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

Sister Bond!

     I share a lot about what Cora goes through daily being a child with a complex congenital heart defect.  However I haven't spoke much about how it effects her siblings.  They live with a sister who bears a lot of difficulty, but to them this is all they know. 

     It must be difficult to be a child who sees her older sibling receive so much attention.  To be on the end of wondering if Mom will have time for me, or when will I ever get alone time with my folks?  It must be frustrating to bear the stress burden pushed off onto them accidentally.  Days when I'm at my whits end, I know I'm short fused and expect more out them.  For that I feel terrible.  As a Momma who love her children dearly, I never want my children to bear my burdens, my stress, my disappointment.  Unfortunately being an imperfect person, brings the inevitable truth that I expect more help and understanding some days from them.  I am saddened to see the disappointment upon Cora's sister's faces when I fail in this department.

     

     I recall one time, my middle daughter verbally wishing she had something wrong with her.  I stopped instantly in my tracks, mouth open and asked why she's ever wish such a thing.  Her answer broke my heart!  She felt that if she had a heart defect, I'd have to make time to take her to the doctor and she would then finally get alone time with me.   HUGE wake up call for me!  Moving rapidly through my days and nights, thinking I have found a system of juggling it all, was an illusion. Reality is I haven't found a system to nurture the special one on one time with Cora's sister's.  

     Through the rough patches my girls amaze me.  They are there to help Cora and me, most of time acting selflessly.  They are the little reminders for Cora.  The little nurses when we need extra hands, or just a few minutes break.  They become teachers at just the right moments.  They encourage when moments of keeping up with the crowd occurs.  They share a bond as siblings that make me cry.  As much as they disagree, and fight like sisters do.  They also have a bond that will stand the test of time.  Cora's siblings will help hold her up when she can't hold herself up.  They have been her "pick me up" when darkness has set in, and they have unconditionally loved a CHD sibling, as if she was perfectly healthy!  That my dear friends, is a SIBLING BOND only God can create!  Finding a balance will continue to be a work in progress for me.  But seeing Cora's siblings demonstrate patients and understanding so often, just astonishes me.  And that reason alone, I remember to give praise and honor even during the moments I'm ready to have a breakdown!

Blessings Until Next Time!

Drena

      

What If?

     When I sit and talk with folks, sharing information about CHD, I always make a point to share a little bit about our families journey.  I go through the list of Cora's diagnosis and answer any questions I can.  I am pretty versed in her multiple diagnosis'.  So much that most of the time I ramble them off not thinking!

     I recently was on Pinterest and read something that made my mouth jaw drop!  I read it again and gasped.  As I let the words sink into my head, a realization within occurred! A light bulb went off, and then the guilt began to creep in.

     Over the years there has been so many complex diagnosis' for Cora.  Each one stemming from another.  All coming together pointing to her original diagnosis....a congenital heart defect.  As time has passed I have noticed changes that many probably don't.  I have gotten so use to tallying them up to a side effect from a diagnosis, I just note it and move on.  But maybe I have been to quick to make those calls. For many I'm sure it appears that Cora over analyzes some situations.  Double, sometimes triple checking things.  Going down the check lists, mentally marking them off with each question she asks.  While other times it's a conversation about the what ifs of life and how to be prepared. To many it may seem like making a mountain out of a mole hill, but I can sympathize because I can relate.  This is one of the many traits that make Cora so unique.   

     After reading this statement on Pinterest, I discovered something.  Cora's over analyzing the what ifs, fits me to a tee!  Maybe her unique thought processes don't stem soley from her CHD. Maybe some of the over analyzing genetically came from me.  

     Now I really have no idea if it could be, or even if that's possible, but maybe it is! I analyze situations so much!  I'm frightened I won't be prepared if that something or things actually happen.  I have mentally done this from the time I was in elementary school.  Some of my worst fears growing up were not being prepared for something...anything really! So I analyzed everything in every possible scenario just in case.  As I've gotten older I have adapted, but the thought processes that analyze the what ifs, are still there.  It is amazing that I have never thought anything of it, until I read the statement on Pinterest.

     I will make sure to share my discovery with Cora, and assure her that there is no shame in her unique thought processes that analyze situations.  Together we'll have to learn to find happy mediums in our lives.

      My lesson is so profound!  I must learn to never be to quick to draw a conclusion.  Sometimes the most obvious answer, is the wrong answer!

