CHD-My Foolishness!

     I am constantly driving home that being a CHD Momma is difficult.  Emotionally it is exhausting. Well confession time...the moment I discovered I had a "non-typical" pregnancy I was a complete emotional train wreck. Good Lord, I couldn't function from day to day.  Seriously, functioning minute to minute was a struggle every single day. 

     I was so foolish! I was praying for a baby boy.  Not for a healthy pregnancy, or even a healthy child, just a baby boy.  Then I'm told that this child I'm carrying has all these issues, and this cardiologist who is an expert on high risk pregnancy informs me that having a baby girl would increase the chance of survival.  Knowing at this point the babies survival rate is less than 30%, having a baby girl would be best.

     So now I'm frantic, been praying for the baby to be a boy.  Would God forgive me for pleading for a baby girl?  How foolish of me to have been thinking this entire time of myself!  Focusing only on this baby boy I have always wanted, at times praying to please not be a girl!  I was embarrassed and ashamed.  God had to think I was a nut, for that matter, I myself believed I was a nut!

     Still frantic, I pressed on begging for a girl and asking for forgiveness along the way. Deep down hoping I could forgive myself for being so foolish, and praying the baby I was going to have wouldn't be ashamed of me for my selfish actions. 

     The moment of birth came, and God heard my pleas.  I gave birth to a baby girl.  She was the most beautiful baby girl I had ever seen.  At that moment I knew I was meant to be a Momma of a girl.  

     This girl, my darling15 year old daughter, has overcome so many hurdles and continues to keep

shining through them all. I look at her sometimes, and still feel that guilt I had so many years ago. How I could have ever imagined not having this little girl, my little girl, is simply unimaginable. 

     So as I stand before you, I confess that I have begged and pleaded for things during that pregnancy I never should have.  I was selfish, foolish, and at times ignorant.  I am so grateful God saw past those things and still blessed our family.  I am truly blessed to be a Heart Momma of a little girl! 💔❤️

Blessings Until Next Time!

Drena 

5 Reasons I Celebrate CHD!

     Everyone hears that everyday is a reason to celebrate, right?  It is a day God has given us to make a difference.  A time for each of us to share God's son's story through our life. But how many CHD Parents, do you think, have said: Hey lets embrace and celebrate Congenital Heart Defects today?  My guess, NONE!!  Oh but there is my friend!  There are so many reasons to embrace and celebrate Congenital Heart Defects each and everyday!

     I know it sounds silly, maybe even a little crazy, but stay with me.  Let me share 5 special reasons why I have embraced and continue to celebrate having a CHD child!

1. I wouldn't love as intensely as I do!  

2. I have learned to embrace and celebrate every small victory!   Without having a CHD daughter this wouldn't have happened.  I would have continued being a big picture only kind of gal, and miss out on all the beautiful small blessings!

3. I have learned to not wish away the moments I'll probably want back one day. Good or bad they are moments special to me, that have in turn assisted in me being a better, more congenious Heart Momma.

4. I have found peace.  Sure days are difficult and sometimes I struggle to make it through, but, looking at my 15 year old heart daughter.....I find peace.  She keeps me grounded and pure!  Without her, my journey would be troublesome and lost.

5.  I'm aiding in bringing awareness on this scary and life threatening defect!  Even though my part may be small, I believe sharing our journey helps raise awareness in some way to another.

    I'm sure there are more reasons to celebrate, but these are five that I hold close when we have our rough days.  Those moments when we feel we just can't put one more foot in front of the other!

     I have learned to embrace having a daughter with a Congenital Heart Defect. Not because I have to!  But because I was lucky enough to be chosen by God,  to be her Momma!  That alone, to me, is a reason to celebrate!

Blessings Until Next Time!

Drena

A Mighty Journey!

    One step forward and two steps back.  This is something my daughter has struggled with since her first breath.  Seems like there is always a stumble in this sweet child's day.  

     So one of the major things Cora has been dealing with, as she continues to grow, are migraine headaches.  The headaches for my CHD daughter, are just so crippling for her.

     

     Her migraines started rearing their awfulness, when Cora was in the 3rd grade.  At first they were fairly far and few between.  However as she continues to grow, they have become more frequent and more difficult to manage.  They begin with sensitivity to light, then her temples and very back of her head begin pounding.  Then the uneasy stomach begins, accompanied by dizziness.  The pain and pressure becomes so intense that Cora is sick to her stomach.  After several very intense hours, and multiple vomiting episodes, her migraine begins to subside. But the process has already taken its toll on her, and she is exhausted. 

     There are no words to explain how horrible it is as her Momma, knowing I can't make her pain go away. Due to Cora's heart condition, traditional headache medications aren't an option for her.  The side effects they would have on her heart just aren't worth the risks.  So we are left with very limited options.

     We recently have identified some trigger areas that start these migraines into motion.  The biggest trigger we have found associated with Cora's migraines is the heat.  Being outside like normal kiddos for hours at a time, in the spring and summer, isn't something Cora's body handles very well. She gets over heated easily, and has a hard time breathing.  As the humidity grows higher and higher, the probability of Cora getting a migraine drastically increases. The combination of both, builds the pressure in her head to the point that she goes from no headache to an instant, intense migraine. Cold packs, and cool washcloths over Cora's eyes and temples, seem to bring a small amount of relief to her.  However until she can release the pressure build up, always by being sick to her stomach, the intensity stays put.

     Lately though, her migraines have changed their standard course, and she is suffering them during the winter time as well.  We haven't figured the trigger for these, so we will continue to journal each episode, as her Cardiologist has suggested.

     Unfortunately I still find myself hovering over her more than I should.  One of my biggest fears....a full blown migraine will arise debilitating Cora, and I won't be there to help her.  It has become a very challenging and delicate balance for myself, to let go.  I realize she's 15 but....well how do I say this.......I want to continue to protect and shield her from everything!  I know that coddling her will only prohibit her ability to function independently, but I have been very protective of her since birth.  

     As Cora and I continue our journey together, we will need to lean on each other.  I will need to find a delicate balance of knowing when to open my arms to let my baby sore high.  For my daughter, I pray she will be patient as her Momma stumbles to find her own way. One thing holds true.....Our journey together will be mighty!

Blessings Until Next Time!

Drena

 

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

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!