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

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!

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

      

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!

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

     

     

Another Children's Hospital Appointment!

     Boy how time has flown by!  It is hard to believe it has been a year since Cora's yearly appointment at Childrens Hospital.  With her appointment just a few days away, I have begun gathering necessary items, and began  discussing with Cora what to expect.  Cora seems to do so much better if she is informed a bit in advance of her appointment and what is to come. Approaching it this way has helped reduce some of Cora's anxiety.

     Cora is such a trooper, since the time she was a baby, with everything.  It gets to me every time I listen to her talk about going to the hospital.  She has told me a million times, it's her second home.  That she feels safe, and not judged.  She says going to her visits make her feel like someone special.  Everyone knows her name and everyone is so kind.  Whether it's a 6 month appointment or a yearly appointment, the only thing she gets anxious over is the EKG.

Our last visit was difficult.  Cora cried after her EKG.  Her precious skin is so sensitive, and the stickies they have to put on her chest, arms, and sides are so painful coming off.  She always begs for me to be the only one to take them off.  As I do, I watch this poor little things body tense up as I work the stickers around her scars off.  She cries and tells me it hurts so bad!  I try so hard not to cry myself, because I feel so helpless.  Cora has expressed to me that she isn't looking forward to the EKG and asked if there was a way to skip it.  Unfortunately my answer is always the same......it has to be done sweetie!

     As I'm recalling this something has hit me.   Those strange little stomach churns, and a few restless nights were really my signs.  But getting that stomach churning feeling again I get it.  I am  nervous!!  I am nervous of what these tests may discover, I'm nervous more things have declined  over this past year.  I'm nervous I may have missed something being logged in her journal that could be of help to her cardiologist.

In just a few short days Cora will go through her normal testing.  She will have an echocardiogram, x-rays, and an EKG.  After all of the testing is completed and reviewed by her cardiologist, he will then meet with us and share the results.  For me that's the most difficult.  Listening to the new information, trying to process each piece of information given, then explaining it to my daughter.  As she has gotten older, she is more acute to what is going on with her health and her condition.  Sugar coating things isn't easy now, because my 14 year old warrior princess is getting pretty good at read between the lines!

     As Cora grows it seems to become more difficult for me to be strong.  I have always kept that strong outward image for my family as well as myself.  Beginning this blog has helped me reconnect with emotions I buried many years ago.  I have grown, and continue to grow and learn.  Thankfully God gave me a wonderful gift, writing.  The bonus.......God gave me the ability to share with all of you!  My friends far and near.

     So as this appointment nears, I will lean heavily on my faith.  I vow to also continue to strive to be open, sharing my emotions and the results of this up coming appointment.

Blessings Until Next Time!

Drena

Socially Awkward!

     Friendships...what came to your mind?  How many friendships do you have, and how easy were they to form?  For most of us, pretty easily I'm sure.  For the majority, this is something we learn as we grow, and learn through social situations.  Learning how to meet them, and grow them into lasting friendships, is so important as we grow as individuals.

     Believe it or not, for many CHD children this "simple" social interaction, is a huge struggle. They try to make friends, but the process just doesn't come easy.  The results for many CHD children is so sad.  Some are misunderstood by their peers, some are made fun of, and many have one or no friends at school.

     Let's take my Cora for example.  She strives to make friendships and share her giving personality.  However there is such a social awkwardness she faces daily that keeps her from friendships at school.   Cora can't read facial expressions or body language given off by others.  She doesn't realize when enough is enough, or even when she has gone to far.  She tends to try to hard by exaggerating the story, just hoping for one friend.  Just one person to befriend her and chat with her daily.  This creates frustration, impatience, and dislike in her peers, that leads to de-friending my daughter.  Everyday my daughter awakes for school asking me not to go.  She tells me she try's so hard to make friends but she fails everyday.  I can see she is lonely, looking desperately for some kind of friendship.  I watch her get so frustrated to the point she breaks down, begging me to please let her stay home.  It breaks my heart every time.  Every part of my being wants to cuddle, hold, and cry with her.  The years of protecting Cora has become harder and harder.  I know I must loosen my Momma Bear grips to let her learn and explore, but it is so brutal to feel her pain every single day....praying every night that God will magically place a patient person in Cora's life who truly wants to be her friend.  Who can get past her health and mental issues, and just be a kindred spirit friend!  I just simply can't imagine what it's like for her to face yet another obstacle...even one like this, that I take for granted.

