Tuesday, October 21, 2014

Security of PrEP

Well, when it came down to it...I couldn't do it.  I couldn't have unprotected sex to try to conceive, without PrEP. My husband was always a bit apprehensive about it, but I insisted that I felt comfortable and confident that my risk was practically non-existent. (I still think my risk is practically non-existent, but that's different from entirely non-existent)

For those who don't know what PrEP is, it is a new HIV prevention strategy for HIV negative individuals, who are exposed to HIV, that reduces their risk of becoming infected. It consists of taking an anti-HIV medication called Truvada, once a day before coming into purposeful or accidental contact with HIV.

We had discussed it, and made the decision to try to get pregnant without using PrEP this month.  I began tracking my cycle using an ovulation monitor.  Things were progressing as planned and I began daydreaming about how I'd react to a positive pregnancy test. Thinking about how I'd tell my husband, how we'd tell our family and friends, what a sweet big sister our daughter would be, etc. But the first morning that showed an increase in hormones that trigger ovulation, I was struck with the teeniest amount of fear. Suddenly that almost non-existent risk seemed significant. And for the next two mornings, that fear grew. On the morning the monitor showed I'd be ovulating, I knew in my gut that I couldn't go through with it.

I realized I need to have the security of PrEP as a safeguard in our efforts to conceive.

For me, the smallest, teeniest and most nominal amount of risk was monumental. It felt like stepping over a crack on the sidewalk and jumping over the Grand Canyon at the same time....either way, there was no way I was going to cross over.

I started to pressure myself, knowing that I'd have to make the decision THAT day or else wait another month to try to conceive. I thought about all the data, research, studies, etc. that shows low risk.  In the end, I thought about the moment I'd be looking at a positive pregnancy test again...and I decided that I only want to feel joy and elation.  I don't want even the smallest, teeniest amount of uncertainty because it would cloud over the moment for me. And I've fought too hard and too long to such a moment be anything but joyful elation.

Sunday, October 5, 2014

To PrEP or not to PrEP?

Still debating whether we should use PrEP for Baby #2.  Husband says yes, I say maybe not. He has been undetectable for over 10 years (with a slight blip here and there), and I'm not sure I want to expose the baby or myself to the potent medication that is PrEP...

3 years ago I wouldn't even have thought there would be a choice between taking PrEP or not, but the more I research and learn about an undetectable viral load, the more I'm learning that the risks to me are minimal.  But are they minimal enough for me to have condom-less sex in hopes of conceiving?

My parents freaked out when they learned that I used PrEP to get pregnant the first time, they felt the risk I took was careless and the decision wreckless, but they finally came around once they believed I remained negative and the baby was healthy and growing normally with no defects. (Yes, my parents sometimes think that I'm lying about my negative status and that long ago I may have contracted HIV from my husband...my mom demanded to see my HIV negative blood test before she could celebrate having her first grandchild...but hey, I give people room to react remember?)

I have to admit, even though I found a doctor to prescribe me PrEP before, I am a bit nervous about bringing it up with a new doctor--given my first experience.  Read about it here. The last doctor who did prescribe it to me, was an HIV specialist.  This meant I had to go to an HIV clinic every month for a check in and bloodwork....not very fun (but good for me to confront my own stigma around HIV). Its just not an ideal place for an HIV negative female to receive primary care...in fact, the internal paperwork they used to order my monthly blood work didn't have a code to order an HIV test.  Why would it?  Its an HIV clinic...where people who are HIV positve receive specialized care. But still, there I was, month after month, telling the lab professional that, YES, I was there to get an HIV test among other things, NO, you're not reading that wrong. 

If all goes well, I'll be ovulating next week...maybe we'll try without the PrEP...maybe not. 

Wednesday, September 17, 2014

Is HIV Beautiful?

