Sunday, September 28, 2014

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

 

Friday, September 19, 2014

Finding Balance with Gadgets & Gismos!


     In this day in age what child doesn't own some form of electronic?  Until recently I didn't realize how disconnected from daily life our children were, until rules began changing in our home.  
     I know siblings don't always get along, and I completely get that each has their own opinion.  But living in our home over the last few months has become war.  They bicker over everything.  They don't even try to find common ground.  Oh and don't get me started on the disrespect they have going on with each other.

     Since kayos had erupted in our home my husband and I took all electronics away.  Everything else we had tried was falling short, so we knew this would grab their attention.  I was amazed at how difficult it was for my girls to entertain themselves, without an electronic.  I admit I have failed in limitations in this department.  Knowing my CHD daughter, Cora, is more limited, this has been an easy fill.  From those days that have been to hot and humid for her to be outside long.  To those days she doesn't physically feel well.  I have simply allowed her to occupy her time with electronics.  Now that could really be anything in our home because we are the capital of Electronicville!  We have big screen TVs, PS3, Wii, kindles, iPad, MP3 players, Mom's cell phone to text friends, and probably more that I can't think of right now.

     Seeing my girls unable to function to entertain themselves without something electronic, was disturbing to me.  I was completely shocked to learn that they had no idea how to occupy their free time.  So I began guiding them with ideas.  Every time they stated they had nothing to do I gave them 3 ideas.  Let's just say at first it wasn't a big hit but, now they are warming up.

     The no electronic rule has been in effect for a little over a month now.  After one month my husband and I sat down and reviewed their behavior.  After one month it's astonishing to see how the tension and aggression has decreased.  Now don't get me wrong, they still have days where they bicker and can't stand each other.  However now they are fewer and not as explosive.

     For now the girls have been rewarded with 30 to 1 hour of TV several times a week.  This is at parents discretion and the girls have dealt with this very well.  We did try a day reward with some kindle time.  That was an epic fail!  They aren't ready for that yet.  Learning their moods can be altered so severally by electronics is so unsettling.  So we have decided our next step is to review what games they have and what may cause these unkind rude behaviors.  In the mean time they will continue to discover and explore new things to do with their time, and continue enjoying board game nights!  After all there was life before electronics!

Blessings until next time.
Drena

Wednesday, August 27, 2014

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

Friday, August 22, 2014

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

Wednesday, August 13, 2014

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

Monday, August 11, 2014

Just Another Day At Children's Hospital!

     So Friday's adventure lead us to Children's Hospital!  Cora has been asked to volunteer in a study to observe vascular function and the functional outcomes in Fontan survivors.  Needless to say she was super excited until the day it actually began.

     It started the night before.  She had to fast.....no eating a late night snack or breakfast.  Of coarse there was a little bit of complaining about that.  Ok, a lot of complaining about that!
     Cora's day began with testing right away!  They did several different tests where she was wired up to machines lying flat.  She was to be still and quiet.... No talking.  Anyone who knows Cora knows she never stops talking, so this was a challenge among itself!  Every opportunity she had to chat she didn't miss a beat.  She made the nurses laugh, and asked her a lot of questions.

     After hours of testing Cora finally got to eat breakfast. It was so cute to see her savor each bit like she hadn't eaten in a month.  Finishing up she was ready for her next round of tests.  As I sat in the corner of the darkened room I watched Cora lay completely still and quiet.  She looked so peaceful and....happy!  

     A while back Cora had expressed to me that she loved going to all her doctor appointments at Children's.  She said she felt so many good things when she was there.  She likes that people who see her listen to what she has to say, she likes that shape doesn't have to explain herself, she said she also likes the feeling of fitting in when she is there.  

