Who's got your back?

My recent months have been a rollercoaster of emotion.  No stability and certainly no consistency except one thing - support.

Because of our quarantine in recent weeks, since Michael's doctor suggested avoiding large group settings (most places in the world) and highly trafficked places (and all other possible places in the world) we have no choice but to stay in lock down at the house.  While this sounds extreme, it isn't.  In our minds, it's simply smart decision making right now.  And we are adhering to the doctor's advice...  if it's not necessary, we just don't go out.  And while obviously we are not ones to lick the handle of a shopping cart or rub our eyes after getting of the Metra commuter train, there are germs everywhere even with best practices like hand sanitizer or good handwashing.

I know some unknowing parents look at us like we are crazy when we Clorox wipe restaurant tables regularly without the kids being visibly sick.  Or when I have a hand sanitzer bottle in every purse, diaper bag and a pump container of it my car.  I am not just a crazy mother, people.  I need to be crazy.  It's necessity.  So, keep staring and keep rolling your eyes at me in those stores and restaurants.  I am the better person, because, I know better.

Moral of the germ story is that we are just hanging at home until Michael gets over the hump of this most recent sickness.

I won't lie that it has been insane and overwhelming being at home with the boys nonstop.  They are stir-crazy as am I.  But these little guys get through the cabin fever with each other's help.  "C'mon Dy Dy," Michael prompts and grabs Dylan's hand as they run off to the basement to play.  Dylan turns around and fiercely looks at me.  As he is running off with his big brother, he shouts around his obstructive pacifier in his mouth at me.  I can easily translate his fervent demand to play Wii boxing in his mini dictator tone.

Dylan is dressed in a white t-shirt, a diaper, and a royal blue pacifier in his mouth.  He gathers himself for the big fight.  Michael's cheers his brother on in the boxing ring, "Punch him, Dy.  Punch him right in the face!"  And Dylan, clutching the white plastic Wii remote in his little tot hands and sucking firmly on his pacie, rapidly flutters his arms up and down back and forth.  He growls at the large screen TV, "GET.  GET.  GET."  Then he dramatically collapses onto the floor for effect.  Michael hurriedly shouts for him to get back up since the match isn't over.  Michael won't let his brother down that way.  He will cheer him to get up until the very end.  Very moving.

Ahh, my boys help each other out.  I see it in all ways, not just the rough and tough stuff either.

It's also in the sweet unassuming moments like when Michael excitedly puts in Dylan's favorite movie, Baby Einstein Shapes, for his breathing treatments.  Michael shuffles around our bazillion DVD's, locates the correct one and delicately pops the DVD out of the cover.  He loads the disc and waits anxiously to hit the play button and cue up the movie for his baby brother.  There are also the times when an airway clearance session has finished on the respiratory vest, Michael gently unhooks the tubes and unsnaps the buckles.  "All done?  Dy, you all done?", he prompts his baby brother.  Or even when Michael "helps" Dylan out by doing his chest therapies (this one we'll say is a little more pretending and acting out than actually doing).

But all of these are amazing illustrations of how these two little ones are bonded, deeply and inexplicably.  They are brothers and they are each other's pillars.

It has been lonely and surprisingly quiet for me at times during our lock-down.  Many friends and family have reached out to see how we are all doing or to lend help.  One of my best friends brings a warm dinner and we dish about more than food.  We catch up about all things life.  We do the math and realize that it has, shockingly, been months since we have seen each other.  She and I have a remarkable connection that I plan to memorialize in a book some day.

We met on a CTA bus eleven years ago commuting along the same train line from the suburbs into the city of Chicago.  We delivered babies on the same day with the same doctor (yes, keep scratching your head).  We left work in demanding sales careers at the same time.  We both have roots in West Virginia.  We both know what it's like to lose a parent at a young age.  We have both married our high school sweethearts, who are by the way both the middle sons of three boys.  We both planned our high school reunions.  We were in some bizarre way, lost souls that were looking for each other's completion.

We even sat licking our baby boys together weeks after they were born to see if they tasted salty.  Turns out that mine were salty.  Hers were not.  CF has had an all too real presence in her husband's family.  She is a wonderful friend who I admire greatly.  She has her own hands full with 3 little boys and a fourth baby on the way.  I am lucky to have her.  Our catch-up session over Mexican food at my kitchen table leaves me feeling normal.  Always like old times.  And in some weird way, things are as they have always been.  Because she's got my back.