I first heard my husband talk about his HIV status in passing to a mutual friend. That's how I found out he was positive.  Long before we dated, long before we were even friends...barely just acquaintances, and he was so open with disclosing his status.  I found out last week that prior to telling my parents about his status, he was quite open about it with everyone he came in contact with...and then when my parents found out, he completely shut down.  He stopped telling people, and started living under a blanket of shame from that point on, to this very day today--going on 12 years now.  Amazing how a small moment in time can be so defining for a person.  Equally amazing, how such a tiny cellular thing can cause such a reaction in people.

I want to see this tiny cellular thing. I want to see HIS HIV with my very own two eyes. I want to see what it is that requires him to take these powerful medications, and causes him to feel ashamed sometimes. I want to see what I'm protecting myself against when we use a condom to have sex. I want to know--what does it look like?  How does it move? Does it have a color? Shape? Is it ugly? Is it beautiful?

Its so microscopic and yet so big between us that I feel this sense of wanting to see it, to understand it.

I've done a lot of research about it.  I've talked about it. Cried about it. Worried about it. Written about it. Lived with it...and now I need to see it for myself.

Saturday, September 13, 2014

Nanny Fears

We hired a nanny this week to care for our little one while husband and I work...our schedules no longer allow for one of us to be with her every day at home.

As we were prepping for the nanny to start this week, we cleaned the house and put away some personal items such as mail, bills, etc.  As we were cleaning, it occurred to me that maybe we should hide my husband's HIV meds (they are in an area near the kitchen counter), just in case the nanny sees them, googles them, and freaks out!

His "meds area" looks like a small pharmacy.  He takes the HIV meds, but also arthritis meds, psoriasis meds, headache meds, fish oil capsules, vitamins, and general pain meds. There are many more than what is visible in this photo...

I left it up to my husband to decide whether he's comfortable with his meds out in the open like this....he didn't remove them or hide them.  I'm proud of him, but am still struggling myself...fearing that if she googles the names of these meds, she's going to stop being our nanny.  I know that if she does quit on us for this reason, we're better off without her, but its just the realities of our situation. People treat you differently when they know you're HIV+...its unfortunate, but true. 

It took us months to find this nanny. She's great with our little one, she cooks, cleans, and drives! We are comfortable leaving our daughter with her. We've known her for almost 15 years, but she doesn't know his status.  I guess she will now!

Tuesday, September 9, 2014

All-American Truvada Family

My husband and I are thinking about having another baby.  So,  I will need to find a doctor to prescribe me Truvada. But this has got me thinking....do I want to start PrEP indefinitely regardless of if we're trying to get pregnant?

I don't know. I keep going back and forth between Me on Truvada, and Me Without Truvada.

Me on Truvada: I think I'd feel uneasy about using Truvada alone for HIV prevention purposes. And I'm not sure how my husband would feel about it....probably more uneasy than me. We have both felt very safe and secure using condoms...and we've been very responsible to use condoms since Day One.

Me on Truvada: The thought of not having to use condoms....how amazing that would be! There have been times we weren't able to have sex because we were out of condoms, or couldn't afford condoms. They aren't cheap you know. (I know we can get them for free but I usually don't feel like asking, and I don't get to pick my favorite models and brands--and there's usually someone holding out a basket watching me pick through the pile...its just not ideal) But thinking of the new level of intimacy...without a condom between us is so tantalizing. We could just be "in the moment," have sex with more spontaneity and romance...I know they say you can make applying a condom part of the foreplay but who are we kidding, applying a condom takes away from the moment.

Me on Truvada: What joy to think about a surprise positive pregnancy test, 9 months of preparing for baby (and hoping for a boy this time), labor and delivery...another little baby. So sweet and such another little miracle.  With both of us on Truvada (my husband currently takes it as part of his regimen), and two babies conceived using Truvada...we'd be the All-American Truvada Family!

Me Without Truvada.  Condom use is much safer for me in terms of medical side effects and additional toxins in my system.

Me Without Truvada: We wouldn't have to get his lab work done monthly...not an easy thing to schedule with a full-time job and toddler, and not an easy thing to pay for either.

For now I think I'll just try to find a doctor that will prescribe it for me and go from there....we don't have to decide right now.  Stay tuned!

