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.

11 comments:

  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

    ReplyDelete
    Replies
    1. i have been in relationship with my boyfriend for 2 year now and we were planning to get married soon and all of a sudden he left me for another girl, i really love this guy and never can imagine my life without him. I further tried all my best to get him back but all my effort to get him back in my life did not work out. It was on this faithful day, i came across some comments on a website about this great spell caster called Dr Azuka, so many persons claimed that he help them to renew their relationship and bring their ex back, i had to contact him because he was my last hope. I contacted him through his email and he assured me that in two days time my boyfriend is going to leave the other girl and come back to me and it was a very great surprise to see my boyfriend coming back to me after two days. I am so very happy today that he came back to me and i achieved this with the help of Dr Azuka, and i advice if you need his help too, you can email him on his direct Dr.azukasolutionhome@gmail.com or contact him on whats App him +2348132777335



      Delete
    2. I am Mrs. Dora Pless from USA, i want to share a testimony of my life to every one. i was married to my husband, and i love him so much we have been married for 4 years now with three kids. when he went for a vacation to Singapore he meant a lady called STEPHANIE, he told me that he is no longer interested in the marriage any more. i was so confuse and seeking for help, i don't know what to do until I met my friend miss joy and told her about my problem. she told me not to worry about it that she had a similar problem before and introduce me to a man called Dr. Ugo Wonders who is man of God for her ex and bring him back to her after 2days. Miss joy ask me to contact Dr. Ugo Wonders I contacted him to help me bring back my husband and he ask me not to worry about it that the God of his fore-fathers will fight for me. He told me by two days he will re-unite me and my husband together. After two day my husband called and told me he is coming back to sought out things with me, I was surprise when I saw him and he started crying for forgiveness. Right now I am the happiest woman on earth for what this great MAN OF God did for me and my husband, you can contact Dr. Ugo Wonders on any problem in this world, he is very nice, here is his EMAIL contact: generalspelltemple@gmail.com or call him on  +1 386-336-9876

      Delete

  2. Getting back with your ex lover,urgently with love spell prophetoyinbojesus@gmail.com is really the best spell caster with 100% guarantee..my names is Kimberly Johnson ,AM from United states .i never believed in love spells or magic until i met this spell caster once when i went to Africa in June last year on a business summit i meet a man called prophet oyinbo, is powerful he could help you cast a spells to bring back my love s gone misbehaving lover looking for some one to love you bring back lost money and magic money spell or spell for a good job i m now happy & a living testimony cos the man i had wanted to marry left me 3weeks before our wedding and my life was upside down cos our relationship has been on for 4 year i really loved him, but his mother was against me and he had no good paying job so when i met this spell caster, i told him what happened and explained the situation of things to him at first i was undecided,skeptical and doubtful, but i just gave it a try and in 5 days when i returned to taxes my boyfriend (is now my husband ) he called me by himself and came to me apologizing that everything had been settled with his mom and family and he got a new job interview so we should get married i didn’t believe it cos the spell caster only asked for my name and my boyfriends name and all i wanted him to do well we are happily married now and we are expecting our little kid and my husband also got a new job and our lives became much better in case anyone needs the spell caster for some help his email address: prophetoyinbojesus@gmail.com or you can call him at +2348074066640

    ReplyDelete
  3. I am Mrs. Dora Pless from USA, i want to share a testimony of my life to every one. i was married to my husband, and i love him so much we have been married for 4 years now with three kids. when he went for a vacation to Singapore he meant a lady called STEPHANIE, he told me that he is no longer interested in the marriage any more. i was so confuse and seeking for help, i don't know what to do until I met my friend miss joy and told her about my problem. she told me not to worry about it that she had a similar problem before and introduce me to a man called Dr. Ugo Wonders who is man of God for her ex and bring him back to her after 2days. Miss joy ask me to contact Dr. Ugo Wonders I contacted him to help me bring back my husband and he ask me not to worry about it that the God of his fore-fathers will fight for me. He told me by two days he will re-unite me and my husband together. After two day my husband called and told me he is coming back to sought out things with me, I was surprise when I saw him and he started crying for forgiveness. Right now I am the happiest woman on earth for what this great MAN OF God did for me and my husband, you can contact Dr. Ugo Wonders on any problem in this world, he is very nice, here is his EMAIL contact: generalspelltemple@gmail.com or call him on  +1 386-336-9876

    ReplyDelete