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Tuesday, August 14, 2012

Just a few things to keep in mind :)

         I feel awful for neglecting this blog for so long, but sometimes I find it difficult to come up with writing topics.  It may come as a shock but we live pretty normal lives =)  I have, however, put together a list of comments to keep in mind when speaking to a parent of a child with Down Syndrome!   I understand completely that unless you walk in our shoes everyday you might not know whats appropriate and what is not.  So that's where I come in!!!

#1. "I'm Sorry"
     I can't tell you how many times Wyatt and I have heard "I'm Sorry" since Kayson was born.  I'm here to tell you that not only is this unnecessary it is also hurtful.  As a new parent, we want people to tell us how handsome our baby is!!! We want to hear "congrats"!!!!  I know people don't know quite what to say because they may not know exactly how the parents feel.  I can however tell you that "I'm sorry" is NOT what we want to hear!  There's an old saying "if you can't say anything nice don't say anything at all"... well that applies here :) 

#2. "I always wanted a Down Syndrome Child"
     I'm not real sure how to approach this comment.  Sometimes I have no response when I hear this, and believe me that is rare =)  I believe this is a comment that people make when they don't know what else to say.  I would NEVER change Kayson.  To Wyatt and I, he is perfect.  But we don't live in a fairy tale world and we can't.  We know Kayson's life will be more difficult than some people.  He is only 9 months old and has already under gone two stomach surgeries and two open heart surgeries.  Everyday we have therapy sessions that Kayson simply sees as play time with Mommy.  We've had our first "staring experience" because of course he looks a little different than most ( by the way I didn't handle this as well as I would have liked)  But still people say "I've always wanted a Down Syndrome child".  That comment just seems strange to me.  I love Kayson just the way he is, but if I could make his life a little easier I would in a heart beat.

#3. "God only gives SPECIAL children to SPECIAL families" 
     WOW!!!!  This comment still makes me laugh.  What makes Wyatt and I so "special"?  We are just normal people who would do anything for our little boy.  Am I a better mother because my son has an extra chromosome?  To me the answer is NO.  I would be the same Mom no matter what.  I would still see germs on everything he touches,  still not let him sit in the buggies at stores or the high chairs at restaurants without his handy little cover, and still freak out with every runny nose!  Please remember we are normal parents with a normal little boy.  We just have a few more doctor appointments and therapy sessions than most. 

#4. "Did you have the test?"
     I've heard this question with two pregnancies now and believe me it doesn't get any easier to answer.  "The test" everyone is referring to is an amniocentesis, which is a test that detects any genetic abnormalities.  With Kayson, Wyatt and I decided to have the amnio...we already knew about Kayson's heart defect and the blockage in his intestines.  We also knew Down Syndrome was a possibility.  For us the decision to have the test was for our own knowledge.  We wanted to be prepared, we wanted to give Kayson the best life possible.  This time around, Wyatt and I opted not to have the amnio.  We had Brinlee's heart checked ( she has a perfect heart)  and for us that was enough.  An extra chromosome is not a big deal to us!  As long as she is healthy that's all that matters. 

#5. "Down Syndrome Child"
     This might be my number one pet peeve.  Please, please, please put my child before his diagnosis.  Kayson is still a normal boy despite an extra 21st chromosome.  He likes to sleep late...beware of his attitude if you wake him ha ha!!!!!!!!  He likes his bottle as soon as he opens his eyes.  He has to have his stuffed monkey when he sleeps.  He thinks he MUST be center of attention.  He flirts with every girl he sees.  He makes my Mom (his Nonna) sing to him every time she is around, and he is NEVER quiet!!!!  Having Down Syndrome does not define who he is.  Kayson is a rowdy little boy full of personality,  and deserves to be recognized for that, NOT his extra chromosome!!!

#6. "All Kids with Down Syndrome are Such Angels"
     PAHAHAHAHAHAHAHAHA!!!!!! This is the funniest thing I've ever heard.  I will be the first to tell you that this is NOT true.  An extra chromosome does not determine a child's personality.  For example....Kayson has a temper.  YES he cries and throws fits.  NO he is not always smiling.  He gets aggravated when he doesn't get his way.  HE IS A NORMAL LITTLE BOY!!!!  Not all children with Down Syndrome are the same.  Are all "typical" children alike???  ummmmm no!!!!  Just because children with Down Syndrome all share the fact they have an extra chromosome does not mean they share the same DNA.  Kayson is still the spitting image of his daddy.  He has his great-grandfather's ears.  He has my personality.  He is loud, demanding, and never still!!!!  He is his own person who will grow up to be just what he wants to be. 

     I hope this post has been helpful.  I struggle with whether or not to say something when I hear these types of comments.  The older Kayson gets the more I believe things must change and I have to voice my opinion! As my husband always tells me "Kayla, if you don't tell me what hurts your feelings, then I'll never know"!!!!  So here's to telling the world what hurts my feelings and what could possibly hurt my son's feelings in the future!  Think before you speak and when in doubt just ask :)