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!

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.

Tuesday, March 9, 2010

REACHING OUT (16 week old)

“God grant me the serenity to accept the things I cannot change. Courage to change the things I can, and wisdom to know the difference”. During the first three months of Santi’s JXG diagnosis, I used to repeat this countless times throughout the day. The first part was crystal clear to me, I felt powerless about pretty much the whole condition. But the second part, what were the things that I was supposed to change? We had already done our deep research about JXG, gotten two second opinions and Santiago had a protocol that the three doctors agreed on. Yet, I did not feel at peace. I knew there was something more to the second part of the prayer. Following the Latin advise "mens sana in corpore sano" (healthy mind in healthy body), I decided to join a gym. If I could not make my mind think clearly at least my body would work properly. When I went to visit the “fitness” facility, I took special interest in their child care center. It would be the first time I was going to leave my 3 month old baby with someone else and as a first time mom, I was a little paranoid about it. To my surprise, I loved the child care center and the entire gym. I was impressed with the size of the club and the country club level of service. When I had no more questions to ask and ran out of excuses not to commit, I told the “fitness advisor” about Santi’s condition. I did not explain to him what JXG was but I told him that my baby had a skin condition that it was not contagious but expresses with little bumps in his body. I was honest and shared my concern of other moms inquiring about him and I offered to provide a letter from our dermatologist. Unfortunately, I know the case of a mom whose baby has very visible JXG lesions (like Santi’s) and that was denied service at a children’s hairdressing salon after a customer complained to management (the client thought that the baby had chicken pox). To my delight, the gym representative assured me that it would be no problem and if someone complained, he or his boss would personally take care of the matter. The following Monday, I showed up with Santi for our first “work-out”. There were four other babies and tons of toddlers and older kids running around. I left Santi with his hat on and sleeping in his car seat, in the most perfect scenario. When I came back, he was being held by one of the baby sitter as she was walking around the center supervising other kids. No hat, no tears and with a tranquility that you would think this baby lived in a house with ten other siblings. It has been two months since then, and I am happy to report that there has been no incident (or at least nothing has been said to me). Santiago loves the child care and all the caregivers fight over taking care of him. He has a little “girlfriend” whom he giggles with constantly and when they talk, it looks like a Johnson & Johnson commercial. Besides the benefits of getting back in shape, the gym has given me confidence to interact with the real world again and has provided me with opportunities to prepare answers about JXG in a very relax atmosphere. Example: I was feeding Santi his bottle when a beautiful 3 year old girl asked me: “is your baby sick?”. Before I could reply, her mom jerked her back and told her that it was not polite to ask those questions and took her home. I was not mad or offended, I just did not know what to respond to someone this little. I started to think what type of responses I could have given to this little girl. I talked to one of my best girlfriends and together came up with a toddler/ preschooler answer. Sure enough, less than 2 weeks later another opportunity came along. This time I was bottle-feeding Santi at the entrance of the gym when this cute 4 year old boy came up to me, while his mom was checking in, and said: “is that baby real?” and I said: “yes, he is eating”. And then he asked “what does he have on his face?” so I told him: “he has big freckles that will go away when he is older”. “Ahhh…” he said, and continued asking other things about Santi. The scene has repeated itself 4 times (the last one was yesterday) and each time I feel more comfortable when it happens. I know it is not a true answer and that it does not fly with all ages but for older kids and adults I have another “easy answer”. For them, I say that he has “Allergies”. Once again, not true but: 1) people know that it is not contagious, 2) that it goes away and 3) I can get going with whatever I was doing in less than a minute. It is not that I am ashamed of Santi’s condition as I once was, but I do not always have the time or the patience to give the mini JXG explanation, specially to people that I do not know. I know the way I handle people’s questions about JXG will have a huge impact on how Santi will feel about himself. Therefore, if I make a big deal out of them every time somebody asks, he will feel like it is a big deal. My husband and I have thought of many ideas how to make Santiago feel comfortable with his condition. I wondered what the other JXG parents were doing. What worked for them, what did not. Again, I yearned to have a JXG Support Group, but where could I find the members for it?.