Friday, February 8, 2013

Congenital Heart Defect Awareness Week, February 7th - 14th, 2013

My beautiful daughter, Aubrey, was born with a very serious Congenital Heart Defect (CHD).  A little over six years ago I had no clue what CHD was or how greatly it would impact my life.  Here she is on her first day of life.  Without all these machines to keep her alive and the surgical intervention that followed, she would not be here today.

Aubrey is almost six years old now, she is in Kindergarden, she loves hip hop dancing, she plays piano beautifully, she is passionate, loving, and has a smile that can light up a room.  

This beautiful little girl is here today because of medical intervention, because of countless hours of research and study, because of the dedication of the surgeons and pediatric cardiologists who have devoted their life to helping save little hearts like Aubrey's.

This is Aubrey's first year in school.  It has been a bit of a struggle.  It is obvious that she is a little different than her peers.  She has trouble keeping up with the rest of her class, not only on the playground, but with school work.  She is very sensitive and emotional.  The good news is she enjoys her time there, but I can see the next few years will be interesting as her school hours and class work increase.  

I wanted to do something for her class this year to raise awareness, not only because I believe in the cause and I am proud of my CHD Warrior, but because I feel it is important for her peers and their parents to be aware of what she faces in her life and how far she has come, so they have a greater understanding of her situation.  Her classmates will be with her for years to come and will be her network of support as she grows and faces more challenges in the future.  My feeling is  ...knowledge is power. 

Here is what I put together to hand out to her class for CHD Awareness Week.

A closer look to spare your eyes :)

I made 30 of these cute little red and blue CHD Awareness ribbon key chains to pass out to her peers, teachers, principal, and nurse.  Kids these days love to have as many keychains as they can on their backpacks, so I thought this might be better and more gender neutral than a bracelet.  We folded them all up and stuck them in envelopes addressed "To the Family of : whomever".

Let it be known, that this took FOREVER!

 As luck would have it, they were having "Community Day" in Aubrey's classroom today.  All the kids get to have a job and be workers in the community (classroom).  A super fun day full of dress up, props, pretend, and play!  Aubrey got the job of Mail Lady.  Perfect opportunity for me to deliver our message to her classmates.

Here she is all dressed up and ready to report for mail duty.

All set up at her post office, ready to stamp letters and mail them out.

Delivering her "Special Heart" letters for her friends to take home.

Seriously, how cute is she?!

I love that she is so proud of her special heart.  I can't even begin to express how proud I am of her.  She amazes me every day.  While I would not have chose this fate for her or I, I have accepted it.  I am even grateful for it at times.  I would give anything for her to never undergo another open heart surgery or suffer any pain, for that matter.  That is not reality, though.  What is real, is the gift of life that my daughter has been given.  That I have been given.  Something we all take for granted every day.  We all could die tomorrow, but when you are faced with a life threatening illness your perspective changes.  You live with the fear that death can be knocking on your door.  Ignorance is bliss.  That is true to some extent, but what I have found is that I now have a greater appreciation for everything.  My life, my sons, and most definitely Aubrey's.  There are still times when I am sad and I get lost in the worry of what will be, but one look at her reminds me of how none of that really matters.  All that matters is what I am doing right now.  Being the best mother I can be.  Being present.  Being patient.  Being in tune with my intuition.  Being focused, determined, and strong.

I have to admit, I feel a little odd about passing out the CHD awareness information.  I second guessed myself a thousand times.  Is it too much?  Will parents think I'm going overboard?  Will the teachers think I'm insane?  Is it too personal to share?  In the end, I had to go with my instinct, which was to be an advocate for my little Heart Warrior.  Spread awareness.  Knowledge IS power.  The more people understand her the less they will judge her and make assumptions of their own.  The more the teachers, nurse, and principal hear about her condition, the more aware they will be, the less likely her condition will be ignored.  It takes a village ... and we need all the love and support we can get to keep her healthy and well.  

Without awareness, these 1 and 100 babies that will be born each year with some form of CHD will not have a fighting chance at a long healthy life.  Awareness brings funding for research, which leads to a cure.  There is so much hope for these children.  Take one look at that beautiful little girl ... I was told to terminate when she was diagnosed in utero at 21 weeks.  She is now a happy, thriving, nearly six year old little girl.  

There is so much hope.  Please help support CHD by donating to the American Heart Association, Saving Little Hearts, or by becoming a blood and organ donor.   Donating organs and blood saves lives like my daughters.  

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