The Spirit of The Season!

     The countdown until Christmas is on! Everyone is in a crazy rush to buy presents for all.  Some purchases large, some small....everyone with the same goal......buying buying buying!  Isn't that what makes people happy?  Giving the gift of wants?  Pleasing with the instant gratification and wishes of all our family?   Hummmmm.........Never thought of it that way, huh?

     What about the spirit of the season?  You know....the spirit of Jesus.  The celebration of Jesus' birth, the spirit of hope and miracles.  The Christmas magic!  The joy of simply spending quality time with family, sharing stories and making new memories!  This is the time of season where things are magical, and hearts soar!  People are a little extra generous and kind!  We all tend to make prayers requests in hopes that something a little extra special comes true during this magical season.  So...what is your Christmas wish?

     Well for our family the Christmas prayers have been the same for 12 1/2 years now!  Our Christmas prayer isn't just seasonal but all year through.  It is for all Congenital Heart Defect children to keep fighting their battle believing in Jesus, and know that God will always take care of them!  

     We must all remember and keep faith that the spirit of giving, and healing should be a year round prayer, not just one during the Christmas season.  That Jesus is just a prayer away, and for CHD children they need not just the medical treatment, but prayers of beating and winning the battle!  

     So this season my prayer remains the same, with one additional.....please make your wish and prayers something near and dear to your heart!!  Not something materialist or fading!  There are so many children and adults living with a Congenital Heart Defect that battle each day.  Arming them with a prayer for another day makes more of a difference than you know.  Take it from this CHD Momma, I know first hand that prayers can turn into little kisses from God!

Blessings until next time!

Drena

Finding God's Love!

     Oh boy where do I start?  From the time I understood what love was and how complicated it was I was always very guarded.  I made sure not to get to close to it, or let it consume me.  When I met my husband I let a piece of that wall down.  I thought for the first time I was understanding, accepting, and letting love into my heart.

     Then I let Jesus into my heart and another piece of my wall broke away.  I finally felt what love was and realized I was, and had been, missing out on a lot over the years staying so guarded.  When I thought I had finally reached a pinicale moment accepting love and welcoming it into my mind, heart, and soul, I gave birth to my first daughter!

     Looking at that beautiful baby girl I felt a love completely unknown to me.  I loved her with everything I was, yet terrified at the same time.  I had already known she had a congenital heart defect in utero, and had prepared myself to be a little distant.  But hearing her cry for the first time, and then seeing her beauty......I saw God's Love right before my eyes!

    Sure it is a risk to love!  I know first hand and know I spent a lot of my youth protecting myself from it.  I can tell you I was truly missing out on so much!  With everything in life....if you don't task the risk you may never reap the reward!

    I am so glad God opened my eyes years ago!   Jesus accepted me!  Forgiving me of my foolishness, and helped make me into a better person today!  But most of all, I am so very thankful that with Christ in my heart, I have learned that a Mother's love is something magical and perfect!  I wouldn't change my daughter in anyway!  God knew what he was doing when he made and gave me my Cora! She may not be perfect to most, or meet the norm in society, BUT.......Cora is my perfect!  She makes my heart sing full of love and joy every single day!  Only now have I found God's true love!

Blessings until next time!

Drena

Changing Seasons!

     With the season changing everyone is preparing making sure everyone in their family has coats, hats, warm clothing, and anything else you can think of!   Our household is the same except, there is an underlining concern with every season change.  

     The fall and winter months are the seasons of most concern for most, I'm sure.  Not just the change in temperatures,  but the sickness that start flowing everywhere.  Flus, stomach bugs, colds, fevers, coughs, the list goes on and on!  I am sure if your like most parents you stock up on over the counter medication. You know...just in case!   I wish it was that easy for a parent like me!!

 

     Fall and Winter are the most on edge seasons for me having a CHD child!  For my daughter taking over the counter medicine isn't much of an option.  Since Cora has such a multiple intricate condition, and no immune system, over the counter medications are pretty much out of the question for her.

The fear of a common cold for Cora could become pneumonia very rapidly.  This could then lead to hospitalization and well....you can fill in the blanks from there!  

    We have been blessed to avoid such extreme obstacles, which I strongly feel has contributed to having her on Amoxicllian since birth.  This medicine has helped aide Cora's body in fighting off the little things a person with a immune system would fight off and, not really give it a second thought.  

     Having a child without an immune system is very difficult, and many just don't seem to get it.  I try to be patient with many and smile when they say I am silly.  But knowing a common cold for most could kill my baby is a very very hard pill to swallow, let alone face every single season.

     But I try not to dwell on this fact.  I arm my daughter every morning the best way I can.  I  pray over her and remind her of her risks and what she must do to keep herself as healthy as she can.  Once I send her off I become a Momma prayer warrior all throughout my day!!

