy friends (who do this for a living) just to find out the same answer. They told me about “mega tags”, “crawlers” and websites that would help my blog to show up faster in the net. Someone also suggested to email my friends and family and ask them to visit the site often. What a pain! I thought. I hate dealing with computer stuff (I am terrible at it) and I am not sure if I want to share my inner feelings with people that know me so much. But well, if that was what was needed, I would do it. So I did the best I could with the mega tags, I posted notes about my blog in all the Spanish and English speaking histiocytic associations that I could think of, also left comments in all blogs, forums and facebook related sites and I emailed my friends and family. A few days went by and nothing, I checked the computer every couple of hours and it was always the same: no comment, no reader. I kept writing to fulfill my venting purpose and one day when I opened the blog, surprise, I had a reader, yeah! I clicked and found out that it was my sweet husband. I Kept writing and sometimes was hard to relive some situations but I wanted to tell the events in chronological order and stick to my goal of honesty. More days went by and more readers show up, always friends and family members that were giving me their support. I started to lose my confidence and told my husband that no one besides him, some friends and family were reading the blog. He assured me that was not the case and to prove his point he installed a visitor counter. To my surprise, he was right, I do not have such big family and I have not that many friends either. So someone else was reading the blog but who? Were they JXG parents?. A few days later, I opened the blog and a “Michael Golding” showed up as a reader. I did not know him, which meant that he was a "real" reader!. It took me forever to figure out that he was the same Michael Golding of the “Sydney Salem Golding Fund” that had inspired me so much. Mike gave me the names of all the JXG families associated with his organization (Histio Heroes Research Fund), and since that moment he has been a great asset to the blog and a wonderful role model. With this information, I looked everybody up in Facebook and emailed each of them. I finally connected with my target audience!

*My most sincere thanks to Michael Golding and the Histiocytosis Association of America that have helped me to connect with other JXG parents and have provided Histio families with much needed leadership to find a cure.

5 comments:

  1. Amiga, Santi esta divino!!! sonrisita Harrison Ford!! Carinios mil y fuerza segui adelante!!

    ReplyDelete
  2. Maria, I am sitting here on a Sunday morning reading your blog w/ my 10 yr old daughter that was diagnosed w/ JXG many yrs ago. You are a wonderful writer and my daughter & I are in love w/ Santi, as my daughter said when she saw him...."he is sooooo cute"!! It is very frustrating when you take your child to a doctor and you have to explain what JXG is...we had no idea what it was and were living abroad at the time of her diagnosis...we asked a friend in the states to research it for us...as you can imagine not everything she sent to us pertained to her JXG diagnosis, but scared the hell out of us her parents. I remember holding her on my lap on an airplane ...and spots were forming right in front of me. We have been told since "not to worry"...but we are her parents and we do worry. She is a very happy healthy, active little girl with no spots!! As a matter of fact she just had 8 inches of her beautiful golden brown curls cut off( her choice) and while her very short hair was wet...my first instinct was to look at her scalp for any spots...nada! Anyway, sorry for ranting, but it is all to let you know even though the doctors were a bit blase about it..and assured us they would go away...the spots did indeed go away..and she continues to remain free of them. Keep up the blog..we look forward to seeing more of Santi...give him lots of kisses from Nan & Abby<3

    ReplyDelete
  3. Good Morning Nan & Abby! Santi, my husband and I were jumping of joy while reading your comment. Thanks so much for you kind words and your encouragement. It is always so comforting to hear from parents that walked this road before. If this is something that you'd be interested in, I would like to invite you to join our JXG Group (we are currently 13 parents from the US and Australia) and we are available to give each other support on an as needed basis. Once again, thanks for reading the blog! Maria

    ReplyDelete
  4. Maria, I would love that...I have to admit I not the most computer savy person, but I have a teenage that can always help me. I want to post a picture of Abby as a little girl...where we also show her JXG spot...I will try to get that on for you...

    ReplyDelete