A Mom's Perspective…

Recently we asked Babes members to ask their mothers for their comments on the challenges they face in having a child with HIV. Following is a letter written to a Babe by her mom. We would love to include more submissions, whether they be letters, stories, poems, etc. Let your Moms know!

My Dear Daughter,
When I first heard the news about your testing positive with HIV I felt so profoundly sad there were no words to express the impact the knowledge had upon me. I was in shock. So many things ran through my mind. I wondered how much the choices I had made in the men I married had to do with it. Then I stewed over how or what I might have done differently that could have steered you in a different direction in life. Was there something I could have done (that I didn't do) to prevent this from happening to you.

I was angry with myself for ever having married your Dad. But then I laughed at myself too because I thought well if I hadn't married him then I wouldn't have had you at all. I flashed back to when you were born… I remembered calling my Mom and telling her how far apart my labor pains were. She got alarmed and wanted me to go to the hospital right away. I was remembering how long I had to be in the hospital before Jerry was born (about 12 or 14 hours). So I wasn't anxious to go till I was sure I was close to delivery. So I kept working around the house till I was pretty sure the labor pains were going to stay consistent. Then I called my Mom and she took me down to Doctor's Hospital in downtown Seattle.

Your Dad and I were separated then but he did come down to see you. I had been given the anesthesia that puts you in a twilight state and I was sorry afterwards because I don't remember much of the birthing process. I thought about holding you in my arms and looking into you r little face. Then as I flashed back that scene, I thought, how could this be happening to my beautiful daughter? But then I thought about how I enjoyed breast feeding you and holding you. (I suppose that was hard for your brother Jerry because he was a sensitive child and had to take a lessor position as far as the time I had to pay attention to him plus his Dad had disappeared and wasn't there for him much either).

You were a joy for me though. I happily dressed you up in little girl clothes. When you started walking you were a bit pigeon toed and would fall down a lot. Jerry would follow you around and try to help you. He was approaching 4 years old then. (He was 3 when your Dad left and that was just before you were born). I guess your coming eased the pain and loss of your baby brother. The baby boy (David) I had before I got pregnant with you had died three days after birth. As a result, I worried about you a lot. I watched you carefully to try to keep you safe from harm. After hearing of your diagnosis (in about 1987) there were many mornings that I would wake up and go through the grief of realization again. Then I would always hope I was just having a bad dream and would wake up from it soon.

Not being able to talk to friends or relatives about it made it much more difficult. The hysteria about Aids was ever present. I was so grateful that you had been through a treatment program. I knew you would be more likely to survive longer and take better care of yourself better. So I tried to focus on your recovery and let go of the fears around how long you would live and all that would involve. I said and still say many prayers for your survival.

During this process I also began to realize that we all have a time to die and most of us don't know when our time on this earth will be finished. So what is important is to treat the time we do have with reverence and make the most of it. There are many times when I've wished I could wave a magic wand over you and your husband and return your bodies to the health you had before this disease befell you. It has been very hard to watch my grandsons go through the difficult time that has followed since their birth. All the concerns we had about their being ok and the great relief of seeing them in the world and finding out they were disease free. I really appreciated the close contact and fluid communication we had at that time. It helped relieve the anxiety I had about it a great deal. It's been very gratifying to watch your progress as parents and to see the boys growing into more self assured individuals But at the same time, it has been painful not to be able to talk with you on a regular basis as the boys are very challenging to care for and your energy levels are frequently depleted making it difficult to have regular dialogues with each other. As a result, we've had many times when communications were disrupted for undetermined periods of time leaving me in the dark about what was happening. Those times are still hard for me. And though I admire your diligence with the boys I mourn the loss of a more frequent dialogue.

I hope you are proud of the progress you've made. I know you have struggled with so many issues in try to heal your wounds of the past as well as deal with the challenges of the present. In my life I have worked on many of these issues too. Your personal development has been very impressive. I am pleased to say to the world "This is my daughter." With lots of love, Your Mom P.S. I wish to add the thought that it is very difficult to use the inadequate vehicle of language to try to convey the profound emotions that exist in an experience like this one. This letter is but an inadequate attempt to merely scratch the surface of it all.

groups, GROUPS and more GrOuPs!

