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

Between Two Worlds!

     Lately I have been trying to take a step back and really dig deep to understand more of where my sweet girl is coming from.  I know she's 14, and those teenage years have begun.  However beyond that, what must it be like to have been told you have this diagnosis, and that diagnosis.  I remember one time Cora saying she felt she was labeled.  When the doctors, nurses, peers, and teachers see her, they see the girl with a heart defect.  The girl who has this and that going on with her.  The girl who is more demanding than other kids her age.  She said she felt like she was a burden.  There is nothing more heart breaking for a Momma to hear than, your child feeling she is a burden to others! 

     I never really stopped to think about that statement though, until recently.  As the years have passed, my Cora, has begun to ask more and more questions.  Like any child, she is curious about her defect, her limitations, her difficulty in learning, and what all this means for her now in her everyday life.  So as I pull all these things together to share with her, I see defeat in her sweet big blue eyes.

     I often wonder what it must be like for heart kids in their daily lives?  It must be a daily challenge to live between two worlds!  A world where they are expected to prioritize, manage, and grow independently.  A world where executive functioning is easily learned, like breathing.  Versus, the world they actually live in.  The daily struggles with prioritizing, organizing, sifting, and managing daily information to perform everyday tasks.  In addition to the actual health issues added to an already overwhelming plate of obstacles.

     For Cora I simply can't imagine.  Believe me I have tried many times.  Cora has to take on these challenges everyday along with trying to understand and control her impulses.  Then we add the next layer.   Trying to find ways to get her memory to hold information.  A task so many of us don't even think about because our brains just do it!  I see her get so frustrated, and that brings yet an additional challenge for her.  The difficulty handling her frustration, and trying to stay positive when she's reminded daily of her obstacles.  

     For so many heart kids, they are dealt more than many grown adults have to face in a lifetime!  As a heart Momma,  I am her daily cheerleader!  I remind her constantly that the world is full of unique individuals who face all kinds of challenges.  Though she may feel most days that her challenges are many, she needs to focus on the strengths God has given her.  Yes life is difficult, but there is greatness she is adding to the world daily!  

     The stress for me, never diminishes, but I have learned to adapt daily.  Just like my Cora has learned to adapt in her daily living!  My job, if nothing else, is to make sure that no matter how many scars are on my baby girls chest, no matter how difficult the days are, she adds value and joy to the world!  Not because she is our miracle daughter, but because she is God's daughter!

Blessings Until Next Time!

Drena

     

     

Appointment Day!

     So with everything going on right now, I am embarrassed to say I forgot to post this blog.  I typed it, thought I posted it, but epic fail!  So for so many who have texted and messaged me about Cora's appointment results, I'm sorry, but thank you for your prayers and concerns.  Please read on to see how her appointment day at Childrens went.

     Tensions are high this morning as we begin our daily routine.  My mind is racing about Cora's appointment this afternoon, and unfortunately that has made me snappy.  Now that I have managed to make one daughter cry, and the other angry, we are now heading out the door to get our travels to school started.

     Cora is anxious for her appointment and nervous about a test she has this morning at school.  I have been moaned at, rolled eyes at, and now she claims this is the worst morning ever.  Oh yes, not looking good for winning Momma of the year!

     

     So fast forwarding to the afternoon, when I pick up Cora early from school.  She is now speaking to me, happy to be spending time with me, and can't wait to go to her visit at Children's Hospital.  Me on the other hand, well.......I'm still displeased with her actions this morning, and confused by her chipper attitude this afternoon.

      Upon arriving at our appointment Cora is in good spirits when she asks me again what all is planned for her appointment.  As I'm recapping I notice this crazy look on her face.  When I ask, she catches me by surprise yet again!  She claims that she doesn't want to do the echo.  She said last time it hurt so bad as they pressed on her and moved around her chest and neck.  I simply just looked at her, not knowing what to say.  She continued to express how the gel and the pressure she encounters is far worse than pulling those "stupid" stickers off her scars after an EKG.  I still said nothing but, my blank expression must have caught her attention.  She paused and went into defense mode.

     "What?  It hurts Mom, and I'm sick of them pushing and giving me orders the entire time."

I patted her hand, expressed I was sorry, and said I understood.  Really?  Understood?!  I have no idea what this poor girl has gone through.  I can't even begin to wrap my head around all the poking and prodding she has encountered since birth.  Emotionally, I have no clue what it has done to this sweet thing.  It pains me to see her flinch and grind her teeth when they apply pressure to her little neck.  When she turns to me glassy eyed with a look of help.  It literally breaks my heart into pieces.  I get these tests are important but, they are still inflicting pain on my baby!  Pain I can't make go away.  I can only look her in the eyes and tell her it's ok and she's doing a great job!  Watching a tear fall from her eye is like having someone take my babies and say you can't ever see them again.  It was another difficult moment for me to take in.  I had to bite my lip to keep my tears from forming.  

     So after we finally finished the ECHO, and moved onto the EKG I could see Cora's nerves were wearing thin.  I tried to keep her distracted but, it was difficult.  It is getting more difficult with each visit.

     As we sat waiting for the doctor to come visit and discuss the results, I watched Cora withdrawal into her iPod.  She was quite and didn't want to talk much.  I have learned with Cora, the music helps stimulate her focus, and releases some of her stress.  So we sat together in the little room, quite, and patiently waited to be visited by the nurse and cardiologist.

     Finally the time came and results were discussed.  I was on edge to hear the results, but tried to calm myself.  Cora's oxygen stats where in the low 90's, which is great for Cora.  The EKG revealed nothing new to be concerned about, which put a little smile on Cora's face.  The ECHO showed the same as her last appointment.  She still has a leak that doesn't close completely when her heart pumps, but it hasn't changed much because she hasn't grown in height much!  So overall the doctor was happy, and I was relieved that we didn't take a step backwards.

     The biggest obstacle we have now is getting Cora to take her medications.  Cora doesn't want to, and fights with me about it daily.  So the cardiologist had a nice long talk with Cora.  He was direct to the point explaining why each of her medicines must be taken multiple times daily. 

     I get she wants to be a "normal" kid, but without taking her medicine daily, she puts herself in jeopardy of becoming very ill.  Which could lead to something much worse.  She wants to be treated like a responsible young lady, but the fact that she either doesn't remember to take her medicine, or she just doesn't, has become a very sticky subject with me.  I want her to become more responsible but, not at the risk that she is sneaking not taking her medicine.  So the cardiologist and I are driving home the high importance of taking her medicine multiple times a day.  We'll see what the next few weeks bring but, I felt confident that the sturn talk her cardiologist had with her today, was heard by Cora. 

     For now I'll keep walking the thin line between giving her the freedom and responsibility, and the need to keep double checking her!

Blessings Until Next Time!

Drena