To Tell or Not To Tell

Every single day I study my daughter's face and notice her expressions, the way her lips move, her eyes, the highlights in her hair...and every single day I acknowledge the miracle that she is. The miracle I longed for and fought for. I don't take her for granted. She is ferociously loved and adored. Perhaps the most loved child that ever lived. I love her from the deepest crevice of the core of the earth to the farthest star in the farthest galaxy.

She is my miracle PrEP Baby.

Last night my husband and I were talking about the lovely weekend we spent with our neighbors. We were in the common backyard with all 11 children playing in the assortment of inflatable pools and running through the sprinkler obstacle course and dodging the spray from the array of water guns. Sometimes our house had the closest sink to refill from, and another neighbor's house had the closest bathroom, and still another had cold beer in the fridge where we could go help ourselves. Point being that as neighbors, we trust each other, and look out for each other, and care for one another's children. Its the life I dreamed of for my daughter.

In our conversation I asked my husband what he thought would happen if somehow the neighbors found out about his HIV status. Let's say, one day our daughter is playing at the neighbor's house or at school and says something like "My dad takes medicine for HIV." Without hesitation he said, "They wouldn't let their kids come over to play anymore." And I agreed.

We don't know yet how or if we will ever tell our daughter about her daddy....or that she is a PrEP Baby. It just feels like there is so much at stake if we're honest with her, and so much at stake if we're not. Will we lose the All-American weekends with neighbors? Will Macey stop being invited to play with the other kids?

I hope one day the answer of whether to tell her or not, will come to us, just drop into our laps out of thin air the way the Miracle of Her came to us. One day the miracle wasn't possible, and the next day...it was. Maybe that's how it'll be.

Low Points

I love all of you that reach out to me asking for help and support on the issue of being a person whose life is affected by HIV. I thank you for trusting me with your stories and the personal details of your life.  Your secrets are safe with me ;)

Lately I've felt the urge to speak with you all in person. I want to hear your voices, and let you know that there is a live human being somewhere on this planet who is going through life facing the same challenges, asking the same questions, dreaming the same dreams, wondering the same thoughts, and needing the same help as you. And so, I was speaking to a woman who reached out to me tonight.

In my conversation with my new friend, we spoke about miracles. And I got to thinking about the many miracles that were part of my own journey. And I realized that I am at a place of seeing my past differently. And I began feeling thankful for the ups AND downs of my journey because all of it is a miracle.

My soul has bullet holes of low points. Very Low.

Void of hope Low.   No way out Low.   Center of the earth Low.   Nothing left to give Low.

And now I see those low points as sparks that ignited into miracles. What a miracle it was that I found TheBody.com in 2000, when there was nothing on the internet about HIV/AIDS, and the idea of having a family was validated! What a miracle it was that I kept searching for ways to start a family, after so many doors were slammed in my face. I experienced the miracle of letting go of dreams I didn't even know I had until I realized I couldn't have them. I found the miracle of support in friends and medical professionals at HIVE who fought for my dream when I couldn't fight anymore. I was given the miracle of modern day medicine and conceived a little bundle of miracle that grew so beautifully and peacefully in my belly for 40 weeks.

I could go on and on, but I say all this to encourage you. There will be disappointments on your journey. And there will be low points. But in my experience, life's detours often dead end into miracles. And sometimes you can't see them in the moment, but just on the other side of those tears and lost dreams...the miracles are there. Trust me. They are there.

Life's Regrets

I've been doing a lot of thinking lately about our situation, and starting to come to terms with the possibility that we may not have another child. Despite our efforts, its just not happening.

My daughter is three, and I feel like I've failed her by not giving her a sibling. I want her to grow up with someone to play with, someone to feel connected to, and someone to share her childhood story with. But its probably not going to happen. I'm so sad about it.

She is a miracle, and I am so grateful for her. She is enough. I don't need another child for my sake, but feel we need it for her sake. I've been asking a lot of friends of mine who are only children how they felt about it, and most admit there was always a deep loneliness and longing for companionship as children. I want to protect my daughter from every feeling lonely, or longing for something, but I just can't give this to her. And I can't find it in myself to be OK about it.

I just keep thinking that we should have tried to have children sooner, when we were younger. It would have given us more time to try for another child. And then, part of me feels like for us...one child is really all we can handle. Being a parent is hard. Giving of yourself to a child is hard, and in all honesty, I'm not sure its something I could do well for a second child.

I wish things had turned out differently, but its hard to accept. I'm sure there will come a time when I can look back on this and see the good in having just one child. And I am going to give her everything I can to provide her with an emotionally fulfilled, well-rounded childhood...but I can't be everything to her. And I will fail her. And I need to come to a place of being ok with that...for her sake. My life's regrets are not her burden to bear

Its like we just missed the "sweet spot" with PrEP and all the strides on HIV and reproduction. If we could have been 5 years younger....even 3 years would have made a big difference. But it was not to be I guess. Stupid HIV.

Tiny Explosion of Panic

I ovulated last week and we had condom-less sex in hopes of conceiving. We've done this before, but this time it was different.

This time, I wasn't on PrEP!

It has taken us years to get to this point, and we both felt very comfortable with this decision. The last time I thought I could go through with condom-less sex, it ended up that I couldn't. As I mentioned before, I am starting to trust the science about how low my risk is because he has an undetectable viral load.