Monday, September 1, 2014

What's Most Important

After a few posts of processing things that were making me angry and bitter, I decided today will be a day that I come back to what's most important.  My husband and my little girl, and how having a little family was all made possible by many people who are fighting a fight who do not get enough recognition, pats on the back, gratitude, publicity, or understanding.

I am just amazed by all the people who fought and paved the way for me to take Truvada (PrEP) and get pregnant...Shannon Weber, BAPAC's Dr. Cohan, all the doctors that I'll never meet, who made it their life's work to learn about and treat HIV and more importantly, who keep working to find a cure for HIV. The HIV advocates who bring HIV awareness to the forefront when we all start to forget.  The journalists, like Heather Boerner, who found enough interest in this subject that it inspired her to write a book and many articles about HIV and PrEP (Positively Negative...Read it!)

These people were fighting for ME. They had my face and my name on their mind when they felt discouraged and defeated...they kept pushing and challenging the status quo, fighting...so that I could hold my baby in my arms.

And then there's my husband.  For 14 years he let me fervently chase down my dreams, went to the many doctor appointments with me, rejoiced with me when a door opened, and mourned with me when that door shut.

It is his voice in my ear, telling me to keep pushing, encouraging me as I labored, and crying so sweetly when our baby was laid on my chest...it is his voice that was the loudest and for that I am most grateful.  He really is the love of my life.  He is my heart and soul.  He is everything.

Saturday, August 30, 2014

Time to Heal

Flashback to August 14, 2012 where I'm in the bathroom looking at a positive pregnancy test, and surprised by the first emotions that are welling up inside of me. Not joy. Not elation.  Not excitement. But BITTERNESS. SADNESS. REGRET. A sense of deep regret that it took 14 years to end up where the journey first started...with the idea of taking a pill to reduce risk associated with exposure to HIV. I felt (and still feel) that the medical community failed us. And said failure was caused to some extent by the stigma of HIV and by people being scared to put themselves in my situation and do so without their own expectations or ideas being projected onto us.

When I began seeking information about how we were going to have a baby of our own...I did not think it was going to take 14 years until we had the answer.  In that first meeting with my boyfriend's (now husband) doctor, she told me to research something called "sperm washing" as the only way to safely conceive a baby of our very own. I recall asking her if I we could try unprotected sex to conceive, and then have her prescribe the medications that medical professionals take after an exposure to HIV (It is called Post Exposure Prophylaxis or PEP).  She told me she didn't think she could prescribe it to me because the exposure had to be accidental in nature....and it was usually only prescribed to the medical or law enforcement community, in case they were accidentally exposed to HIV as an outcome of working in their fields.

I recall thinking that if I could advocate for people in my situation to have access to PEP, it would be a good place to start...and it seemed hopeful and logical that it could be available to the general public someday.

I am eternally grateful for all those who helped us have a baby...but can't help but feel sad...deep deep sadness that it took so long, so many doors closed in our face...and so much suffering to end up where we started.  With me in a doctor's office, asking about a pill that could be taken in the event of exposure to HIV.  Why did it have to take 14 years?  14 years!  Over a decade!

I've been reading and re-reading the book Positively Negative by Heather Boerner, and find that it has caused me to think and re-think about some of the aspects of my journey.  I also find that I've been getting emotional and crying because I realize the struggle is finally over.

It is finally over.

No more brainstorming about how I could get my insurance company to pay for sperm washing, or how I could get the CDC to hurry their timeline in developing guidelines for IUI with HIV washed sperm, or how I could get $30,000 to afford 2 rounds of IVF.  No more wondering who I could talk to, which websites to visit for more information. No more looking for a support group or forum with other women and families in our same situation. No more aching and feeling actual physical pain from the lack of holding a baby in my arms.

No, the journey is over.  The seeking is over. That chapter has been written.  The trauma of feeling that deep yearning, with no solution in sight is all in the past.  I have to heal now. And I guess that's what the crying is about.  Time to stop warrior-ing, time to stop fighting.

