Thursday, February 25, 2010

NOT ALWAYS ON THE SAME PAGE (15 weeks old)


So what happened when I googled Juvenile Xanthogranuloma Support? A bunch of websites with information on JXG came up but nothing about support. Then I tried, Juvenile Xanthogranuloma Group, the same. I typed Juvenile Xanthogranuloma Blog and I finally found a place where a mom was telling about her daily dealings with the condition (see “My Two Happy Home Schoolers blog” under the "About JXG" section). There were many notes from parents like me that turned to cyberspace for answers and they wanted to connect with each other. I spent the following 3 nights “hunting” blogs and discussion forums and I posted my comments in ALL OF THEM. I anxiously waited a couple of days but nothing happened. After a few more nights of short sleep, I decided that I was going to form the first “JXG Online Support Group”. I was so excited about my idea that the minute my husband got up, I told him about it. “Good luck with that. You are going to be the only one out there” he said. I told him for the 40th time about the online notes I read. He proceeded to point out again, that Santiago’s condition was not life-threatening therefore people would not find a need for a support group. I was furious and as a result we had one more of our JXG related fights. In the early days of Santi’s diagnoses, one experienced friend told me: “you need to be really careful how you handle this. It can cost you your marriage if you do not”. What an exaggeration and what a bad timing to tell me this, I thought. Three months from that day, I can tell you that JXG has brought a lot more moments of tension than I initially anticipated. For some weird reason, it seemed that our timing was always off. Example: despite his initial lack of enthusiasm about my idea, nowadays, my husband is the technical support of the blog (I am not a computer person at all). The same thing happened when I wanted a second opinion about Santiago’s condition. He did not think it was that necessary and at the end, he was the one that contacted the doctors and made the arrangements. Our reactions about JXG were always different too. There were moments that made me very sad or upset and he remained positive instead. When I was anxious thinking of internals bumps, he would say: “Skin JXG is just an annoying disease. It doesn't do anything but it takes forever to go way”. I used to count Santi’s spots and while I would freak out every time I there was a new one, his reaction was: “They’ll go away baby, do not worry”. It drove me crazy, didn’t we have the same kid with the same condition? It was not until I saw him touching Santiago’s head in circles with his whole palm extended that I figured it out. That was his way of counting them and feeling if they grew! Recently, and only after I was doing better for a couple of weeks, he finally said “I wish JXG would go away. I hate it”. I was so upset and fragile before that I did not leave any room for him to let his guard down. It would have not served Santiago that both of us were crying, mad or sad at the same time. Most men are wired to be “fixers”, they feel good when they can solve something. Women, on the other hand, usually feel better just by expressing our emotions. The talking does the healing for most of us. Dr. Gray titled his book:“Men are from Mars, Women are from Venus” and even though I believe that both genders have more things in common than not, processing JXG was not one of those for us. And it was not a bad thing!

*To my adored husband, who always supports my dreams and keeps loving me even when I don’t.

8 comments:

  1. Hi Maria,

    I posted on the Facebook group, and I'm actively reading your blog now, too. After you posted about trying 'Juvenile Xanthogranuloma Support', I did it too - and found that I was following you around.

    I, too, stumbled upon 'My Two Happy Home Schoolers' blog, and I've had a conversation or two with her, as well.

    You're not alone out here.

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  2. Thanks David for taking the time to read the blog! It is very comforting to me knowing that other parents are reading it and the went t/h the same :P

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  3. Hi,

    Ariane, WIlliam's mom, from New Brunswick Canada. WIlliam is 9 months old, JXG since 4 months old, skin only so far....no indication of otherwise: should we go with MRI or anything else? The docs don't seems to think it is necessary. Also: we had a second opinion already from a larger center. We stayed there for a week and they did tests ( blood work and all ) on Willy.

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  4. Ariane, I replied to your email address. Thanks for taking the time to read the blog. Let's stay in touch. Best of luck to you and William!

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