Of course, I gotta be honest, there have been a few times when the thought crossed my mind..."What if I got HIV from him?" Its weird when that happens. It feels like a tiny explosion of panic. Like when you're driving somewhere and you realize you forgot something important back at home. And you gasp, and you don't exhale for a while. And for that moment that you can't breathe...you come to terms with it. You either decide to go back for what you forgot, or you keep driving and decide to do without. So, when the panic hits me. I just push the thought away.  Its probably not the healthiest way to cope with the anxiety, but I know it will pass so I just push the mental "Next Track" button in my mind.

There has been enough negative energy given to the subject and stigma of HIV in my life. For now...for today, I don't want to give it anymore negative energy. So, I just dismiss it. I may feel different tomorrow.

For now, I trust the science, and that's enough for me.

Seeking Individuals!

The Midwest HIV Prevention and Pregnancy Planning Initiative is  seeking folks who are HIV-positive or negative, of reproductive age, and racially and ethnically diverse to illustrate effective conversations, on film, between medical providers and patients about pregnancy desires. 

Scenarios will include:

• Woman living with HIV who expresses ambivalence about having a baby
• Woman living with HIV who wants contraception
• HIV-negative woman with HIV-positive male partner who don’t want a baby
• HIV-negative woman with HIV-positive male partner in a safer conception visit 
• Straight man living with HIV being screened in HIV primary care setting for his reproductive desires
  
  

Know someone who would be a good for one of these videos? Please email Pamela Tassin at PTassin@aidschicago.org with recommendations or for more information.  Volunteers will receive a $50 Amazon gift card as a thank you for their time. Filming will take place on January 21 in Chicago. 

Thanks!

I think I trust the Science now

Well, our move to Chicago hasn't been as smooth as I thought it would be. I underestimated the difficulty of the transition, but neither of us regret it...its just been harder than we thought.

My hubby has found a clinic to receive HIV related care...its an hour away.  The doctors run about an hour late on their appointments, and it takes all day to get back home with traffic, but its the best in the area so we're doing what needs to be done to make sure he gets to his appointments. He remains undetectable and in excellent health, and I thank my lucky stars for that.

His psoriasis is worse than ever, and his doctor is working with him on a self-injection to treat it. It will suppress his immune system to use the injection, but his psoriasis is so severe that it needs severe treatment. I don't know if others out there find that psoriasis is an unwanted side effect of the HIV meds, but it has been a thorn in my husband's side since he was on Combiver and Viramune. Has only gotten worse over the years.

We haven't attempted to have unprotected timed intercourse to conceive since we've been here in Chicagoland, but we are talking about trying again since things are feeling a tiny bit settled. I have the worst baby fever ever...all day long I look around at all the babies and I swear its like a part of me...something deep deep down inside is screaming, and clawing and scratching to get out. Its choking me. Its relentless and its painful. Its such a weird phenomenon.

I am not taking Truvada (PrEP) anymore. I haven't been to a doctor yet. There is a PrEP clinic here, where my husband receives care, but guess what? Because he is undetectable, and has been for many years, I'm not considered at high risk of contracting HIV, and therefore not eligible to get on PrEP! I know I could really insist, especially if I pushed on wanting to use it for conception, but I don't think I feel that strongly about it anymore.

I think I trust the science now. I think I have let go of some of that fear that was instilled in those of us who lived through the early years of HIV and AIDS. I think.

Last time I thought I could try to conceive without PrEP, and have unprotected sex, I actually couldn't go through with it. But this time, I think I can. I'll keep you updated.  In the meantime, here's a picture of us enjoying the lovely cold and snowy weather!

Lots of Changes

My husband and I have made the difficult decision to move across the country from San Francisco to Chicago. We feel it will be best for our daughter to be near other family members, and I look forward to having my family's support around me. We are scared, but confident this is the right decision for us.

We are concerned about my husband maintaing some type of healthcare. He can't miss doses of his medication, but we will have a lapse in insurance coverage so I think we'll find ourselves in the position many people find themselves in...needing access to healthcare at a reasonable cost.

We are also concerned about encountering ignorance and prejudice due to our HIV affected family dynamic. I don't think we'll tell many about my husband's condition, but I can foresee inwardly cringing when people make inappropriate comments about HIV, such as this sign on a condom dispensing machine in Chicago.

I mean, first of all, no one transmits AIDS...its HIV which progresses to become AIDS if left untreated. And, no, the best method of AIDS prevention is not abstinence before marriage nor is it a monogamous relationship during marriage. This is such a patronizing and ignorant statement.

My mom and dad are thrilled that we'll be closer to them, but I worry about how uneducated they are about things related to HIV and treatment. My husband has psoriasis, and I can see them thinking that his irritated skin patches are the beginnings of Kaposi's Sarcoma. I know they will say things, with ignorant sincerity, that will be hurtful. And I want to react with love, compassion, wisdom, and grace...for my daughter's sake. I hope I'm up to this task of bringing their 1980's AIDS mentality into this age of treatment as prevention, and educating them about all the medical advances and knowledge that is available to us today.

In the meantime, I'll be ovulating next week, so who knows....maybe I'll get pregnant!

Lots of changes coming our way, I'm grateful for all of you who wish us well, and have been part of this journey.