     So as the day was winding down Cora had completed so much....but still had one important piece to finish.  THE EXERCISE TEST!!!!!  Needless to say the part of the day that just about did my sweet girl in.  They hooked her up to many things, EKG, Pulse ox, blood pressure cuffs, you name it it was attached to her.  Once she was all wired up like a robot they told her the best news....NOT!  She had to do this exercise test for 18 minutes with 10 minutes being the hardest.......all the while she had to breath into this breathing tube with a nose plug.  That poor girl!  The entire time she was getting hooked up shed give this sad eye look.  Once they finished explaining the excerise test to her she gave me one more look!  I knew she didn't want to do it.

     She was such a good girl though!  She did what was asked of her to the best of her ability!  Once her time was done I could tell those 18 minutes were like hours to her!  She was red all over, she had sweat dripping off her face, and as she was instruvpctwd to lay down I watched her look at me with tears in her eyes!  She mouthed " I want to go home!"  I teared up looking at my sweet daughter smiled and mouthed back "Soon!"

    As she laid there the two employees kept telling Cora to try and relax.  She kept repeating I'm trying to them.  As I began watching the monitors more closely I realized her heart rate wasn't dropping much!  It was still very high as if she was still riding the stationary bike.  The next 25 minutes were monitored closely to make sure Cora's heart rate would drop.  Praise The Lord it did!  

     It was finally time to leave.  Cora graciously accepted her Target gift card, grabbed my hand, and pulled me out the door.  As we were waiting for the elevator she informed me that the test she just did was horrible and she wasn't sure she wanted to do this again in 3 years!  I did the only thing I could......I took hold of my girl hugging her and kissing the top of her head!

 Blessings Until Next Time!

Drena


     

Wednesday, July 30, 2014

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


Monday, July 28, 2014

Pandora's Box!


     All it took was one trigger and Pandora's box was opened.  A side I usually can contain, exploded in a way I am ashamed to admit, won out at that moment. I stood in the middle of the room feeling my ears burning. I knew I was on the verge of losing it.  I gave into the anger......evil found an opening in my thoughts and snuck right in.  It took over all my emotions and sin began!

      Arms flying in the air I started. "You have no idea what it's like.  I have to prompt her 100 times a day to remember stuff that everyone else in the world doesn't even have to think about.  It just comes automatically to them, but not to her.  It is so exhausting to be her brain and mine! I recognize it isn't her fault but some days...well some days I am tired of constantly repeating myself.  I am sick of hearing my own voice.  I have become a nagger instead of a kind encourager.  I frustrate so quickly instead of being slow to anger.  I am embarrassed of the parent I am becoming.  I can feel myself lose control of the situation when it occurs and I just can't get a hold on it.  I know there has to be a way to get things to stick inside her little brain.....why can't anyone figure this out?"  By this time I am in all full blown hissy fit.  I am folding laundry with gusto, and deliberately throwing down the folded towels on my bed.

     "Honestly Lord, I am sick of being the shoulder to lean on. I can't be with her 24/7 so when she doesn't remember who is going to help her?  You know how many times she would have missed the bus or, gotten on the wrong bus without a teacher guiding her this past school year?  Maybe the anticipation of school beginning soon is adding to my stress.  But when school does start the stress will intentsfy, making the simplest of tasks down right unbearable for both of us.  I've tried so many different things to fail each time.  I am only one person.....and maybe I'm wishing for something crazy?  But miracles happen everyday, why can't a miracle break though be one for her?"  Crying like a crazy person and pacing the floor I continue. 

  "Lord what has happened to me?"  Dropping to my knees I ask for forgiveness for my selfish tyrade and the immature way I have just behaved.  Begging for forgiveness of my sins and insight on how to do better I finish by just sitting in silence.

     This is not something I am proud of by all means, but something I, as a CHD parent, goes through more than I care to admit.  My reason for sharing this to let others know, including other CHD parents, that you aren't alone in the meltdown world.  Yes if you keep things bottled up, and not pray often enough, these little things will boil over and well.....you can see what happens as I shared above.  My lesson learned is exactly as I just wrote plus........every strong person will have time of weakness.  It depends on how we handle those weak moments that make us grow stronger and closer to Our Lord!

