By Laura Spiegel / Originally written in September 2016

Do you ever have days where you wake up, muscles taught, poised for action?  Days where the alarm clock is like a match that ignites your mind into motion?  Or, conversely, nights where the minute your head hits the pillow, a parade of worries begins to march by, one by one by one…

I sometimes liken myself to a professional worrier.  You practice something long enough over and over, and you’re bound to perfect it.  Other euphemisms can be substituted for the word “worrier”.  Type A.  Control freak.  Perfectionist.  All perfectly fine descriptors, but none that pack a punch as powerful as that simple word.  Worrier.

As a mom to two wonderful kiddos – one who is three and has cystic fibrosis – there are definite upsides to the art of worrying.  At any given point in time, I know exactly how many enzymes my daughter has eaten to help her digest her food and how many are remaining until she hits her max daily dose.   I know where the Purell, Wet Ones, or any other bacteria-zapping miracle is located so that she can have clean hands before she eats.  I am proactive as heck and arm myself and my husband with a list of prioritized questions for her physician at each clinic visit.  So yes, I am aware that there are many positives that come out of my rather intense focus on my daughter’s health.

I am also acutely aware of the dangers associated with worrying.  Obsessiveness.  Anxiety.  A casual courting of fear.  As an example, there was a point in time where I did not want to bring my daughter to church.  Why?  Because, as I sat in the pew each Sunday even after cold-and-flu season had technically ended, I could count no more than two seconds between the coughs of those around me.  Two seconds!  It was like a symphony of coughers, and if I focused on it for too long, I could start to feel like I was under siege.  Oh, these poor folks, who probably had nothing more than allergies, or at worst, a common cold.  They knew not what they did as they conspired to work me up into the most aggravated of tizzies each Sunday.  My daughter would have to hold hands with these people!  Give them sign of peace!  Breathe in their tainted air!  Shudder!  Gasp!  Someone please cue the horror music!

I’m being a little over-dramatic here, but you get my point.  I was getting worked up over something as simple as taking my daughter to church for fear that she would get a respiratory infection.  Seriously, I had to get a grip.

Believe it or not, that grip began to take hold during one of our recent visits to our pediatric pulmonologist.  I love this woman, who is simultaneously compassionate and aggressive and can read people as easily as she reads a chest x-ray.   During this particular visit, she could tell that I was getting a little spun up with my questions.  Does the sprinkler pose a risk of pseudomonas?  Should I be worried about my daughter frolicking in the ocean?  What about her following me around while I vacuum? Should I be concerned about the dust?   This list is not exhaustive, but you get the gist.

At some point during this conversation, I could see the physician starting to steal glances at my husband.  “Is she always this intense?” her eyes asked him.  “Yes,” his replied.  “Always.”  Finally, halfway through my list, she stopped me.  “Laura, it sounds like you’re afraid of what you can’t control.”  Ah, bingo.  She nailed it.  If managing CF were alone limited to taking enzymes; doing chest therapy; taking meds; and getting good exercise; it would be much easier for me to at any given point say “We’ve got this.”  But it’s all the other stuff ---- the person standing in line next to us who has a cold; the bacteria that lurks in seemingly benign places like shower heads and sand boxes; the Chick-Fil-A play place --- that set my heart racing.  Because short of wrapping my daughter in bubble wrap and locking her in a tower, I can’t do a darned thing about those things.  They are dragons that I can’t slay, and that kills me.

So where do I go from here?  You’ll be pleased to know that I have not purchased mass quantities of bubble wrap or instigated a home renovation project to procure a turret.  Rather, I’ve taken two important steps that have given my CF journey a sense of moving forward vs. just worrying-in-place. 

First, I put my daughter in preschool for two days a week.  Was I anxious about this important milestone?  You betcha.  Did I fret about the germy hands and snotty noses of her little school mates?  Of course.  Did I wonder if anyone other than myself and my close relatives could possibly dose her enzymes correctly during lunch?  Sure.  But then I thought back to what our doctor had told us during that last appointment.  Don’t be afraid of what you can’t control.  Control what you can and then move on. 

So a few weeks before preschool began, I met with the administrator and my daughter’s teacher and sat down to discuss CF.  They had received a letter from our CF center in advance that discussed what CF was and what to expect in the classroom.  The letter was good, but frankly, it was a bit too clinical and scary-sounding for me, so I supplemented it with something of my own.  I created a simple handout with my daughter’s picture; a few words about her current interests (Minnie Mouse, soccer, and ladybugs); a layman’s description of CF; and a short list of what my daughter will need to set her up for a healthy and happy school year.  They were incredibly receptive and spent almost an hour talking to me about how we would work together to keep my daughter healthy while also not defining her by her disease or making her feel different.  I left that meeting feeling grateful, confident, and believe it or not – excited – for the start to school.  I, alone, was not the only one who could successfully manage my daughter’s care!  These wonderful people could help me on Tuesdays and Thursdays from 9:30-1:30, and they would do their job perfectly.

I’m pleased to share that my daughter is almost one month into preschool, and she is thriving.  Each time she bursts out into the hallway after school is over, she greets me with the biggest grin I’ve ever seen.  She plops down on my lap right then and there and invites me to ooh and ah over all of the magical works of art that she has created that day.  She knows the name of all of her classmates and will tell anyone who will listen all about her teachers, Miss Amy and Miss Mary Fran.  She takes her enzymes without issue; washes her hands routinely; and once cold and flu season starts, she will not be paired up with anyone who has an obvious cough.  And that, my friends, is about all I can control. 

I mentioned above that there were two important things that had happened recently to give our CF journey a sense of moving forward.  My daughter’s start to preschool was one of them.  The second one was that I finally spoke with my primary care physician about my anxiety, and I now have resources to help with me.  I share this because I’ve talked to so many other people who have chronic health issues or are caring for those who do.  It’s hard work, and the emotional strain can be at times, immense.  Folks within the CF professional community have realized this and are increasingly staffing clinical psychologists at CF centers to help with anxiety and depression, both for people with CF and their families.  I think that’s great, and I’m so grateful to have access to resources that can help me be the very best parent I can be without being completely consumed by my worry. 

In closing, I’m hopeful that over time, I will be able to remove “professional worrier” from my resume.  Parent advocate?  Check.  Proactive as heck?  Check.  But professional worrier?  I’m going to try to leave that one behind for a while. 

So until next time, I’m going to keep focusing on controlling what I can and letting the rest go.  I’m going to care for myself in addition to caring for my family.  I’m going to admit that perfection for anyone – let alone a family who is dealing with a chronic health issue – doesn’t exist.  I’m going to just do my best and see where it takes us.

If my daughter’s smile when I pick her up from preschool in an hour is any indication, I think we’ll be all right.