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...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