Blessings until next time!
Drena
     

Tuesday, July 22, 2014

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
 

Monday, July 14, 2014

Fragile Emotions!


      It seems to be a reoccurring observation, by the doctors, when we go for our follow up visits.  I see it becoming more apparent but, I have convinced myself that it's due to......puberty!  It is time to face forward and pay attention.  I need to focus not just on the signs my daughter is giving me, but what multiple doctors are observing.

    You know it is never easy, even after all these years, to hear and learn that there are things going on that aren't normal for Cora.  Each time I am informed or educated about something new, it's like being hit in the gut.  It takes my breath away, it's hard to swallow, and then my mind goes crazy with random thoughts that I can't seem to organize.  The most important part of these days is making sure Cora is protected.  That is one thing I must brag about Cincinnati Children's Hospital. Their staff truly has the patients best care at heart.  When they drop their bombs on me, they do remove Cora. She usually tells me "They must like to spend time with me."  Making her feel like a million dollars every time we are there, is something I am so very grateful for!

     So as I sit down to write, I am reminded, though I am filled with sorrow and confusion, I am not alone!  I may not be ready to share the new discoveries just yet.  My emotions may be in a fragile state.  I may be struggling to process the new discoveries BUT........ Because he bends down to listen, I will pray as long as I have breath! Psalm 116:2.  
     Until I can organize and process all the information I have received, I must leave you to wonder.  But my friend please know, I will make sure to include you in our next phase on our journey together!


Blessings until next time!
Drena

Thursday, July 10, 2014

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
 


Monday, July 7, 2014

If You Only Knew!

     All is quite as I check on each of my little gifts before I turn in for the night. Now that all my girls are back from camp I feel a small sense of relief.  Each had joyous times, and each are nestled safely in their own beds.  As I stop in each room I memorize their sweet childlike faces.  Coverup their little sleepy bodies, and sweetly kiss their cheek.  As I stand in the middle of the hallway as I do each night, grateful for each of them, I am drawn to Cora's room.  As I enter the doorway, I stand silently listening.  Darkness fills the room and only her breathing is heard.  Sometimes a beginning snore creeps in but, still breathing a beautiful pattern.  Standing here in the dark I must admit I do this often.  Just so I can hear her breathe! 

     Breathing is so second nature to everyone...me included...that I don't even think about it, let alone give praise that I am breathing.   With that said I realized I have not one time given praise to God for breathing life into me or my children.  A simple act of breathing, and I haven't thanked God!   Sad?  Maybe...  I have taken waking up and breathing in the morning for granted my entire life.....UNTIL I had Cora.  Silly as it seems I give thanks and gratitude often for Cora's.  

     Something as simple as breathing is a wonderous gift!  As I stand in awe so often letting the darkness surround me a beam of light shines through.  The beam of my daughter's breathe is not just a glorious gift given to her but one of the many miracles we as humans have received from God!
So for me....being a parent of a CHD child means "cherishing every moment, every breath with such intensity that I feel tears come to my eyes for no apparent reason."


Blessings Until Next Time!
Drena

Tuesday, July 1, 2014

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

Sunday, June 29, 2014

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

     

Thursday, June 26, 2014

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


Monday, June 23, 2014

My Reality Check!


     This morning started like any other Monday morning.  Prayer, coffee, kids, and out the door for our day's journey.  Having Cora at heart camp, my day would surely run a little smoother...one less to keep focused and on track.  Instead today was my Reality Check!

     As I sat to read through my emails this morning, there sat an eye catching email. An email from Heart Camp!  My heart skipped a beat as I opened it.  As I read each and every word, out loud, the words disappeared in a tear filled well.  Blinking quickly I finally could focus again.  I finished my email and instantly felt a rush of emotions.  I felt sorrow, worry, fear, and relief all at once.

