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Author Topic: Learning to Breathe  (Read 3680 times)

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Offline HopeandCope

  • Member
  • Posts: 55
    • Hope and Cope
Learning to Breathe
« on: August 15, 2008, 03:25:50 PM »
This is my story:

June 6th the most devastating news a mother could hear was “I am HIV Positive”. It is now a week later and the socked in the gut feeling has subsided but the tears have now let lose. I broke down today in the Borders bookstore after finding out that none of the bookstores carry any books on HIV and living with this disease. I got socked in the gut again realizing that the stigma is alive and well in the tidy suburbia where neighbors will close their doors and minds to a mother’s grief.

I have hesitation to tell my own Mother. Wondering if she will abandon my son and close off to him. He does not want them to know yet and I won’t tell them. Still, it feels that again I have a set of parents that just don’t get it. That you love your children regardless of their sexual preference as well as their HIV status. I never really thought of my son being Bi. I just thought it was another level to his personality that although I did not understand it totally, I understood it more than he gave me credit for.

I am so scared for him. My God I want to wrap him in cotton and take him home with me. I just have to wait. Wait for virus level results, T-Cell results, results for everything and the waiting is killing me…..

What we as parents of HIV+ children go through is a myriad of anger, confusion and grief. Much to my dismay, I found that there were only two support groups for parents in the Chicagoland area and I was frustrated and saddened by this.

One train of thought is that parents would not participate in support groups because the HIV+ status has been deemed a chronic illness. But with chronic illnesses there are many times when it can get to you. When hearing your child go through a myriad of complications while he/she is on the meds, worry when the T-cells start to do their fluctuation dances and general panic when flu or worse strikes. It is a helpless feeling; one that I know many parents can be overwhelmed by. So I do feel there is a need for a support group for parents of HIV+ children and so it starts. I am learning to breathe……

I have started a blogsite and a monthly support group for parents of HIV+ children in the Fox Valley Illinois area.  For anyone interested, the blog address is http://hopeandcope.blogspot.com/ I have also been encouraged by the AidsMed Editors to participate on these forums and I am grateful for all of you here.
Hope and Cope Support Site
A Safe Place for Families & Friends of HIV+ People

Offline riverlassie

  • Member
  • Posts: 31
  • Beauty is in the Eye of the Beholder
Re: Learning to Breathe
« Reply #1 on: September 06, 2008, 04:36:20 PM »
I hope you the absolute best with your blogspot. Anytime you need infor to share with other parents you just come here and ask one of the many knowledgable folks. I've only come across acouple of parents in these web sites over their child being pos. I think it's a great thing you are doing and it will help your heart heal also .
               God bless your endeavors............................
Worrying is like a rocking chair. It gives you something to do but doesn't get you anywhere.

Offline xyahka

  • Member
  • Posts: 799
  • Dance together!! aha!! aha!! I like it!!
Re: Learning to Breathe
« Reply #2 on: September 07, 2008, 04:23:04 PM »
When i first disclosed to my mother, she was very shocked... and during the next 2 months she lost lot of weight.... often lost notion of time or forgot things she was doing when suddent thoughts or worries caught her mind. I know it is hard for a mother to listen this kind of things.

Eventhough the fact i also disclosed to some other people in family made it easier for her to handle it, cause she had others to share the fears and worries she wouldn't mention to me. Here there are not support groups for parents, so i think your initiative is FABULOUS!! I wish you all the best, thanks for empowering others to help us.

Juan Carlos
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline HopeandCope

  • Member
  • Posts: 55
    • Hope and Cope
Re: Learning to Breathe
« Reply #3 on: September 08, 2008, 11:42:04 AM »
I think the best way for me to gather stories is to get the word out.  I went to my first HIV Support Group and met a whole bunch of really great people there who were enthusiastic about having a support group in the the Chicago burbs, hopefully the more info I get out the more moms and dads can get involved.

I do have a guest blogger who writes about her experiences with her HIV+ partner (my son) and some of it is very moving and powerful. it called "Where do we go from here" the site is http://magneticlearningcurve.blogspot.com/

I hope that my blog site and the support group get some much needed buzz, and I hope all of your parents can have a place for them as well.  Anytime they want to talk to someone on the site have them email me at HIVHopeandCope@gmail.com

Love and Smooches and Many Hugs to You!

Hope and Cope Support Site
A Safe Place for Families & Friends of HIV+ People

Offline GodSon83

  • Member
  • Posts: 90
  • El hijo del capitán Trueno tenía pinta de raro
Re: Learning to Breathe
« Reply #4 on: September 09, 2008, 12:31:43 PM »
Congratulations !!! I think a support group es necessary for all us that have any relevant experience.

´Since 6 years ago, i´m visiting an Al-anon group( for those who live with an alcoholic friend or partner), and sincerely, when i realized that my partner is positive, many ideas that i learned in the group were a strong support for not slide on.

i think here in myu city there are 2 groups from positive people ( ;)) , in fact i´m going out to a session right now.

Really, i hope your efforts will succesful and bring so much hopeful to so much people that need it.

Jun 08  - (-)
Jul 08   - (+)
Dic 08 - CD4:921
May 09- CD4: 1,025   CV: 8,233
Dic 09 - CD4:    911   CV: 5,160
May 10- CD4: 1,054  CV: 6,510
Sep 10- CD4:     923  CV: 1,832
Mar 11- CD4:     508  CV:  1,489
Jul   11- CD4:  1,064  CV:    558
Nov 11- CD4:  1,945  CV:    795
Abr  12- CD4:    859  CV:    401  ´Still no meds´

I like i feel! :)


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