Thursday, June 9, 2016

HLHS and ronald mcdonald

My daughter has Hypoplastic Left Heart Syndrome.  She only has half of her heart.  On Tuesday she participated in a study at Children's Mercy Hospital for single ventricle kids.  She did extremely well and I am so proud of her.  She normally has a flair for the dramatic, but this time she reigned it all in and performed to the best of her athletic ability.  For a kid in her condition she is very healthy.  She can do almost everything she wants, it just so happens she hates sports.  Usually we go to a smaller hospital closer to home that is a branch from the main children's mercy, but this time we had to go to the main hospital.  The same hospital that she had her first three open heart surgeries done.  I have PTSD.  Just trying to remember the route in which to travel to get there put me into a tail spin.  Remembering the sights and the turns.  The land marks.  I really, really, did not want to go back there.  I hated every second of it.  While in the research lab, all was fine.  I had never been there before, my daughter did well and so did I.  But the parking, getting into the stupid Yellow Submarine elevator, seeing the tree the homeless man slept in, all made me a bit on the crazy side.  I cried the night before.  I just couldn't seem to deal with the anxiety.  I have a friend that has triplets and had similar experiences with their births.  Not heart related, but still serious health issues.  She has similar problems with dealing with her memories.  I know I am not alone in all this.  It just feels like it.

Anywaaaay,  the pictures posted is her donating pop tabs to the Ronald McDonald House.  The box is full of tabs.  We thank everyone soooo much, but hey!  Not so much pop ya'll!

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