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 

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

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!

That Little Nudge!

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

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

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

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

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

Blessings Until Next Time!

Drena

A Giant Milestone!

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

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

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

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

A Little Spunk!

     Driving down the road with Cora she asks me to turn up a song.  As I do I see her straighten her back and sit a little bit taller.  Listening, I hear my daughter sing every single word with conviction.  She sang as if she felt every single word to the core.  As the words continue to fill the car, each sentence sang touches my heart.  This song is more than just an awesome song for my 14 year old.  This song is so very much more.

     As the song completes, and the radio is turned down, I see the smile still on Cora's face.  As a curious Momma, I have to ask!  Before I can get the words out, she tells me she absolutely loves that song.  Cora proceeds to tell me the song is her voice!  She continues by informing me that she sees herself as that small boat in the ocean of life.  That she feels she isn't heard often, and she doesn't speak up much.  However she isn't ready to give up on life!  She isn't ready give up on the notion that there are many other kids with heart surgery who will follow behind her in school.  She wants to help make the path a little easier for the next congenital heart defect kid.

     This song is her anthem!  Cora says it is her "fight song, take back my life song, prove I'm alright song." She says she feels strong when she hears it.  She doesn't want to give up, or care what others say, because she's "still got a lot of fight left in me."  She isn't going to think about the end, she is going to think about the now!  Clearly there were no words that I could say.  At the risk of being a crying mess, and unable to see the road to drive, I simply smiled and nodded.

     So thank you Rachel Platten.  Thank you for your song Fight Song.  Thank you for empowering my daughter through your words. Thank you for breathing courage, hope, and inspiration into my CHD daughter!  Silly as it may sound, any little bit of encouragement she can receive to lift her spirits, and ignite a flame within her, deserves a special thank you!  If that has to come from a song, I'm so grateful it's a song like this.  I'm blessed that God guided my daughters ears to this song, her entyrruptation of the words empowered her, and that she now has some new found strength, and unconditional love,  to continue to try to make a difference in school for other CHD children who may follow!

Blessings Until Next Time! 

Drena

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

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

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

 

A Special Letter!

     With the hustle of everyday schedules, routines, and well....life, I seem to forget the little things.  I am so busy checking lists, making sure you've taken your medication, helping you remember things, and making sure we get where we need to be.  I just haven't slowed down to tell you how special you are to me.  Expressing my emotions verbally isn't my strong suit,  as you well know.....so today I am slowing myself down and writing you a very important letter.  A letter I should have written yo you years ago. 

     From the moment you were born and I saw your sweet little face and your cole black hair I thought.....that can't be my child...she has cole black hair!  :). All kidding aside, I was so happy you were born.  I was so frightened during delivery, and felt heartbreak when you were born.  Hearing the doctors say you weren't breathing, I felt so alone.  Being without Daddy and having a bunch of strange people surrounding me, I prayed and cried uncontrollably not understanding The Lord's plan.  Then something changed...I heard you whimper...I heard a man say you were breathing....I continued to cry uncontrollably...still not understanding The Lord's plan.  Watching them roll you over to me and getting to see you for the first time in the incubator, I was so pleased to see you.  I was enamored by your beauty and peaceful face!  That one moment in time has lasted forever in my heart.

     As you have grown you have amazed me each day in some way.  You have had more struggles than any child or person should have to endore, but you always have seemed to pull through it.  Still not understanding The Lord's plan, I am now ok with that.  I may never know what the plan is, but I know you have purpose, and your life journey is inspirational to me and many others.

     I believe God gives miracles to those he loves....sweetie you are mine!  There were set backs that amazed doctors when you beat those odds.  When Daddy and I were told to stay close because of the unknown, you grew stronger and fought harder each time! I believe the prayers of many who prayed far and near for you were heard.  That may be why your still here fighting the daily fight, growing in your own faith, and teaching me something new about myself daily!

