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Raising HIV-Positive Children: The Joys and the Challenges!
Interview by Talata Reeves
Director, Women & Family Services Department
Michelle, thank you so much for taking time to do this
interview. Could you tell me a little about your family?
My family is a unique family. My family is comprised of myself,
my two children -Rondell and Raven, my partner Kitty and my three
nieces and nephews - Jamila, Jerome and Ismail.
How did you find out that your daughter was HIV-positive?
I found out about Raven being positive because I was living with
a guy who was beating "the shit out of me" and I left the house
one night. I left Rondell with my mother and she took him back home.
Raven was four months old at the time: I packed a bag and took her.
I rode the train all night and there I saw an ad that had a number
to call for help with using drugs. When I called the number I got
put through to Community Planning Council. I slept on the train
and breast fed her all night on the train because I did not have
any food. I called the facility the next morning and told them my
story. Once they heard my story, they asked if I wanted to see the
doctor. I agreed and through that I took the HIV test and when it
came back positive they tested Raven.
How long did they take for your test results?
It took about two weeks. They took me back home and called domestic
violence because I had bruises on my face. He was removed out of
the house because of domestic violence intervention and they advised
me to stop breast feeding and got me baby formula. They got me in
touch with an immigrant group to support me. Once my results came
back positive that is how they hooked me up to medical services.
I had no job, no housing, and no legal status at the time and that
is how I got to GMHC. When the doctor who was the HIV doctor for
my first primary care visit heard my story, she asked me "when are
you going to stop harming yourself?" She picked up that I was a
lesbian and I was harming myself because I could not deal with who
I am. She then referred me to GMHC to get my legal status taken
care of so that I could get some independence. When I came to GMHC
I met an immigration lawyer who was fierce.
I did not have Raven retested until she was eighteen months old.
I believe that Raven got HIV through breast feeding. The doctors
advised that it was not necessary to test at the time because they
would see my antibodies but to wait until she seroconverted (hopefully).
But I was still breastfeeding her during that time. I still did
not believe it. I had no other women to support me to explain the
breast feeding piece. The day I got her result I stopped using -
cold turkey. I went through this terrible withdrawal from cocaine
use. I got very sick, I called the case worker because my boyfriend
was back in the house. I went into a family shelter. Part of my
recovery was coming to terms with my sexuality and the fact that
my daughter was HIV positive.
We stayed in the shelter eleven and a half months. While I was
there I found out about a program to help us. But I had to do my
own advocacy to get out of the shelter. Raven was with me all the
time. While I was in the shelter, I needed to get involved and I
offered to volunteer at Community Health Care Network because I
knew that there were women out there who had my experience. I started
as an outreach worker and began to tell women that I was living
with AIDS. I went to beauty parlors and everywhere I knew women
hung out. And that is how I started working in the field. GMHC,
Community Health Care Network and Partnership for the Homeless are
the three organizations that helped me. GMHC got me my legal status,
Partnership for the Homeless got my first home and Community Health
Care Network gave me my first job.
What were your concerns/thoughts and fears at the time?
I stayed with Community Health Care Network and really appreciated
that they stuck with me. I did not have time to think about fears.
All I wanted to do was stabilize my life for Raven because I knew
I could then stabilize her life. When I called my sister and told
her that we had HIV, she told me to forget about getting my son
back 'because you and that baby are about to die." My family did
not let me talk to my son when I called him. I did not have time
to look at my fears: I just needed to get on my feet. I knew that
the AIDS community had "my back", if I may. A lot of the community
leaders heard my story and were very concerned and supportive. They
worked with me in putting together a plan and helped me get my family
together. I knew that I was not alone in my struggle and also they
assured me that we can do this together.
I did blame myself for Raven's status for many years, but then
through my growth and the knowledge that I gained through my involvement
in the AIDS community and advocacy, I then got family therapy and
individual therapy for myself. This then helped me to relieve myself
of this burden that was a barrier to my self-esteem, my right as
her mother and most of all it allowed me to focus on the love and
support that I can provide for my daughter and both my children,
this is so rewarding to any mother. I no longer blame myself.
As a parent raising an HIV-positive child, what kind of
support did you find?
