The Rest of the Story: Children and Chronic Illness

In some ways, I’ve been drafting and revising this post in my head and heart for almost four years.

I first touched on chronic illness and infertility in August of 2006, with this post on numbers, statistics, and hope. Since then, we’ve talked about can versus should, the tough decisions potential parents with chronic illness face, and other universal aspects of having a family. But the behind-the-scenes story? That was never fodder for this blog.

It’s been 44 months since we first started trying to have a family. That’s three years, eight months. Not as long as some, I know, but too long. About eighty percent of our marriage, in fact. Forty-four months later, I see this long journey as characterized by moments of awareness, a series of changes in thoughts and assumptions that challenged our perspectives.

There were moments of realization:

Along the way, I fell completely in love with other people’s children, and realized emotionally what I knew intellectually: unconditional love does not adhere to boundaries of biology or relationship. Parenthood does not depend on pregnancy, something I knew but didn’t really know until I knew. With that, we both realized that no matter which path we took to build our family, we would do the right thing for us and it would be our first choice, not a fallback plan.

I’ve realized no matter how hard we try and how much they really do care, there are people who will not understand, who cannot give us what we need or speak the words we are desperate to hear. I’ve realized that this is okay. I’ve learned to let go.

Similarly, no matter how many consults and additional opinions we’ve sought, no matter how meticulous and deliberate we have been about our decisions, there will be people who judge. And while hard, that too is okay. I’ve realized that doing right by each other and our potential child is all that matters—with that realization comes some freedom.

There were moments of isolation:

Not surprisingly, my ongoing fascination with language spills over into this journey. If you take the adoption route you become fluent in terms like open adoption, or the semantics of birth parents, first parents, adoptive parents, etc. If you look into surrogacy, you’re flooded with euphemisms: at our hospital, the preferred term is “gestational carrier,” and the recommended agencies have all sorts of feel-good names. If you pursue assisted reproduction you start speaking in code: IUI, IVF, 8dp3dt, BFN, BFP, PIO.

But either way, you no longer speak the same language as most of the people around you. You speak the language of “if,” when so many others take for granted the “when.” And some days, surrounded by the “when’s,” the easy talk of when pregnancy will happen and the carefree assumptions about when siblings will arrive, is a lonely place to be.

In another twist of language, I learned that putting the words “very early” in front of “miscarriage” does not mean it is not sad. I wondered if anyone could see the shadows of that loss when I wrote about disappointment. Private sadness is indeed isolating, however necessary it is.

Of course, there were darker moments:

I remember one particular day last spring. It was the first bright, sunny day that thawed winter’s slush, and after a terrible doctor’s appointment it was the first day we truly felt, however fleeting, there was little hope. What good were all these options people kept talking about, I kept talking about, if none of them seemed attainable?

“You know the hardest part of all this? Waking up and going through the day and acting normal when it feels like the world is crashing down,” I said to my husband. For many weeks, when I woke up and realized the situation had not changed, I felt I was in a living nightmare. I hated people to hear or see me cry, so I simply didn’t talk to many people.

Another sunny spring day we all waited in a hospital waiting room, anxious for the arrival of a much-loved baby. I kept jumping up to take cell phone calls in the hallway, re-scheduling consults and high-risk assessments. I was angry, not because I was being told I might never carry children while hanging out in the maternity ward, but because even on this happy day when I wanted to be fully present in the joy, infertility was literally stalking me. It had already taken so much.

We made a cocoon for ourselves so we could filter out the white noise and weigh what we wanted versus what is most fair to a child. Anytime you bring the “can versus should” element into a conversation about children, the responsibility inherent in that is staggering. We take that responsibility more seriously than anything else in our lives.

In these moments, I, we, have learned sadness and grief, frustration and disappointment. But we’ve learned much more. As hard as it was to hide what weighed us down, it is even harder to hide good news, joyful news, especially when it has been such a long time coming and has exacted such a toll.

And so I am pleased to share what is truly a moment of joy: This fall, we are expecting a baby.

It still feels strange to type those words. Despite the many ultrasounds, the many doctor appointments, the talk of showers and strollers, sometimes it is hard to believe this is happening, this thing that happens for other people.

I am incredibly grateful and excited. When I first found out I cried so hard my poor husband thought I had yet more disappointing news for him and instantly went into consolation mode. I simply did not have the words to explain happy tears.

We have pictures proudly displayed on our fridge and multiple teams of doctors monitoring every breath, doctors who never forgot to say “congratulations” amidst all the precautions and variables. What a beautiful word.

We kept this news to ourselves for a long time. It’s high-risk. I’ve already been hospitalized. We’ve lived through loss. I have jobs and policies and details I needed in place. We are fiercely protective of this little one. But at 16 weeks I am getting comfortable telling people, and I love sharing news that is actually good.

And through this all, there were (and still are) moments of relativity:

Infertility was merely the starting point. Infertility with a guaranteed high-risk pregnancy and chronic illness? It’s a tough combination to contemplate, but everything is relative. We have to focus on the tough road ahead of us, and I know we can do it.

Baby showers and pregnancy announcements never bothered me, and seeing babies always brought me joy instead of reminding me what I did not have. I pretended I was immune to a lot of the emotional fallout from infertility, that I was focused solely on risk analysis and decision-trees. Not true.

Now that I am pregnant, I feel the aftershocks of infertility. I see the many bits and pieces it chipped away, and the bits and pieces the high-risk nature threatens. The first time I checked out the maternity section of a clothing store, I couldn’t relax. I was in a cold sweat; I felt like a trespasser. Now that I’m closer to needing new clothes, it’s getting a little more real, a little easier.

After 44 months of this, my gut response to the topic of so-called “push presents” is, isn’t the baby the gift? My mother asked me recently if I had a preference for a boy or girl. “Alive,” I told her. All I want is a baby as close to full term as possible and for both of us to come home from the hospital and be okay. That is the gift. That is everything.

Lastly, there have been moments of growth:

We often sit at night in my husband’s office, soon to be the nursery. He uses the desktop computer, and I sit on the bed with my laptop. We talk about paint colors, and even well into the first trimester I would stop, mid-conversation.

“Are we allowed to talk like this, to plan a nursery?” I ask.

“You are pregnant. We are having a baby. It is okay,” he reassures me.

So I exhale and smile and think about meeting this little person whose waving arms and bent legs on the screen make my husband smile from his eyes and put all the oxygen I need back in the room as if by magic. And I allow myself.

And when I get overwhelmed by the realities of this high-risk pregnancy, when I worry that everything I am doing to keep us both healthy will not be enough, I think of this baby squirming around, a baby who is thriving. This is the only type of pregnancy I will ever know, and I embrace it fully. I allow myself.

I am proud of us, proud that we came through this journey intact, a better team than we started. We always told ourselves that somehow we would be parents. Only a few months into dating, we knew this was what we wanted for each other and with each other. We had no way of knowing just how long a journey this would be or how it would end, but we wouldn’t change any of it.

So I am working on a new lexicon, one centered on “when.” We talk about the baby’s library or imagine walking him or her to school up the street and talk about the kind of parents we want to be, and it is no longer strictly hypothetical. We imagine new moments, new possibilities, and we are buoyed by the one word that started this whole conversation 44 months ago, the one word that is important than ever: hope.