The Scary Side

When I first received the call about the possibility of having my daughter placed with me as a foster child. I was the educated know-it-all. I thought, "I know about HIV, I've heard about it, I've looked up some on children who convert to negative within the first 14 months of their life, etc. I know it's "hard" to "catch." I know it's not something to be scared of." I saw in my mind a 3 year old girl in need of a home.

Then she came. Let me tell you, the first night of ANY foster placement sends my stomach into twirls. I am nauseous and unable to sleep. I think repetitive thoughts on why? is this the right placement? what was I thinking? On ANY foster placement. Every single one has been like that. Every one. So for my daughter's, it was no different, only my thoughts added the HIV component. Have I gone too far? Have I threatened the health of other children in my home? Did I make the right decision? I was ready to call the next morning to tell them I couldn't do it. (But I think that every time!) And by the next morning, I feel revived. I wonder what was I even worried about, what was I thinking. The routine of taking care of a child begins and the fears melt away into caring, laughter, and eventually love. This placement was no different.

She was a 3 year old girl. She needed a home. She smiled constantly. She wanted to please. She loved attention. She was quiet, but laughed good when something was funny. Her medical "condition" faded into the background. It remains there for the most part even now. I "forget." I forget her "terminal" label. I forget. She is a child.

Her medicine was the hardest part. She must get 3 medications every 12 hours. I wanted to plan it so that no one at day care and then school would have to administer it, but also so that she took it before bedtime and not too early in the morning. She takes it at 7am and 7pm. The worst part is that one of them has to be refrigerated, so whenever we are anywhere past 7pm, her medicine must come with, and be in a bag with a freezer pack. Disney, the zoo, long trips, you name it. Plus, going on an airplane for vacation means a cooler with freezer packs and her medication. This time in our nation's security makes it hard. But that becomes routine as well.

A child with HIV is not "hard." Thinking of the future can be, but who wants to play the if/then/whatif game? I could do that with any child. What if they are taken? What if they went through something horrible in the past I don't know about? What if someone from their "past" sees them in public? What if?

Wishes Part 2

So we've begun discussion of my daughter's "wish." I explained to her the best I could what this means, who these people are, why they do what they do. I don't think she completely understands. I'm sure she doesn't. But, I explained the best I could making it known that it is a VERY generous gift she is being given.

We talked of what types of wishes one usually gets. I have racked my brain to think of ideas she would enjoy. I want her to choose something I would not be able to give her myself at some point. DisneyWorld - we've been, etc. Mostly they are trips. The one thing I thought of in the "to have" category I thought she would love. We don't currently have any type of swingset. I have looked into them numerous times, but the ones I would love to provide are the wooden ones that are just too expensive. But buying a metal one that may not last through numerous foster/adoptive children may not be the way to go either, so we wait. I told her the idea and she loved it. BUT, she said she would rather wish for a trip. It's ok, it's her wish. I will give her as many ideas as I can, and when the time comes for her to officially make her wish, she can choose any of them she wants. It's her wish.

So, my other (trip) ideas so far: Disney Cruise, Hawaii to swim with dolphins, African Safari, Grand Canyon. I just don't know. Are any of these too extravagant??? I search for other ideas for things she would love to do and see at this age or sometime soon. I plan to take time this summer, before her next doctor appointment, to take her to the library, research on the internet with her, and open up her world enough for her to make a wish she will be happy with as she grows older. Ideas???

Wishes

My daughter and I went to her doctor's appointment yesterday. She goes every three months for blood work and check ups. Everything still looks great and her levels are so low it's almost undetectable, which is great. We received some very interesting news while there. They told us that my daughter is to get a "wish." A wish. From the Make a Wish Foundation. That floors me. I never thought of us in that position I guess. I read up on their foundation and can't believe what a generous organization. I knew they were, don't get me wrong, but never fully understood the magnamity of what it is they do. They do not turn down any child who has a terminal illness. None. Every one is granted a wish. That overwhelms me. It's also hard to think that she is deemed "worthy" of a wish. She's a child. A five year old child in every way "normal." It's hard to think of her in the terminal reality of her life. And the weight of the "wish" falls mostly at my feet. She has no idea of the scope of what is "available," of the world around her. This wish does not have to happen now. It could be the next year or two, or more. I take as my responsibility to teach her about things in the world she may be interested in wishing for. A trip? To where? Why would she want to go there? Something to have? But what? We have so much compared to so many. Someone to meet? I asked her this and she grinned big and said "God!?" She doesn't have "idols" at 5 (except Ariel whom she's met.) Something to be? No ideals there as yet. I look for ideas. I want it to be her wish, not mine.

Adding On

I would love to add another child with HIV. Is this strange? Is this weird? I think about it often. It wouldn't be too hard since we already visit the doctor evey three months as it is. It would be a child in need of a home. A child with a similar history and most likely a similar future as my daughter. They would each have someone to share "this" with. Someone who understands. Someone who has been there, is going there, is feeling the same feelings, someone to help the other in dark times when mom just doesn't cut it. Because try as I might, I can never understand what she is going through, what she is feeling. Love isn't always "enough."

We have a wonderful doctor at a large hospital about an hour away. The staff is so caring and helpful. Our parking is always validated, if either of us get hungry a granola bar or cup of juice is there before we can ask, the people we see know us, they remember "little" things like favorite colors or what types of lessons are being taken, we are followed up by a social worker as well for anything we may need. At Christmas and birthdays, my daughter is given gifts. Wonderful gifts. This Christmas she received an outfit, some stationary, and an American Girl Bitty Baby! In addition, I was given a present as "caretaker." A gift bag with a restaurant gift card and some Bath and Body Works products. So incredibly thoughtful!

Comments

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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.

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.