The Highs and Lows of My HIV Journey - Part II

Now on to the next hurdle I have had to face. This one hits my heart!!!! My 13 year old daughter has been riding the bus and staying the night often with her best friend who has severe OI (brittle bone disease) and is wheelchair bound because her bones break so easy. I have been letting her stay with her because I do not like her to see me in pain and the depression has gotten very overwhelming at times. My daughter's best friend's mother (Michelle) and I have become very close, we share a lot in common because she has had to fight for her daughter and her rights at school, they know her well...LOL.

One Monday, Michelle tells me that my daughter told her when she was in her Science class the week before, that she was asked to go to the guidance office and talk with the guidance counselor's secretary. This secretary asked my daughter why she was riding the bus to one address so much when her home address was different---mind you a note was written a long time ago for her to ride the bus because I had a partial hysterecomy and my daughter rode the bus and stayed with them while I was in the hospital--so at that time we found out my daughter couldn't ride the same bus as her friend because her bus was for handicapped children only. A note was also sent at the beginning of this school year. My daughter responded with--I go to my Godmother's house (Michelle) when my mom doesn't feel good. This secretary then asked my daughter if I was sick, and did I have a disease? After Michelle finished, I quickly called the school and left a message for the assistant principal to call me. I finally decided after a couple hours went by, to just go up to the school and talk to him in person. I told him the situation and asked for the secretary to be brought in to talk about what had happened. He replied with--I would like to talk with the secretary first. I then left after he first took my number down and told me he would call me.

The next day I got no call so I called and left a message. My daughter comes home that day and tells me he, the assistant principa,l pulled her out of class again and questioned her about the incident and the way she explained it to me it sounded like an interegation not just questioning. I then called and left another message and told him he was to not question my daughter without me there and a couple of other choice words (I did not curse and was respectful but firm in my words) and asked him to call me back. After still not hearing back I then called and left a message for the principal. Within a couple hours,  the principal called me back and I explained the situation to him and he responded with--I don't feel good about this--my response was--Sir I don't either. He then told me that the Assistant Principal needed to call me back. Within an hour I FINALLY got a call from the assistant principal and the conversation was that he felt it wasn't in the secretary's character to say that and she doesn't remember saying it--so I guess this means she didn't, according to him.

I finally told him that it comes down to a 'he said-she said' and I felt the secretary wouldn't admit to it anyway and with there being no tangible proof there was nothing I could do but pray it never happens again. He continued to take up for the secretary and wanted it to be swept under the rug like it never happened. Why wouldn't they call me if there was a problem with the bus and it seems funny that I actually do have something, a disease. This woman was fishing for information from my daughter!!!! I am ready to homeschool my daughter and whoop this woman's behind. I do feel I have made it known that I will not put up with them doing things like that to my daughter. They now nit pick at little stupid things my daughter does, like riding on the back of her best friend's wheel chair and her holding the leash to the service dog because it fell and her best friend had a lap full of books.

I am at a loss about people in this community. The last thing I want is for my daughter to be treated differently-- and especially because of me. My journey in life the last couple of months has been crazy with a lot of ups and downs, highs and lows. I feel I have been fighting battles all the way from getting a doctor to find out what is wrong with me, getting a doctor to make it to where I don't suffer and in pain all the time, getting assistance to cover my new HIV meds of $163 and then once the other meds are included the cost goes up to almost $300 a month, to now dealing with my daughter being interrogated over me and my disease. The upside, the highs, have been wonderful and I have been cherishing them. I have a diagnosis now, my pain isn't as bad or as often and my children can see their mother actually be a mother, cleaning the house, helping with homework, cooking a real meal instead of going out to eat.

I often feel it would be so much easier and better on everyone around me if I were just gone. All of the financial battles and discriminating would be gone but I cannot be so weak. The thought of my children standing at my casket kills my soul. So yes, we all have hardships and battles to conquer but at the end of the day we all have many things to be thankful for. We are all loved and touched in some way by someone and sometimes we don't even realize it. I encourage everyone that makes it through my blog (lol) to count your blessings when you lay down at night. HIV is not fun and can be really depressing to where you want to throw in the towel, put up your white flag and yell 'I give up', but you can't. We all have a purpose and I am still here after 22 years of being infected, discriminated against, put down, felt isolated in this disease, my children feeling different, but I am still here, still standing and still have a lot of love to give to those that will soak it up like a sponge. You also have a purpose!

So to end my chaotic blog I want to say, "Keep your head up, stay strong, take a moment everyday and remember you are loved by someone, you make a difference to someone and their life." Hoping this helps someone somewhere.

Ang

Tags: 

like0

Comments

jae001's picture

Hi Angela,
Run don't walk to your child's school district. Take them a note from your pain doc. stating your daughter needs care when your pain level is high. Then kindly state that if anyone interrogates your daughter again at that school you will sue for your right to privacy. I am sure you can find a nice lawyer to take up your cause pro bono :)
I love you girl!!!
Jae

like0

Vickie's picture

My thoughts and prayers are with you. Thanks for being courageous and sharing your personal journey with us. The struggles we often face are difficult and frustrating. Protecting our families and love ones is an important part and doing it with dignity and grace is challenging to do at times. You are an amazing woman, loving mother, and wonderful friend. Love you!

like0

lex's picture

:) ur strong nd so is ur daughter .. I'm 22 & can't even imagine 22yrs frm now. . Was but true.. Ben living wit it fa 3yrs now ... love Da story doe... ttus

like0

angelakrebs74's picture

Thank you all for your wonderful and encouraging words. Feels good to have that kind of feed back.

like0

Blog themes: 

Do you get our newsletter?

admin's picture

Sign up for our monthly Newsletter and get the latest info in you in box.

seventh name

Get basic information about lipodystrophy: body shape changes, metabolic complications, and causes and treatment of fat loss and fat gain.

Get basic information on HIV in children: HIV care and treatment, preventing illness, drug adherence, disclosure of HIV status, and more.

Learn why nutrition is so important to HIV+ people, how it is measured, and several ways to stay healthy by eating smarter.

Browse Blogs by Theme