     So what do I do?  I wish I had a magical answer for my sweet CHD daughter.  I wish I could tell her everything will work out.  But honestly what teen wants to hear that?  What person, teen or adult, who knows she has social issues wants to hear things will get better.....eventually?  So what our family has begun to do seems to bring a little sparkle to my sweet daughter's eyes.  My hubby and I spend much time with her role playing.  Showing her how friends interact, how body language and expressions are hidden signs.  We have discussed as a family behavior therapy, which will be two fold for her.  It will give her a chance to express her raw feelings, and it will be filled with teaching moments for her.  Other than that we are still learning as we go.  

     If there is one thing I try to remember each time I become overwhelmed is "The Lord will guide you continually." Isaiah 58:11.  I may not always see the results I pray for immediately, but I know I, and Cora, will be guided continually!

Blessings Until Next Time!

Drena

Starting A New Year!

     Happy 2015 to everyone!  As the new year begins I am reflecting back at 2014.  My discovery on the journey reflection has been eye opening.  I debated whether or not to write a blog post about this for some time now.   All along praying for guidance.  I feel like I have been given the ok to share this insight.   To share the importance, and big lesson I received last year with each of you.

     For myself, as I'm sure for many, 2014 was a challenging year.  My family faced many trials and tribulations.  Through this process, God has taught me a great deal about myself.

In 2014 I have experienced many emotions.  Frustration, sadness, elatedness, sorrow, pure joy, wickedness, helplessness, anger, doubt, disappointment.  I'm sure there is more to add, but you get the point.

     But through all these emotions I've experienced, there was one constant that remained throughout it all.  GOD!!!!  Every bump and set back I encountered this past year I was shown light somehow at the end of that tunnels journey.  The emotional roller coasters I encountered last year were learning moments God shared, armed, and walked me through.  Some of them I must admit I believe God carried me through.  Non the less, I didn't face each challenge alone.  Without my faith who knows what different wrong paths I would have faced in 2014.  

     So my reflection revealed something eye opening to me!  In my darkest moments God is present with me.  Breathing and building faith within me!  When I fall, it just enough to remind me I need to lean on my God......our God!  When the brighteness shines in my day, through my children's eyes, that's God telling me......I made it!!  I made it because God's love never fails or gives up!  

     My resolution for 2015..........another year like 2014 is ok with me!  I will continue to learn to welcome, and deal, with all the emotions I encountered in 2014.  I know God will be there walking with me through them, or carrying me!  Either way I will see the light he wants me to see, at the end of each of those journeys!  So welcome 2015!!!!!

Blessings until next time!

Drena

Fragile Emotions Part 3---The Diagnosis!

     As I sit down to write this post I am still processing everything.  It has been a little over a week since my husband and I met with Children's Hospital clinical doctors and discussed the new discoveries and diagnosis for Cora.  

     To be honest I feel some sadness.  I look at this young lady, my sweet daughter, and try to envision what her world must be like daily.  Knowing I can't take away all the issues makes me feel some days well........like I am letting her down as her Momma.  Now we come face to face with more obstacles and hurdles.  Recently learning as she continues to get older these obstacles and hurdles will grow with her.  So what is a CHD parent to do?  I pray!!  Depending on God to supply solutions, tools, faith, strength, and courage for Cora and us.  This is the only way I know.  Tackling life with Cora has been a challenge from the day she was born, but without our faith we would be lost souls meandering through life!

     So many of you know Cora's original complex birth defect and diagnosis. ( If you don't feel free to check out my post titled Cora's CHD Complex Diagnosis). Her list continues to grow as she gets older, and the challenges to teach her how to cope are more apparent.  I only want the best for my girl, but I have felt so overwhelmed with what has been put on our plate.  Just recently have I been able to sift through each piece and really get a hold of it and what it really means for Cora.  I stress this because though it may not be a big deal for someone to read her additional diagnosis living day in and out with an inconsistency can take a toll on each individual and a family as a whole.

    With all that being said I open up our lives once again to share in hopes that as Cora and I face these things together you will journey with us learning and spreading more awareness.

Cora's additional diagnosis:

Severe Anxiety Disorder:  This is layered. It involves academic, social, and daily executive functioning.  So the best way to explain it is she has anxiety all the time but is easily heightened in the above situations.  My poor girl hasn't learned how to cope with this but has faced it everyday for quite some time.

ADHD:  This was diagnosed last year.  However results from her recent testing, at Children's Hospital, indicated it has increased in intensity daily for her.  Resulting in additional issues.  For example more difficulty focusing on tasks at hand and following in pace with the class.

So now what you ask?  Now we educate Cora and ourselves so we can learn the treatable ways to help her.  We pray for guidance and mercy.  But above all else we show Cora love through patience, guidance, and lots of hugs and kisses.  This new chapter is just beginning and you have my word I will document and share out steps and journey together with each of you.  The more educated we are, the more we can help others.

Blessings until next time.

Drena