That Little Nudge!

     While I was pregnant with Cora, learning of her Congenital Heart Defect, I made a decision!  I knew this baby would be my only.  I just couldn't live through another pregnancy with the possibility of having another CHD child.  I couldn't bear to bring another child, fighting so hard, into the world.  I was determined that no matter what, boy or girl, she was my one and only child!

     Fast forward in life, and guess what?  I began to feel God laying before me options.  Options to think about adding another child to our family.  I was very hardheaded and didn't want to listen to the suddle hints.  I recall declaring to my husband, God would have to shake me silly before I would ever bring another baby into the world. 

     It is so sad to look back at this me.  I was so frail and young in my faith.  I thought I made all my decisions and, my way was THE way. I truly believed everything rested in my hands.  My family, and the entire world rested on me to take care of everything!  I'm so grateful God didn't give up on me then.  I'm so grateful God continued to mold and educate me.  I'm most grateful that God taught me the importance of leaning on him!  

     So there I was, middle of the night, sleeping soundly.  Cora was a couple years old now, and I was a hot mess of a CHD Momma.  But, I leaned heavily on Jesus, and began my journey of prayer.  So out of nowhere I had a conversation with God in my sleep.  Honestly I listened without saying a word.  That was the first time God spoke to me, and.....I actually heard him.  I remember my eyes popping open, clock read after 2am, and I began shaking my hubby's arm.  I could the words escaping from my mouth, and that little part in mind was saying, huh, what, am I recalling correctly?  Did God really just speak to me and give me these vivid details?  By now I was sitting up and about ready to explode with information.  I preceded to tell my hubby what I was told.  Smiling I informed him, it was ok to grow our family.  Our baby would perfectly healthy, no heart issues at all, and.......it would be a girl!  Sure enough time passed and all the extensive tests were done, and guess what........our baby was heart healthy, and a girl.  All I could do was smile at my hubby and say "I told so!"

    To this day I hold that moment with God dear to me.  I would walk the world sharing my moment with God, to give people hope, to share that God does more than just exist.  God feels, God hears, and God loves us.  Oh yes, I still fight this mental demon!  My mind still stumbles and I begin thinking everything rests in my hands.  That I must carry everyone in my family, and be the strong pillar that has all the answers, and everything under control.  But my daily prayers, and Jesus' arms to guide and carry me at times, that demon would take up permanent residence in my mind!  I believe with all my being that God gives us that nudge when we need it, and if we are open enough, we will hear him!  Some of the smallest moments are God's greatest!

Blessings Until Next Time!

Drena

Outfit Of Strength!

   Being a CHD Momma seems to add pressure undiscovered daily!  Everyday I try to put on that outfit of strength.  I walk out my door ready to greet the world in my wrinkle free armor of strength, however within seconds....I feel like I've been stripped of my strength and invaded by the harshness of life!  I'm now standing at the door completely exposed to the world.  I'm fighting a battle every second of my day, unarmed and falling to pieces.

     It seems to begin early in the morning with Cora forgetting to take her medicine.  Reminding her constantly makes me feel like a nag. The kind reminders have now become loud lectures!  We are steps from being out the door and the discovery that she still didn't take her medication is realized.  That sets the dominos falling!  Now a homework assignment is just remembered and, of course, incomplete.  Of course, then it snowballs into the discovery that the lunch box was left on the kitchen table, not once but twice, and we have to beat feet back into the house.  This then triggers the, I need something else but it can't be found.  Then the the icing on my already crumbling cake.  An anxiety attack within Cora starts.  It's like the boogeyman is lurking around each corner, waiting for me!  He knows he can instill fear, and I can feel him trying to break me down.  He's prowling around trying to see how far he can push me until I break.  Quicker than a blink of an eye, reality hits, BOOM!  

     Now the stress of juggling everything is in full swing.  I must keep everything flowing so we don't run late for school.   I have to work with Cora during her anxiety attack, get the lunchbox from inside, keep each daughter moving forward, and somehow find a way to get her assignment completed within the next 27 minutes.  My armor of strength has disintegrated, and I'm barely hanging on!  The worst part, it's only 7am.

    I wish I could say everyday doesn't go this way, however that would be a lie!  Some days are far worse than others, but everyday is a struggle.  Everyday that strength of armor gets ripped, and I am beaten and worn down by the world.  Many nights I pray for rejuvenation and healing of my strength.  I beg for better ways to improve our mornings, and give praise that I seem to juggle it all and make it through.

  I get that everyone has their life's roller coasters rides, but lately I feel like I live on one.  Every time the ride stops the bar doesn't move and....I  simply can't step off the ride.  Quicker than a blink of an eye, reality hits again, BOOM!

     Motherhood is challenging yet reward within itself, but honestly there have been days that no matter how many prayers I pray, no matter how many self pick me up talks I have to do during my day, there are times I end my day deflated and beaten.  Despite all this there is still a silver lining for me!  God wakes me the next morning for another chance to be better, in everything, than I was the day before!  He breathes new hope in me, and believes in me!  So I shall rise tomorrow, wearing my armor of strength and see what the world awaits for me!

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

 

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

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

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