Meeting Jesus!

     I have been working on a book about Cora for years now.  I have stated previously that writing this book has been a very difficult emotional journey for me.  The other evening I was rereading some of what I have written and came across a section that I wanted to share.  So below is an excerpt from my current book in process.  

    "Sitting in this cold sterile room looking at my sweet innocent 4 year old I begged God to heal her and make her ok.  The surgery itself was very difficult on Cora and she was touch and go now for several days.  I sat fixated on her precious body and so wished I could take her place.  Nodding off and on for hours my hubby touched my arm and gestured to Cora.  I opened my eyes to see those beautiful blue eyes looking at me.  She couldn't speak but I could see was happy to see us, as we were overjoyed to see her awake!  

     Fast forward to 3 days after when she was feeling a bit better and her voice was free to speak.  We just finishing watching Snow White, Cora just loved those dwarves, when Cora said to me " Mommy I met Jesus."  I turned to her and my mouth wide open said "huh?"  

Cora whispered with her scratchy voice " I met Jesus Mommy.  I was in the corner of the room and I walked to Jesus where it was sunny, and he smiled at me and spoke.  He told me that I couldn't stay, it wasn't time."  All I could do at that moment was cry and squeeze my baby girls hand."

     When I am having a bad day and feel like I just can't make it through I remember that sweet conversation with my 4 year old CHD child after her 4th surgery, and I thank God for letting her stay, and I thank Jesus for greeting her, comforting her, and returning her to me!   I will never be the same, nor will I ever doubt the power of faith!

Blessings until next time!

Drena

CHD Advocating!

      Who doesn't support their child in life?  I am sure no one, right!!!!!  How about advocating?  You say what's the difference?  Well....Supporting means willing to donate money, time, knowledge, as long as its a good cause.  Advocating is someone who speaks or writes in support of defense of a cause, or person.

     Advocating is so important for different causes, right?!  How else will you spread the word?  So why is advocating so important to me?  Congenital Heart Defects are!!!!

     My daughter was diagnosed with a severe Congenital Heart Defect (CHD) in utero, 12 1/2 years ago.  When my husband and I were given the diagnoses about our unborn child, I had absolutely no idea what it was, or what effects this heart defect would have on my child once born.  Sure I had heard about a lot of diseases, even childhood diseases, but nothing about CHD.  It amazed me to learn very early that 1 in EVERY 100 babies are born with a CHD.  It also blew me away to learn that Congenital Heart Defects kill more babies each year than all childhood cancers.  Even the weight of my child at birth has an affect on her life span. 

    How many parent to be, or new parents do you think about this? Not many if any at all I'm sure!   These were just a few things I discovered while pregnant.  As my pregnancy continued and my unborn child was diagnosed with more and more obstacles I realized something very important......How many more parents are going through this and are absolutely caught off guard and uneducated about Congenital Heart Defects?

     As my daughter has grown and encountered so many obstacles, health related and social, I have discovered she needs an advocate!  As her parent, I strongly feel that everyone needs to realize that children with Congenital Heart Defects may have some serious obstacles.  Some they many never be able to overcome, but if people aren't educated about this disease it won't ever be given the attention it needs and the funding for research to aide in assisting future Congenital Heart Defect children!  

     So I close with this very important question to you personally.  What are you advocating for, and how has it touched your life?

Blessings until next time!

Drena

    

     

The Sobering Truth!

    How many parents have thought about their child dying before themselves?  How many parents have had a sit down meeting with their child's doctor to be told about their child's life expectancy?  I have!  Let me tell you, it is the most gut wrenching thing I have ever experienced!!   It is something I never imagined in my wildest dreams would ever have to think about.  So my question...more to myself than others....how do you process the short life expectancy of your CHD child and carry on each day with this information?

     I look at my daughter each day and thank God for her and another day of blessing with her.  I must be a strong Momma for her, never showing my weak side, or let on that her time is so much more precious because she will likely leave me, our family, sooner than we'd like.  

     For years I have been in denial.  Cora is doing far better than her cardiologists would have ever thought, but things are still off.  That leak still persists, those moments of breathing troubles and blue lips still occur.  The palpations that come on from no where, creep up more often.   And that little cold seems to rear it's head more often.  I use to solely focus on keeping Cora cold free.  Without an immune system she takes risks each day she leaves the house. For that matter, each person she comes into contact with.  But for Cora it's  just another day as a preteen.  She knows something as little as a cold could be devastating to her, but she pushes forward.  I have been upfront about her setbacks, her oxygen stats, what a common cold could turn out to be for her.  But I haven't, and decided not to burden my 12 year old daughter with the discussion of premature death.  My hubby and I try daily to teach her about her faith and the trust of God.  The glory she is to him and us, and that someday everyone, including her will return to our home, with God and Jesus.  

     So to answer the question, how do you process the short life expectancy of your CHD child and carry on each day with this information?  I bury the knowledge deep down, I let my daughter be a kid, and put my fears, tears, and heartache in my faith, and the Most High God!!

Blessings until next time!

Drena

Emotional Roller Coaster!

     So the past few days I have been a little more emotional than usual!  I admit that I am getting worried about school starting for Cora.  Entering middle school is a big deal for any preteen/teen.  Adding the complications with learning into the mix makes the hurdles so much bigger!  When I start thinking about all the educating I need to do with her new teachers and pray they will hear me, and not disregard me as an overprotected Momma.  Well.....my heart starts beating more rapidly and a little voice of doubt creeps into my thoughts, and lately I cry!!

     Then there is the social part of middle school....oh dear!  I remember those days and how much I wanted to meet new kids, and make many friends.  It was challenging during my preteen/teen years and I didn't have any social issues.   Cora, well, she has the added hurdle of having social issues.  She is such a sweet girl but so very blunt.  She doesn't have a sensor to stop those things we all think in our head but KNOW we should never say aloud.  The result for Cora.......she doesn't have many friends who will put up with that, or the emotional ups and downs she has every few hours.  So what do I do? Is this normal for CHD children?  How do I coop?  How does my darling daughter coop? Has anyone else dealt with this with their children?  All questions that creep inside my mind when I pray continually!

     Even though Cora is 12 years old, almost 13, I still feel the need advocate for her in every single way possible!!  For some have looked at me half crazy, while others think I am way over protected.  I have even had a parent tell me they thought I need to back off and let Cora realize how cruel life is, that would then change her bluntness.  Even if I would do that, which I would NEVER do, her social issues are deeper than that.  This social hurdle isn't because she is being " hard headed", it is due to her Complex Heart Defect.  I pray for those who need educated on Congenital Heart Defects, and  I pray The Lord changes the narrow mindedness of many when it comes to understanding.  These are truly real conditions and hurdles not to be taken lightly!  To pass judgement on a child with a CHD is disturbing and warrants educating and prayer!

Blessings until next time!

Drena