Monday, May 28, 2007
Comments
I look forward to comments from blog readers. Are you stopping by? Do you read often? What blogs do you enjoy? Please stop by and say hi anytime.
House of Activity
We are a house full of joy, tantrums, upsets, and love. We pray and learn about God. We share joys and sorrows. We talk about life. We worry about pasts. Mom thinks and worrys about the future. Luckily, my girl is sheltered from the worry of her future. She knows of her "sickness", what a five year old can understand. She doesn't understand the social and physical ramifications of what this means. I shelter the load of those thoughts. They plague me - but only at times.
Times like now when the team set up to support us through our educational program in our school district looks ahead to next year. We discuss yet again, for the second time since beginning kindergarten, who should have the information of her "condition", should her teacher know, should anyone else - PE, music, recess, lunch, secretaries??? Right now it is the need-to-know. The school superintendent, the Special Education director, her principal, the school nurse, the school social worker, and her kindergarten teacher. I made this decision. Even writing all these titles, I wonder, is it too many??? I felt it was best for our family. I bear this load. Was it the right choice? I decided that it was the best choice for our family at this time.
I want her to be safe, but I don't want this information "out" either. It would not be a good thing in our community. If my daughter feels she wants people to know, as she gets older and understands better what this means, I will give her my full and unwavering support. But to place a 5 year old in this position, a five year old who knows nothing of what this could mean socially, before she even has friends who know her for her, is not fair to her. It wouldn't be fair to make her our community's poster child for HIV without her understanding that. For next year, we will expand our little circle only to her first grade teacher. We discussed as a team who this should be, and chose whom we thought would be best. An "older" teacher who won't be out a lot with sick little ones, a teacher who has a nurse for a daughter and would take the information well without judgement, a teacher everyone on the team says is a good teacher. I trust their judgement.
We move on toward first grade.
Times like now when the team set up to support us through our educational program in our school district looks ahead to next year. We discuss yet again, for the second time since beginning kindergarten, who should have the information of her "condition", should her teacher know, should anyone else - PE, music, recess, lunch, secretaries??? Right now it is the need-to-know. The school superintendent, the Special Education director, her principal, the school nurse, the school social worker, and her kindergarten teacher. I made this decision. Even writing all these titles, I wonder, is it too many??? I felt it was best for our family. I bear this load. Was it the right choice? I decided that it was the best choice for our family at this time.
I want her to be safe, but I don't want this information "out" either. It would not be a good thing in our community. If my daughter feels she wants people to know, as she gets older and understands better what this means, I will give her my full and unwavering support. But to place a 5 year old in this position, a five year old who knows nothing of what this could mean socially, before she even has friends who know her for her, is not fair to her. It wouldn't be fair to make her our community's poster child for HIV without her understanding that. For next year, we will expand our little circle only to her first grade teacher. We discussed as a team who this should be, and chose whom we thought would be best. An "older" teacher who won't be out a lot with sick little ones, a teacher who has a nurse for a daughter and would take the information well without judgement, a teacher everyone on the team says is a good teacher. I trust their judgement.
We move on toward first grade.
Wednesday, May 16, 2007
Sentencing
I love my daughter. I love all five years of her, even though I've only been a part of the last two. I wish I could have met her birth mother. I wish I could have had a glimpse into who this woman was, who this woman is. This person who gave me one of the greatest gifts of my life. This person who passed on a life sentence to my daughter. Not a death sentence, because HIV has long since become that for many many people, but a sentence none the less.
A sentence condemning my 5 year old daughter to taking a hefty amount of medicine every 12 hours, like clockwork. A sentence condemning her at some point to face the less-than-understanding public eye. A sentence condemning those around her to fall in love with her and possibly lose her. A sentence condemning me to nightmares of forgetting to give her her medicine.
I wonder which of my daughter's traits she gets from her birth mother. Does her birth mother smile all the time like she does? Does she become easily emotional? Does she miss her daughter, wonder what she is doing, what she is like, who she is becoming? Does she regret not taking her HIV meds while pregnant with my daughter? Does she regret not giving my daughter her life-saving medicine while she was but a baby and couldn't take care of herself? Does she think about her at all? Does she plan to "do it again?"
I love my daughter. I love her for her resilience. I love her for her smiling face. I love her for her compassion for others. I love her for the fighter I know she is. I love her for the fighter I know she will become as she learns and understands more about her situation.
But I know I don't show her all of the love I have for her. I know I hold something back, even after two years, because of my own fears of loss. My fear of completely letting in this wonderful person, to give myself to her completely, and lose her. She is a long long way from that. It may not happen for twenty years or more, and still it is my biggest fear. It plagues me when I am weak and unable to rely on God to lead the way. It plagues me when I play the "what if" game. It is there even when I don't give it voice. The fear waits for weakness. I must remain strong. I must rely on God. I must pray for strength. Strength my daughter possesses and I only dream of. My daughter, my hero.
A sentence condemning my 5 year old daughter to taking a hefty amount of medicine every 12 hours, like clockwork. A sentence condemning her at some point to face the less-than-understanding public eye. A sentence condemning those around her to fall in love with her and possibly lose her. A sentence condemning me to nightmares of forgetting to give her her medicine.
I wonder which of my daughter's traits she gets from her birth mother. Does her birth mother smile all the time like she does? Does she become easily emotional? Does she miss her daughter, wonder what she is doing, what she is like, who she is becoming? Does she regret not taking her HIV meds while pregnant with my daughter? Does she regret not giving my daughter her life-saving medicine while she was but a baby and couldn't take care of herself? Does she think about her at all? Does she plan to "do it again?"
I love my daughter. I love her for her resilience. I love her for her smiling face. I love her for her compassion for others. I love her for the fighter I know she is. I love her for the fighter I know she will become as she learns and understands more about her situation.
But I know I don't show her all of the love I have for her. I know I hold something back, even after two years, because of my own fears of loss. My fear of completely letting in this wonderful person, to give myself to her completely, and lose her. She is a long long way from that. It may not happen for twenty years or more, and still it is my biggest fear. It plagues me when I am weak and unable to rely on God to lead the way. It plagues me when I play the "what if" game. It is there even when I don't give it voice. The fear waits for weakness. I must remain strong. I must rely on God. I must pray for strength. Strength my daughter possesses and I only dream of. My daughter, my hero.
Monday, May 14, 2007
The First Post
I look forward to this blog. This will be an anonymous way for me to share the thoughts and feelings that go along with having a child with HIV. My five year old daughter is HIV positive. She came to me at 3 years old as a foster daughter and is now my "forever" daughter. I look forward to hearing from others who don't understand, are in a similar situation, are scared of this disease, or even those who think "these" kids don't belong in our public school system. I long for the anonymity to discuss whatever this blog brings out. Let it begin...
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