3-21

Every year on 3-21 I think about Oliver and how he has changed our lives.  March 21st is World Down Syndrome Day.  Typical individuals have two copies on the 21st chromosome.  Individuals with Down syndrome have three partial or full chromosomes on the 21st chromosome.  I won’t lie!  I do get frustrated and I think there is a day for EVERYthing!  But, this is a day that I can sit back and appreciate all the strides and hard work that our society has made to medically and legally protect our children and buddies.  I know that we still have a long way to go, but I also know that we have come such a long way. And for that, I am so grateful.

Oliver is getting bigger and it seems that we are getting more and more stares.  Most of the time I can just ignore it.  Other times I laugh it away.  Sometimes, I will introduce the person to Oliver.  I feel like maybe they are curious and just don’t know what to say.  Oh, and sometimes Oliver makes this annoying noise (because he still only has a few words) and people stare like he is a crazy kid!  That is when I want to cry!  I have inappropriate laughter and my eyes fill with tears.  (It makes my husband so upset). I really just don’t know how to handle the situation.  I really think it is a protection mechanism so I don’t go insane!  Each day I try to do the best I can do.  If I mess up, I try to do better the next day.  That is all I can promise.  Life isn’t easy.

Oliver is AMAZING!  It is so hard not being able to communicate.  He is getting more and more verbal.  He has his “talker” and does a great job with communicating with us.  But, there are times I think he just doesn’t know how to communicate what he needs to us.  Pain is a hard one.  I just don’t know how to teach “pain, ouch”.  He does have some signs that he uses, but we aren’t really doing a ton of signing since the majority of the population doesn’t know sign language.  We just use key ones when we are at home.  It really is helpful!

Last night, I laid in my bed and I couldn’t sleep thinking about Oliver and the past (soon to be) five years.  I have used the popular phrase Down syndrome community “more alike than different” numerous times.  As I lay there I really didn’t like that phrase.  Oliver isn’t like anyone.  He is nothing like my other kids!  He is very much his own person. Yes, he might look like his older brother, but that is about it. “More alike than different”.  It is saying that it isn’t ok for them to be different and I am not ok with that phrase anymore!  It is ok to be born with Down syndrome and it ok to be who you are as an individual with Down syndrome.  I don’t ever want to take that away from who Oliver is as a person or make him feel like he is less of a person because of Down syndrome.  The thing is we need to be taking their individuality and those differences and we need to be embracing them for who they are- perfect with all those beautiful differences!  God has a purpose and plan for Oliver.  God created Oliver and made him fearfully and wonderfully.  He is nothing less than perfect!

I love Oliver so very much and would love to change this world for him!  He is such a ray of sunshine.  Unfortunately, he is learning that not everyone wants a hug.  There has been so many times I have seen kids push him away.  Break a mama’s heart!  But, I know there is someone else that will gladly receive that hug!  If not, he has a whole family and extended family that would gladly hug, snuggle, and kiss him!