Time to close my eyes, smell my daughter's sweet sticky cheeks, smile....and heal.

Saturday, August 16, 2014

"Permission to be Female Please"

I'm going to apologize now for this post...it is a rant. It is me venting and processing...it is the reason I started this blog. To share my journey of venting and processing. So....
A few weeks back, I was part of a TwitterChat, and @HeatherBoerner asked me if I considered Pregnancy and PrEP (Pre-Exposure Prophylaxis) to be a feminist issue. I was quick to respond that No, I didn't see it that way...for me it was a personal issue.

Well you know what...I changed my mind.  It IS a feminist issue. And the more I think about it, the more angry and offended I become.

When I think back on this journey of trying to get pregnant, my lowest point was the day my primary care doctor told me she would not prescribe Truvada for me, because it was an "unethical" thing for her to do, nor would she continue to treat me as her patient if I engaged in such "risky" behavior. I now understand part of why that was my lowest point...being shut out because I am a woman.  I knew my anger had to do with the injustice of it all, but I thought the injustice was because I was at the mercy of a system that requires one to have a lot of money to conceive in a way they perceived as "safe."  I thought it was a human issue, an elitist issue, an insurance issue, a medical issue.

But it was a feminist issue.  I was not being prescribed Truvada because of the fact that I was using it to try to conceive.  I was being judged for my sexual choices, my maternal calling, for my own decisions about my own body. That's a bunch of bullshit.

How different things would have been had I told that doctor I was just trying to stay negative. She probably would have prescribed it because she would have agreed with that logic.  Or, what if I told her I had sex with my husband and the condom broke...she probably would have prescribed it, because it would have been "unethical" for her NOT to give me Truvada.  What the hell?! Here I am trying to be open and honest, trying to lower my risks, asking for help to stay negative, asking for help to get pregnant...pretty much asking for permission to be female...and the door is slammed in my face! So rather than lowering my risks...she increased them...How "UNETHICAL" is that?

I am beginning to think that honesty may not always be the best policy when it comes to my choice of marrying my husband, and having a baby with him.  People have asked the weirdest and most personal questions...as if they have a right to ask about my sex life just because I've shared with them that my HIV+ husband and I had a baby. And I've let them.  I've answered those weird and personal questions because I didn't want them to feel awkward with a response of "That's personal" or "How is that relevant?"  And isn't that the feminist issue...giving away our power, or having that power stolen, and as females, always fighting for our equality?  How does being a woman determine how I can feel about something...how you can feel about me...or how you can treat me?

Ugh.  I could go on about this, but you get the picture right?

I am not a human-sized uterus. I am a human sized HUMAN.

Sunday, August 10, 2014

The Story of Her

When I opened my very first bottle of Truvada, the first thing I noticed was a small cylinder container of silica beads. (Put there to keep the Truvada moisture free) I didn't know what to do with it, but I felt an urge to save it for some reason, so I decided to set it on the edge of a shelf in my hallway closet.  I was certain I would get pregnant immediately, so I didn't think much more about those silica containers in my closet.  Of course, as the months wore on, and I opened more and more bottles of Truvada, I ended up with quite a collection of those little containers. When I ran out of room on the edge of that shelf, I put the little silica containers in a decorative box that was covered with shiny bronze fabric and metallic rivets. I saved every single one of those silica containers from every single bottle of Truvada that I ever used. I realized I was saving them to show to my future child, a visual aid of sorts, for telling our little one the story of how badly we wanted them to come to us that we spent years and years chasing information, chasing options, chasing doctors...chasing our dream.

When I found out I was pregnant, the silica container from my last bottle of Truvada was already in that box, and I didn't give it another thought until just a few nights ago. I was with a group of people, talking about the book, Positively Negative and the memory of those containers came to mind.  I looked for that box in my closet today. It took some digging around, but I found it. Here it is!

I opened it up to find 17 of those little silica bead containers. I took them out, counted each one. Studied each one as I slowly spun it with my fingers.  Shook them next to my ear, listened to the tiny beads shake around in their cylinder cases. And suddenly, all kinds of memories flashed in my mind, like a slideshow...different scenes and different moments of the journey.