Blessings Until Next Time!

Drena

     

Her Revived Heart!

     Life can be filled with many joyous moments.  They can lift your spirits and give you hope.  Life can also be challenging and overwhelming.  One thing I have learned being a parent, you are never prepared for either.  Sharing the joyous moments with your children are easy!  Seeing them shine and take in life, blissfully, is all any parent really could want.  However those painful challenging moments, well they are so difficult to maneuver through with your child.  

     A while back our family went through a rough period with Cora.  Everyday was a sad day for her.  She was angry one minute, and then very upset the next.  Parenting through this time was difficult.  It doesn't matter how many books I've read, or who had solicited their advise, I was struggling.  I wasn't prepared with insight or answers to help her through her hardship.  Laid in front of me was a simple question from my CHD child, and I was a deer in headlights!  Please understand, this isn't easy to admit.  It's not pleasing to admit the fact that I fell short being there for Cora at a moment she truly needed me.  None the less, I feel it important to share.  

      Her simple question.....Why did God make her this way?  Why did she get all the issues with her heart, her learning, and her different anatomy? 

     At the time I was speechless.  I had nothing to offer her but a hug, and a shrug of the shoulders.  Unfortunately I felt like a failure.  I am suppose to be the Momma who has all the answers, who can make anything better.  But.....I did none of the above.  Praying each night I asked God to show me the way.  To quickly bless my mind so I could go back to my baby girl and give her some peace.  Waiting for some sign of inspiration to share with Cora, I searched high and low.  Then one afternoon as I was driving I received the help I needed!

     All kinds of scripture was going through my head, some I have never even read.  One in particular stuck.  Overthinking, as I often do, I thought I had to have seen it somewhere before.  Pushing that thought aside, I kept repeating it in my mind.  I continued resighting it so I wouldn't forget.  The moment I was able to look it up and read it, I knew God was giving me this verse to aide in parenting Cora.  Ezekiel 36:26 states "I will give you a new heart and put a new spirit in you."

     With that verse fresh in my mind, I shared it with my daughter.  I expressed that we may never truly know why God does the amazing things God does, but he has his reasons and we have to embrace them. The Bible says that He will give you a new heart and put a new spirit in you.  The heart you were born with had its flaws and was needing repaired.  That was God's way of giving you a new revived heart, and a new spirit, that has molded you into the perfect person you are right now!  I can't tell you life won't continue to be hard and sometimes sad.  I can tell you God only has the best for you.  We may have to look a little harder sometimes to find it, but God wants you to always receive his glories.

     I have no idea if any of what I shared with her sunk in, or made much sense to her.  However it was a wonderful reminder to this CHD Momma who faces mental battles sometimes, and wonders some of the same things Cora does.  Hopefully in time God's hand in molding Cora will show her the beauty of why she is the way she is.  Perfect in God's eyes...and mine too!

That Little Soapbox!

     I am not one to let what others say about having a CHD child effect me.  I usually chalk it up to an educating moment.  I understand that CHD isn't in the spotlight like other defects and diseases.  So I try to be more patient when someone wants to tell me why they think I birthed a child with a Congenital Heart Defect.  

However over the past few months I have conversated with some folks that have flat out accused me of this or that.  These folks have implied If I'd taken better care of myself during pregnancy, she wouldn't have been born "messed up."  At those particular times I was so devastated and hurt to the core, I simply walked away.  I said nothing, walked away and let tears stream down my cheeks.

     Unfortunately a bit of time has passed and it is still bothering me.  I so wished I would have stood tall to these folks and spoke the truth.  Even at the risk of exposing my emotions, and letting someone witness the tears streaming down my face. 

So to help myself gain closure I will say what I should have, and wanted to say during those moments.  

"I appreciate your theories but, let me take a minute to help define a few things.  I did everything by the book, during my CHD daughters pregnancy!  I DO NOT smoke, I DO NOT drink, I ate the best foods I could when I wasn't suffering from nauseousness.  I DID NOT take any medications, except my prenatal vitamins. I AM NOT obese, I AM NOT diabetic, and I DO exercise several times a week.  

So you see your theories of congenital heart defect children being born to Mothers who don't take care of themselves due to this reason, or that, is completely inaccurate!  So I'd appreciate it, if you'd educate yourself before you start making judgements, and preaching to me that her defect is somehow my fault!"

