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 

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

      

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

 

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

Nature's Beauty!

      Heat!  Awe who doesn't love sun rays, squinting in the sun, and good old fashion sweat?   Ok I could do without the sweaty thing, it just doesn't fit me well!

    Our family went on a fabulous 2 mile nature hike at our local state park recently.  It was so fun to get away from the daily hustle and bustle.  No electronics, just good old fashion outdoor fun!  I'll have to say I was so excited to go hiking, but had reservations about our family adventure.  Our youngest, who is 4, was ready for the day, however I was really concerned she'd tire out quickly and want to be carried.  Knowing her little steps were double ours she did wonderful!  She only asked for a few little breaks and did great drinking her water.  She loved nature and all the butterflies seemed to love her.  They circled around her and followed her almost the entire hike!

     My other reservation and largest concern was Cora.  I have read in studies done, and know several other CHD children who struggle with the heat.  Cora is one of those CHD children who don't do to well in the heat.  Knowing this and the fact we'd be pushing her with our up and down hill hiking, I wasn't sure what to expect.  I did as I always do before our day began praying for protection for our family and our days journey, realizing I would just need to keep my eye on her.  Overall she did a great job!  She did tire a little over halfway through, complained she was super hot and sweaty, and noticed her breathing changed a little.  Cora did good taking her breaks and drinking her water.  She stuck it out and completed successfully!

     As evening rolled around I had a bunch of tired kiddos!  My youngest and middle daughters just kinda laid around wanting to watch movies and hang out in their pjs.  For Cora she to was tired but more so feeling ill.  The heat had finally gotten to her.  She had begun to feel sick to her stomach and her head began to hurt.  As the night went on poor Cora had a migraine and was completely wiped out.  As a CHD parent it is difficult finding a balance when we do family adventures.  I don't want to shelter Cora from experiences or express that they may not be the best.  Honestly most of the time we don't know how she'll do until we actually do it as a family.  With that being said we don't push her or make her do things she doesn't want, I mean challenging her like the hike our family took.

     As a whole her siblings are supportive in every adventure we take.  They know their may be limits in our journey, but they try hard to not get mad and down because, we may have to alter our plans due to Cora's health.  Each adventure is a journey in the unknown, BUT, we have faith in God and the unseen miracles.  So we venture and we regroup!  We support and most of all ......WE LOVE!

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

Lessons From Heart Camp!

     My reunion with Cora on Friday wasn't how I imagined in my head!  Don't get me wrong it was good but.....it wasn't the yelling of my name, running to me so I could swoop her up in my arms hugging and kissing her.  Instead.......it was a quite "Hi Mom.", and is it time to leave already?  I did however get a hug and a joyous smile from her. 

     On our travels home Cora began telling me all about her week.  Something was different this year....I looked at her no longer seeing the little camp girl....I saw a young lady sitting next to me wanting to share her week with me!  As she began to talk she seemed so grown up.  How could I have dropped off my little 13 year old daughter on Sunday, to come pick up a young lady on Friday?

     She began by stating, "Mom I learned a lot at camp this week." She proceeded to inform me that she learned about miracles!  She felt that the little camper girl that passed out and went into cardiac arrest, would die.  She said she openly cried and prayed for her.  Cora was amazed that within 24 hours the little gal was sitting in bed Skyping with her and her fellow campers.  Cora simply said it was a miracle.  "They do exist Mom!"

  She continued to tell me her second lesson learned.  She went into a lengthly explanation about a difficult counselor at the camp, and how she had a hard time of it.  Then she fell silent.  I thought for sure she began crying.....leaning to the side of the window I heard her take a deep breathe.  She perked up and spoke once again...."You know Mom I didn't like this counselor's attitude, or the way she spoke to me but....she taught me the most.  Don't open your mouth if you are going to cut someone down...she hurt my feelings all week, but, I do that too."  She went on to tell me that this counselor was very harsh and rude.  This counselor's behavior finally got to Cora, making her cry while she was at camp.  But she said she's done the same things to friends and especially her sisters.  She concluded with "That must be what God wanted.  Mom you've said it and I ignored it.  So guess God had to do it."