Funny thing is, there were other things inside that box.  A scentless Lavender satchel envelope, an old pair of my husband's sunglasses, and 3 disposable cameras.  Kind of ironic, that box is full of old, irrelevant, and expired items.  

Are those little silica beads irrelevant now?  In theory, yes.  But they serve as proof of our journey, proof of what my mind remembers. Sometimes it feels like a story to me, not moments lived...just words that portray the sorrows, the longings, the unquenchable desires. The moments of promise...of grace...of elation, all sprinkled throughout the story. They are all that's left of the long journey.  I'm so glad I saved them!

Here's my daughter playing with them. She loved to shake them, and listened to the sound close up to her ear. She doesn't know it yet, but those little containers contain the story of her. 

Wednesday, August 6, 2014

Pictures of Us

9 months pregnant!
I've continued to think about the stigma of HIV...and have decided that I'm going to post a few photos of myself, my husband, and our daughter.  I am still struggling to share my real name with you all...but give it time.  I'll get there. I imagine when I do, it won't be a big deal and I'll have worried for nothing, but its where I'm at right now. 
Hope you enjoy!
Our first glimpse!
Family Photo...she is 13 days old here!

Saturday, July 26, 2014

Minus the Stigma

Lately, I've been thinking a lot about the stigma of HIV.  Specifically, my battle with it.  I really admire people who are open with their status, to me it appears so effortless how they own their truth.  I wonder if the more confidence a person has about a decision they've made (HIV related or otherwise), the less room there is for shame and stigma. I experienced this kind of confidence when we decided to be honest with people about how we got pregnant. I was so proud and so ferociously protective of the life growing in me, that it didn't matter what anyone thought about our decisions. And I feel that same way even today...I really don't care what people think about the decisions and risks we took to conceive. You'd be amazed at the sort of emails I get from this blog...people who are really upset with my decisions, people who tell me I was/still am careless, reckless, selfish, sinful, etc.  It doesn't phase me because before this life was my reality, I would have thought the same thing.
Its not really courageous or brave of me to be "thick skinned" with the awful emails I get. Anyone can be brave when they're anonymous. But ever since Heather Boerner's book Positively Negative was released, I've been wrestling with this issue of stigma.  And its been good.  To be honest, for the past decade or so, in my pursuit of conception, I have not thought about this critical issue. Now that I have a child, and since there are so many women and families in this same position, I just can't take the luxury of pushing it off anymore.

So...not sure where to really start making sense of it.  Probably should see a therapist about it. Probably should talk to my husband about it. Funny how its so simple...and so complicated.

From the very first post on this blog, I have found the process of sharing my struggles with you to be helpful to my own journey.  Just to get my thoughts out there has been liberating and refreshing. I know that my perspective is not always politically correct, or medically correct, but I know that I am always striving for a deeper understanding of all things HIV, especially as it relates to my own life.

So...about that stigma...whats at the root of it? I know the root is Shame for my husband...but is it Shame for me too?  Probably. Shame with a little fear of the assumptions others will have about my husband and I.  Shame with a little fear of rejection that comes from people's ignorance and judgement.

Guess it all boils down to Shame with a little bit of fear what others will think of me.  (But really...who doesn't fear what others will think of them?)  And what would it look like for me to let go of this HIV stigma? Maybe it would mean you'd know my real name, and know what I look like. Maybe it would mean nothing would be different...

I hope I figure this out.  I don't want to be battling with this when my daughter comes to an age of understanding prejudice and intolerance. I want her to know her parents as people who took charge of their own life's narrative, instead of others narrating for them.

I want her to live the truth, her family's truth, her own truth...minus the stigma.

Friday, July 18, 2014

Positively Negative...READ IT!

I am so excited to announce and introduce you to an amazing new book, just released today!  It is called Positively Negative: Love, Pregnancy, and Science's Surprising Victory Over HIV.

