A Special Letter!

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

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

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

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

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

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

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

I love you peanut!

Momma

Meant To Be!

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

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

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

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

Blessings Until Next Time!

Drena

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

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