     Now I know it's only been a few days but Cora has retracted quite a bit that has come out of her mouth, and I have seen her cover her mouth a few times in attempts to stifle the mean.  This is new chartered territory for her...being so blunt has always been Cora.....no filter and the lack of recognition  of her statements.  BUT...these past few days I have seen God's work within her.  She has become aware of those words and the impact they cause.  I know she'll stumble a lot....we all do....but seeing the acknowledgement of others feelings, and working to do better is all I can continue to pray for!

     Who knew you could learn so many life lessons at Heart Camp?!  I am so grateful for The Lord's work within my daughter this past week.  I continue to be amazed at the blessings he grants each of us, and our family as a whole!  As for our home, we WILL continue to serve The Lord!

Blessings until next time.

Drena

     

Anticipation!!!!

     As I sit here this Thursday evening, my anticipation is growing by the hour.  Tomorrow I will be picking up my darling daughter at Heart Camp.  I have prayed so much this week for all the campers and their little hearts. 

     I anticipate that moment when I get to see her sweet little face.  Her warm joyous smile, and her voice calling out Mom.  I simply can't wait to grab hold of her and shower her with kisses and hugs.  Like each year I'm sure I will be praising God for keeping her safe and returning her back to me!  Funny to say but, I am as excited as a child on Christmas morning.  The inspiration Cora gives me everyday is really indescribable.  She gives me courage to try things, she brings me joy in the little things, but mostly.....she make me proud to be a Mom...specifically, her Mom!!

     Now don't get me wrong, I like time away from my children.  I enjoy "me" time, but I want to selfishly enjoy every minute I can with her....really with all my children.  It's just I don't know what the time frame of togetherness with Cora will be.  So I try to soak up all I can...just like a sponge....so if I am faced with days, or years without her, I will have used every minute God gave me with her to the best of my ability.

     So as I retire for the night I am excited for an afternoon, evening, and probably as week full of stories and wonderful memories my CHD daughter has made!  These are moments that carry me when I fall short, and feel like I just can't do another day!

Blessings until next time!

Drena

Harsh Reality!

     Oh where do I start?.....It is so emotionally difficult when you see a sweet heart child struggle, to eventually lose their battle.  Today I sit reflecting on the miracles of God and sifting through my emotional confusion I face, each time a heart child is called home to heaven.  I am saddened because I feel guilty that my child is still here, while another is grieving the loss of their baby.

  It is so hard to describe the emotions I go through every time the harsh reality surfaces, that these little heart children are so fragile.  It's a wake up call reminding me that my daughter is fragile!  

     The most difficult part for me is sitting Cora down to share this news.  To delicately express to her another heart child has been called home to heaven.  I wish I could say it has gotten easier over the years, but honestly as time goes on it is such more difficult.  Watching her eyes tear up, and seeing her face....it is so very difficult to keep my own emotions intact. I can't imagine what Cora thinks each time she loses a friend, an acquaintance, a camp buddy.  The only thing she seems to say more often than not is "it could be."  I long to tell her differently but she knows.  I do what I feel in my heart God is guiding...we pray, we talk, and we praise for the glories God has given us.

     So with a tearful eye we say Good Bye to another heart child today, and we smile through our tears knowing God is happy to see her.  

Blessings until next time.

Drena

Countdown to Camp!

     "Is it time yet?"  "Mom is it time to go yet....is it, is it?"  For two months this is the question of the day from my Cora.  Every year she is so overly excited to embark on her journey to Heart Camp. Her infectious smile is all day long, and her excitement everyday is like Christmas morning.  She jumps around like a crazy goose, and tells anyone who will listen to her, that she LOVES Heart Camp.  

     Camp Joyful Hearts, the actual name, is sponsored by Cincinnati Children's Hospital, (www.cincinnatichildrens.org/service/h/heart-institute/patients/camp-joyful), and every year they offer the opportunity for children, like Cora, to go be a normal kid!  They are surrounded by children with the same health ailments as them.  Nurses are there the entire week assisting with medications and at hand if needed for anything else.

