A Lonely Combination

I’ve talked before about how the loss of a child can be an incredibly isolating experience. As I sit here today, I realize that I had no idea what isolation really felt like. When we lost Vivienne, I felt like no one could possibly understand how that felt. And then I found support groups and other loss Moms who did – they made me feel understood and less alone. But as we’ve battled miscarriages, infertility, tubal issues, Asherman’s, and surgeries, the circle of people who truly understand gets smaller and smaller. The group of women who understand what it’s like to fight so hard to get that living child, when all of your children are dead, is impossibly tiny. I can count on 1 hand the number of women I know who deal with this, and I only know one of them in real life (not just on the internet).

It’s an incredibly lonely and isolating combination to have the one-two punch of loss and infertility. We defy every cliché that people like to use in the loss of a child (“you can have another one” “at least you know you can get pregnant” “everything will work out” “at least you have your other children”). Every child is a miracle, there is no question about that. But when you suffer with infertility and find yourself pregnant, it is a miracle of miracles. To have that miracle taken from you is soul-crushing. To live not knowing if you will get another chance at that miracle is beyond words.

Working through my latest hurdle and coming out of my latest surgery has made me feel like the worst possible 1 in a million. I had multiple doctors in my pre-op appointment, my surgery, and my follow up. Doctors and medical students who wanted to learn about my case, because it’s not very common. The doctor treating my Asherman’s has treated 4 other cases this year. He’s the chair of the OB/GYN department at my hospital network, the lead dog, and the one with the most experience. I was his 5^th case over the course of the entire year. In medical terms, it makes me unusual. To me, I just feel like some freak of nature.

I am fortunate to have many friends and family who genuinely try to understand my circumstances, which I so appreciate. But I learned in dealing with losing Vivienne that there is no substitute for talking with people who understand because they have lived it. Try as hard as I can to understand and empathize, I cannot truly know what it’s like to walk in another person’s shoes. But these loss Moms had walked in my shoes, and they made me feel understood and part of a community. And lately, because of all of the other battles that infertility and Asherman’s brings, I feel less connected to that community. The community of people who understand the combination of infertility and loss is very, very small.

I don’t know what the coming months will bring for us. To say that I hope that we can join the community of rainbow parents is an understatement (hope just isn’t strong enough, and there isn’t a word that is). I know that we have lots of people walking behind us, cheering us on, supporting us, and hoping that same hope. But as we continue on our journey, it feels very much like the path not traveled. There are very few guides who understand the landscape or the route. Gordon and I are on our own here. And while it helps to know that we have each other, I’m finding that I really miss having a room (be it chat or real) full of women who nod their heads at me in agreement because they have been there and they understand.

How Many Hurdles?

Yesterday, I had surgery. Another hurdle to jump over in our journey to have another child. As I sit here recovering, I can’t help but think about how much more difficult this journey has been than I ever expected. And how confused I am at how it happens so easily for other people, and we just keep getting new hurdles thrown in our path.

I can’t lie – I’m running out of steam. I’m not quitting by any measure, because my ultimate goal is still to have a living child. But I really don’t know how many more hurdles I can jump. I’m just tired.

Yesterday’s surgery was to remove scar tissue from my uterus. I went into the day thinking it was just another thing to check off the list, we’d get through it, and we’d move on. But it’s been more physically and emotionally painful than I’d prepared for.

The physical pain and discomfort is caused by a balloon filled with saline that now fills my uterus. It causes some pretty serious cramping and makes any other position but lying down uncomfortable. I have a tube hanging between my legs that connects to this balloon, which weirds me out in ways that I cannot explain. I will have this until Tuesday and will be on medication for a month. At the end of the month, my doctor defines a successful surgery as me having a “horrendous period.” That’s how good news goes in my world.

The emotional pain was something I hadn’t really prepared for. As I lay in a hospital bed yesterday waiting as people got me ready for surgery, I looked up to heaven and pleaded with God that this be it. That this is the last of the hurdles before getting a chance to try again. I feel, in some respect, that I’m asking God for an easy way out. But let’s be honest, nothing about what I’ve gone through has been easy. And I don’t even have an easy path forward – it will still be IVF that gives me the greatest chance for a living child. At some point, I just want someone, maybe God, to acknowledge that I’ve been through enough. I’ve certainly been through more than most people I know in getting to this point. So when is enough enough?

