Dream Halloween

We got our tickets for Dream Halloween yesterday!!! We are officially going! Hooray!!!

Dream Halloween

Have any of you out there ever been to a Dream Halloween event before? I just recently learned about this. What a great idea. We may be going this year. We should find out soon. How wonderful for people to put on things like this each year. :)

My "Other World"

Here is the address of my other blog for those of you interested...

http://little-did-i-know.blogspot.com

Blood Work part 2

Well, the Drs called. Her white count is still "trending down" so they are going to switch her one med that was changed about a year ago. She said nothing to worry about, they're pretty sure that's what it is that is causing the low level. OK. She is talking with the team over the next week and will let me know what the decision is when it's made. (As to what med, etc I assume.) So, good news, I guess??? :)

Blood Work

Well, my daughter and I made it in to the outpatient center today for her new blood work. They said that the tests should be done and the results faxed to our specialist in 2 hours, which means they should have the results tomorrow. Hopefully they will then call me to let me know what the results were, and what that means, if the white count is low again. If I don't hear from them by early afternoon I will call myself. Here's hoping....

Our First

When my daughter and I went to her 3 month routine appt in August, we were told that in June her white blood cell count was low. Nothing to worry about, they will just watch it. I didn't think much of it. At all.

Then one month later, last week, the day before my daughter's adoption, they called. They said that her white blood count was low again, and no rush, but they needed me to take her to our hospital locally to get new blood work done. They would call and fax in the order, and I was to make sure to fill out a release so that they would then fax them the results. I was a bit taken aback, and didn't know what to say other than, ok.

I wish I had asked questions. I wish I knew what this meant. Or could mean. I could call back. I could. I'm chicken. She said that she would call and let me know when the order was there and ready. She called Friday night. I'm taking my daughter tomorrow.

I tried looking on the internet for "clues" as to what a low white blood count would mean, could mean. All I really found was one site which said, "a person with HIV having a low blood count could mean HIV infection or another serious illness." Gulp. I started thinking, maybe God wanted this "secret" of her status "out" so that I would have a support network during this time??? I don't know. I've only told a couple people about the blood count. Maybe it's nothing. Maybe it's going to mean a med change, no big deal. Maybe. But maybe not. I hope the results are sent quickly and pray to hear back quickly. I pray.

Legal Family

We are now legally viewed a forever family! Thursday was the big day, an exciting day, a glorious day. Soon I will share with you the address of my "other" blog, my more public blog, and I will share this address on that website. My two "worlds" will merge.

A lot has happened in the last couple weeks.

About two months ago I spoke with our school nurse to inform her of my decision to not keep her status a secret. She thought that since I worked in the district I should go to each of our 3 buildings to let them know personally so that they were not talking behind my back, could ask questions of me, I could educate them more than they already are, and it was just there and no big deal. It took me a while to wrap my mind around this information/idea. I was not sure this was the way I wanted to go at all. But then, I guess, if the information is going to be "out there" why not put it on the table and talk about it instead of hiding away???

Since school began, and since I learned of her date of adoption, I have been asking and asking both the school nurse and our Director of Special Ed when this "disclosure discussion" would take place at school. I was going out of my mind with worry, anticipation, fear, questioning, etc. Each time I asked, I was basically brushed aside. I kept telling them that the best day to do it would be Sept 19, a half day for students, half institute day for staff. That way we could go building to building with no time for gossip in between. At the beginning of school the nurse said she didn't want me to go with her after all. Ok, whatever, that's fine. I finally emailed both of them on Sept. 17 since I still had heard nothing for sure. I heard back that they would like to come talk to me after school. After school they and the social worker showed up. We sat down and the Dir proceeded to tell me that although I wanted this to happen they had contacted the school attourney and they legally couldn't since it would be like the district was giving out info on a single student. The nurse just sat there. I said that this wasn't my idea, she had asked to do this. She said that no, it was only her idea to not have me go with her. What???? For two months I worked on wrapping my mind around what it was that she wanted to do in the district and deciding that she was probably right and it was the best way. Now she is denying it was even her idea? I was floored. I left with lots on my mind.

The next day I emailed the Dir how upset I was at the meeting and how this had not been my idea. I couldn't believe it was now portrayed as me wanting this and sorry, two days before it was to happen, it couldn't. The fact we weren't going to do it wasn't even the point, although my emotional state was shaky enough preparing for this and then having it blown to bits. I then asked in the email if I could do it myself. I certainly didn't want to walk into a room at work one day and have all conversation end. If they knew upfront, hopefully that wouldn't happen. That day I was called to the Superintendent's with the Dir. of Special Ed. Same thing. I could not do that unless it was on my time. LIke they would come on their own time. That's crazy.