One of the first things that I did identify, through my involvement
in the community, were the resources and programs that could help
us all through our crisis. I reside in the Bronx and we received
services from community based organizations that provided family
support through interventions such as therapy and support groups
for parents with positive children. I am now on the Board of Directors
of one of them, the JUST KIDS program, where I met other women such
as myself. I then became a client of the Child Life Program here
at GMHC, and just the basic connection with other women who dealt
with similar situations such as myself and children helped. We spent
many a time on the phone, talking, crying and being there for each
other. Through these organizations and other people it made things
a lot better. And the more people I met, I was reminded that I was
not alone and that I could not do this by myself. I met other mothers
who dealt with things that were new to me but with their support
I found ways for me and my children to participate and bring our
needs to the surface. This was the beginning of the path of advocacy
that I did not even realize gave me the strength of empowerment.
When did you tell your daughter about her status?
I told my daughter of her status at the tender age of five. I did
this because I was prepared to help her understand what we both
were living with, and to assure her that I was doing everything
in my power to help make this better for us. I was now part of a
group of parents with positive children who knew it was up to us
to help create change and bring our family needs to the surface
and to help impact the identification of resources for all families
in our situation.
What has been her experience in school and other growing
up issues? How do you help your daughter have a "normal" life?
Raven has had very bad situations at the different schools that
she attended, but all in all we did not fall apart. We used the
resources that we had from legal advocates as we experienced discrimination
from kids at her school, the teachers, and also neighbors. How we
dealt with it came from my experience in working in the AIDS community:
not being afraid and speaking out. We knew that we had rights and
that discrimination was wrong, but we also learned that we had support
from many decision makers in this community. So we decided to go
public and start educating society on the impact of discrimination
for families with this disease.
Raven was scared at first because this was so new for her and she
did not know of any other family that had dealt with this before.
I then gave her a chance to speak with other people to help her
see that we are not alone in this issue and that together we can
make some changes. Through these speaking opportunities Raven has
now built her own little fan club. She is not ashamed of us living
with HIV. She now has friends that know that we are infected. They
have seen how brave Raven is because she went public and is speaking
up on this issue and it has made it a little better for us.
Raven is very interested in boys her age today and we talk about
if she wants to let someone know of her status and how we are going
to deal with it. I cannot say what a normal life is for Raven because
Raven does not know what it is like to be HIV-negative. So if being
negative is normal I cannot comment. But what I can say is that
we are all living in my household with HIV, but that is not what
defines our family. I am raising her to know that she is a beautiful
young lady, and that together as a family we can overcome the many
obstacles in life that we all face on a day to day basis. We will
not give up until we feel that we have tapped into all resources
to address the situation.
What are your hopes and concerns about Raven's future?
Raven wants to be a lawyer for children who are sick. She believes
that "lawyers make it better for people". Every time we had a problem
and I called the lawyers it did solve the problem. When I asked
her about whether or not she wanted to be a doctor - because doctors
help a lot - Raven told me that she does not want to be a doctor
because "they can't cure but when you call a lawyer and you have
a problem they stop it". My hope is that Raven will be able to attend
law school because I believe that she will be a fierce advocate
for children that are living with many diseases.
My hope for the future is that all positive women would get the
opportunity to earn a degree in some aspect of their lives and be
able to demonstrate to society that the hand that was dealt to us
gave us the strength, and knowledge to help impact change in the
perception of positive women. For myself, I hope to become the best
public health advocate, via my private practice as a therapist/TV
talk show host, "Look out Oprah", or the ultimate, as a member of
congress.
As an HIV-positive immigrant woman I have experienced some of the
most humiliating forms of discrimination in this country and before
I leave this earth I must contribute to the needs of immigrants,
in one way or the other. One of my concerns is that we all should
continue to join our forces and continue to be vocal, to maintain
the momentum as advocates, to create the change in society's perception
of people living with AIDS and HIV. I am hopeful that the work that
many of us are putting in today will not go in vain, with programs
like GMHC, and the advocates that have come out of this organization,
like me and the hundreds of allies that we have, I know that with
our unity we are making a difference.
What advice do you have for other parents raising HIV-positive
children?
My advice to other parents raising HIV positive children is not
to lose the focus of your responsibility as a parent first and foremost.
We are blessed with these wonderful treasures called our children.
Do not be silent about your needs and remember that there is someone
out there who has gone through the same things that you are going
through. Learn from their experiences and the things that they have
done to get to the point of self acceptance. Know that you may be
changed by the things that have happened to you, but you must not
let yourself be lessened by it. Networking helps: ask to meet other
families. We are available to be a resource and a support buddy
and know that you are not alone.
For more resources on HIV and the family please contact Women &
Family Services Department at GMHC: 212-367-1366. To reach Just
Kids Foundation please call (914) 934-9254 or (718) 892-4634.
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