Tears of Joy..A Birthday Celebration!

     The hope and joy of seeing a very sick CHD baby grow, face set backs, gain courage, handle illness with grace, all the while growing into a young lady.  Today is a sweet reminder of my baby girl's journey!  It is a day that I have reflected and ran the gamut of her highs and lows!

     So today I celebrate that newborn baby who coded many times, but continuously fought her odds, and overcame those odds.  I celebrate the toddler who underwent 2 heart surgeries, not understanding the importance or the pain she endured. 

     I celebrate that preteen who fought everyday to just fit in!  The preteen who has struggled in more ways than I ever have, but still finds a way to smile.  But most of all....

     I celebrate my 15 year old, sweet CHD daughter.  Though many days are more difficult than not, she is learning to take each day with grace and poise!  Each day I see the courage of David within her, as she faces her Goliath (obstacles).  Though she falters she continues to brush herself off and take one step in front of the other!

     I pray with all my being, God gives you many more years to grow and become everything you want!  A lady, a Mother, a wife, and an author.

     Happy 15th Birthday my Heart Hero Baby!  Love you more than words.

                      Momma

Blessings until next time!

Drena

Loving Thyself!

     Teaching a child to love themselves is such a challenging task for a parent.  It is even debatable, if this is something that can even be taught!  As a parent, I have yet to meet someone, who doesn't want their child to love the person they are inside and out!  

    As parents, we put so much pressure on ourselves to be the mighty teacher of everything for our children. But so much just can't be taught by us!  We can guide, give direction, and even sometimes nudge them.  But in life, we all know we can't teach everything. 

     

     Our children have to learn to love themselves. They have to discover who God has made them to be. They have to discover their value and purpose from God.  Not by their choice, our even our choice....but by God's design. 

     God has put within each of us, the ability to overcome our insecurities. My goal as a parent, is to help guide my children to value themselves.  To accept that we all make mistakes and fall short, but forgiving ourselves is key.

     Having a daughter with a heart condition so many things are fragile.  There is a very fine line between disciplining and guiding.   Not only is she judged by others, but now she is judging herself.  Putting blame on oneself for your difficulties, differences, even a heart condition is toxic.  This pill is the hardest to swallow.  It always seems easier to see our shortcomings, and blame ourselves for them.   

     I don't want my CHD daughter to blame herself for anything.  I want her to have compassion for herself.....I want her to accept who she is and not just embrace it, but love it, and be proud!  I want to her to realize that God made her and he doesn't make mistakes.  But above everything else, I want her to respect who she was made to be!  I love her just the way she is, and wouldn't change a thing.  Because I'd loose the Cora I know and love inside and out!

Blessings Until Next Time!

Drena

Dear Momma To Be!

Dear Momma To Be,

     

     Where should I start?  If I could step back in time, I'd help prepare you, keep you from being blind.  Dear Momma To Be.  If I could hold your hand, I could keep you one step ahead from all the pain you're about to endure.  These months to come will be hard, mental bars, and physical scars.  That tiny seed God planted needs to be clung to.

 

     Oh Dear Momma To Be.  If we were face to face.  I'd be there by your side, to help you fight the doubt within your heart.  Dear Momma To Be.  It's not your fault.  You were never meant to carry this pain and fear all alone.  Every mountain, every obstacle will help lead you closer to who you're meant to be. 

     So, Dear Momma To Be. As I stand before you. I can tell this journey will change you forever!  The road you walk will sometimes be unpaved, the pain will at time be close to unbearable.  But open your eyes....she that sweet blessing?  That's your reminder

I wouldn't go back and change a thing. God gave you super powers, that have grown over the years!  That sweet little blessing you hold is your reminder!  God made that beauty and instilled in you super hero qualities......You are a CHD Momma!  Welcome!!!!

 Blessings Until Next Time!

Drena

 

 

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