     This year I told myself I would approach Cora going to Heart Camp differently.  Every year I constantly think about her and pray crazily that someone is looking out for.  Someone is helping remind her of the simple things we take remembering for granted.  This year I decided I'd try to look at it as my little mental vacation from the everyday care and reminding, with my dear CHD daughter.  Instead I was met with a slap across my face this morning.  

     You see no matter where your CHD child is, you can't ever really forget that you have a child with a heart defect.  Whether they are at home or at camp, they are always at risk of sickness, or cardiac arrest.  This morning my heart broke when I read of a heart camper who went into cardiac arrest while at camp, just trying to be a kid!  At that moment I understood, for the first time, when my Cora tells me she can't ever get away from being a heart kid....no matter what she does, or where she goes, she is faced from the moment she awakes the knowledge that her heart is fragile.  I do not know who this sweet CHD child is but, I have been praying all day for them.  I have been praying for all those campers who were there to witness a peer go through this.  I pray the camp has staff to help these sweet children coop with what they witnessed, and possibly feel daily.  I have been praying that the children are watched closely with this high heat this week.   I even prayed a very guilty thank you for it not being my Cora.  I am embarrassed to admit but, I was so full of sorrow for the camper and Mom who is dealing with this, but so relieved it was not Cora!

     I learned so much today, all before 7:30am!  I learned that it so very important to hug your children as many times a day as they'll let you...even when they are on your last nerve and you wished they'd go away for a little while!  Because this morning I felt a what if!!!  What if this would have been my Cora?  Did I tell her I loved her?  Did I show how aggravated I was by her obnoxious behavior when I dropped off for camp?  Did I hug her more than once, and kiss her?  

     So please do me a favor!  That moment when you think you just can't take another minute remind yourself........it could be worse!   What if that little sweet miracle of yours wasn't there at all?


Blessings until next time!
Drena



     

Saturday, June 21, 2014

Heated Summer!

     I bet every child is so very ready for summer, and every Mother is getting themselves prepared to keeping the kiddos busy for several months now that school is out!
     Personally summer is another transitional time of the year in our home!  With the heat arriving very soon, a new set of obstacles emerge for Cora and myself.  While many children are encouraged to play outside and enjoy the day....My daughter has to monitor her day outside...playing outside in spirts.  

     For Cora the heat, well..... it just isn't her friend!  As the temperature rises through the summer, Cora faces more issues.  The inability to breath well with any real physical activity, leads to a lack of oxygen, that then turns Cora's lips bluish purple, which leads her to begin breathing shallow quick breaths.  This is her way of trying to catch her breath but, it really leads to additional issues for her.  She'll begin to feel lightheadedness and dizziness. All of this results in extreme tiredness from being outside a short time.  

     For the most part she has been good at knowing when to take a break and go inside.  However lately....not so much!  In the spring I began to see Cora pushing herself more.  I see her trying harder to keep a connection with other kids.  I can see her pushing her limits even though her body is telling her to slow down.  Now that summer is around the corner, I am faced with a Momma teaching moment.  To express to a child that she has limits is not easy for any parent...especially one who deep down already struggles emotionally with the discovery of her uniqueness.  So here I am, at a moment where I need to sit down and explain the true effects that may happen if she doesn't listen to her body.  How do I this?.......well I haven't figured it exactly out yet.  I do know however I will continue to pray and ask God the guide me in this delicate conversation.  A conversation that needs education for Cora and understanding from her Momma.


Blessings until next time,
Drena

Thursday, June 19, 2014

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

Wednesday, June 18, 2014

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



Friday, May 16, 2014

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


Thursday, May 8, 2014

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.


Friday, May 2, 2014

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






     

Wednesday, April 30, 2014

Cora's CHD Complex Diagnosis!!


