Invisible Pain!

     So many illnesses are associated with the eye.  We make judgements daily with our eyes and draw conclusions, mentally, from those.  If you have a runny nose, your eyes are droopy, and you have a cough....you must be sick, right?  Now let's think for a minute!  How many illnesses go undetected because people don't physically look sick, but truly are?  Really, think about it for a minute! 

I have been advocating and fighting for my daughter since her 2nd open heart surgery.  I wish I could say it has gotten easier as she has gotten older, but I'd be lying.  Her invisible pain is her constant fighting to prove she has a congenital heart defect.   You know how exhausting that is for a 14 year old?  I'm exhausted with the continued educating that I have to do teaching people, that just because  my daughter looks like a "normal" teenager...SHE ISNT!

 She is broken!  She will always be broken!  She has learned to live a life of brokenness because, that is all she knows.  And I must say she does a fabulous job at it!!  But the truth remains, she is judged visually daily.  We both have been called terrible things, accused of just "wanting attention", and have been told flat out we were lying.  What does this say about us as a society? 

The strength my daughter shows daily is admirable and heartbreaking at the same time.  No CHD child, or any other child with a disability, should have have to bear these obstacles.  Their scars may not all be visible, but their daily battles are so real.  Learning to adjust to a world of Normal, is not just tricky for a CHD child, but a parent also.  There are situations that are crossed, where we have to be innovative to make things work.  Whether it be a specialized educational plan, or a modified sport from a understanding coach.  

I guess what I'd like most would be compassion.  Yes my child may slow down the games ending time, maybe fail all your quizzes, and even struggle socially with her peers, but.....she is still just a child!  Impressionable, full of the same emotions as everyone else, and wanting to just be accepted as she is.  So the next time you find yourself passing judgement on a child, or a parent, do me a favor.  Look beyond the visual first impression!  There is always more than what meets the eye!

Blessings Until Next Time!

Drena

A Little Spunk!

     Driving down the road with Cora she asks me to turn up a song.  As I do I see her straighten her back and sit a little bit taller.  Listening, I hear my daughter sing every single word with conviction.  She sang as if she felt every single word to the core.  As the words continue to fill the car, each sentence sang touches my heart.  This song is more than just an awesome song for my 14 year old.  This song is so very much more.

     As the song completes, and the radio is turned down, I see the smile still on Cora's face.  As a curious Momma, I have to ask!  Before I can get the words out, she tells me she absolutely loves that song.  Cora proceeds to tell me the song is her voice!  She continues by informing me that she sees herself as that small boat in the ocean of life.  That she feels she isn't heard often, and she doesn't speak up much.  However she isn't ready to give up on life!  She isn't ready give up on the notion that there are many other kids with heart surgery who will follow behind her in school.  She wants to help make the path a little easier for the next congenital heart defect kid.

     This song is her anthem!  Cora says it is her "fight song, take back my life song, prove I'm alright song." She says she feels strong when she hears it.  She doesn't want to give up, or care what others say, because she's "still got a lot of fight left in me."  She isn't going to think about the end, she is going to think about the now!  Clearly there were no words that I could say.  At the risk of being a crying mess, and unable to see the road to drive, I simply smiled and nodded.

     So thank you Rachel Platten.  Thank you for your song Fight Song.  Thank you for empowering my daughter through your words. Thank you for breathing courage, hope, and inspiration into my CHD daughter!  Silly as it may sound, any little bit of encouragement she can receive to lift her spirits, and ignite a flame within her, deserves a special thank you!  If that has to come from a song, I'm so grateful it's a song like this.  I'm blessed that God guided my daughters ears to this song, her entyrruptation of the words empowered her, and that she now has some new found strength, and unconditional love,  to continue to try to make a difference in school for other CHD children who may follow!

Blessings Until Next Time! 

Drena

Inside Out!

     Being a Momma is one of the most rewarding, and exhausting privileges I have been given.  Being a Heart Momma is a daily emotional draining, and very lonely road sometimes.   I must admit there are so many days I feel like I'm in a complete daze.  I just go through the motions, somehow managing to put one foot in front of the other, and making it to my destination.

    Though time has passed my mind still reverts back.  Even though Cora is now 14,  I still wake up in the middle of the night to check on her.  Constantly making sure she is still breathing!  I still have bad dreams of the many times she coded after her surgeries.  I still hear the beeping of monitors in my ears, and smell of the CICU.  I can still feel the fear and sorrow as they take my sweet girl from my arms.  I ache reliving the nurse carrying Cora across the hall to her surgery room.  These things, they never leave me, ever!  I feel like I live a life that's inside out! 

     Even 14 years later I still struggle weekly, sometimes daily, with these haunting images and emotions.  Sure I've done a fantastic job repressing all these emotions.  Yes I have gotten very good at swallowing those choked up moments when you want to burst into tears.  Sadly I have become a master at keeping up my walls so al around aren't to be concerned.

     I have learned it is very difficult to live a stress free, non emotional life.  I have discovered strengths that can only be described as God's grace, when every inch of me wants to curl up in a ball.

     

     Many nights I pray for rejuvenation and healing of my strength.  Sometimes when I shed a tear, I hear God whisper oh so softly to me.  He reminds me that the loneliness I sometimes feel, is his cry for time with me!  That's when he heals me!  God gives me courage and renews my strength, so I can be the best Momma he knows I can be to all three of my daughters.  

    I admit it's not easy.  I know I still have a lot of emotions I've never dealt with.  I openly admit that I do struggle with my faith, trying not to worry.  I still have days where I'm on the verge falling apart.  I have even questioned God's plans for me.  Each time it gets this bad God will place scripture in the most unusual places.  My recent is Titus 2:3.  I found it on LinkedIn of all places.  It was like it placed there at that moment just for me.  Titus 2:3 says to use their lives to teach what is good.  So I'm willing to expose my feelings and emotions with you.  My life is riddled with imperfections, but it is a life that I use to help teach others the good within it!  Yes, having a CHD child is some days more than I think I can handle.  But this journey our family is on is meant to be!!  It's meant to be so we can share the good and the struggles with each of you.   Thank you for journeying with us, learning together, and supporting our family!  There's definitely not many dull days in our house!

Blessings Until Next Time!

Drena