The Angst Within!

    Countdown to Heart Camp!  For the last two months, the majority of Cora's conversations are about her excitement for Heart Camp!  As time draws near, her excitement is getting more difficult for her to control.  Other facets of her personality start to creep in.

     I have gotten use to reading her personality signs, and most of the time I can identify when things start to escalate in her little mind.  It is wonderful to see my Cora's excitement for summer camp.  Her excitement includes being with other heart kids that won't judge, to having a week to be with children who can relate to things other heart healthy children her age may not.  But along with that excitement, I start to see the angst in her eyes, and the tone of her voice change.

     I see her anxiety start to over rule her excitement, and her body posture begins to change.  Then....the what ifs begin.  What if I have that counselor from last year who yelled at me all the time, and said horrible things to me and my friends?  What if the heat is so bad Mom I can't breath well?  What if I collapse like the girl did last year?  What if it storms really bad?  That this point it becomes my job to take hold of the what ifs, and bring Cora back to the simple positives.

Once the focus has changed back to the fun of heart camp, and what it means to Cora, we are back on the excitement train!

     I believe, for Cora, Heart Camp is like her home away from home.  I believe she looks at heart camp as her place to be her raw self, and not be judged.  I believe, for her, it's a safe place to share things she goes through, that she doesn't even share with me.  I believe that without Heart Camp, their would be more sad days, followed by more anxious behavior, and depression.

     I wish I was powerful enough to wipe all the anxiousness from Cora.  I wish I could tell her that all those what ifs would never happen.  I wish I could make everyday Heart Camp for her, but I simply can't!  I can however give her one week to flourish!  One week where her spirit takes flight!  I can give her Heart Camp!  

     So thankful for Cincinnati Children's Hospital and the wonderful folks who put together this one magical week each year!  Our family, especially Cora, wouldn't be the same without this glorious Heart Camp!

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