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Gina M Hayes

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My Personal Trip to Holland
By Gina M Hayes
Friday, November 06, 2009

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Gina adds her personal touch to a short story by Emily Perl Kingsley, which compares being a parent of a special needs child to an unexpected trip to Holland.

I'll never forget the little story Erma Bombeck told about a traveler who intended to land at a certain destination but ended up in Holland.  It's not where they intended to go but Holland had so much beauty to appreciate that the traveler learned to appreciate their alternative destination.  She told this story as an analogy of a parent who thought they were going to have a "normal" child, but ended up with a child who was disabled instead.

I have two sons with disablilities.  My older son, Robby, who is twenty five, has two syndromes.  One affects him physically the other mentally.  He has Eagle-Barrett Syndrome or Prune Belly Syndrome.  This is a major birth defect that affects the forming of the urinary tract.  It ultimately affects the kidneys and abdominal muscles.  He has had over twenty surgeries to reconstruct his abdomin and urinary tract and a kidney transplant.  I gave him a kidney when he was eleven.  His original kidneys were never normal and we lived those first eleven years with anticipation that they would give out.  I was so happy that I was a match.  What was really difficult, was having to plead with the transplant team to let me give him my kidney.  The other syndrome he has is Fragile X.  It's the leading genetic cause of mental retardation.  For this reason the doctors didn't feel that I should risk my life for him.  This was not the only time I have had to advocate for my special son.  This was excrutiatingly difficult.  I couldn't understand how they could even suggest such a thing as "not doing anything at all,"  much less not let me give him a kidney. The medical community rates people's quality of life much in the way the jury is instructed to award damages to family members who have lost either a non educated domestic worker or a professional.  Your worth is what you do, not how much you are loved.  I was grateful that they did agree to let me give him a kidney.  It lasted for six years.  He is a hemo-dialysis patient now.  My husband and I accompany him to his treatments, and ensure his safety and comfort while on the machine.  We are his voice.  Even now his nephrologist is looking in to the possiblity that he is being passed over for a transplant without telling us.  He is going on his ninth year of hemo dialysis without one single call to come in to test for a match...

My other son, Joshua,  who is twenty one, thankfully, is healthy as an ox, but he is also mentally retarded and falls in to the autism spectrum.  He towers over his older brother, because Robby's growth was stunted due to his renal problems.  Joshua's speech is very minimal, but he understands everything.  He is over six feet and is a very large young man.  His looks can be intimidating, but he is a very gentle, Walt Disney loving soul.

I have written other posts about them.  I've struggled with educators, and school districts.  I've argued and cried over cold and cruel health care givers.  I've mourned every milestone they could not achieve.  And if I let myself, I could fall off the deep end worrying about what is going to happen to them when I'm gone.

Here's the Holland part.  They are funny, scheming and lovable guys.  They love to laugh, watch movies, ride in the van, go out to eat, play basket ball in our back yard, take bubble baths, eat snacks, give lots of hugs and kisses and joke around.  Every day I get a new chance to improve as a parent.  They are so forgiving and have taught me so much about unconditional love.   I don't have to wonder where they are in the middle of the night.  I don't get calls from the police department because they broke the law or got in to an accident.  There are no angry parents complaining that either one of my sons got their daughter pregnant.  They appreciate everything my husband and I do for them and they are always sincere.  They don't know what it means to be a fraud.  They are pure and beautiful souls.  I feel they are the way our creator wants all of us to be.  I am privleged to be their mother and I wouldn't trade them for the world.

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