Tuesday, March 16, 2010

REACTIONS TO THE BLOG (17 weeks old)

“Alone we are rare. Together we are strong" was the slogan for Rare Disease Day 2010 and this blog just proves it right. About a month and a half ago when I started to write, I never imaged that the Juvenile Xanthogranuloma Online Support blog would achieve all its initial goals in such short period of time but it has!. I am thrilled to report that through the blog, we have been able to create a JXG Roster that, as of today, has twenty members from all over the country, Canada, Belgium, England, Malaysia and Australia. All its parents (and I use the word “parents” because we have a dad) are available to give each other support via phone, email or facebook. While some folks feel more comfortable talking with someone with the same diagnoses (we have cases of Skin JXG, Systemic JXG and Ocular JXG), others rather connecting with members that live in the same state or whose children are the same age. In my case, I have found that communicating with all of them at once is the best resource of information imaginable. Thanks to the info gathered within the group, I was able to advocate for Santi to have blood-work done and ask more informed questions to our doctors. But besides this sharing of notes, the encouragement, validation and understanding offered by the other parents have been invaluable in restoring my sense of balance and sanity. Special mention deserves all the emails that I have received. Each of them has moved me immensely and given me more strength to keep going with this project. Some of the parents who wrote were, same as me, pretty new at dealing with JXG. They had my same questions regarding differences in protocol, statistics and I could feel the worry and anxiety in their words. Almost all the emails talked about the obstacles that the families needed to overcome just to get the right diagnoses: long trips to medical facilities, months of jumping from doctor to doctor, and several trials of unsuccessful treatments were the common denominators. A few of the readers opened up and told me that they saw their own reflections in my breakdowns, relationship struggles and parental feelings that we are not supposed to have. Finally, the messages from parents whose kid’s lesions are healed or almost healed, were very uplifting and full of hope. Some of these readers sent me pictures of their children’s lesions prior JXG and after JXG and they always mentioned how they could relate to parts of the story. Another wonderful surprise has been the support offered by non-JXG-related people, some of which, I have never met. One of my 3er cousins, that I have not seen in at least fifteen years, decided to translate my texts to Spanish. He said he wanted to support the blog and help Spanish speaking JXG parents not to feel alone. A friend of a friend, who assesses websites for a living, provided me with a complete evaluation on how to improve the blog and gave me many excellent ideas to reach more people (hopefully, we will be able to implement some of her suggestions in the near future). But, since this is the real world and not Disneyland, there is the other side of the story too. After writing the texts: “Asking for Help”, “Looking Inside” and “Not always on the same page”, I have received some pretty harsh criticism. One reader told me that “I was putting myself in a victim role and that I was expecting people to pat my back but she would not do that”. A few others wrote saying that “I was exaggerating and seeing things out of proportions and I needed to remember that JXG was benign and temporary”. Other follower indicated that “I should reevaluate my priorities because it was clear to him that I was putting the disease before my son and husband”. And someone suggested that “instead of spending time writing this blog, I should play with Santiago or return to work”. As you can imagine all these comments were painful to read and as a consequence I stop writing for several days. I felt too exposed and hurt and I needed some time to rethink about my commitment to truth. After this time to cool off I was able to see that: 1) None of these opinions came from people that dealt with JXG, actually all of them started with something among the lines of: “I never experienced JXG and I can’t imagine what you are dealing with, but…”. 2) People who wrote them did not mean harm. They just lived my distress so vividly that they were too upset to comprehend the point of the blog. So, here is my conclusion: I accept that not everybody is going to understand what I am trying to do, that not every reader is going to like each of my columns and that from time to time I will receive negative emails, yet I will not reply to them anymore. The purpose statement of the Blog clearly says: “Take whatever is useful to particular situation and leave the rest!” and the option of not reading the blog is always available. At the end of the day, I am not willing to turn down the intensity of my writing or my desire of being frank to avoid upsetting people or getting unkind criticism. The rewards completely outweigh the risks!


  1. Maria, I really enjoy reading your blog..and am saddened by reading the negative things you wrote about people saying. We too have experienced the nay sayers.."if it's a benign disease" then just forget about it"..easy to say...hard to do. Please keep up the awesome work you are doing..my Abby loves reading this and seeing Santi...Just knowing that there are people out there w/ the same concerns for their children feels wonderful..and for what it's worth..I think you are a wonderful mother..

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  2. The blog is a great success. The negative emails are a waste of everyone's time. They are only about the people who wrote them and the problems they have. These people are called complainers and they are irrelevant. The blog connects people around the world with the same JXG problems and is working marvelously.

  3. my humble opinion is this: if you care for the people that wrote something you don't like just try to find what was the motive and from there decide what to do... sort of giving the people another chance and you'll feel much better if it was just a misunderstanding. Besos
    Are u ready for an outdoor ASADO???

  4. Hi Maria,
    Ignorance is a terrible thing. Just because something is benign doesn't mean that it's isn't a problem, potentially harmful, causing lots of stress and worry and you have a right to grieve. No parent likes to see their child suffer anything. I've seen other parents fall apart over their child having a cold. The same parents who tell me "But it's only benign isn't it" or Ït's only one eye, she has another one". Jade almost lost her eye due to a benign lesion and was in incredible amounts of pain for many months. I have had 5 surgeries, suffered through many years of pain and had my gallbladder removed and a failing liver because of benign tumours. And I have suffered the same ignorant comments "Oh but it's only benign". Thank you for creating a place where the people who can understand and relate to our journey can discuss and where others who do not deal with JXG but are open minded can learn.

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