NEW: Starting on February 22, we will have a group on Mondays from Noon to 2pm at the Northwest Family Center. This group will be different, because it will be involve educational classes as well as support. This is a great opportunity to learn (you choose what), eat lunch, and talk with others who are in your situation. It’s convenient, too because it will be held at lunch time at NWFC, on the same day as their clinic.

How It Works: As many of you as want to will be our CORE GROUP. You will decide what classes we will have, who you want to teach them, what our ground rules will be, what we will have for lunch, and come up with a name for the program. You even get to decide how many class sessions we will have. Some of you may want to take a leadership role – perhaps contacting the potential instructors, or getting the food, or taking attendance. Then we will have an open house to get more positive women interested. At the end of the whole thing we will have a big graduation celebration. In other parts of the country, graduating from this program has helped women to get jobs, fulfilled rehab requirements, and generally improved women’s image of themselves.

How To Find Out More: Facilitators for the group will be Deborah Hudson and Debra Valahu from BABES, with help from Jesse Chipps (BABES) and Kristen Cameron Peace from YouthCare. Call Jesse at BABES: 206-720-5566, ext. 15 to find out more! We look forward to seeing you there!!!!

No More Night Time...What to do? Several of you have said that you wanted a night time support group. We answered your call with a Wednesday night group, but OOOOOOPS! You didn’t come! So, sadly, we have discontinued the group. We want to know this: Do you still want an evening group? If so, what time and day should it be? Should it be every week? Would having dinner at the group help you to get there? TELL US!!! Specifically, tell Jesse: 206-720-5566, Ext. 15. When we get some feedback, we can look into starting a new group!

THURSDAY ROCKS Our Thursday group continues with lunch and conversation. Every single Thursday from Noon to 2pm with Deb Hudson and Laura Camacho. Be there or be square.

FREE COMPUTERS: The UPDATE

Back in November we asked you to write us a note if you wanted a computer. Boy, did you! We had everything from notes to novels to poetry. We wanted to take this opportunity to check in with you about our progress. 22 women wrote asking for computers. After some wheeling and dealing, we were able to get enough screens so that EVERYONE could get a computer...HOORRAYYYY! About 2/3 of these women already have their computers. We are loading software in the others, and will call you when yours is ready. If you have any questions about when and how you will get your computer, call Loren at 206-720-5566, ext. 12.

Many of the women who have gotten their computers already wanted some help in learning how to use them. Loren will be having a class on How to Work Your Macintosh Quadra soon. If you are interested in this class, give her a call. She is also researching some things such as how much it would cost for you to purchase a modem (so you can go on the internet!), and what kinds of software you can purchase. Jesse found some “freeware” games, and will put these on disk to be handed out at the class.

Also, we want to send a thank you card to George Treparinas and the folks at Reed McClure law firm, which donated them. If you would like to include a note (signed or anonymous) please call Jesse (Ext. 15) or write it and send it to the office: C/O Jesse at BABES Network, 1001 Broadway, Suite 100, Seattle, WA 98122.

MORE FREE COMPUTERS!! SAY WHAT??????

Computers are us! When Daniel Bernstein of the THAW Corporation learned that we were giving computers out to women living with HIV, he arranged for THAW to donate some of their old computers as well. Hooray, Daniel!

This means, if you missed out the first time, there are still a few more computers to be given away. Send your note, novel, poem, song (just kidding—we only need a note saying what you will use the computer for) to: Jesse at BABES Network, 1001 Broadway, Suite 100, Seattle, WA 98122 or fax it to 206-720-5901. We will give you the usual cautions: These puppies are not new. They don’t have modems or CD rom drives, or printers and they definately do not move at the speed of light. But, hey, they are something!

ONE MORE COMPUTER THING

Since we are getting to be this total HIGH TECH group of women, anyone who wants to send stories about using their computer, or pictures for the newsletter...PLEASE DO! Also, you can send problems (or solutions to problems) you have discovered in to the newsletter, and we will print them to help raise everyone’s knowledge level. Send these to the above address, but to Loren, not Jesse. ALSO, if you know of a business (or individual) who is looking to get rid of an old computer or other computer equipment like printers or modems or monitors or...tell them that donating this equipment to BABES can help them to save money on their taxes.