Another one of my best friends, my college roommate and Dylan's Godmother, brings me dinner and puts in my freezer and tells me that she is coming to help me this week.  She knows that I am overwhelmed and knows that I don't even have a good minute to run to the grocery store or consider doing something like (sigh) a manicure these days.  She gives up a day of her freedom from her own kids to relieve me for an hour or two to get out and run much-needed errands.  I am continually humbled by her selflessness over the years.  We joke that our friendship was sealed the first week of classes at Indiana University. We met in an advanced Spanish class and strangely a few days later, 150 miles away in a different Big Ten city, I spot her standing on a street corner as I drive past.  We lock eyes stunned, me in the passenger seat of the car in disbelief pointing at her and she on the street corner her mouth agape pointing at the slow moving car I am in.  From that moment on, we are friends.

I clearly remember losing my voice on spring break in Cancun and she was my voice.  I cannot forget her considerate offers to watch Michael so I could go to my maternity appointments when I was pregnant with Dylan.  And I have vivid memories of our late night talks in our college apartments while slamming a Pizza Express pizza and bread sticks.  She has been there for me over the years.  I am so grateful to have her friendship and unwavering support.

I have received calls from my lifelong best friend a few times checking in.  I suspect she wants to hear my voice and I know that I too need to hear hers.  And my cell phone voicemail comes alive with my girls, my mother, and my mother-in-law.  All who have a sixth sense that life is beating me down.  Even my former high school friends who so thoughtfully send me a kind note and a Starbucks gift card, because they just know that I can use a pick-me-up.  Should I feel so loved and supported.  These are my women.  There are many days that I wonder why everyone is doing that for me.

* * *

It is a casual gathering in a room somewhere in middle of Chicago suburbia.  A private room at the top of the dramatic, winding staircase and to the right.  Images of the black and white checkered floor and bustling tables drift by as I near the room framed with massive velvet drapery.  We are not spies or some secret sisterhood.

Two of my friends and I duck around the velvet and enter the room with a volume ceiling and art deco touches.  We see our friend who planned this lovely evening.  As we hug and greet each other, more women fill the space with laughter and light.

The mood is comfortable and easy.  We settle in as though we have known each for many years.  A halo of indescribable warmth radiates around each of us.  The tables with classic white restaurant linens are dotted with miniature bud vases with single red roses.  A single word defines each vase stands on its own, but it's the trio that carries the weight of the meaning.

Couldn't have said it better for dinner with these women.

Different ages.

Different backgrounds.

Different appearances.

Same cause.

We fight the same fight in our homes.  We know the struggles each other face every morning we wake up.  We share the same hope every night we go to sleep.  We come together to share our grief and healing.  "So, when was he diagnosed?"  We trade our common challenges and disruptions.  "How did you get her to stop throwing up at night?  What did you change?"  We compare our surprise that even those close our community often don't even 'get it'.   "And could you believe the nerve of that social worker saying that?!"

Time fades away as we gab through our stories.  As we look at our watches, we realize another evening together has passed.  Slowly, we trickle out of the private room in the restaurant where the heavy velvet drape has kept us in a safe cocoon for hours.

These special dinners grace our calendars only a few times a year.  They are therapeutic and remind us that we are never alone on this journey.  I recall at one of these dinners a server once asked us, "So, how do you know each other?"  And we all looked around the tables, and with a collective smirk said, "I guess we are kind of a support group."

GASP!  Dare we call ourselves a support group.  That is stuffy and cliche.  And that's just not us.

We are detectives, project managers, problem solvers, lay physicians, referees, negotiators, culinary experts, germ specialists, and respiratory therapists.  Many of us are also mothers.  But the best title we can claim around these tables are 'friends'.  With no other way to explain how this ensemble of amazing women would have otherwise come together, it's the only easy way to share our deeply profound connection of fighting this terrible disease.

We can't always predict what life has in store for each us.  I would not have any of these strong and beautiful women in my life if not for chance.  Chance to meet that girl on the bus, or chance that I passed that classmate on a street in another city, or chance that my beautiful boys have CF.

I see it with my boys and how they lift each other up every day.  Every pill.  Every treatment.  Every time they play together.  They living together, laughing constantly and loving always.  They hold hands when they run off to find an adventure and they hug before bedtime every night.  One of my favorite pictures of all time was when I looked down at the boys in the stroller while walking through a shopping center and saw Michael clutching sweet baby Dylan's hand who was no more than five months old.

It's the moments when Michael gently kisses Dylan's forehead goodnight and they use their little hands to sign "I love you".  These little guys support each other in every way.

To truly live, to hysterically laugh and to deeply love is most rewarding when you are supported along the way.  And to those that support me, every day, I tip my hat.  Because, sisters, I got your backs.