Tuesday, February 16, 2010

A VERY SAD NEW YEAR’S EVE (12 week old)

As the last couple of years, we decided to spend our 2009 holidays at my parents-in-law’s home in Maryland. I love going there because we receive tons of love and we are always so pampered that it feels like being at the best resort in the world. Unfortunately, about a week after we arrived, Santiago experienced his strongest episode of JXG and the number of lesions almost tripled in a matter of days. I knew that he could develop more spots, our dermatologist warned us about it, but I never thought he could have so many. I started to feel very concerned about his future. I was afraid of other kids making fun of him at the playground, moms not allowing his children to play with him afraid that he could be contagious and more than anything, I was afraid that people would see his spots instead of seeing him. My mom-in-law, who has a child development degree, also shared my fears and we spent a lot of time thinking of how to prevent the inevitable. Those days, I used to start almost all my sentences by “I am concerned…” and as my husband said it best: “the only thing worse than you worrying about Santiago all the time, is you and my mom, together, worrying about him all the time”. Santi was also having a pretty hard time with his acid reflux and was vomiting nearly every night. Besides, every time he pooped, he looked as he were in a lot of pain and even cried at times. I knew it was not unusual for babies to puke daily when they were this little and that most of them had very painful faces while they are working on a poop. But I could not help to wonder if it was the JXG that was developing internally what was making Santiago this uncomfortable. I started to search the Internet again and I drove my husband crazy until he helped me accessing medical papers from Google Scholar about JXG. I was done with the “yara, yara websites”. I wanted the real thing. Well, if you ever try reading medical journals without being a doctor, you will find it nearly an impossible mission!!! Every two sentences you need to look up something in the dictionary that it is usually defined with another word that you also have to look up. On top of that, add the fact that English is my second language, and there you have the perfect recipe for a frustrated and “over-the-edge” mom. New Year’s came and since my birthday is on January first, my mom-in-law cooked a delicious meal in my honor and invited some of my best friends along with other close family members. I had such great time that after supper, when the time to go a “New Year Party” came, I completely forgot to put Santi’s hat on and boy, did I pay the price! Upon our arrival, we were introduced to a bunch of people, including the host’s very healthy, five month old grandson. It was now our turn to present Santiago and even though nobody said anything, I saw how people were staring at his bumps. I was trying to keep it together when the host came to me and while covering her mouth with her hand said “Oh my God, what happened to this baby’s head” with a face of horror. I tried to minimize it and I told her that he had a skin condition that was benign and it would go away. She left without saying anything else, but the damage was done, I could not restrain my tears. As I was telling my husband that I wanted to leave immediately, the host’s son and dad to the healthy baby, came up to us and asked about Santi’s spots. I let my husband answer because I knew that if I opened my mouth I would start crying right there in front of everybody. After he finished the short version of what Skin JXG was, the guy said “…good to know that it will go away. I have friends that have a kid with cancer…” and he went on and on comparing our situation to his friend’s without realizing it. Needless to say, I was in bed by 11 pm crying and with no energy to make myself stop. The following morning I woke up feeling the same and I stayed in bed most of the day. Luckily for me, I got the worst cold that I had in years, so I had an excuse not to get out of my room. I was officially falling into a depression and I did not care.


  1. Wow, don't know how I missed this post, Maria, but you just described everything we have felt along this journey. In our case, though, we had to worry about middle schoolers being cruel to our daughter and strangers who can't help but stare at her (and still do). What you said about the medical journals I sooooo get! I drove myself crazy reading worst case scenarios and since Emma's case was considered so "out of the norm" of the rare, the docs were not sure what would happen with her next. I was (and sometimes still am) worried that the jxg would invade her eyes or internal organs. This has easily been the most stressful two and a half years of our lives. As of now, we are seeing some signs that encourage us to think she is responding to the Thalidomide. It is just going to be slow healing. Thinking of you and all the other histio families on this journey. Jessica

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