     Thank you for letting me clear myself of this.  My hope if someone, someday, has a conversation on this topic you can pass along some facts.  As I've said before.....we all need to constantly bring awareness and education to people about Congenital Heart Defects!

Blessings Until Next Time!

Drena

Pick Up Day!

     As I pull into Heart Camp, I am so excited to see my sweet girl!  Her fun filled week at Heart Camp has come to an end!  As I park, I hope she'll be excited to see me, and give me a giant warm hug. 

     Luggage and medicine are first on my pickup list, afterwards it's off to pick up my little blonde.  

     Finding myself walking quickly back from the car, I have reached my destination.  Pushing the door open I'm consumed by the noise of heart kids everywhere.  My eyes start darting around looking for my sweetness in black framed glasses.  Heart a pounding, smile plastered on my face with anticipation, I found my target.  Observing for a minute, I see her glowing face.  She is laughing, talking, and bonding.  Her demeanor is different.  Her body is relaxed, she smile doesn't look forced, and the group around her is receptive to her.  Still standing there I am in awe of my sweet girl, and so happy to see her surrounded by acceptance!  I realized that for the first time, I am truly witnessing my daughter being a typical teenager.

     With the typical teenager in full effect I am not received happily.  Yep, no giant warm hug, no hey Momma happy to see you.  Nope, I get a why are you here? I'm not ready to leave!  Let's just say the next 30 minutes were not fun for either one of us.  Watching her eyes swell with tears as she hugs each gal at her table, and saying goodbye, I see she is saying goodbye to more than her friends.  She's parting from her comfort, acceptance, and her normal.  And entering back into the abnormal, judge mental, difficult day to day life.  Observing this makes my soul ache.

     I know I've said it a thousand times, and will continue to say it until my last breath, but Heart Camp is my daughter's saving grace.  This camp brings rejuvenation and spirit into my daughter that is clearly lacking the rest of her weeks.  I so wish Heart Camp could be more than once a year.  To see her emotions sore during this week makes me so joyous!  I may not be able to provide this missing link, I so wish I could, BUT I can give her a special week each summer to sore!

Blessings Until Next Time!

Drena

A Week Without!

     A week without my Cora!  It should be a week to take a deep breath and relax just a little bit.  It should be my week to not worry about all things related to Congenital Heart Defects.  With Cora off enjoying her time at Heart Camp, I should enjoy the break!  Right?....WRONG!

     Instead I miss her terribly!  I find myself looking out at the swing set to see nothing.  That sweet little smile as she swings for hours, listening to her iPod has vanished.

     Now I know Heart Camp is only a week, but it started me pondering the what ifs.  What if my Cora wasn't around anymore? The hole in my soul would be constant.  What if our lives had to carry on without her?  I don't think I could bear it.  Sure she is a lot of work, but she is such a reward too.  Thoughts spiraling into sorrow.  Sorrow that I would even think about this.  Sorrow for CHD parents who have lost their sweet CHD child(ren).  I know I don't know exactly what you have gone through but my heart aches the same.  All those overwhelming moments during my day are missed just a little bit.

     Silly as it may sound, I find myself checking Facebook multiple times a day to see if any knew camp pictures have been posted. Just to see what her day has entailed, and to see if she may be in a picture or two.

     Each year she goes to camp is a reminder.  It reminds me that through all the hardships, crazy moments, ready to pull my hair out days, I love my Cora to pieces.  And I wouldn't change one thing about our journey together!

Blessings Until Next Time!

Drena 

4 Things I Learned Advocating For A CHD Childs IEP!--Part 2

    Even though my CHD daughter, Cora, has just finished 8th grade, I am still advocating for her.  In doing so it has required knowledge, patience, and a stern voice from myself.  So why share? Simply because our school journey has been a battle.  We have been through the school of hard knocks.  Many times I have been left wondering where and what do we do now!  I have learned some valuable lessons on advocating for a child with a heart defect. I have discovered along the way, that IEP's aren't really catered for special needs children with heart defects.  I have learned that educating teachers on Cora's obstacles is a necessity every year, and then throughout the year.

     I didn't have support when Cora began her schooling, not like the support available today!  I was one parent, unarmed, meeting with school board members, teachers, and the principal.  There was so much I didn't know, and felt like I didn't have much say in the direction of Cora's education.  As the years went on, I would attend these meetings with more and more knowledge.  However I wasn't ever listened to, or taken seriously.

