Sunday, February 14, 2010

SHARING THE NEWS (11 week old)

My husband and I though very deeply about how to share Santiago’s condition. Who to tell? How much info to give? At the end, we decided to send a email only to our closest friends and family members, explaining what skin JXG was (we added some links) and describing the medical procedures that Santi went through (i.e. biopsy) and what was next for him (i.e. eye exam). We believed that as he only had a few lesions (5 on his head and 3 on his face), we would put a hat on him and say that the spots in his face were moles. If you are reading this blog, you probably realized that this first plan did not work out for us. The main reasons: People’s reactions, our reaction to people reactions, and the new lesions that Santiago kept developing (as of today, he has over 50). Here are the three types of responses that we encountered: 1) Those that seemed not to have read the part where we said that Santiago had a confirmed diagnoses via biopsy and offered other possible “explanations and course of treatments” . 2) Those that read the email and called right away to offer their support and asked how they could help, and 3) Those that thought that everything was already taken care of and there was no need to contact us. Well, for any significant other reading this blog, “option 2” is the way to go. Number 1 and 3 were painful and even offensive at times. I had people telling me that maybe “my milk” was the reason of Santi’s spots and I should stop breastfeeding him for a while. Others who told me that he could be allergic to our dog, so we should send the dog away for a couple of days. Some others suggested that the spots were a family condition that could be treated with papaya milk, and we also had those who did their own research and came up with other possible diagnoses, treatments and potential problems. Do not get me wrong, I completely understand that all these opinions came only from the most sincere concern that people that love us and love Santiago had. But ultimately, they were not good for us! I was so fragile that I actually thought thoroughly about each of these opinions, forgetting that I already had a biopsy and doubting the knowledge of our doctors. It was also exhausting to be educating people about Santi’s condition over and over. To my surprise, many loved ones seemed not to have read the links we sent about JXG and we had to respond the same questions many times. Lastly, in a few occasions, I ended up comforting others who felt so distressed by Santi’s appearance and possible consequences that did not realize I was the last person to share their concerns with. On the other side of the fence, people on group number 3, made me feel extremely lonely. I tried to make excuses for them. I thought: “Well, the holidays are just around the corner and people are all over the place”. “They live so far away and they never met Santiago. They do not get it”. “It could also be our fault. We did not clarify in our email what we needed from them, maybe our tone was to calm”. Now that many weeks have passed and I am in a better place, I see that every interaction, positive or negative, had a magnified effect on me. So here is what helped. The loved ones who called every couple of days or after Santi’s appointments just to check on us and also talk about others things besides his condition. People that told us that Santi was on their prayers and thoughts, and offered their support in any way, shape or form we needed. And those that let us know that were educating themselves about JXG. Writing about these days is not easy for me. My intention is not to place blame on anybody or make anybody feel bad. I only hope that one day my words will help a parent or loved one that just received the news about JXG and is wondering what to do. That day, all this work will be worthy!

* My warmest thanks to the Nuñez Campero Family, specially Pia, Fita and Juan Manuel, who have been accompanying us since the very beginning.

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