Questions and Coffee.

A reliable, steaming mug of coffee gives me comfort.

I love when tan, creamy coffee is fresh and greets me in the morning.  I never end up making it all the way to the bottom of a cup of coffee, since it usually gets set down in my distraction and goes cold.  Icy, disrespectful coffee is my nemesis.  There are also the times that I brew a cup of coffee in our Kuerig, only to forget about it entirely.  I easily average making 3 cups of coffee daily, but I am lucky to drink one whole cup.  I just have too much I am juggling these days.

For whatever reason, this is a morning that I can actually sit down with my dependable friend and watch the morning's headlines.  With a sigh, I flip on the TV.  The kids are eating breakfast pleasantly at the kitchen table.  Our morning is already upside down, but I figure we'll rearrange our routine and get right back on track.

We normally greet the boys every morning in the same fashion.  Dylan flings his door open and if we haven't heard the thud of this act, we usually hear his sweet toddler voice call for us.  He stands at his gate with his favorite thumbie blanket, "monkey, and his two pacifiers, his "boppies".  We enter his room, first with a diaper change, then gift him a cup of juice spiked with Miralax, and we collectively crawl back into our bed with the melodies and spinning scenes of a kiddie show.

Next, Michael will usually stroll into our bedroom, now as dark as a cave, with bed head.  Not just a little disheveled, but completely messy hair in all directions.  Michael's azure eyes blink slowly.  Dylan yells in a perky tone, "Hi, Mike!"  Michael rubs his eyes and climbs into our bed.  Our family together, every morning.

Usually, our immediate laze is soon contrasted by a flurry of CF treatments and medications.  There are nebulizers and the airway clearance sessions, but not until Michael and Dylan have had their first medications of the day like antacids, appetite stimulants, steroids, digestion aids to help move food through the stomach.  Then there is a barrage during breakfast of vitamins and probiotics.  I have to constantly run through the checklist of all that needs to be done, and more cumbersome, and when it needs to happen.

*   *   *

It is Friday night and one of my best friends from college comes to visit.  My husband picks her up at the airport and once she walks through the door, it is just like old times.  A chatty catch-up paired with beers (now Blue Moon, not stale keg beers served in Solo cups).  My taste has improved a little since our days of 5 cent beers at our favorite bar where bands played.  We are happy.  You'd think we are 21 again.  Well, except for my two sleeping angels upstairs tucked their slumbers.

The next morning I shove my husband out of bed to go deal with the kids.  He is always good about letting me sleep in and this morning, honestly, the few beers are having fun trampling on my tired brain.

After a short while, I roll out of bed and stumble upon the kitchen.  The loud whir of the medical machines in the next room advise me that the boys are doing their morning round of CF treatments. My friend is sipping her cup of coffee, and my husband is task master for the morning's to-do's already starting breakfast for the kiddos.  I take a prepared breakfast casserole out of the refrigerator and set it down with a plunk! on the counter.  I turn oven on and brew a hot cup of coffee to help me wake up.  There is nothing like a good talk over coffee, or beers for that matter, with an long-time friend.

As the day progresses, my dear friend witnesses all that has been weighing on me.  As we go along our routine, she presents really good questions.  Questions that I have never been asked.  I have never had someone who isn't already intimately familiar with our drill spend almost 24 hours in our house to see all that we do.  She wants to know so much...  why we do certain things, how we do them.  I am really touched by her curiosity and her heartfelt sadness.  From my good friend who is also a mother, I can also read what she wasn't saying aloud.  I don't think she has realized how CF dominates every aspect of our lives.  Completely.  Small children require lots of care, of course, all mothers can relate.  We just have a crazy amount of extra steps.  There is simply a lot that goes on in one day in our home and I have become desensitized.  Her sparkling eyes and inquisitive sentiments got me thinking...

What would it be like to be able to wake up and not think this way all day?  My brain has been completely hard-wired to think differently.