     My family loves the snow, and holidays!  We look forward to spending time with friends and family!  But don't think for a second that I'm not doing my homework on what illnesses are "trending", and who has just gotten over what.  I am always looking out for the best interest of my daughter first and foremost, but I have a secret weapon!  I know The Lord will ultimately take care of  my CHD daughter, and all who she encounters!  

Blessings until next time!

Drena

     

Leaning On Prayer!!

     This past month and a half has been difficult for my sweet girl...which has now worked its way to taking its toll on me.  Oh how I wish I was so strong all the time...but I am weak and fall short often.  I stay strong in front of my daughter to ease her worry and fear.  Inside I am a mess some days.  I have learned worrying gets me nowhere,  so I cast my worries, fears, and everything else to The Lord.

     I know I have said before but, I am not a person who shares my emotions often, but believe me I have more than I know what to do with.  I pray and pray a lot.  I speak to The Lord in the car, in the shower, when I lay in bed at night, always.  I pray and pray all the time.  Sometimes when I know I am alone, knowing I won't be "caught",  I sit and cry.  No word spoken to anyone just my pleads to The Lord through my tears.  Lately it has been my release from being strong 24/7 for Cora.  

     Then last night I decided to get on Pinterst and as I scrolled down just a touch I found the below scripture from Psalm 56:8.  It did so much for me.  I could feel God speaking to me, answering not just my spoken prays, but my tear prayers as well.  I picked up my Bible and turned to Psalm 56:8 and began reading.  I felt The Lord hugging me, letting me know that he will be with Cora and care for her.

     Now I can't say there aren't moments when I look at her, that I don't feel hopeless....Knowing I am unable to take away her chronic pain, her palpations, her breathing hardships, or any other health obstacles she is facing.  But I know with my constant prayers and appreciation for the Glory of The Lord..."I can do all things through Christ which strengtheneth me." Philippians 4:13.

Blessings until next time.

Drena

Finding Faith!

     So my earlier blog I posted my struggles in faith during my beginning pregnancy with my CHD daughter, Cora.  I debated sharing this information, but felt moved to share, so everyone can see my journey of struggles.

     For many years I was a surface Christian as I call it.  I knew very little about my faith, but portrayed  to others that I new more than I did.  Really, I was a lost soul.  Then God got through to me.  He didn't give up on me, and saw my little seed that needed nourished, educated, and loved.

     God began putting people in my life that I constantly learned from.  I was given my first Bible by my now sister in law.  I began reading it immediately craving to learn more.  I discovered so much about God, Jesus, and myself.  I began attending my Grandmothers church, and discovered the power of prayer, and forgiveness.

     Years later I married and was blessed with the pregnancy of my first daughter, Cora.  I was on cloud  nine.......then everything fell apart.  Learning early in my pregnancy all the complications and likeliness of the baby I was carrying would die after birth, I felt my world crumble.  I was frightened, confused, and very angry.  I felt I was being punished for all my prior sins.  That everything I had learned and diligently lived my life for serving The Lord, was for nothing.  I honestly felt God closed my faith door and left me in the cold all alone and unarmed.  I lost faith in myself and felt let down. 

      However throughout my pregnancy everyday I prayed for forgiveness.  For every single sin and mistake I could remember making, and begged for forgiveness, and a miracle for my unborn baby.  My first pregnancy and I wasn't that glowing happy Mom to be.  Nope.....I was bitter and angry with every person that was a Mom to a health baby.    I didn't understand or stop to pray about it.  I just let all that anger, resentment, and self pity fester inside.

     Then The Lord revealed himself to me.  Not directly but through the miracle of my daughter's birth. Her birth was scary and almost a heartbreaking experience, but he showed his grace and love for my daughter and myself.

     12 years later, 4 open heart surgeries, and learning how to coop with a twisted brain stem, no immune system, and cognitive memory obstacles, The Lord is still blessing my daughter, Cora, and myself with grace, courage, and faith.

     Though our days are jammed packed and the time flies by.  The Lord shines a light onto my daughter.  That light reminds me that The Lord's miracles exist, and his grace is everywhere.  I can NOT look at my Cora and not believe in God's existence.  She is a true miracle, not just by evaluation but from her doctors as well!  For he alone gave me my Cora as she is, and for that I pray gratitude, and praise daily.

Blessings until next time.

Drena

Losing Faith!

     Being a Mother to a child with a complex congenital heart defect is a roller coaster day in and out.  On the surface I must be strong for my friends, family, and my daughter Cora.  Underneath I have, and occasionally still, question myself as a parent, my emotions, my fear, my guilt, and my faith.  It isn't something I am proud to admit, but it is this Mom's truth. 

     There are days that my faith is strong and I feel I can conquer anything set in my path...but then there are those other days.  Those are the days that are more present than most and I feel worn down, confusion, sadness, and helplessness.