     For Cora, it is dream come true each and every year.  As she has said so many times, it is a safe place for her to be her.  She is surrounded by children who can relate to her struggles, who encourage her, wait on her when she falls behind, and loves her unconditionally.  She doesn't have to go into long explainations trying to make others understand her and her flaws.  She can share things she keeps pent up most of the time, and she can be free to be "normal" without being judged!

     For me....I am so overjoyed there is a place like this for children with congenital heart defects.  A place to go and experience camp without the concerns!  But it is also sad...knowing this is the only time of the year my sweet child feels she is accepted by others.  It pains me to think so many adults and children judging someone who doesn't fit their idea of norm!  Will it ever stop?  I pray so often that a little bit of Jesus seeps into them, shedding light upon the dim, and breaking a mold created by a society, who needs to learn to just love unconditionally!

     As we countdown to Heart Camp, less than 24 hours, I will join Cora as she basks in anticipation and giddiness, for the moment she can be free to be herself for 6 days out of her year!

Blessings until next time!

Drena

How CHD Changed Me!

     I have shared a lot with you about my daughter's journey being a child born with a severe Congenital Heart Defect.  I have yet to share how CHD changed me!  I have touched on how I have adjusted and handled being a Mom of a child born with a CHD, but as a woman....a person...there is much more!

     I grew up my entire life thinking I needed to be strong.  Holding in my emotions, never tipping my hand when someone dealt me a major blow.  I remember when I was a young teen, I overheard a family member telling a friend, a sure sign of a weak female is her uncontrolled emotions.  That was enough for me to strive to be tough, to swallow the hurt, fear, and tears.  Never show my hand, never show my emotions, and I would never get hurt.  Instead of living my life free, I spent many a days building walls around my feelings, my heart.....me!   My heart was hardening as I continued to not allow God to enter and work his wonders.  But strange enough I believe God was working inside me all along.

     When I became pregnant with Cora and discovered my first born baby had heart issues well.....I continued building those walls.  I kept my emotions in check...hidden from my husband.....for that matter everyone I was in contact with. Then something changed one day. God began working a miracle in me!  He seeked me out, accepted me in my fear, anger, and rock bottom moments.  He began repairing me....removing my fear, withdrawing the pent up anger, and restoring me with faith.  Faith that I can make it!  Strength that no matter what happens he is with me, walking beside me and carrying me when I am just to weak to be strong one more minute. 

     I went from a bitter angry person...who by the way felt sorry for herself and thought God was punishing me for making wrong decisions in my life leading up to my pregnancy!  To......a renewed person!!!  I was shown that I could trust him with all of me.  He would be there for me despite falling short everyday.  It was not until I actually gave birth to Cora that I felt I had been shown God's complete love for me!

     Was I frightened the entire pregnancy?  Absolutely!!  Did I have setbacks in my faith journey?  I still have those days...BUT......it's different now!  I walk each day with The Lord's love, forgiveness, and word.  I have learned the glories of prayer, and releasing of worries.

     I know that my daughter will forever have a critical severe congenital heart defect with setbacks along our journey in life together....BUT..... I also know God has a purpose for Cora!!  That all that she has been through is with purpose!  I've learned that there will be setbacks, tears, fear, worry, anger, and hurt.  I have also learned that all those things are temporary!  As long as I stay grounded in my faith, and guide my daughter together we can tackle all those negatives and slay them with scripture and prayer.  I am a better person, Mom, wife, and daughter because of this journey God has put me on.  I walk each day grateful for my low because without it I wouldn't have discovered the GREAT love of Christ Jesus, and God!!

Blessings until next time!

Drena

Mother's Day Blessing!

   Happy Belated Mother's Day to all of the wonderful ladies celebrating this day! This year I saw and heard so many ads on the "perfect" gifts to get Mom.  As I sat watching and listening to these ads it hit me.......Mom's are only happy if given something.  We need flowers, jewelry, candies....you name it, us Mom's need it.  Are Moms really that materialistic?  I certainly hope NOT!  I certainly do not like what the media and retail has turned Mother's Day into.  All this hype got me thinking...what exactly DOES Mother's Day mean to me.  So here goes....

     Mother's day(s) are sacred moments throughout the year.  It shouldn't be just one day a year your child stops to recognize how awesome you are!  It should be the entire year.  

