Taking the Mask Off

"Crisis has happened.  What will come of this? ... We have a choice to be conformed to the ordinary, the expected, the easier path.  Or we can choose to let this event transform us." 
---Miriam Neff

There are days when I feel as if a nuclear bomb just hit our family, and other days I feel as relaxed as can be (those days are few and far between, and normally forced on me thanks to my loving husband).  The fact is our family endures a crisis every day.  We have learned to live with it, and endure it, and one day we pray we can conquer it. 

Living with a child with Cystic Fibrosis is challenging.  Just like in all things, I have my good days and I have my bad.  I tend to wear my happy mommy mask on those bad days, knowing they will pass, but also not wanting to make anyone feel sorry for me, nor our family, because we KNOW that God is in control and that He knows that we can handle whatever comes our way.  But I have realized something recently...wearing a happy mommy mask stinks!  I want to be real with you and I want you to know how hard some days can be.  I am going to take my mask off today and be real with you...

For starters...No, I don't own a super hero cape.  No, I don't own a super hero costume...and No, I don't have any super powers (although the abilities to twitch my nose and have a clean house would be AMAZING).  I am a MOM!  I supposed that is the greatest superhero of all times, but I am normal...well, some may disagree...but for sake of argument, I am a "normal" mom.  I laugh, I cry, I get angry, and scared.  I feel empowered and encouraged.  I feel weakness and failures.  As a mom of three amazing little ladies, I feel blessed, loved, needed and wanted.  As a mom of a CFer, I feel tired, overwhelmed, frightened and discouraged. 

Lately, I have been struggling with looking at our CF journey with an encouraged heart.  Emma's health has been deteriorating and it is so hard for me.  With every treatment, medication, and doctors appointment, I feel more concern.  In the last year, Emma's PFT's (lung functions) have dropped a total of 88%!!!!  For some of you reading this, you have no clue what I'm talking about.  At every doctor's appointment, we check to see how well Emma's lungs are working, in the past 12 months, she has had a steady decrease in how well they are doing.  Now, let me be clear with one thing, Emma's lung functions are still good!  They just used to be AMAZING!  They believe it may be caused from the new bacteria in her lungs.  We are meeting with Infectious Disease later this week, in hopes that we get some answers.

As a mom of a child with a terminal illness, you struggle with many things, but I feel the need to address one, specifically.  **Disclaimer...I'm about to get VERY personal***  Knowing that this horrible illness will take the life of my daughter is so hard to wrap my head around.  I have recently watched several families have to bury their babies, teens and young adults due to Cystic Fibrosis.  In the USA, one person dies from CF daily!  Cystic Fibrosis is not a respecter or persons, age, ethnicity, religion, education or gender.  CF is deadly and unfortunately, it wins every time.  I don't say that to sound heartless, it's the facts, the truth, the reality of our life.

They say roses are meant for love
And roses are meant for peace
But these roses shed blood
These roses are quite unique

Instead of the typical dozen
We are dealt with 65
We must learn how to function
We must learn how to survive

As our bodies grow weaker
Our minds become stronger
As our roses become the leader
Our days aren’t stretched much longer

Thorns leave behind defections
These soon become our heroic alterations
Our roses aren’t signs of affection
We must learn to accept our gene mutations

We are much more than sisters and brothers
We are cysters and fibros
Once there is a passing of another
The sorrow overflows

Although someone may have passed
It doesn’t mean they have succumbed to the fight
Although that crackly breath was their last
Their strength and soul still ignites

In spite of the fact that roses have deadly thorns
There’s a beauty within them all
Between tears, pain and all of the mourning
We have learned to accept this brawl

Author Unknown

Now, onto the area I am struggling...I am having the hardest time with wanting to make good memories with my girls, especially with Emma.  I know some of you think I am insane right now...but the reality is, as Emma's health is starting to fade, I fear making these amazing memories with her and then having to watch her fade away.  True, I will have these great memories, but in light of the thought of losing my daughter, those memories will NEVER be enough!!  I will only long for more, I will long to hold her her, laugh with her, tickle her, hear her silly jokes, look at her beautiful drawings, see her amazing smile.  It will be torture.  I sing a song to Emma all the time...

You are my Sunshine, my only Sunshine.
You make me happy when sky's are grey
You'll never know dear how much I love you
Please don't take my Sunshine away

Unless a cure is found, I know one day my Sunshine will be taken away.  I hate that thought, it has brought a fear in my heart.  I am so terrified of this day.  I'm not sure if I am the only CF Mom that feels this way, but I highly doubt it.  Now, with all that being said...will I let this crisis dictate the memories I make with my girls???  NO!!!!  I long to treasure each moment with them.  To look into their precious eyes and know that without saying a single word, they know that they are special and loved.  I am a control freak, I want to control the future, but I know I have no control over it...God knows the who, what, when, where, and why of everything...so I tend to stress myself out for nothing! 

For those of you that have children, remember to stop and hug them a little tighter today.  Stop and listen to their laugh, their sweet little voice.  Watch them with amazement today as the play, grow and enjoy life.  You never know what tomorrow holds...what are the BEST qualities of your little angel?

Abby has the most giving, loving and helpful heart.  She longs to make you proud.  She is hilarious and has an amazing sense of humor.  Emma has smile that warms your heart, a laugh that brightens your world and a personality that makes you fall in love with her.  She is the most sensitive to those that are hurt or ill.  Ayva is the most determined little girl.  She has the softest heart, she loves to be with her family and she loves to be silly.  I'd love to hear about your little ones...no matter how old your "baby" might be...tell me about them...

"Love and Pain go together, for a time at least.  If you would know love, you must know pain too."  Hannah Hurnard

The fact of the matter is, love hurts.  It always has and it always will...but despite my fears, and insecurities, I cling to God's word and know that 'He is close to those who are brokenhearted and He rescues those who are crushed in spirit.' Psalm 34:18.  My God is holding me in my time of need and He wipes away every tear that I cry.  Remember, that He loves you, He sent His ONLY Son for you! 

I hope and pray that you are encouraged...even in the midst of pain and sorrow.  Of confusion, frustration, joys and excitement.  We all wear a "mask" at times, hopefully, we can all learn to take them off and be real with one another.  Thank you for letting me take my mask off today!