     Life is a roller coaster, and I know your coaster may be more frightening than most, and I hear you and appreciate that some days it's more than you can handle.  But don't ever give up hope, faith, or the fight.  Even though you may not see it, or understand it sometimes, God is always working in your life!  He has protected you for many years.  Bringing you back after you coded, and breathing life into you each time.  Without our faith and trust in Christ Jesus, sweetie, I don't want to know where we'd be.

     I wish I could give you that awesome piece advise to help carry you on your bad days physically and emotionally.  I can assure you that God Almighty loves you more than even I.  I know that's hard to believe but he does and he has great things to share with you.  Those lows, I believe are part of his plan.  It's a reminder honey, that we can't face this human life alone.  We need prayer, family, friends, and faith to lift us, sometimes carrying us, to the highs.

    I am so overjoyed to see you blossom into this young lady I see now.  I know you worry you will let me done, but sweetie that isn't possible.  I wish some days I could take away all that you are confused about with your body and your emotions, so you could have just a second of peace. Through God's Grace, Cora, we will shine and walk a path together pleasing and loving Our Lord!  Remember......you are loved and NEVER alone!

I love you peanut!

Momma

Meant To Be!

     How many CHD parents have asked the hard question.....why my child?  Why was my child meant to be this way?  I had the exact same thoughts when I discovered my child, in utero, had a complex heart defect.  I was confused and questioned the decision to even venture into why I wanted to become a parent.  I questioned God and everything about my faith.  Needless to say I was a hot mess.  But years later stepping back and looking in, I have had time to reflect.  Upon this reflection time I have seen the woven glory and grace of God!  I see everything about my Cora was suppose to be.....even while in utero!

     First let me start by giving you a little background.  Our first home was wonderful for us.  The rooms were designed close together so bringing a new baby into our family was perfect.  Our home was on a cul-de-sac, so thru traffic wasn't an issue at all.  Lastly our address......our street number was 123. Easy to remember and fun to share.

     Secondly came baby Cora.  Due date was January 21st.  Unfortunately we had many issues along the way and my labor began in Decemeber.  With the help of many specialized doctors and medication, I made it to my due date and beyond.  My wonderful daughter, Cora Evette, was born January 23rd at 12:34 AM.   Take a look at those numbers again.  Do you see any connections?  Yep.....Cora's date of birth, 123,  her time of birth, 1234, our home address 123.  That my friend is God's beautiful work!  If that isn't God telling me Cora was meant to be....well.....I don't know anything about anything. 

     Just when I thought my reflection was completed I discovered more.  My hubby and I decided to name our daughter, Cora Evette.  We both love corvette's and I shot down my hubby on the lets name our child Corvette.  So he came back with something more creative.....hence her name.  I was excited because I knew Cora was an Irish name, and Evette was different and pretty.  Fast forward to my reflection period.  When I began researching the meaning to her name, God revealed another glory!  Cora is an Irish/Celtic name meaning HEART.  Evette is of Celtic descent and means LIFE!  Put my beautiful daughter's name, Cora Evette, together and it means HEART LIFE! Think about that for just a minute.  Think about all the different little things that occurred which had to do with my daughter's birth.  Ok.......yes she was born with a complex heart defect BUT, God laid it all out for me before I knew anything.  The Lord was answering my prayers and assuring me that my CHD daughter was meant to be!  Not just was she meant to be part of life, she was meant to be my daughter!  For that I am most grateful and so full of Gratitude.  All I can say is THANK YOU GOD  for not giving up on me when I questioned you!  

Blessings Until Next Time!

Drena

Fragile Emotions...Part 2 Preliminary Diagnosis!