     Children recognizing and being grateful for what their Mom does only one day of the year, made me wonder if children are ungrateful the other 364 days?

     Personally I don't need those materialistic items to make me feel like a special Mom in their eyes.  Finding a little note written by my children on my pillow greeting me when I turn in for the night, is so thoughtful and wonderful!  A moment in a busy week when my child stops and gives me a hug....a special bonding moment! The thoughtful moment my daughter has when she empties the dishwasher and put the dishes away.  Getting another day with my CHD daughter.....priceless!  Having one of my girls yell from another room "I love you Momma."  Well that one of the best gifts I can receive!  

     God has made each Mother as unique as each child we are given wether by birth or adoption.  That alone is celebration for a Mother's Day everyday.

Walking A Fine Line!

     Being a parent I find it difficult some days meeting expectations of my children and myself. I get the feeling that my best is just short of what it should and needs to be.

     Then there are those moments when The Lord shines through, and the exhaustion and headaches subside.  My inner Wonder Woman Mom shines through.  

     Being a Mom of a CHD child I feel like I am always walking a fine line.  I am always wearing my "day clothes" but just underneath my "Wonder Woman Gear" awaits!  

     Do I want my child to be treated differently than others?  No!  Do I discipline the same as my other children?  Yes I do!  BUT....there are times when I must interject to advocate for my daughter.  Times when her voice just isn't heard!  Times when someone doubts her knowledge about her own anatomy.  That's when that fine line gets just a hair blurry and I find that "Wonder Woman" Mom steps in!  

     I want my daughter to stand up for herself and share her unique story,  I want her to be brave to share the uniqueness she posess.  BUT.....when a grown person doesn't want to hear her, or boarders on insinuating she is lying, I just won't stand for that.  Cora is still learning about herself and try's hard to share with everyone what she knows.  Does she always use the correct term?  No!  Would most people get the idea of what she is saying if they took a moment to stop and listen to her?  I would hope so...BUT I am getting a different feeling lately!

     All this leads up to a conversation I had with Cora after school today.  She is currently learning about the human body in school, and of coarse she wants to share her own story with the class.  Well I guess that wasn't received well my anyone..including the teacher.  As I listened to Cora express how students told her she was lying, and the teacher telling her what she was describing couldn't be because she'd be dead...Upset....YES!!!!!

     I sat quietly trying to focus on her as she continued to tell me how she lost a point for not describing the human body properly.  She said she tried to explain to the teacher that she understood the verbal directions to describe "your" human body.  Since Cora didn't put the immune system on it she lost a point.  Cora told me "Mom I tried to explain that I don't have an immune system so that's why I didn't write it on there."  I understood what she meant, not having a spleen and being septibal to all illness (which she takes medication for)....but the teacher said not possible you'd be dead.

     Well I had heard enough!  I quietly got out my ipad and began an email to her teacher.  I was nice but firm.  I expressed how Cora was upset due to the reasons I expressed above, and would be more than happy to come to class to share her unique anatomy, that is nothing short than a miracle.  I also took a few extra minutes to express her anatomy (I covered Cora's diagnosis in a previous post) so she was sure to make the connection from what Cora was trying to share to the actual medical names.

     What bothers me about this entire situation is a grown person argued with a child on something he/she doesn't know enough about.  An adult teacher doesn't know my child's medical history, and to imply that clearly what my child's diagnosis is not remotely possible, and then to continue to imply she is being untruthful...all the while in front of Cora's peers....well it is unprofessional, not adult like, and well.....just wrong!!!  I do hope this teacher contacts me next week and takes me up on my offer to come educate his/her class and themselves on the anatomy of MY child!!!

I shall let you know if something happens....so.....to be continued....

Blessings until next time.

Drena

     

Torn Between........

     So the other evening I was heading upstairs to finish up the laundry for the night, exciting I know!  Any who, I reached the top of the stairs and heard Cora singing a Frozen song.  I stopped to listen, and watched through a mirror across the hall from the bathroom she was in.  The door bing cracked, I could see her brushing her hair and looking at herself in the mirror.  She stopped for a minute and touched the top of her scar on her chest while looking at herself in the mirror.   I wondered what she thought at that moment, and how many times she's done that?  I stood silent watching and listening, tearing up at the same time.

