Another Children's Hospital Appointment!

     Boy how time has flown by!  It is hard to believe it has been a year since Cora's yearly appointment at Childrens Hospital.  With her appointment just a few days away, I have begun gathering necessary items, and began  discussing with Cora what to expect.  Cora seems to do so much better if she is informed a bit in advance of her appointment and what is to come. Approaching it this way has helped reduce some of Cora's anxiety.

     Cora is such a trooper, since the time she was a baby, with everything.  It gets to me every time I listen to her talk about going to the hospital.  She has told me a million times, it's her second home.  That she feels safe, and not judged.  She says going to her visits make her feel like someone special.  Everyone knows her name and everyone is so kind.  Whether it's a 6 month appointment or a yearly appointment, the only thing she gets anxious over is the EKG.

Our last visit was difficult.  Cora cried after her EKG.  Her precious skin is so sensitive, and the stickies they have to put on her chest, arms, and sides are so painful coming off.  She always begs for me to be the only one to take them off.  As I do, I watch this poor little things body tense up as I work the stickers around her scars off.  She cries and tells me it hurts so bad!  I try so hard not to cry myself, because I feel so helpless.  Cora has expressed to me that she isn't looking forward to the EKG and asked if there was a way to skip it.  Unfortunately my answer is always the same......it has to be done sweetie!

     As I'm recalling this something has hit me.   Those strange little stomach churns, and a few restless nights were really my signs.  But getting that stomach churning feeling again I get it.  I am  nervous!!  I am nervous of what these tests may discover, I'm nervous more things have declined  over this past year.  I'm nervous I may have missed something being logged in her journal that could be of help to her cardiologist.

In just a few short days Cora will go through her normal testing.  She will have an echocardiogram, x-rays, and an EKG.  After all of the testing is completed and reviewed by her cardiologist, he will then meet with us and share the results.  For me that's the most difficult.  Listening to the new information, trying to process each piece of information given, then explaining it to my daughter.  As she has gotten older, she is more acute to what is going on with her health and her condition.  Sugar coating things isn't easy now, because my 14 year old warrior princess is getting pretty good at read between the lines!

     As Cora grows it seems to become more difficult for me to be strong.  I have always kept that strong outward image for my family as well as myself.  Beginning this blog has helped me reconnect with emotions I buried many years ago.  I have grown, and continue to grow and learn.  Thankfully God gave me a wonderful gift, writing.  The bonus.......God gave me the ability to share with all of you!  My friends far and near.

     So as this appointment nears, I will lean heavily on my faith.  I vow to also continue to strive to be open, sharing my emotions and the results of this up coming appointment.

Blessings Until Next Time!

Drena

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

 

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