     Teachable moments........they are every second of everyday as we journey through this life parenting our God given gifts.  Some are easy moments while some are ridiculously crazy.  I have noticed on my journey with my three girls that the teachable moments subject may be the same, however they have to be taught differently.  With one child I can share scripture and explain in more detail our purpose as Christians that God has put forth for us.  With another, those teaching moments have to be short and light.  This way her attention is kept, and she retains and understands what is being taught.  My other.....well it is all of the above plus more.  It depends on what kind of day and what kind of mood she is in. The investment in teaching our children is constant and so greatly needed.  Sometimes I would like to take a break and let just one here or there slip by, because it is so tiring and draining.  However we all know that would be a disaster! 

     I have discovered something lately that in my opinion presents a whole new set of obstacles.  Seems the more our family teaches and walks by faith, the more difficult the obstacles have gotten.  I can see small pockets where evil has seeped in.  This forces those teachable moments to be in full force and makes me be on alert at all times.  The devil is good at finding those pockets BUT God is GREAT in giving us the strength, courage, and faith to rise above and come out Victorious!

     This leads me to the past few weeks.  It has been crazy...teaching moments every second of every day.  I have begun preparing Cora for her upcoming medical appointments.  Let me tell you it has been overwhelming for me in processing it all, so I have decided to scale back those teaching moments with her.  Is this the correct choice.....I have no idea!  My goal however is to keep her abreast of what is to come, but not breakdown each detail so it will create worry within her.  

      I have also had to re-evaluate my parenting.....teaching moments with her.  A few weeks back I wrote a post about fragile emotions.  Learning a child's emotional state may be frail and teetering on deeper issues that impact her daily life. Well...... it is not just frightening its unsettling.  This creates a bigger responsibility!  As her Mom I need to doing my research so I can be ready to parent my daughter as she faces these challenging and new obstacles in her life.  Though we haven't been given a firm diagnosis yet, the preliminary that I just stated above is enough at this time.....for me to do some reach and for my CHD daughter to face head on.  

     Once we wind down from our intense evaluation appointments and given a firm diagnosis I will make sure to share our findings.  Having a child with a Congenital Heart Defect doesn't stop with just the fixing of the heart.  There are constantly new arising issues these CHD children must face as they grow.  When you out the pressure of just being a kid growing up ontop of the additional concerns by doctors and obstacles to bear you can see how strong these little CHD kiddos are!  

Blessings until next time.

Drena

Taking A Risk!

     I recently read a blog post by Rachel Wojnarowski that touched me so.  She wrote about following God's will when we don't understand it. The part that spoke to me was her discussion about taking a risk. She spoke about risk and how it requires the need to place all your security and faith somewhere other than thyself.   As I sat and reflected on what I had read, I could see how this applied to my own life.

     Each time I write a blog post I am taking a risk. I'm risking sharing more of myself and my personal feelings.  This is frightening for me because I have trained myself, over the years, to guard those deep emotions and feelings.  Peeling back this layer of myself I am exposing myself to all who read my work.  I am opening my heart and letting you see the real me. All my imperfections and short comings are out there for everyone to read and see.  Am I frightened you might not like my writing....absolutely!  Am I concerned that exposing myself makes me to vulnerable...you betcha ya!  Am I frightened that I will be judged.....not so much!  Why you ask? Well because I am placing my security, love, and faith in God, who I know loves me dearly in everything I do.

     For many years I put all my deep feelings on paper.....sharing my happiness and my pain with my journals only.  Deep down feeling this urge to write and express myself but never taking the risk.  Years later here I am.  I have prayed for a long time for God to share with me my talent.  All along I thought it was just me wanting to write but not seeing it......all along it has been God.....nudging me, telling me this is my talent!  I can look back and see that my journey over the years has lead me to believe this.  Believing in God and his plan for my life, has lead me to educate people through my writing in many ways.  I have released all my insecurities.  Seeing that the talent I have been given is God working in me to fulfill his purpose.  With that my heart sings with joy and my soul feels complete.

"For it is God which workers in you both to will and to do of his good purpose." Philippians 2:13 

Blessings until next time!

Drena

 

Pleasing The Heart!