      I recall one specific meeting when I was told, point blank, that they were the educators and I needed to let them do their jobs.  At that moment, I realized I was never going to be heard.  I was always going to be looked at as an over protective Mother.

  As Cora gets older class settings are constantly changing.  More classes, teachers, and responsibility.  For Cora it is stress, concern, and anxiety.  For me it is a time to put all my ducks in a row and begin educating all her teachers about her current IEP, and her additional diagnosis through Children's Hospital.  Is this easy?  Absolutely not!!  It is literally starting all over as if they don't know Cora.  It is spoon feeding information to the IEP teacher, as well as her individual teachers.  It is being patient yet stern at the same time.  It is listening to 6 teachers try to tell you they know your child better than you, and what will work best for her education.  IT IS EXAUSTING!

     That being said, I have found my footing during this very difficult and bumpy journey.  I have learned things that have helped Cora and the teachers connect.  I have learned that I have to speak loudly, patiently, and steadily.  I now have assistance from Children's who goes to the IEP meetings with me, and together we educate them and make them listen, for Cora's sake.

     So if you have a heart child in school, I have a few lessons I'd like to share that I've learned along the way.  Maybe one will assist you as you advocate for your school age heart child!

1. If you feel your child is struggling, speak up!  Make it a point to get with their teacher and express your concerns, and ask for an evaluation.  Be persistent, they may dismiss you at first.  The sooner the ball gets rolling, the better educational chance your CHD child will have.

2. All evaluations, diagnosis papers, special needs issued by doctors, need to be given to the school at least a month before school starts.  I have copies that I give to the Principal, the IEP teacher to be, and once I get Cora's schedule, I send copies, I've scanned, via email to each teacher.  The earlier they have her records to review, the better they will be prepared for your child for the new school year. 

3.  Stay in communication and continue to be a hands on parent all year! I communicate at least twice a week, with Cora's IEP teacher.  I also send a monthly email to each of her teachers. I do this for several reasons.  

      A. To keep the lines of communication open, always.

      B. Checking in on any changes in school work, and classroom behavior.  I also use this time to inform the teachers of any behavioral changes at home, or concerns Cora has brought to me.

4.   Don't be afraid to communicate if the IEP isn't working.  This past year we had multi meetings to make changes to Cora's IEP because, certain goals put in place just weren't working for her. I know I may have agrivated her IEP teacher, but it's my duty to make sure Cora doesn't grow  stagnant in her education.

I hope these little insights were helpful.  If you ever have any questions or concerns about your IEP don't be afraid, or embarrassed, like I was.  I'd be happy to help you in any way I can.

Blessings until next time!

The Angst Within!

    Countdown to Heart Camp!  For the last two months, the majority of Cora's conversations are about her excitement for Heart Camp!  As time draws near, her excitement is getting more difficult for her to control.  Other facets of her personality start to creep in.

     I have gotten use to reading her personality signs, and most of the time I can identify when things start to escalate in her little mind.  It is wonderful to see my Cora's excitement for summer camp.  Her excitement includes being with other heart kids that won't judge, to having a week to be with children who can relate to things other heart healthy children her age may not.  But along with that excitement, I start to see the angst in her eyes, and the tone of her voice change.

     I see her anxiety start to over rule her excitement, and her body posture begins to change.  Then....the what ifs begin.  What if I have that counselor from last year who yelled at me all the time, and said horrible things to me and my friends?  What if the heat is so bad Mom I can't breath well?  What if I collapse like the girl did last year?  What if it storms really bad?  That this point it becomes my job to take hold of the what ifs, and bring Cora back to the simple positives.

Once the focus has changed back to the fun of heart camp, and what it means to Cora, we are back on the excitement train!

     I believe, for Cora, Heart Camp is like her home away from home.  I believe she looks at heart camp as her place to be her raw self, and not be judged.  I believe, for her, it's a safe place to share things she goes through, that she doesn't even share with me.  I believe that without Heart Camp, their would be more sad days, followed by more anxious behavior, and depression.

     I wish I was powerful enough to wipe all the anxiousness from Cora.  I wish I could tell her that all those what ifs would never happen.  I wish I could make everyday Heart Camp for her, but I simply can't!  I can however give her one week to flourish!  One week where her spirit takes flight!  I can give her Heart Camp!  

