Killingmesoftly-One woman's quest to survive infertility: September 2019

Tuesday, September 24, 2019

Still on the bench

I was never an athletic child. More of the nerdy braniac in fact. I'm also a child of the 80's, which means I grew up in a time before everyone got a ribbon at soccer tournaments and before their was a collective national concern for our self-esteems. So I have distinct and somewhat painful memories of middle school gym class. Maybe some of you who are old enough remember it. Two teams are created and team captains elected. Then everyone stands in the middle of the room, and the captains pick who they want on their team. Harmless enough in theory. Unless you're one of the last people picked. I remember the feeling of panic as the desirable athletes were invited to join each team and the crowd got smaller and smaller. I remember the shame of feeling unworthy to be chosen, of be unwanted, of being left behind.

Fast forward 30 years, and although so much distance has been put between myself and those days, that feeling of being "different", "defective", "unworthy" has resurfaced as a result of this fertility journey. Each and every time someone announces a pregnancy, I am brought back to that place, to middle school gym class. I am twelve again, awkward and hopeful, waiting to be picked, trying not to show everyone how much I want it, scared that I will never be chosen.

Pregnancy announcements are always tough for me, and each one stirs up different emotions. When a dear friend announces a first or second pregnancy, I am filled with joy for them but it is a joy intertwined with envy, disappointment, panic, and grief. Visions of being pregnant with them, of being on maternity leave together, and of celebrating our children's milestones together fade away. The joy I feel for their miracle stands in sharp contrast to the pain being left behind on the journey. If it is someone who has multiple children already I find myself resentful of their good fortune, and then of course, embarrassed by that resentment. Seeing how effortless getting pregnant seems to be for them when it it clearly out of reach for me taps into my feelings of being defective. If it is a friend who has been struggling with infertility it is the easiest for me to celebrate. I understand the trauma they have been through and I rejoice with them. It also hits me the hardest, because it's lonely on Infertility Island, and it's hard to lose the people standing there by your side. They still love and support me of course, but it's different. Their focus shifts to their babies as it should, and I am left shouldering the burden of chronic infertility on my own.

So, how do I handle this so that I can feel gracious, joyful, and present around my pregnant friends and coworkers? By honoring and respecting where I'm at, and by giving myself the grace and space I need. I am working on acceptance- of myself, my situation, and my emotions- and I have been using affirmations to help myself with this. I say things like, "I accept and respect all of my emotions", "I accept the space I need to heal", and "I accept myself completely in every moment." That may mean that I need to give myself permission to cry, to take Facebook holidays, to miss a baby shower, or to skip out of baby focused conversations in the hallways. I take my time to process my feelings and lick my wounds so that when I am around pregnant women, I can give them the best of me.

I am still on the bench, and it's not easy, so I just let myself feel the muddy mix of happiness, pain, gratitude, and longing. That complexity, that depth of feeling, that capacity for love in the face of pain- that's what makes us human, and that is the richness of spirit we will impart on our children.

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My story

Killing me softly. When I think about my secondary infertility journey, I think of the thousand tiny deaths my heart has endured on this path. The silent wounds I bled from just under the surface of my public face. Never enough to knock me over in one day, but rather a quiet, stealthy wave, building loss by loss, until some days, I am swept away by feelings of grief, fear, unworthiness, and hopelessness. Killing me softly.

My heart feels drawn to writing this blog as part of my journey, and I hope that some entries of this blog will uplift and inspire you. But I am in the thick of this, and many days this blog will just be an invitation for you to cry alongside of me. I can’t promise anything from this blog, other than that it will be real, raw, unfiltered. Come and be real with me, and let’s give our pain a voice and find hope together.

PART 1:

My journey began three years ago just after my wedding at age 39. I was so excited to start my family, but I knew my age might be a factor, so I went to a fertility specialist right away, just to get checked out and maybe get a few tips for faster conception.. Instead of the green light I thought I would get though, they told me that I had very few follicles left, and had diminished ovarian reserve. The likelihood that I would have my own baby was poor they explained in their sterile room in their clinical tone, and they sent me out the door with adoption information and instructions to set up an appointment for an IUI if I was determined to try with my own eggs. I cried all the way home and for the next two months until we started treatment. I was absolutely devastated, but IUI was free there, so we went ahead with it one week shy of my 40th birthday. My son is 2 ½ now, and proof that miracles happen.

PART 2:

I love kids. Seriously adore them. I started as a camp counselor in junior high, and was babysitting regularly from the time i was twelve. Children always followed me like the Pied Piper, and were drawn to me in most every setting. I was the cool aunt, the fun friend when my friends started having children. I pursued a career in education, in order to surround myself with the joy and wonder of children and have loved every minute of it. On a personal level, I always knew that I wanted a house full of the energy, chaos, and joy that several children bring. My heart yearned for it on a soul level.