What I want to know is, if a parent of a child with Autism, Cancer, even HIV called the school to say they would like to meet with staff to inform them of their child and educate them on their "condition", wouldn't they be able to? I'm sure they would. Think they have in the past. What makes this different? That I work in this district. Wow.

I passed out and mailed out letters revealing my daughter's disclosure on Friday. I am very proud of my letter. It put things in a very positive light and shared the facts that they have never been at risk, and aren't at risk, I told of her wish to be, I gave them two pages of basic info, one of which was just questions and answers: Can I get HIV from a mosquito bite?, etc. At school I had given out 12 of these letters to close friends/co-workers. I had many come to me crying. A response I did not expect. No negative reactions. I love the love that has already poored from these people.

Today I went to a disclosure "workshop" in Chicago. It was myself, one other adoptive parent, two social workers and the presenter. I like the presenter a lot. But the whole workshop seemed to be based on secrets. Secrets of who to tell, who not to tell, how to get your child not to tell. The other parent didn't agree with me at all that it just shouldn't be a secret. I'm not saying we're going out and advertising in the newspaper, but why the secrecy? If we want people educated and told there is nothing to fear, why hide. The presenter was open to what I was saying. Both shared experiences of mentioning the word HIV and all the negative ideas that are out there that aren't even true. I said, I don't expect to educate the world, but how on earth do we expect people to learn the truth if we continue hiding our HIV children away and keeping them a secret. Not sharing with our friends and family the truth of the virus so that they can be educated and educate others? That makes no sense. I want a brighter future than that for my daughter and others battling this. It feels like there is not much difference over the last 20 years in how this is viewed. How does that happen? By NOT talking. We need people willing to stand for truth in our country, our world. It's ok to see little children in Africa with HIV and want to help, but not in our own country, that makes no sense.

Disclosure

While my daughter is "mine forever," she has not been officially adopted yet. I apologize if I misled anyone in that nature, but I have another blog and wasn't ready for anyone to connect the two as yet. Well, today we received word of her adoption finalization date: September 20th!!! This summer has been a time for lots of thinking. Upon "talking" online with other moms of HIV+ children, and really praying about the situation as it related to our lives, I decided that what was most likely best for my daughter in her life was to NOT keep this a "big bad secret." Because that's how it's felt. I've worried about people "finding out." I've feared for her, for myself, for my family. "How will they respond? How will they treat us?" If I as an adult have felt that way, what kind of life it that to expect a child to live and grow up in? How will she create a truly positive self-image if she continually wonders what would happen if... If people knew, If people found out, Would they be my friends, Would they still like/love/care about me? I don't want that for her. We will not be keeping it a secret.

If we did, we would continue to perpetuate the myth that HIV is something to be feared, to be "caught." It's not. It's affecting many, many, many innocents who shouldn't have to hide who they are.

When asking my daughter her opinion, because even at 6 I wouldn't make this decision without her approval, she was relieved. That is the best way I can describe it. She was so happy to know she wouldn't have to hide this information.

Honestly, I think right now I fear the release of this information for myself right now more than her. I work in a school district. I work in a school district where my daughter goes to school. Where last year the staff was told there was an anonymous HIV+ child in the district, because I wanted to let the nurse and her teacher know, they made the decision to inform the entire staff in the district, anonymously. I heard some of the comments. I know they are based in fear. I do understand that fear. BUT, we are educated adults. We are supposed to "know better", to provide an example of openness and caring. I worry what will happen when they know it was/is my daughter. I have 3 weeks.

Wishes Part 3

We are on our way to a wish. My daughter and I informed her social worker that she was "ready." The Make a Wish people called me this week to verify info and get the process started. They will then send the information to Wish Granters from our area who will then contact us to meet my daughter and ask her about her special wish.

Disclosure

Well, some big decisions have been brewing lately. As of right now, no one in our life knows about my daughter's HIV. As a foster parent, it was not my right to inform anyone of this. I did tell my parents, my friend and daughter's godmother, and a friend and her husband who will be listed as guardians in my will. That's it. No one else knows this. I really thought I wanted to wait until my daughter was old enough to make that decision on her own and allow her to be the one to decide when or who to "tell." BUT, as I read more from other parents having gone through, or in the midst of, this same situation, the more I think it needs to not be a secret. I want my daughter to know she is loved and appreciated for who she is, regardless. I don't want her to grow up not knowing if she would still have friends if they "knew." I don't want her to think there is anything wrong with her, who she is, because there isn't. So, when Make a Wish happens, and sends out letters for support, I will allow them to use her name and photo. I will allow them to send letters out in our community. I will allow them to help "get the word out" so that it's not just me making a big announcement. I feel a sense of calm, of peace, and even relief. I talked with my daughter, and she gave me a huge hug. A look of relief on her face. How much pressure was she already under with this "secret?" Now she won't have to be...

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

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.

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.

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...