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Thursday, January 14, 2010

Hati has real problems and my heart goes out to them

I feel like a whiner when the people in Hati are without warmth, heat, or any comforts, when there hospitals can't even help them and they are heard singing and praying among each other in the midst of terror and horror. I need to feel some of that spirit and be able to be thankful.

  Why am I feeling like this?
Aiden had his regular check up with is neurologist  today. I felt confident that it would be fairly painless and quick for both of us. I was wrong. Aiden has had many many nose bleeds lately and I have been told by many doctors that it's the dry heat in my home, yes, we use a air humidifier, but they are still happenning, still told this is normal, and it is.  My son has had some pain  near his left eye and up his nose to his forehead. I felt it recently and felt a lump. Today it was confirmed this lump is a neurofibroma. The neurologist told me that I need to call a plastic surgeon after the MRI is done.  I was not ready to hear about surgery. Call me a fool, or naive, but I expected surgery in his teens, YES, I am well aware that neurofibromatosis is a life long disorder. I guess I felt his life with it had not really started? I have never told Aiden he has NF1 he is only 4. We talk about his spots, and his pain and his focus (from adhd) but not the actual name.  He has asked me if the spots will ever go away and I say no, they are who you are. 
  I know it's not nice to say, and I wouldnt' give up Aiden for anything but sometimes I wish we could start him again and have him not have it, that is silly I know and every child has things or they get things, broken bones arms, or worse cancer. I left the office so upsett, and had to keep it together until I was alone to blog and go to the bathroom. I cant' call my family they are so positive and say hey at least he doesnt' have cancer, or things like ok so after the MRI you plan the plastic surgeon just get the best one. I think the best one.... is that necessary because will he get another facial tumor in his life, chances are yes, and then more surgery and he is so handsome and as vain as it sounds I love that about him, his handsome face, green eyes and his skin coloring. I wish the tumors were some where else, but they are not. Facial things are hard because the world treats you poorly if you look different or scary. We the world judge a book by it's cover.  I want him to have friends and not be disfigured, I want him to have NF1 and still look like him.  I know it's selfish and insensitive and he will always be him to me, but my heart bleeds and my tears flow for the start of plastic surgery. I know some new friends I have met blogging and they have children who have tumors and get chemo and that is just as heart wrenching, but I love my handsome son's face and wanted it to stay the same forever.  I guess this is just the beginning of our life with NF1.  I Feel so alone in this new battle. 
  I will keep you all posted on his MRI findings .
He is also having a echo and a EKG for hearing a possible heart murmor.  We went to talk to the doctor about possible medicine for ADHD as he was asked to stop dance and violin for his lack of focus and attention, but after the news I decided that is the least of our problems.
2010, are you going to be a good year? right now it does not feel like it.

1 comment:

SANDRA said...

I know how you feel. My oldest son had plastic surgery at age 2 for a different reason. It was his second skull surgery to repair a skull suture for craniosyotosis (premature closing of the skull).

Before surgery his forehead and face was noticable and he got treated differently because his disabilities were visible. My heart ached because other children in our playgroup did not play with him. I felt the world was not fair in treating others like my son.

My son has won the heart of others because of who he is and not what he is. He still has disibilities and some are evident when you met him but he has a strong personality and preserverance in him that I admire.

I can understand your concerns and I pray that everything works out for you and your family.
God Bless..

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