I have no idea what it is like to simply hand food to my kids without pills or without thinking.  Without thinking... anything.  Normally feeding my kids is a mental exercise.

I am constantly doing the medicine math in my head...       How many pills does he need with this?...
When was the last time he took enzymes?...      I swiftly grab the box of you-name-it and study the fat content...      How much fat is in this?...      What is a serving size?...      How much will he probably eat?...      When was the last time he took his digestive medications?  Is he on schedule so his hunger will peak now?...      If he has a huge snack now (applause!), then will he eat his meal later?...

I actually have moments when I wonder if I have taken my enzymes before I eat something because it that ingrained in my brain that this task precedes eating.

Besides some thoughtful questions from a close friend, it is also happens to be a natural time of year when I reflect on this journey since we are on the brink of fundraising for our annual walk in May.  The coming two months mean preparing, planning, creating, educating and fundraising.  It is a time of reflection and insight into our lives and not just for our circle of supporters, but also for our ourselves.  What are doing and why are we doing it?

I relive Michael's diagnosis.  I remember it vividly.  It's a bright Friday afternoon and I have arrived home from Children's Memorial Hospital where we had brought baby Michael for a test.  He is now quietly napping in his crib after the exhaustion of the morning.  I am standing in my kitchen, summer sunlight flooding through our windows when the phone rings.  I grab the phone and quickly glance look at the caller ID and see it is the pediatrician's office.  "Hello?"  I am confused since we weren't expecting a call until after the weekend.  The senior pediatrician introduces herself since we have never met in person.  She clears her throat, "We just got a call from Children's Memorial with Michael's sweat test results.  They were 112 and 110.  This indicates that he most definitely has CF.  I just spoke with the director of the CF center and she is prepared to talk to you right now and even see Michael this afternoon."  There is urgency in her voice.  Silence on my end of the line is broken by sobbing.  I brace my weight with my hand against the kitchen counter.  And the phones starts to slip from my hand.

I also experience the remarkable highs of this journey with all other individuals, families, friends, and supporters of advances with treating Cystic Fibrosis.  Last week, I am laying in bed for once before the boys wake up and I am scrolling through apps on my phone.  I see the headline breakthrough on my social network news feed from my mobile phone.  I dive out of bed and hurry to the blaring white light of our computer.  "Announced positive results from Phase 3 Clinical Trials...  improved lung function...  fewer pulmonary exacerbations... weight gain..."  A drug that we have been watching like a hawk since Michael was diagnosed four years ago has achieved favorable results in the final Phase 3 trials before it will go to the FDA for approval.  Wait, not only favorable, but OVERACHIEVED expectations.  This oral pill, over a significant duration of almost a year, helped CF patients' key markers that define CF are all notably improved.  Even the sodium chloride in their sweat shifted significantly toward a more normal range...  translation:  patients are less salty when they sweat!

A miracle.

I start crying.  My heart swells into my throat.  Then an email pops up from my brother-in-law about the CF drug and the company's stock is trading up.  We exchange emails and I then share the news broadly with friends and family.  While this drug alone will not cure Michael and Dylan because of their genetic code, this pill combined with another one in Phase 2 Clinical Trials are hoped will be the key.  The key to fewer questions in my days, better health for my boys, and overall a better quality of life.

Our fundraising journey and creating awareness about CF is often met with questions.  Questions that I am always, unabashedly, glad to answer.  If I don't keep telling our story, no one will for us.  I think of all the other parents before me who continued their vigilance in sharing their kids' stories.  It was these pioneers who have brought us to a remarkable place in medicine.  A pill that alters the body's cells to CORRECT the dysfunctional CF protein.  I silently thank these men, women and children who have changed the course of days for my two sweet children.

I take a long, controlled sip my coffee.  It's hot and burns as it rolls down and warms my dancing soul and my busy brain.  "Mom!" Michael shouts abruptly from the other room.  I set the cup down on the table and walk away to see what today's adventure may bring.