Heather Boerner, the book's author contacted me way back when, to ask if we'd be willing to tell her our story...how we met, fell in love, journey to conception, pregnancy, and finally a baby.  It was the first time I had told the story to anyone from start to finish.  It brought up many memories and emotions, but mostly it brought up a deep sense of satisfaction.  Satisfaction that I believed in this love, believed in the hope for a baby of our own, and believed in people like Heather-who continued the fight when I could not and carried the message when my strength wavered.

As I read the book today, I re-lived the journey...this time with my darling baby girl toddling around, finding entertainment with a cardboard box and her favorite doll in the red dress...

And when she pressed her baby soft and honey sweet cheek to mine, and looked into my eyes with her long eyelashes fluttering so...I wept.  I wept because Heather captured the emotions of the journey so beautifully in her book, and so graciously described our little Pom-Pom, and so eloquently intertwined human emotions and storytelling with medical facts and scientific jargon.

I feared admitting to you all that we're one of the couples featured in the book because some of the details take away from my anonymous-ness...but I feel okay about that.  I'm grateful that Heather allowed us to tell our story anonymously. Its a real sacrifice to the integrity of a story when three of the main characters are faceless and nameless, but she never pushed and never judged.  And...I find strength in that. Strength to let you all in a little bit more.

To keep this conversation going join the Twitter Chat Book Launch Party on July 19th at 1:30 PST.  I'll be tweeting along with you all...just follow #HIVLoveWins.

Also, next weekend on CNN, Sanjay Gupta features the Hartmanns, the other couple in the book!  Will let you know more details as I get them.

Sunday, June 22, 2014

Room to React...again and again

If you've read through this blog, you'll notice I say something over and over....you have to allow people room to react.  I learned this after my husband and I told my family about his HIV status when essentially a bomb went off in our entire family that didn't heal until my daughter was born.

I came across this quote today from author Pema Chodron (from her book When Things Fall Apart), "We think that the point is to pass the test or overcome the problem, but the truth is that things don't really get solved. They come together and they fall apart.  Then they come together again and fall apart again. Its just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy"

A few weeks ago, my husband and I took our daughter for a visit to see my parents. We have all come a long way from the days when they wouldn't speak to me because of my choice to marry my husband. Both my parents have come a long way in letting go of their fears and expectations, and have truly come to accept and love my husband as part of the family.  I have been very happy with their progress, and thought they had really come around.  My best friend from high school just had a baby, so my husband and I were going to visit the newest little bundle. And then my dad made a remarkably offensive comment.  He said "Do you think your friend will feel comfortable having your husband hold her new baby?"  I was completely taken aback...and said "Yes dad, she's fine with it, she invited us both over to see the baby." My father replied "But maybe she's not comfortable saying that he shouldn't hold the baby...you know....just in case the baby could catch it." 

I was stunned.  I was frustrated, I was angry.  Here I thought they made all this progress with their fears and ignorance, and then all at once, we take 5 years worth of steps back.  I replied, "Haven't you learned by now that you can't 'catch' HIV like that? Why don't you educate yourself before making such an ignorant comment?"

My heart broke all over again and honestly, I felt like packing all our stuff and storming out of their home for another 5 years, and vowing to never let them see my daughter again unless they were ready to fully accept our circumstance and stop being so ignorant.   

It took a couple hours but I cooled off.  I had to remind myself..."give him room to react, give yourself room to react, remember we all need room to react." Eventually I let it go.  It allowed me to understand exactly what Perma Chodron means when she writes:

"...the truth is that things don't really get solved.  They come together and they fall apart. Then they come together again and fall apart again...the healing comes from letting there be room for all this to happen...."

This has been my life's greatest lesson. I hope you will allow room in your life for this lesson as well. 

Saturday, June 21, 2014

Still Processing

A while back, I spoke with a person who was writing a story about our journey to conceive. She asked about the medication I was taking, Truvada, and in talking with her I realized that I had not processed the fact that I was taking an HIV medication during our attempts to conceive. When I first heard about the possibility of taking Truvada as a way to reduce the risk of transmission of HIV during unprotected planned intercourse, I asked my primary doctor to prescribe it to me.  My doctor not only refused to prescribe the medication, saying it would be unethical for her to do so, but she also told me she'd refuse to see me as a patient if I was going to engage in such risky behavior.