     I stood remembering that sweet little baby fighting for her life, to now being 13 and growing.  I was torn....part of me was exstatic she has fought for 13 years, but part of me didn't like the idea of her growing up anymore.   Selfish I know...everyone has birthdays and gets another year older, but......birthdays are not always joyous for me!

     I celebrate Cora's birthday and share her excitement each year as she talks about driving, prayinging for her future husband, school, finding a career one day....all the normal teen stuff.  However in the back of my mind I keep my reality check!    Cora is a child of the most high God.  She has been a miracle to myself and our family, she has beaten so many odds, but I know she is here only temporally, like us all.  However with her rare heart conditions her temporally could be sooner than many others. 

     

     I have had to overcome many obstacles having a CHD child many don't know or ever really understand.  Which is ok, I get it.  I have also had to face things I never knew existed until I had my Cora.  Honestly as she grows it gets harder.  Harder in the sense that new obstacles arise within her physically and mentally, but knowing in the very depths of my vaulted mind...her condition is so rare, and statics with her conditions are grim when looked at life span.

     Knowing I may only have a few years with her here on earth, I put my full love and faith into God.  What is to be will be!  I pray that God will continue to work within me making me strong and understanding.  I pray that Cora continues living life not knowing what I know about this....and that she continue to make plans and dream like any other healthy teenage girl!

Blessings until next time!

Drena

My 1 in 100!!

     I have shared so much about my Cora and our highs and lows, never taking a moment to gloat about my daughter!  Just a everyday Mom sharing her love for her daughter!  So here I am ready to gloat about my girl.  Here is my Cora Evette.  My oldest daughter, who will be 13 on the 23rd, is happy sweet and so giving.  Cora Evette IS MY 1 in 100!!!!

Blessings until next time.

Drena

Kicking off 2014....CHD Style!!!!

     Happy 2014 to you!!!  I am excited about 2014 and the endless opportunities that await.  February 7-14 is Congenital Heart Defect Awareness week!  I am striving this next month to spread awareness by educating and advocating.  I sure hope you will join me!!  

     I hope during my journey with you to provide educatation about Congenital Heart Defects you will learn valuable information!  There is so much people don't know about CHD and spreading awareness is the only way I feel I can help my daughter!  Educating is so important for CHD children because knowledge will provide more funding for Congenital Heart Defects.  Help me spread awareness for my daughter, and all CHD children!  

FACT: Congenital Heart Defects is the World's Number 1 Birth Defect!!

Blessings until next time.

Drena

No Words...Just Tears...God's Love Always!

     We recently just had our Six Month Cardio visit.  What does that consist of you ask?   Well it is a long day of tests, updates, and patients!  Some CHD children have to go weekly, monthly, every six month, or yearly.  My CHD daughter has flip flopped over time.  When Cora was born and finally got to come home our check ups were weekly.  She was on a lot of medication and blood thinners that required her to have tests run weekly.  As Cora grew her appointments leveled out to 3 months, and then more recently to 6 months.

     Having a CHD child you must be prepared for appointments that take three hours instead of 30 minutes.  All the while praying for The Lord to take away your worries  and fears!  My goal is keep Cora's mind off her fears.  Almost being 13 she knows more about her body and what could happen to her than most children will ever have to.  So as her Mom it is my job to keep her calm and not over think the situation.  

     Cora's day usually consists of an EKG, Echocardiogram, X-rays, Oxygen Stats tested, and then a Cardio doctor visit.   After the Cardio check up we sit and wait for everything to be reviewed by her doctors before they come in and let us know what the results are.

     This month's( December) visit was not one of our better ones.  Cora has some irregular heart issues and was decided to be out on a heart monitor for a month or two.  She wasn't real happy knowing she had to wear it all the time, except sleep and showers, but she has adjusted well.  As for emotions, well Cora has her good days and bad.  Right now she says she is just trying to understand.  She is such a trooper, and I completely understand her emotions.  We continue to pray together and cast our worries to The Lord!  Some days well.....there are no words....just tears......knowing we have God's Love always!!

Blessings until next time.

Drena