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?.


  1. the more you hang with other kids the more comfortable you'll get and will get quick at answering the questions ... kids have no fear to ask and no prejudice against others.. they are just curious.. and they are SO FUN!!! KEEP GOING!! :D Besos

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