A little over a year ago, I did something I really wasn’t sure I would ever be possible for me. As a child with cystic fibrosis, my parents worked hard to give me “normal” life expectations – they encouraged me to talk about my career aspirations, to plan for college, to dream about the future, and to fight like heck against anyone who tried to tell me I “couldn’t” achieve my goals. But even with this supportive and empowering atmosphere, I couldn’t help but have a few personal reservations. At the age of 7, I remember sneaking into the ballroom during a CF fundraiser (my friends and I were supposed to be playing in another room) and overhearing the life expectancy for someone with my disease as somewhere in the mid-to-late teens. A few years later, at 11, I found a copy of Frank DeFord’s masterful memoir Alex: The Life of a Child and I knew that his daughter had died of my disease. Once, in elementary school, a classmate walked up to me and asked, without malice, whether I was going to die soon. Of course my answer was a defiant and emphatic “no!” but the seed had been planted. And with every exciting milestone I always wondered, however quietly to myself, how many more I would live to see.
Which is only part of the reason I was so deeply grateful to walk down that aisle and marry my husband in 2014.
The thrill of being able to celebrate “normal” life achievements when you have cystic fibrosis just never seems to get old. Whether it’s a graduation, a job interview, an anniversary, or even just another birthday, these moments are, I think, doubly special for those of us who have had to fight extra hard to reach them. When my husband said his “I do” so loudly that the entire church let out a collective chuckle, we shared a tiny secret smile because we know exactly what “in sickness and in health” really means. So far together we’ve shared a struggle with chronic rejection, a challenging second double-lung transplant, the loss of friends in the CF community, and the unending struggle to stay healthy with a chronically suppressed immune system. And yet, here we are, three years since we met and one since we made it official, ready to face the next set of milestones together.
Which brings me to the real point of this post.
Recently, we decided that we wanted to begin the process of potentially starting a family. For most couples, of course, this decision is a big one: it means planning and adjusting as you prepare to grow your family by one (or more!) people. My husband and I are blessed with no fewer than twelve fabulous nieces and nephews, so we’ve watched this process with love and excitement several times over. But the addition of cystic fibrosis and lung transplant has added a number of additional twists and turns to our journey, and it seems fitting to share just a few of them here.
Our first major decision was how to actually go about the process. We knew we would need help and advice from a number of people – most of them doctors – before we could move forward, and so our first concern was gathering support for our decision. We spoke to our parents and confidants first, because we knew it would be important for us to have support, both emotional and physical every step of the way. For me, this also meant speaking to some of my most trusted CF friends who have started families of their own to get their input. What challenges have they faced and how have they overcome them? What questions should I be asking of myself, my partner, or my doctors? What insights could they share about being a parent with cystic fibrosis? From there, we moved on to speaking with our respective healthcare professionals – primarily my CF and transplant teams, but also a reproductive specialty clinic that we were referred to by my CF team. Through this we learned about various options available to us and got “nuts and bolts” answers to our logistical questions (How long will the process likely take? What medications are safe for me to use? Is my husband a CF carrier? What about surrogacy? Adoption? Egg donation?). In the end, we were able to look at all the test results and helpful information and make what we hope will prove an informed and reasonable approach for us that allows us to safely meet our goal of becoming parents and remaining as healthy as possible.
At the same time, we made a commitment to ourselves to stay as open and flexible as possible during this new phase of our relationship. We know from experience that cystic fibrosis is anything but predictable, and anyone who has ever tried for a child can probably agree that family planning isn’t much better. We have had to accept on some level that we cannot completely control every single aspect of this experience, as much as we might like to claim otherwise. We cannot control the results of my husband’s carrier screen, or the fact that my body will forever be compromised by immunosuppression. We can’t argue our way out of the fact that this is a slow and sometimes painful process, or that some of our best-laid plains may go awry and need to be reformulated to fit our current situation. We can’t make our child get here any faster, and perhaps even scarier is the fact that we can’t guarantee what our lives will look like after he/she comes. Both of us are long-term planners, and it’s been tough for us (okay, okay, it’s been super tough for me) to know that sometimes, it seems, letting go is an essential part of making things work.
Through it all though, what is most important to me, is trust. That is the lesson I am learning every single day, not just in my marriage and in my battle with cystic fibrosis, but in my everyday life as well. Knowing I can trust that my husband is there for me through every single moment of our lives together, in sickness and in health; that my doctors and nurses are there to be partners in my health and in reaching the next set of milestones, whatever they might be; that my family and friends will continue to stand with me; that people are constantly fighting with us to make life with this disease longer, easier, and more fulfilling; that I have 34 years worth of experience with making smart decisions (and some not-so-smart mistakes) and achieving my goals – these are things that sustain me. And so I continue to dream, to plan, to adjust, to re-plan, and hopefully, to become everything I never dreamed was even possible.