CHD-My Foolishness!

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

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

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

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

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

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

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

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

Blessings Until Next Time!

Drena 

5 Reasons I Celebrate CHD!

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

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

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

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

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

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

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

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

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

Blessings Until Next Time!

Drena

A Mighty Journey!

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

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

     

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

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

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

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

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

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

Blessings Until Next Time!

Drena

 

Tears of Joy..A Birthday Celebration!

     The hope and joy of seeing a very sick CHD baby grow, face set backs, gain courage, handle illness with grace, all the while growing into a young lady.  Today is a sweet reminder of my baby girl's journey!  It is a day that I have reflected and ran the gamut of her highs and lows!

     So today I celebrate that newborn baby who coded many times, but continuously fought her odds, and overcame those odds.  I celebrate the toddler who underwent 2 heart surgeries, not understanding the importance or the pain she endured. 

     I celebrate that preteen who fought everyday to just fit in!  The preteen who has struggled in more ways than I ever have, but still finds a way to smile.  But most of all....

     I celebrate my 15 year old, sweet CHD daughter.  Though many days are more difficult than not, she is learning to take each day with grace and poise!  Each day I see the courage of David within her, as she faces her Goliath (obstacles).  Though she falters she continues to brush herself off and take one step in front of the other!

     I pray with all my being, God gives you many more years to grow and become everything you want!  A lady, a Mother, a wife, and an author.

     Happy 15th Birthday my Heart Hero Baby!  Love you more than words.

                      Momma

Blessings until next time!

Drena

Loving Thyself!

     Teaching a child to love themselves is such a challenging task for a parent.  It is even debatable, if this is something that can even be taught!  As a parent, I have yet to meet someone, who doesn't want their child to love the person they are inside and out!  

    As parents, we put so much pressure on ourselves to be the mighty teacher of everything for our children. But so much just can't be taught by us!  We can guide, give direction, and even sometimes nudge them.  But in life, we all know we can't teach everything. 

     

     Our children have to learn to love themselves. They have to discover who God has made them to be. They have to discover their value and purpose from God.  Not by their choice, our even our choice....but by God's design. 

     God has put within each of us, the ability to overcome our insecurities. My goal as a parent, is to help guide my children to value themselves.  To accept that we all make mistakes and fall short, but forgiving ourselves is key.

     Having a daughter with a heart condition so many things are fragile.  There is a very fine line between disciplining and guiding.   Not only is she judged by others, but now she is judging herself.  Putting blame on oneself for your difficulties, differences, even a heart condition is toxic.  This pill is the hardest to swallow.  It always seems easier to see our shortcomings, and blame ourselves for them.   

     I don't want my CHD daughter to blame herself for anything.  I want her to have compassion for herself.....I want her to accept who she is and not just embrace it, but love it, and be proud!  I want to her to realize that God made her and he doesn't make mistakes.  But above everything else, I want her to respect who she was made to be!  I love her just the way she is, and wouldn't change a thing.  Because I'd loose the Cora I know and love inside and out!

Blessings Until Next Time!

Drena

Dear Momma To Be!

Dear Momma To Be,

     

     Where should I start?  If I could step back in time, I'd help prepare you, keep you from being blind.  Dear Momma To Be.  If I could hold your hand, I could keep you one step ahead from all the pain you're about to endure.  These months to come will be hard, mental bars, and physical scars.  That tiny seed God planted needs to be clung to.

 

     Oh Dear Momma To Be.  If we were face to face.  I'd be there by your side, to help you fight the doubt within your heart.  Dear Momma To Be.  It's not your fault.  You were never meant to carry this pain and fear all alone.  Every mountain, every obstacle will help lead you closer to who you're meant to be. 

     So, Dear Momma To Be. As I stand before you. I can tell this journey will change you forever!  The road you walk will sometimes be unpaved, the pain will at time be close to unbearable.  But open your eyes....she that sweet blessing?  That's your reminder

I wouldn't go back and change a thing. God gave you super powers, that have grown over the years!  That sweet little blessing you hold is your reminder!  God made that beauty and instilled in you super hero qualities......You are a CHD Momma!  Welcome!!!!

 Blessings Until Next Time!

Drena

 

 

Inspiration For The Soul!

 

    I began this blog several years ago for many reasons.  I had visions of where this blog would go, and whom I may reach to lend support through our journey.  I prayed long and hard to make sure, this was the calling God was guiding me to.  My point of view is just that, a Congenital Heart Defect Parents view.  I can only share how I feel as a parent, and share our journey the way I live it.  

     I was so concerned when I began this blog.  I may share to much, not enough, offend people, and just look silly.  I feel like I have opened my mind and heart for all, and in return I have received so much from God and each of you.

     I have grown as a CHD parent through blog writing.  As I reflect, I think I can glimpse the vision God has laid before me.  I write to release! I write to grow!  I write to educate, bring awareness, and to motivate and inspire others.  Sharing our life and our struggles is a risk, for sure!  If opening up and sharing our ups and downs helps one family, I believe I've used my purpose God gave me. I want to bring hope and encouragement to people.  For those CHD parents who are close to their breaking point, I want to help inspire you! Let you all know that I get where you are coming from.  I too have been there, and still have many days where I struggle. I lived with fear, and the stigma to be that perfect, know everything, heart mom.  It's ok to be sad, angry, guilty, and numb all in a matter of minutes.  It's ok to be confused and feel helpless.  Just keep moving forward!  Remember that your little heart child needs you in so many ways. Not just to give medicine and keep their g tubes clean, but to just be Mom. To love them, laugh with them, and even cry with them.

     My dream to provide hope and spread awareness.  Even if it's just a glimmer in your dark time, I'm with you.  I've been in that dark place!  I prayed many prayers for just one person to sit with me, and let me cry on their shoulder.  So if you have that moment, I'm here!  Cry away, I understand completely!  Sharing will heal the soul!

     To that sweet girl I recently had a conversation with...you know who you are.... This is why I am doing this!  Be proud of you, you inspire me!!!  Wear that with pride!  Those scars aren't ugly!  They are Gods little reminder that you are his little gem of love!  

Blessings Until Next Time!

Drena