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Friday, January 6, 2012

What is Normal?

I've always wondered why God didn't give me a filter!  What I mean by that is...if i think something then I usually say it out loud!  Which can cause problems more often than not and I've always struggled with it.  But lately I've been thinking, and I think I know why He chose to give me this voice.  It's never been about me....God has been preparing me for Kayson for a long time and I never knew it!  I'm Kayson's voice!!!!  I am his biggest fan, I am his advocate.  So I'm just going to vent and give my opinion on a few things.  As a parent of a child with down syndrome there are certain things you don't want to hear.  Unfortunately society has this preconceived notion of people born with down syndrome and I want to change that.  I might be fighting a losing battle but I'm going to give it my best try!!! Please keep in mind this post is about my personal experience and beliefs.  My goal is to give an insight into our lives and hopefully change your views on children born with down syndrome!!!

I recently went to the doctor for my post delivery check up and the nurse was going through the usual questions about how I was doing and then asked a few questions about Kayson.  I mentioned that he was in the Nicu for 6 weeks and naturally she asked why...So I went through my usual spill that he had to have a few surgeries and then I said " and he was born with down syndrome".  She looked at me as if I had just told her the saddest news and then said "I'm sooooo sorry"!!!  Now of course I kept my cool but inside I was hurt and aggravated...Why is she sorry????  A couple of days later I took Kayson to his pediatrician's office for his immunizations and the nurse was weighing him and checking his length and started asking some routine questions about his health.  I have all his medical history down pat...I know all about his surgeries and who performed them, I know his medicines and the exact doses, I know what his heart rate and pulse are on a regular basis, and his blood type.  So we breezed right through that but then she said something that I've come to dislike very very much.  She uttered these two words..."downs baby".  Now for those who don't already know...please don't ever ever say those words and I'm going to explain why!  I was discussing this with a friend of mine, who's child was also born with DS, and she said it perfectly...when we look at our children we do NOT see "our down syndrome".   We simply see OUR SONS!!!  Hints the name of this blog...HIS NAME IS KAYSON =)  You see he only has a diagnosis of down syndrome it's not who he is!!! So why the label???  It would be like me calling a person diagnosed with cancer..."the cancer".  It doesn't make a lot of sense does it?  The cancer doesn't define that person it's just something that happened to them, and it's the same way with Kayson.  Our pediatricain explained it so wonderfully...he told me he would never refer to Kayson as disabled or special needs!!!! He said " Kayson is simply a little high maintanence".  He's not "special" because he has down syndrome, he is special because God made him just as he was meant to be.  There are so many words and phrases that we use in everyday life that can so hurtful...I've been guilty of them myself.  And that is the point of this post....I want to educate.  I want Kayson to grow up and know he can do anything his heart desires.  But I also know he will constantly have to prove himself because again society has this idea of what a person with down syndrome can and can not do.  We were told by a doctor to expect Kayson to be mentally retarded.  Not because he performed any cognitive testing, because that's not really possible on a newborn, but because that is a possibility and is what our society expects.  I know this post is getting long but I need to get my point across! I say all that to say this...We don't know what the future holds for Kayson.  But we are giving him every opportunity to succeed.  He has started early intervention and I'll post about that the further we get in to it.  He sees a speech and physical therapist, and we will be learning sign language to help him with his communication skills.  He WILL hit all the milestones any other child would.  He may just reach them a little later than most and what's so wrong with that? Nothing is and Kayson will do things at his own pace and that's fine by me!!  So to wrap this up just remember that not everyone is the same.  Life would be pretty boring if God made us all the exact same way huh?!?!?!?  No one is "normal", we all have something about us that makes us unique and interesting.  God never makes mistakes, everything that happens is just according to his plan =)  So before you judge someone put yourself in their shoes.  Would you want to be labeled????

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