     So thankful for Cincinnati Children's Hospital and the wonderful folks who put together this one magical week each year!  Our family, especially Cora, wouldn't be the same without this glorious Heart Camp!

Blessings Until Next Time!

Drena

That Little Nudge!

     While I was pregnant with Cora, learning of her Congenital Heart Defect, I made a decision!  I knew this baby would be my only.  I just couldn't live through another pregnancy with the possibility of having another CHD child.  I couldn't bear to bring another child, fighting so hard, into the world.  I was determined that no matter what, boy or girl, she was my one and only child!

     Fast forward in life, and guess what?  I began to feel God laying before me options.  Options to think about adding another child to our family.  I was very hardheaded and didn't want to listen to the suddle hints.  I recall declaring to my husband, God would have to shake me silly before I would ever bring another baby into the world. 

     It is so sad to look back at this me.  I was so frail and young in my faith.  I thought I made all my decisions and, my way was THE way. I truly believed everything rested in my hands.  My family, and the entire world rested on me to take care of everything!  I'm so grateful God didn't give up on me then.  I'm so grateful God continued to mold and educate me.  I'm most grateful that God taught me the importance of leaning on him!  

     So there I was, middle of the night, sleeping soundly.  Cora was a couple years old now, and I was a hot mess of a CHD Momma.  But, I leaned heavily on Jesus, and began my journey of prayer.  So out of nowhere I had a conversation with God in my sleep.  Honestly I listened without saying a word.  That was the first time God spoke to me, and.....I actually heard him.  I remember my eyes popping open, clock read after 2am, and I began shaking my hubby's arm.  I could the words escaping from my mouth, and that little part in mind was saying, huh, what, am I recalling correctly?  Did God really just speak to me and give me these vivid details?  By now I was sitting up and about ready to explode with information.  I preceded to tell my hubby what I was told.  Smiling I informed him, it was ok to grow our family.  Our baby would perfectly healthy, no heart issues at all, and.......it would be a girl!  Sure enough time passed and all the extensive tests were done, and guess what........our baby was heart healthy, and a girl.  All I could do was smile at my hubby and say "I told so!"

    To this day I hold that moment with God dear to me.  I would walk the world sharing my moment with God, to give people hope, to share that God does more than just exist.  God feels, God hears, and God loves us.  Oh yes, I still fight this mental demon!  My mind still stumbles and I begin thinking everything rests in my hands.  That I must carry everyone in my family, and be the strong pillar that has all the answers, and everything under control.  But my daily prayers, and Jesus' arms to guide and carry me at times, that demon would take up permanent residence in my mind!  I believe with all my being that God gives us that nudge when we need it, and if we are open enough, we will hear him!  Some of the smallest moments are God's greatest!

Blessings Until Next Time!

Drena

A Giant Milestone!

     Sitting in the middle school auditorium Thursday morning I felt tears well up.  I was so overcome by excitement and pride for Cora.  This morning I was going to witness my 14 year old, CHD, daughter accept her middle school promotion certificate to high school!

     Knowing all that this sweet thing has overcome I was overflowing with such pride!  As I sat there observing a giant milestone in my daughters life!  Knowing she had less than a 30 percent chance of life after birth, I look at her sitting in the crowd of 8th grade students and praise Jesus!  To hear her name called by the principal, to hear students clap and Woo Hoo, and to see my miracle walk across the stage to accept her certificate, I couldn't help but cry.  I clapped and snapped pictures through my tears.  I was so proud of Cora!  It was truly an accomplishment I didn't think would happen!

 I hope as she reflects back upon this day, she sees her own accomplishments!  I pray she sees that all the difficult days, and moments when she said she wanted to give up, are floating thought.  I hope she remembers that she didn't give up, and God never left her.  This is her accomplishment!  She has accomplished something so wonderful, something so extremely difficult for her, something so many of us take for granted!  She accomplished elementary school, and middle school.  She may not have been an A student who was on the honor roll all year, but in her Dad and my eyes that doesn't matter!  As long as she strives hard, puts her best effort forward, and doesn't give up.......that's honor roll A's all day long for us!

Great job Cora!  Keep pushing yourself!  As I have said before baby, God has special plans for you, believe in Him, he won't steer you wrong!

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

Outfit Of Strength!