     What a busy week.  Cora and I had a little Mommy Daughter time.....at Children's Hospital.  We had a follow up appointment that well....wasn't one of our best visits.  But that's for another day to share!  Today I wanted to share something so pleasing to my heart.....and Cora's.

     Let me back up for a minute.  I am so proud of my two older girls.  They are so artistic and can create some of the most beautiful pictures.  Whether they draw it or paint it they are true masterpieces.  Me on the other hand...not so much!  

     I remember when Cora was 6 she asked me to draw our family so she could take it to school for show and tell.  I did my masterpiece and gave to her....so proud of my work.  Sweet Cora looked down at the picture, looked up at me and said, "Those aren't people they are lines."  I explained to her that was how I made people, stick figures.  She was so sweet informing me she wasn't going to take it to school.  I completely understood.  So it's safe to say they don't get their artistic-ness from me!

     Fast forward to current day.  When an opportunity to paint a heart at Children's Hospital was extended, Cora was so excited!  Cora had a beautiful white heart to paint anyway she chose.  While she was hard at work creating a masterpiece we were informed that once her heart was complete, dried, and glossed, it would be displayed in the cardiac unit.  I have to say this was one of Cora's best moments.  It was so pleasing to my heart to see how excited she was.  To see her infectious smile and hearing her little squeal as she learned it would be displayed with the famous artist, Mackenzie Thorpe, was like nothing I can explain.  I was in awe watching her paint this heart and as little hiccups arose she took them in stride....making them part of her painting.  One it is on display the hospital said they would send a picture...I will make sure to do a follow up blog when that happens....of course including pictures!!

    Below is a picture of the front of her masterpiece, stars, a cow, and the moon.  She was so inventive since they asked her to leave off her signature, she made the moon the letter C.  Such a creative and smart idea.  We are so grateful for the generosity of Cincinnati Children's Hospital, and so very grateful Cora had this opportunity!  As for me.....it is pleasing to the heart to see God's work!

Blessings until next time!

Drena

 

Evolving in Faith!

     Ever stopped and looked back at your life?  Are you proud of where you are now....from where you were years prior?  If you could write a letter to yourself and give it to your younger self...what life lessons would you pass on?  Would you suggest new routes to decisions previously made?  Hoping your younger self would stop, learn to pray, and realize those decisions made don't have to be made alone?

     Why am I writing this....well there are several reasons!  Before I accepted Jesus into my life, and heart, I thought life was all about me and my decisions.  The world could be whatever I made the decisions for it to be.  And boy did I make ALOT of bad decisions.  I knew nothing about prayer, or knowing that I could lean on The Lord during my times of confusion and stress.  Nope!!  I thought that things happened by the cosmic fate of the world.  The decisions made were because the world decided it for me.  It's ok, you can say it.....I was naive and ignorant to many things!

     When I began my faith journey I realized how much I really didn't know....not just about life, and myself, but about how my life could be different.....a good different!  I have discovered many trials and tribulations along my way but, knowing I have God's grace each and every day makes the stumbles along my way not so terrible.  I know what your thinking...really I do....what does this have to do with this blog and CHD?  Let me share with you!

     If I wouldn't have accepted Jesus into my life, I wouldn't have had the privilege to receive God's miracles!  God loves to shower us with his miracles!  He is proud to show us what he can do for us...simply because we love his son, and him!  You know, I use to spend a lot of my time being skeptical and judgmental.  Thankfully God saved me!  God took me under his wings nurturing me and educating me.  The result........... Cora!!!!!  Cora is one of God's Miracles! God gave my hubby and I many miracles.  The birth of Cora, the best surgeon to care for her during her 4 surgeries, and continuously breathing life into her weakened infant body!  Without my faith in Jesus Christ, letting go of my fears and worries I wouldn't have experienced God's blessings and miracles first hand!

     So......if I could write a letter to myself and give it to the younger me I'd write...." I can do all things through Christ which strengtheneth me." Philippians 4:13

Blessings until next time!

Drena