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. 

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.

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.

Self-Love

Now that we're nearly 4 months into life with a baby, I am noticing my husband has a particular way he interacts with our daughter that I think is related to his HIV status.  It just breaks my heart to see, but the shame he feels is manifesting in a way that prevents him from fully enjoying life with his new daughter.

Just simple things like a reluctance to touch her, kiss her, or even breath on her.  I hope he can work through his shame and fear because as she grows older, she will interpret his reluctance as rejection.

It all comes down to his lack of acceptance about his status.   He is so afraid to face it and accept it because it would mean having to face the bad choices that caused him to contract HIV.  He is ashamed of his choices, and ashamed of his status, and until he can forgive himself, he will continue to feel that way.

I wish he could know...truly know...how much I love him.  I wish he could know how his smile, his smell, his touch is a source of happiness and contentment for me.  I wish he could love himself as much as I love him.  And I wish he would love himself as much as his daughter will love him.  Children pick up on our vibrations....she will know that he doesn't love himself, and in turn, will struggle with her own issues of self-love.

I can only hope that with her every smile and giggle he comes one step closer to accepting and loving himself, and teach her to do the same.

Baby Girl!

Our beautiful healthy baby girl was born in April 2013.  She is beyond what my wildest imagination could have conjured...far beyond.

The labor and delivery went quickly with no complications.  It was a beautiful day.

The greatest miracle of all is how my family has reacted to her.  For all the years of heartache, years of rejecting my marriage and maintaining their distance, it turns out that my parents are incredible grandparents.

 I can't tell you all how much I appreciate your support and encouragement.  I read all of your emails and comments, and feel honored that you would tell me intimate and personal details about your own relationships with HIV+ spouses/partners.  It was a scary journey with many ups and downs, but my heart led me to this point, and I am filled with deep gratitude.

And so the journey to conceive a child has ended.....and the new adventure of parenthood begins.

More to think about...

(Sorry its been so long since my last posting....ever since finding out I am pregnant, it seems I'm too tired or too busy to do much extracurricular stuff. Anyway, I am currently 32 weeks pregnant and all is well so far.  I continue to test negative for HIV, and feel confident that I will remain negative.)

I've been wanting to write about my feelings on having a baby with a man that is HIV+.  I realize that when his doctor told me he would have a "normal lifespan," I found comfort in that statement.  I didn't think beyond it though.  But suddenly I find myself wondering what does that really mean?  A normal lifespan?

Will he be alive for 10, 20, 30 more years?  Will he be healthy for those years or will he be dealing with complications from HIV?  Will he see our child graduate high school, go to college, get married?  I know there are no clear answers, and much of it depends on how well he takes care of himself, but I want/need more solid answers than that.

And, how will this impact our child?  Will they be bullied or teased because of it?  Will their friends be allowed to play and have sleepovers at our house, or will parents feel uneasy about my husband's HIV status?  Will they even know about his status?  Will our child announce his status to the class, teacher, friends, etc not really understanding the stigma that is attached?  How and when will we explain this all to our little one?

We spent years pursuing a pregnancy and I am so grateful to be pregnant, but am realizing that there are still a lot of feelings, thoughts, and questions that I didn't know I had to work through.   Am realizing that I didn't think far beyond the moment when I'd see the pregnancy test turn positive. There is now a whole other life to consider when we make our decisions regarding disclosure, medication regiments, and health.  And at times, my husband and I are not on the same page about those decisions, and that complicates things.

I don't know if I'll ever find the answers l I need, or if I truly need those answers.... For now, we relish every day of this pregnancy.  We marvel at the wonder of life created.  And we soak up the genuine and deep love we have for each other and for our little one.

It's finally happened...WE'RE PREGNANT!

Well friends, after many years of trying...we have finally succeeded!  I found out earlier this week that I am pregnant!  It has been a journey of valleys....and now finally the mountaintop.

Since my husband is HIV+ and I am negative, we have been considering our options for pregnancy for over a decade now.  We finally decided that our best option was to have planned unprotected intercourse during the times I was ovulating.  I am lucky to have a team of doctors and specialists who were supportive and encouraging, and after many discussions, consultations, and lots of research I was fortunate to have a doctor that prescribed me Truvada, an HIV medication that can be prescribed to HIV negative people who are at high-risk of infection.  Truvada was just recently approved by the FDA to be used for Pre-Exposure Prophlaxis (PrEP).  (Read more about that here)

We've been announcing it to friends and once again, I am reminded that I must give people room to react, and not take their reactions personally.  Everyone we have shared the exciting news with has immediately asked..."How did you guys do that?!" before congratulating or celebrating with us...and it is something we expected people to do.  In fact, we made the decision early on to simply say "We worked very closely with a great team of doctors and specialists to make it happen and we are thrilled that we were successful, " and leave it at that.  But somehow, when the question was asked, and the moment came to say the line we had practiced so many times....we just couldn't do it.  I don't know how to explain it...we just both felt that the little miracle baby inside of me deserved our complete confidence and honesty.  So, even though we didn't plan it that way, we just simply said, "We got pregnant naturally, and we worked very closely with a great team of doctors and specialists to make it happen and we are thrilled that we were successful, and we feel confident that both mom and baby are healthy as can be."

We were both surprised by our impromptu decision to be upfront and honest with people after years of planning to be ambiguous, but somehow, its what is right for us and for the new little miracle baby.  We found that the confidence in our response set the tone for people's reactions....we simply stated the truth and something about our tone let people know that the issue wasn't up for debate or questioning, and that our expectation was that they be excited for us. 

It is a great lesson for me...we have explored every option in our attempts to get pregnant, and now that we have been successful, there is no reason to feel less than confident, nothing to apologize for, and no reason to go into details about how it happened because the most exciting part is that we were successful! 

I could tell that our parents wanted more details, but initially, we simply didn't "go there."  However, I talked to my mom a couple days later and had an in-depth conversation about our decision.  She was definitely uneasy with the fact that I risked exposure to myself, and she told me that until I am officially pronounced "negative" she cannot enjoy or celebrate the news.  I am totally fine with that.  As I've learned, people need room to react.  It is a lot to take in and accept.  (If you knew my mom you'd know its WAAAAYY out of her comfort zone to be calm about something like this...she didn't talk to me for 5 years after I told her that my husband was HIV positive, but that's a topic for another day)

I told her that I could certainly understand her hesitancy to be excited given the circumstances, but if she didn't feel she could celebrate our miracle, we would continue the celebration and she could join us whenever she felt she could.  The fact is, I know she is trying to manipulate me into engaging with her on "How could you have been so careless" and "What if this" "What if that" but I know how the  journey went for me.  I don't need to provide answers to anyone about any part of this journey.  I just want to surround my little miracle baby with love, comfort, peace, and goodness.  If someone wants to bring a negative attitude or energy to this, I feel a responsibility to protect myself and little one against those negative vibes and I make no apologies about that.  We have too much to do before April 18th when the little miracle baby is expected to arrive to worry about whether people approve of our decisions.

Now, about those baby names......