   Being a CHD Momma seems to add pressure undiscovered daily!  Everyday I try to put on that outfit of strength.  I walk out my door ready to greet the world in my wrinkle free armor of strength, however within seconds....I feel like I've been stripped of my strength and invaded by the harshness of life!  I'm now standing at the door completely exposed to the world.  I'm fighting a battle every second of my day, unarmed and falling to pieces.

     It seems to begin early in the morning with Cora forgetting to take her medicine.  Reminding her constantly makes me feel like a nag. The kind reminders have now become loud lectures!  We are steps from being out the door and the discovery that she still didn't take her medication is realized.  That sets the dominos falling!  Now a homework assignment is just remembered and, of course, incomplete.  Of course, then it snowballs into the discovery that the lunch box was left on the kitchen table, not once but twice, and we have to beat feet back into the house.  This then triggers the, I need something else but it can't be found.  Then the the icing on my already crumbling cake.  An anxiety attack within Cora starts.  It's like the boogeyman is lurking around each corner, waiting for me!  He knows he can instill fear, and I can feel him trying to break me down.  He's prowling around trying to see how far he can push me until I break.  Quicker than a blink of an eye, reality hits, BOOM!  

     Now the stress of juggling everything is in full swing.  I must keep everything flowing so we don't run late for school.   I have to work with Cora during her anxiety attack, get the lunchbox from inside, keep each daughter moving forward, and somehow find a way to get her assignment completed within the next 27 minutes.  My armor of strength has disintegrated, and I'm barely hanging on!  The worst part, it's only 7am.

    I wish I could say everyday doesn't go this way, however that would be a lie!  Some days are far worse than others, but everyday is a struggle.  Everyday that strength of armor gets ripped, and I am beaten and worn down by the world.  Many nights I pray for rejuvenation and healing of my strength.  I beg for better ways to improve our mornings, and give praise that I seem to juggle it all and make it through.

  I get that everyone has their life's roller coasters rides, but lately I feel like I live on one.  Every time the ride stops the bar doesn't move and....I  simply can't step off the ride.  Quicker than a blink of an eye, reality hits again, BOOM!

     Motherhood is challenging yet reward within itself, but honestly there have been days that no matter how many prayers I pray, no matter how many self pick me up talks I have to do during my day, there are times I end my day deflated and beaten.  Despite all this there is still a silver lining for me!  God wakes me the next morning for another chance to be better, in everything, than I was the day before!  He breathes new hope in me, and believes in me!  So I shall rise tomorrow, wearing my armor of strength and see what the world awaits for me!

Blessings Until Next Time!

Drena

     

Finding My Voice!

     Writing is so very important to me. It is my voice! It is the one place I can go to express my everything that vocally I fail at.  I have been very timid for years about sharing my feelings through words.  I have always second guessed my writing ability, terrified to expose myself, fearing criticism and shame.  Then God gave me Cora!  He began preparing me for being a special needs Mom, and along the way he shared the talent he instilled in me.  Crazy I know.....but true!

     Writing this book about Cora and our journey has been torturous, scary, fulfilling, rewarding, and exhausting.  Unburying years of regressed emotions has been liberating, as well as horrifying.

This book has been a 14 year journey that started out through journaling.  This journey has given me hope, strength, confidence, and......a voice!  I have begun to see God's work within me, and I realize there is no need to fear!  I now know the talent God gave me is writing!  I know this because when I write I feel my soul shine, and a happiness that's unexplainable overcomes me!  To see words creating sentences, that creates a story, that educates some, and helps others escape, it is very liberating.  It is sad to admit that I've listened more to the Neh Sayers than God all these years. Discovering this talent and knowing what I write could educate some, bring comfort to another, or answer a single question, brings me peace.

     

I'm so proud to announce that I am in the finishing stages of my first book about Cora, and our families Congenital Heart Defect (CHD) journey.  I have battled 14 years of doubt, confusion, sadness, and pure fear!  But.......over those years, God has been molding me, my writing, and my voice!  I am still learning to trust when I can't see, learning to block out the negative noise of others, and listen to the inner voice God instilled in me.  I am slowly releasing my grip to allow God to guide and protect me!  In a way I am taking a giant leap of faith.  Fearful as I may be not following Gods plan for me would be denying Gods gift, and then I just wouldn't be who God has planned me to become!  So..I sincerely hope that each of you will leap with me and read my book upon completion!  It educates, and reveals so much more than one would ever expect!  

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

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