Needless to say, I found another doctor who was willing to prescribe me Truvada.  The only thing was this new doctor was a doctor at the HIV clinic where my husband was a patient.  It was an unconventional approach...but I was willing to do whatever it took to conceive a child.  

So...now to the "processing" part. 

I'll be honest here...it was not a comfortable feeling for me to go to an HIV clinic for my primary health care needs.  It was like trying to fit a square peg into a round hole.  The advantage was  the doctors at this clinic were very mindful and supportive of our desire to reduce risk of transmission, but since they were specialists in treating HIV patients, I didn't get the comprehensive health care that I really needed. But it was the only place I could be prescribed Truvada within my insurance network so there I was... monthly visits and blood tests at an HIV clinic.  It made me face my own prejudice and notions about HIV.  I felt ashamed.  I felt humiliated.  I realized that everyone in this clinic, thought I was HIV+. The receptionist, the patients in the waiting room, the medical assistants, the nurses, the custodial staff, the lab workers....I felt angry that in this modern age of medicine, this was how it had to be done. But the real reason for my anger was my shame.  

I thought I had processed it all...thought I had come to accept my husband was HIV+, but it became clear that I had not.  I finally understood why my husband battles so much with shame, and social anxiety, and self-hatred.  It is because he lives in a world where having HIV is still judged, still shamed, and still feared.  And...he joins his voice to the rest of those that spew judgement and hatred...in fact, his voice may be the loudest of all.  And I am ashamed to admit, and still processing how to rid myself of the judgement and fear that I thought I had overcome.  I know now that it is different when you are a patient.  It is different when you are the one living with HIV.  

I also know that I rose above my own shame, and I faced what I thought was judgement from others...because I knew it was temporary.  I knew I was not HIV+, and once I became pregnant I would not have to go back to the clinic. While it took resolve for me to check in and sit in the waiting room of an HIV clinic, it was not brave or courageous. No, the brave and courageous ones are those who live life every day with HIV...who boldly face shame, and fear, and rejection each day.

Sunday, February 9, 2014

Lavishing Love

My own family has long struggled with accepting my husband's HIV status. When we first announced we were getting married, there was a huge blow-up...nasty words were spoken, bitter tears were shed, and many years without contact were spent. None of my family members attended our wedding.  I came to understand very quickly, as I've said in this blog before, that you have to allow people room to react. And you have to let go of your own expectations of how people should react or behave when you make the decision to disclose something personal. This realization saved me from staying bitter and resentful toward my family.  I understood they were reacting from a place of fear and lack of knowledge.

I spent many years pursuing them...rebuilding our relationships.  We could not engage in healthy discussions, so for 5 years, we stopped speaking.  It was a good decision on all our parts...giving each other room.  (We lived 2,000 miles apart so that helped us give each other room too) I mailed cards on holidays and mailed gifts on birthdays.  And after a couple years, I'd leave voicemails on holidays and birthdays...they never picked up when I called.  Once we hit our 5 year anniversary, they suddenly understood that my relationship with my husband was not- negotiable. They realized they could not control my choices and decisions.  My sister came for a short visit from out of town.  Then we flew to them for Christmas...and slowly but surely, we began rebuilding our family dynamics.  We would never be the same, none of us.  We spent the 5 years apart, and now - suddenly - we were back to being a family, but we were all different people.

Through all those years, everyone would tell me, "Wait until you have children.  They will come around." And they certainly have come around. Big Time.

It is amazing what this new child has done for our family.  With her chubby cheeks, and wispy hair, she has rebuilt us all.  She has brought us to a place far better than any of us could have dreamed of or imagined...our family unit has been made whole.  They lavish their love upon her, and upon us too. And it feels like we never missed out on those 5 years.  Don't know which is the greater miracle, her birth or our family's healing.