Let the Light (And Reasons to Hope) In

The revolving door of doctors, nurses, a pharmacist, a geneticist, and a passionate and overly eager social worker flood the tiny room on floor two of Lutheran General's Children's Hospital. What was once overwhelming and exhausting has become routine. Some of our visitors gown up and poke their heads into the room to remind us that they're on our team, and others, like the aforementioned social worker, linger. While she evaluates our emotional well-being as the parents of a toddler with CF, Josh and I can barely contain our laughter. As a communications coach, I am impressed by her listening skills, attention to detail, and ability to mirror our language. Upon her exit, we typically erupt in muffled laughter as the paper-thin doors do not guard against our chortles. Still, we appreciate her so much as it is so apparent that she genuinely cares deeply about her patients and their families. During her visits, we are extremely aware of what she is attempting to evaluate with her leading questions and the distracting toys she brings in for "Jordan" to play with, and even still, we both have immense respect for and appreciate her role in the CF clinic. After approximately two hours of a constant rotation of specialists, we meet with our primary doctor, the fast-talking, incredibly positive and intelligent doctor who continues to shed light on Jordan's disease. The infectious optimism and encouragement from the entire staff, led by our doctor, has made a once arduous and painful experience more uplifting.

This most recent clinic visit gave us much cause to celebrate because Jordan's lung function is perfect (for now). He's even a little chunky - as if he's preparing for hibernation or a major growth spirt. Except for a bowel obstruction at the end of March, which was more of a learning experience for Josh and me than anything else, he continues to thrive. The more engrossed I become in the CF community, the more aware I am that there is no way to predict his progression. CF is a unique disease for each patient, and we have countless reasons to hope that he will be a healthy child as long as we continue to diligently follow his treatment protocol and adhere to his dietary needs (lots of salt, lots of fat, and a daily dose of Miralax in Gatorade, or as we affectionately call it - Jordan Juice). A barrage of emails has flooded my inbox this spring with information about breakthrough treatments and medicines that dramatically increase lung functionality and quality of life for our CF friends. Again, there is a reason to hope.

These past few months, Josh and I have learned to allow others to love on us. As kids, Josh and I found ourselves cleaning up after practice, working on projects for our musical director, or cleaning out file cabinets in the choir room; we actively sought ways to quietly serve our peers, mentors, and teachers. As teens and even into our 20s, we pursued serving a new community that focused on empowering young people to find their voices. Saving no time for ourselves, we evaded coping with the infertility problems we faced because we chose to expend our energy on others. With a little grit, we could brighten any situation placed before us, which often involved helping a teen through a life-problem or challenge. Both of our ENFJ personalities still actively seek opportunities to heroically swoop in to solve the problems of others, leaving us little time or interest in addressing our own needs. Not the healthiest life practice, but we're working on it. Having children, especially a child with unique needs, has greatly humbled us as we now recognize that sometimes we need an extra hand to walk dogs or watch the girls while we are attending to Jordan's needs. Sometimes we need to find a sympathetic or supportive ear to hear our concerns or just find a person to give us a hug on tougher days.

Our annual CF walk was this past weekend, and I am proud to say we raised over $11,500 for AJ, for Jordan, and for all of the CF community as we continue to actively look for treatments and an eventual cure for this disease. The level of gratitude that Josh and I both feel to our biological families, friends, speech squad, church, and students who all supported through literally walking with us at this event, raising or donating money to the cause, or simply giving us extra hugs when we needed it cannot be expressed in words. Through this event and our adventures into the CF community, we have learned to express our vulnerability more openly and now realize that allowing others to help us is an integral part of being in community. Helping others fosters feelings of hope.

I must admit that for Jordan's first year (and even a few months after that) of his life, I was guarded. My instinct is to smile, show more enthusiasm, and will myself into believing that "everything's fine." At home, I've held Jordan until my arms ache; I've inadvertently shielded him from interaction with people and places where germs might unknowingly hide. But as he continues to grow, I recognize that he is no longer Baby Jordan. And as a result, I am slowly learning to allow him the space that he needs to grow into the well-rounded person that he is meant to become. Patience, sharing, and kindness are all behaviors we expected the girls to begin to implement at his age; he should not be exempt from those behaviors. It's time to level-up, Stink Man.

On the brink of a word explosion, Jordan, just as any small child, needs to find his voice and learn to be the author of his own story. In spite of my attempts to empower him to exhibit his independence, I will continue to douse him in hand sanitizer. My aggressive scrubbing of the wood floors he crawls around on and my mysophobia may continue to manifest into more erratic behavior, but cleanliness is a virtue, right?

Still, life was designed to be messy. Messiness adds color to our lives and can lead to a greater appreciation for the world in which we live and for the people who comprise our village. In author Margaret Wheatly's book Turning to One Another: Simple Conversations to Restore Hope to the Future, the idea of having a village or a community is addressed. She states, "Relationships are all there is. Everything in the universe only exists because it is in relationship to everything else. Nothing exists in isolation. We have to stop pretending we are individuals that can go it alone." In this new era of my life, I have stopped attempting to "go it alone" and started processing my joys and my pain with the people in my village as they are the ones that continue to fuel my hope.

Even in the most challenging times, there is always a reason to hope. Our village or community is meant to provide us with that sense of hope, and our relationships are the lights placed on our path to illuminate the way in any season, at any time. What I've learned from these past few months is that it is okay to have hope, and it is okay to let the light in.