     Everyone is unique, right?  That is one of the glories God gives us as humans!  We embrace it and are proud, wearing it like a badge of honor!
     Heart children are no different....they are unique like others because God made them...but...they surpass uniqueness and move into a category many only have heard of, or read about.  Unless of course.... you're a proud parent of a heart child.  These little unique beings are true MIRACLES!!
     My daughter, who is now an official teen, is a COMPLETE miracle!!  Without the intervention of God's hands my CHD daughter wouldn't have lived but 24 hours.  As I watch my miracle continue to grow I am amazed at The Lord's work.


     So many family and friends know Cora has a severe CHD, but that's about it.  Some......I am sure don't really get it, nor even remember because she appears physically to be healthy.  So in hopes of educating I will open up and share all of the rarities my MIRACLE daughter posses.

This is my CORA!!!!!!!!!!

* AVSD: Atrial Ventricular Septal Defect. (This is a CRITICAL CHD).  The holes between the upper chambers of the heart allow blood to mix.

* Hetrotaxy Syndrome:  Heterotaxy syndrome is a disorder that results in certain organs forming on the opposite side of the body. Heterotaxy has been known to affect the development of the heart, liver, lungs, intestines, and spleen.  Cora was born with her organs all on the opposite sides, also known as Situs Inversus Totalis.  Cora's heart isn't on the left side like everyone else's.  Her heart is just slightly off center.  We were told if her heart was in the center of her chest she would have died.  There isn't any baby who has been born with their heart in the center of their chest and lived.  The heart isn't able to pump everything properly with the heart in the center.  It is simply to much strain.

* D-TGA: Dextro Transposition of the Great Arteries.  (This is a CRITICAL CHD).  Two main arteries carry blood out of the heart, main pulmonary artery & aorta are transposed.

* Situs Inversus Totalis:  All of Cora's organs are on the opposite side.  Her heart is also not on the left. It is slightly off center, which is EXTREMELY RARE!   If her heart would have been less than an inch to the right, hitting the middle of her chest, she would have died within hours because the heart can't pump all that is needed to and from properly.  No child on record has ever lived being born with their heart in the center of their chest.  Only a minuet few children have been born with their heart like Cora's, slightly off center.

* Pulmonary Artesia: Blue blood can't flow forward from the right ventricle to the lungs to get oxygenated.  A cluster of associated defects affects 1 out of every 10,000 babies who have this.

* Common Atrium: Characterized by complete absence of the atrial septum with two normally located atrial appendages.

* Bilaterial SVC: Superior Vena Cava: 


* No Spleen: Cora was born without a spleen.  The effect of not having a spleen is that you can be vulnerable to most infections. This is because the spleen helps to protect against infections. As the blood passes through it, special cells kill germs that may be present. So in essence Cora doesn't have much of an immune system.

* Twisted brain stem:  Cora's brainstem being twisted affects her cognitive learning, social interactions, thought processes, and learning.

* HRHS: Hypoplastic Right Heart Syndrome: THIS IS MORE RARE THAN Hypoplastic Left Heart Syndrome.  HRHS is a congenital heart defect in which the right ventricle of the heart fails to grow and develop appropriately.  This condition needs immediate and emergency treatment, as the heart begins to fail almost immediately after birth.  

* ADHD-inattentive type:  ADHD inattentive type children are generally less disruptive and active than those who have the predominantly hyperactive-impulsive variation of the disorder.
  Symptoms of inattentive type--which Cora has all are:
   * missing details & becoming distracted easily.
   * trouble focusing on the task at hand.
   * becoming bored quickly.
   * difficulty learning or organizing new information.
   * trouble completing homework or losing items needed to stay on task.
   * becoming confused easily or daydreaming frequently.
   * difficulty following instructions! and seeming not to listen.
   * processing info more slowly than peers.
   
There are a few other possible diagnosis that have recently been founded during her neurology clinic visits, but until they are finalized......well......this is enough!  

Blessings until next time.
Drena

 Cora Evette13 years old!!