HRSA Care ACTION

It’s nice to know that the Federal Government is thinking about women with HIV. The December issue of HRSA Care ACTION, a publication put out by the Health Resources Services Administration (which administers the Ryan White CARE Act) is all about women and HIV/AIDS. The 12-page newsletter includes information on clinical care for positive women, information about women and their risk for HIV, perspectives from providers who serve women and more.

We have about 20 copies of this publication at the BABES office. If you are interested in reading it, come by or call us to get a copy.

The Planning Council: Why You; Why Now Do you want to make a difference for people living with HIV in King County? Why not join the HIV/AIDS Planning Council. This group is responsible for prioritizing and allocating $7 MILLION (yes, I said SEVEN MILLION DOLLARS) in care and prevention funds every year.

Exciting new news: Now you can get COMPENSATED for the time you spend at Planning Council meetings. It used to be that people who participated in the Council had to do so purely as volunteers. Now, people who are low income can get a small stipend ($20 in grocery vouchers per meeting, up to 3 meetings or $60 per month). It’s a small token for the important job you would be doing.

Are you afraid that you won’t know what’s going on or how to participate? Candidates who are selected for the Council go through an orientation process, and members are generally helpful in answering your questions. A sub-committee of the Council, Positive Voice Seattle, is designed specifically to address the issues of consumers. What’s more, I found this juicy quote from the latest Care ACTION newsletter: “Spending decisions for more than 60 percent of all CARE Act dollars are made by Title I Planning Councils and Title II Consortia. The HIV/AIDS Bureau is cooperating with the AIDS Policy Center to respond to the skills needs of women involved in local planning by developing a training curriculum that assures their full participation in the planning process.” Hopefully, this means that we will be seeing some of this training in our area.

Are you sold on the Council yet? To get an application, call Jim Jorgenson, Planning Council Coordinator at 205-5511. He is a really nice guy and can answer many questions you may have. Jesse Chipps from BABES and Gerrie LaQuey from Northwest Family Center serve on the Care side of the Council and can tell you about participating there. Julia Sterling from BABES and Marla Gundle who used to be a Case Manager at NWFC serve on the Prevention side, and can give you information about that side of the Council.

HEALTH CORNER

We are sad to make the announcement that from now on the Health Corner by Julene Tripp Weaver will not be run as a regular feature of BABES Talking. Julene has been kind enough to share her vast knowledge and supply us with a very informative article each month on health issues relating to HIV/Aids. In the future we may occasionally run articles from Julene as she posts them on her personal website. We all would love to thank her so very much and wish her the best of luck with her new pursuits. Following is an announcement from Julene:

All twenty-seven of my "Health Corner" articles, published in the Babes Network Newsletter since January 1995, are now on my personal website!!! you can get to my personal page at: http://www.wolfenet.com/~johnjune/Julenepg.html Go direct or link to my site from Babes Network's webpage.

CHECK IT OUT!!!

From my page you can then link to a page that lists all my Health Corner article titles, and each article is linked so you can click in and read them. From my page you can also link into Babes Network or send me an e-mail. So let me know what you think!

There is also a link to my updated Muse To Write workshop schedule.

This homepage is under construction and eventually a page of links to other choice sites will be added. Future writings will be added as possible. I look forward to hearing from you!

In The News...

---- WOMEN & HIV -----

Adverse Events Common in Pregnant Women on Combination Therapy Reuters Health Information Services (01/01/99) A study conducted by Dr. Patrizio Lorenzi of Hopital Cantonal Universitaire in Geneva, Switzerland, and others indicates that most HIV-positive mothers and about half of their children receiving combination therapy during pregnancy develop one or more adverse effect. The researchers, who published their results in the December issue of AIDS, evaluated 37 women and 30 infants who received combination therapy. Fifteen of the women experienced anemia, four women showed transaminase elevation, and four women had nausea and vomiting; cases of glucose intolerance, nephrolithiasis and diarrhea were also reported among the mothers. Among the infants, 10 were premature, eight had anemia, two showed cutaneous angioma, two infants had cryptochidism, and there was one case of transient hepatitis.