My biggest reassurance yesterday came in a sign from my daughter. Just before I was taken in for surgery, the nurse led me to a bathroom down the hall. I had to walk through another patient room to get there and hanging on the wall was a painting I could not have imagined in my wildest dreams. It was a large painting of a rainbow with the words “Somewhere Over the Rainbow” around it. Surely, a sign from Vivienne that she was with me through all of this, sending me a rainbow the only way she could inside of a hospital. Nothing that any doctor could have said to me could have reassured me more than seeing that painting.

And so now we soldier on, trying our best to hold on to the hope that this really is the last hurdle, and keeping firmly focused on our goal. It has been more difficult to get to this point than I ever could have thought. I’m so very tired, and my reserves are low. But, I’m not giving up. All I can ask is that please God, let this be the last hurdle. I’ve given it my best fight, and I don't know how much fight I have left.

Accepting Infertility

I’ve been pretty hard on myself lately for where I am in this grief journey. Still harboring feelings of resentment, anger, bitterness, and jealousy – all things I feel like I should be past by now. More recently, I’m trying to cut myself some slack on these feelings because I’m realizing they aren’t just about my grief journey. They are about my grief and infertility journey.

What I’m recognizing is that I haven’t really accepted this “dealing with infertility” part of my life. While I’ve been seeing a Reproductive Endocrinologist (aka Fertility Specialist) for nearly 2 years now, I never really thought of myself as having infertility. I think it’s mostly because it had been easier for me to get pregnant than most women I know with infertility. We needed a little nudge, and that seemed to be enough. Each of our pregnancies, all 4, have been achieved with clomid and IUI (intrauterine insemination). Each time, we got pregnant on the 1^st try. Our infertility issues were minor by comparison to others, so I never really accepted the full diagnosis. Now, as we find new issue after new issue, I have to accept that I have more significant infertility issues than we thought.

It started last October, when we received a diagnosis of Asherman’s Syndrome. Asherman’s is scarring and adhesions in the uterus which can happen after a trauma to the uterus, like a D&C (I had 2 after Vivienne’s birth due to retained placenta). When we got our diagnosis, we dove into the research and found that it can be tricky to treat and there are about 6 doctors in the country who specialize in it. We flew to Boston to see one of them, a renowned doctor for Asherman’s who people fly from all over the world to see. He told us that we were mis-diagnosed and happily sent us on our way. We thought we had received a miracle, and so this idea of “infertility” was pushed further back into my head.

And then came our subsequent 3 pregnancies. Baby 2 in January, a chemical pregnancy which I miscarried 2 days after finding out I was pregnant. Baby 3 in February, an ectopic pregnancy which I received chemotherapy drugs to force a miscarriage so that it wouldn’t endanger my life. And Baby 4 in July, another ectopic pregnancy which required surgery to resolve. This led us to our new diagnosis of “tubal issues” and IVF (in vitro fertilization) as our option for having a successful pregnancy. It takes skill to hear “IVF” and still believe you don’t have significant infertility issues. I am that skilled. In my mind, I could rationalize that we just needed an extra push to put the baby right where it needed to be, and we’d be fine.

Then came our cancelled IVF cycle. The cycle was cancelled for several reasons, but our RE was concerned with my lining and thought he saw scar tissue on my ultrasound. So, off we went for yet another test to find out what we’re dealing with.

And then came our re-diagnosis of Asherman’s Syndrome. It turns out you can do all of the research, find the right doctor who specializes in what you need, and it still doesn’t matter. So here we are a year later, facing the same issue we faced a year ago because of a supposed specialist not doing his job. We are both incredibly angry with this doctor for what he’s put us through over the last year. At the same time, though, we have to deal with the medical issue we are faced with. It will mean another surgery for me, and some heavy duty monitoring to make sure the scar tissue doesn’t come back. And we’ll still have our tubal issues to deal with and IVF as our next step.

And so after all of that, I have to acknowledge that I have infertility. And after all of that, I have to accept that resentment, anger, bitterness, and jealousy are perfectly normal emotions to feel. Having to deal with losing my daughter feels like enough for 1 lifetime. Losing 4 children feels like enough for 4 lifetimes. But I get the dubious honor of dealing with that PLUS the difficult path of infertility. And so I’m going to stop kicking myself for having these feelings. After what we’ve been through, I’d call them pretty acceptable and even normal.