     When I was first given the news about being pregnant with a child with so many problems.  From a heart defect to a twisted brain stem, I was at my lowest in my faith.  I felt that God was punishing me and my unborn child for all the sins I committed during my life leading up to my pregnancy.  I questioned the love of God, and the Bible as a whole.  I pushed people away and built a safe castle wall around my heart, and my mind.  I still continued my surface appearance of having it all together...many didn't know I was pregnant with a child with so many obstacles, and I didn't wish to share that.  I built a safe place for myself in my mind. A dark lonely, sad place.  But at that time I felt as long as I didn't share it with a single sole I would be fine.  No judgement, no angry let down people.  I figured God turned his back on me so I would release everything my Grandma, and my church had taught me about my faith.  

     Looking back now it really was my lowest point in my faith journey.  I have never spoken about this to a single sole, fear I suppose.  But I realized something recently.  During that time I felt so alone...I was alone.  My family and friends couldn't relate because they hadn't faced anything like this.  I use to wish just one person during my journey then would surface and enter my life to be my comfort.  Well....that person didn't come, but The Lord didn't leave me either.  So if I can find the courage to take my castle wall down one stone at a time, I may be able to help someone else who is facing what I have faced.  Maybe I can give that one person a glimmer of hope I so desperately needed back then.  I can show them that thou you feel all alone, The Lord is with you!  Holding you, carrying you, loving you!!

      I can assure you it is a difficult struggle to face each day with a child with a complex congenital heart defect.  Oh yes it is draining physically and emotionally as a Mother.   But there is no way what so ever I would change one struggle, one tear, or any of my stumbles along the way, because God gave me my wonderful daughter.  The miracle child that I was told had less than 20% chance of life after birth.  God new what he was doing, and I am grateful and reminded daily what Gods blessing is.

     Blessings until next time!

            Drena

 

   

Changing View Points.....

      All those who are parents know that being a parent can be challenging, stressful, difficult, and demanding.  Being a parent of a Congenital Heart Defect child is all those things and more.  I found myself, as a parent of a CHD child, advocating 24/7 trying with my every blessed day educating people in some way.   It is a tiring, long process but, I feel my daughter, and other CHD children deserve it. 

   

     With that being said I stopped writing and blogging a few months ago. I decided to take a cibaticle from writing and advocating as a parent.  I decided to take a step back and see life as my daughter sees it. 

      Over the past few months, walking in my daughters shoes, I have discovered more about not just my daughter, but what life is like for her as a CHD tween.  I thought my heart ached for her before......my mind was blown by my discoveries.

      It amazed me how uneducated children are when encountered with diversity, and discover one of their peers has special needs.  The disconnect from The Lord and the word of God!  The boldness children have speaking freely in front of others, oh yes including me....Cora's Mom!

     Hearing children speak less than pleasing words to my daughter has been a huge pill for me to swallow.  Momma bear has wanted to come out when I have been a witness to these conversations.  But I literally bit my tongue and waited for Cora's reaction and responses.

     It is appalling to have been a witness physically and emotionally to these children who speak inconsiderately and disobiently.  The one that has stuck with me the most and makes my stomach turn and my body cringe is : " You will never be normal.  You are damaged goods Cora.  No one will ever want you."  

     I can't believe young children speak that way to others and have no moral issues with the cruelty seeping from their mouths, or the verbal beating they are giving to another.  That day my heart broke.  I wanted, as a grown woman, to grab that child and smack their mouth, and pray scripture over them.  I looked at my dear daughter, my miracle God gave me, and saw her glassy eyes as she let these children speak.

     I stepped forward not able to allow this to go on anymore, but Cora looked up at me and with her beautiful blues eyes pleaded me to stop.  With that I watched my daughter respond to those awful, awful words.

    She stepped closer to this child and proceeded to respond with more grace than I have ever seen a 12 year old have.  I could see she was upset, and broken by these children.  But I also saw God's grace working through her.  Watching per center herself and gain a little control her quivering voice spoke magic to my ears.  Cora didn't put down those children, or call them names.  Instead she informed them that she was God's miracle and her scars are not just proof of that, but they are also God's love.  It was so beautiful.  The unfortunate result was that those children didn't really listen to her, or care what she said.  At that moment the gears in my head shifted.

      Maybe I need to change my coarse of educating?  Maybe I need to be educating all these children instead of the adults?  What if all the advocating I have been doing was really for nothing, because those parents I have spoken to deeply advocating for CHD didn't seem to take the time to teach their child.  

      With CHD's killing more children than all childhood cancers combined. We need to educate and spread the word about Congenital Heart Defects, and get some funding to research this defect in more depth.  So I will continue my advocating for the hope that I can touch just one parent, or just one child.  That maybe I can plant a seed within them to carry and later to share their new knowledge with others.  Spreading Congenital Heart Defect Awareness!!!  Maybe then....just maybe, the experiences my 12 year old has faced thus far in her life with her peers, will cease to exist!!!!!

Blessings until next time!

Drena