Inspiration For The Soul!

 

    I began this blog several years ago for many reasons.  I had visions of where this blog would go, and whom I may reach to lend support through our journey.  I prayed long and hard to make sure, this was the calling God was guiding me to.  My point of view is just that, a Congenital Heart Defect Parents view.  I can only share how I feel as a parent, and share our journey the way I live it.  

     I was so concerned when I began this blog.  I may share to much, not enough, offend people, and just look silly.  I feel like I have opened my mind and heart for all, and in return I have received so much from God and each of you.

     I have grown as a CHD parent through blog writing.  As I reflect, I think I can glimpse the vision God has laid before me.  I write to release! I write to grow!  I write to educate, bring awareness, and to motivate and inspire others.  Sharing our life and our struggles is a risk, for sure!  If opening up and sharing our ups and downs helps one family, I believe I've used my purpose God gave me. I want to bring hope and encouragement to people.  For those CHD parents who are close to their breaking point, I want to help inspire you! Let you all know that I get where you are coming from.  I too have been there, and still have many days where I struggle. I lived with fear, and the stigma to be that perfect, know everything, heart mom.  It's ok to be sad, angry, guilty, and numb all in a matter of minutes.  It's ok to be confused and feel helpless.  Just keep moving forward!  Remember that your little heart child needs you in so many ways. Not just to give medicine and keep their g tubes clean, but to just be Mom. To love them, laugh with them, and even cry with them.

     My dream to provide hope and spread awareness.  Even if it's just a glimmer in your dark time, I'm with you.  I've been in that dark place!  I prayed many prayers for just one person to sit with me, and let me cry on their shoulder.  So if you have that moment, I'm here!  Cry away, I understand completely!  Sharing will heal the soul!

     To that sweet girl I recently had a conversation with...you know who you are.... This is why I am doing this!  Be proud of you, you inspire me!!!  Wear that with pride!  Those scars aren't ugly!  They are Gods little reminder that you are his little gem of love!  

Blessings Until Next Time!

Drena

Tiny VICTORIES!

     Advocating for your child can take a lot out of you as a parent.  It is an endless, many times, thankless job.  Seems like the only reward I get is an upset teenager, who thinks I'm always in her business.  To her, I think she thinks I'm airing our dirty laundry for the world to read.  Yep, it doesn't matter how blue in the face I get, explaining I'm sharing our story in hopes to help another.  It just doesn't fly.  She still gets upset with me.

     I must admit I have days of defeat!  Days when I step back and wonder, is all this really making a difference?  Am I truly reaching anyone?  Then, I have a moment like I had the other morning.  

     Sitting in an IEP meeting on full alert.  My advocating uniform is on! Praying I'm heard!  Hoping and needing this small group to truly see my daughter. I take a deep breath!  Needing these teachers to put aside their teacher hats, the rule book attitudes, and, see my daughter!  A teenage girl fighting to be enough in everything!  Surprisingly......that is just what I received!

    A warm cozy setting, light friendly conversation, and a deep honest regard for making this freshman year for Cora, a wonderful one!  I felt today was a genuine breakthrough for me.  These group of professionals asked questions no other teachers have ever asked.  They wanted to know Cora as a person.  They brought up ideas I never thought about, and showed me we were a team!  The past years have been me, the parent, taking on the critically negative professionals.  It has been a struggle to hold my ground, and not allow them to push Cora's needs aside, because she doesn't fit the "normal" IEP mold.

     Today I leave this meeting with a tiny victory!  I feel like this group of professionals get Cora. That they CAN help her to succeed now and beyond. This is the first group who has thought about her life after school.  Really, this is the first time anyone acknowledged that they need to begin preparing her for life after graduation, whatever that path may be!  As a parent doing my darnedest to provide as normal a life for Cora, I'm most grateful.  The teenage years have been a challenge this far, but adulthood is going to be so much more difficult!  Equipping my CHD daughter sooner than later, may make the extremely bumpy road ahead a little bit more bearable!

Blessings Until Next Time!

Drena

Broken Spirit!

     Going from discovery of being pregnant to having a child with a heart defect, runs the gamut of all the emotions imaginable, and some non-imaginable. I can't speak for any other Congenital Heart Defect parent, but for me, my spirit was broken.  Every Momma, to be, has envisioned life after the birth of their beautiful child.  From the first moment you get to hold them.  To the moment you get to see them graduate.  For me, those expectations were crushed the moment the doctor informed us that the visions of having a healthy child was not in the cards for us.  The reality, and the disappointment, that I may never experience my babies first cry, first smile, first crawl, or even the first time they said Momma was horrid!  This brought forth emotions of anger, envy, and disparity.

     Being pregnant is suppose to be a joyous time to share!  I carried around pent up confusion, and anguish.  Oh sure I put the happy face on and went along with the belly rubs.  But deep inside I wanted to smack people.  I want them to feel pain!  My heart and soul ached knowing my babies survival rate, after birth, was slim to none.  I had the mentality that if I hurt day in and day out, everyone else should feel a little pain too!

      Left with no choice, the expectations cast upon me, by me, to be a perfect Momma To Be, almost completely ruined me!  I spent those 9 months hiding my broken spirit, just pushing through each day.  Praying for a little light at the end of my babies tunnel.

     Reflecting back on that time, I realized that the pain and anguish I felt, prepared me for the joy God has given me!  14 crazy, draining, but oh so beautiful years with my CHD daughter.  My prayer now.....that God will grant me many many more years just like the first 14!

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