So in November, five months after my baby was born I went back to the fertility clinic to prepare for another IUI. The first one had gone off without a hitch, so I figured we were just a couple who needed a tiny push to get the ball rolling. We were supposed to begin treatment on the first day of my period, but that day never came, and I discovered in January that I had become pregnant naturally. A dream! I was so excited. I started planning the nursery (woodland animals- adorable!). I picked out the cute baby onesie for my son where we would announce on Facebook that his tenure as only child was ending. When we heard the heartbeat at our first ultrasound, I finally told my coworkers and friends and I started planning a joint maternity leave with a friend who was due a few weeks after me. But at the next ultrasound those plans came to a grinding halt and the doctor tried without success to find the heartbeat. Just like that, my little one was gone. I had a D&C. I didn’t order the onesie. I avoided the questions from my coworkers about how the pregnancy was going. I grieved deeply and privately. But I knew that miscarriages happen, and I was resolved to try again when my period returned. In May when my body was finally ready I called the doctor, and they said we could try an IUI again in June when my period came. But it never came, and in early July a beta confirmed I was pregnant naturally a second time. But my beta didn’t double on schedule, and at 5 weeks I miscarried that baby. I cried more tears than I knew I had, alone in my room. My husband is a loving man, but without having heard a heartbeat, the baby wasn’t real to him the way it was to me.

The only way I could think to escape my pain was to jump down the rabbit hole of infertility treatments, so we upped our game and headed to an IVF clinic. We would make embryos and pick the healthy ones to transfer! We would beat biology! We would have our baby! But one year and three retrievals later we were unable to produce even one viable embryo. Our final hope, our treatment of last resort, had failed. My heart had risen and fallen with each new cycle, each new batch of eggs, each new possibility of life, and hope and baby fingers and toes. The rigor of medication protocols, restrictive diets, yoga, acupuncture, and endless appointments had left me broken, distanced from friends, consumed by a singular focus and shrouded by a lingering aura of sadness. IVF was expensive, but my health insurance offered two more free rounds of IUI, so we decided to exhaust that before considering our next options. We decided to start the next cycle when my period came, but… it never came. I was naturally pregnant for a third time, this time at 42. Because less than 1% of women have three or more miscarriages I was overjoyed. I had already had two miscarriages, so this pregnancy would be the one that would stick! Our unexpected miracle. Our rainbow after the storm. I would take a newborn picture of her surrounded by IVF needles. I would show her how wanted she was. I would be an inspiration for older moms wanting to conceive! My original beta was strong, and even though my numbers weren’t doubling, they were on track. The doctor’s office congratulated me! It was happening! Until… it wasn’t. My beta plateaued, and the doctor told me to wait for the miscarriage. I was nine weeks pregnant when I lost my third baby and absolutely broken.

PART 3:

Balanced Translocation. Otherwise known as BT. A previously unfamiliar term for me, that would now define my reproductive future. It meant that some of my chromosomes had swapped places and that I didn’t have complete chromosomes like everyone else. I had all the right genetic stuff, just in the wrong places. This was the diagnosis given to me as part of my recurrent miscarriage workup. It meant that giving the right amount of chromosomes to a fetus would be difficult and unlikely. Multiple miscarriages were the norm, and even though many women with BT eventually go on to have a healthy baby at some point, the BT combined with the age of my eggs meant that my chances were incredibly slim. The words of the genetic counselor rang in my ears. I tried to be funny and cool about it. Inside I was falling apart. My marriage was strained, my friendships had become distant, my hobbies, dreams, and goals had been set aside- all collateral damage of the dream I had been chasing, which now seemed improbable.

So I jumped into support groups. I joined a sisterhood of amazing women, but a sisterhood that I never wanted to be a part of. I grieved the loss of a pregnancy with my own eggs, but I was determined to be enlightened and open to all possibilities. I dove into the world of donor eggs and donor embryos and started to lose myself in the online world of third party reproduction- Frozen, fresh, local, international- website after website, email after email. I scrolled through profiles of beautiful, fertile twenty somethings. I read countless posts from donors, donor recipients, and donor egg children . I researched books to read to my little one to explain how he/she came to be. I fell deeper and deeper into the world of infertility and I rarely came up for breath. It gave me some sense of control as my world was spinning out of control. It kept me company, so I didn’t have to be alone with grief.

So that's where I am now. Unsure of what comes next. I’m committed to having another child, and to giving my son a sibling, but it turns out I’m not ready to let go of the hope of using my own eggs yet. IVF isn't a viable option for a woman my age with diminished ovarian reserve and BT, so I have a few more IUIs planned, and the websites for donor egg banks bookmarked in my browser. My journey has been long and hard, and it isn’t over yet, but know the path I am walking is filled with women just like me and I hope that we can build an invisible but strong web of support. I’m honored to be walking next to all of you, and hope to get to know you and connect with your stories and experiences along the way.