Thursday, April 4, 2013

Labeled in a Disposable Society

Have you noticed that they do not make things the way they use to?  My parents dishwasher is the original from when they bought the house, over 30 years ago.  It is starting to show some wear, but it has lasted a very long time.  It has withstood many different changes and it has proven itself!  Our refrigerator is 6 years old and it needs to be replaced.  When we called about getting it fixed, they said it is cheaper to just buy a new one.  They proceeded to tell me that they do not make things the way they use to.  They said they make things to "go bad" in a couple of years because the styles are constantly changing and people want the most current thing.

So that is the type of society that we have become?  The one who has enough money to replace non worn out things so we can have the latest and greatest?  We are the kind of society to just replace it instead of investing some time and energy to make it last, to bring out the best in it.  We are the kind of society that we don't wan to stick with something too long in fear that we will have something "out dated."  We don't want to commit to something, we don't want to work at things and our society, in general, seems to not want to invest in something simply because that is the right thing to do.  Often times we want more, we want something out of it.

It actually disgusts me.  I really wish this was one thing that did not change.  As much as I never liked the fact that my mom's towels would not wear out when I was growing up, and we always had to have the same ugly green and orange towel; I miss that now that I am a mom.  As much as it is hard to teach your children the value of something or the value of working at something, it is something that has become a lost art in a world that has become so disposable.  We cannot even commit to Tupperware anymore, we have this cool thing called glad ware that we can just throw it away when it gets old or we forget it some where.  (I actually like it, but you get my point!)

What happens when you are labeled in a society that is so disposable?  What happens when you are not the cool thing in a society that tends to be so picky and choosy?  What happens when you are someone who needs some extra attention?  What happens when you cannot be just replaced or thrown out, but you need love and a little "elbow grease" to fully show your potential?  What happens to these folks?

I have to say that our society now does a great job at trying to include and mainstream folks with disabilities than they did before.  Often times folks with disabilities were institutionalized (I know some still feel that way, we had a doctor who recommended doing that with Lydia), or "locked-up."  The stigma with having a child who had a disability in "old times" was not looked on favorably by society.  Today it seems normal, we celebrate awareness days and months.  So probs to our generation that has accepted or at least has made more awareness for disabilities.

However, what I fear is what we are currently seeing or a strong trend towards eliminating things based on wrong perceptions.  Prenatal testing seems to be a hot topic.  However, if we do prenatal testing to make sure we are safe from Down syndrome or Trisomy 18/13, or other defects.  And if the test comes back positive instead of educating ourselves, we abort because we are scared, we do not believe that we are capable of this.  Or if we use prenatal testing for the soul purpose of gender or eye color or to pick and choose what we think we want, scares me.  We choose to abort and start over.  What about the belief that God created each of us unique and special.  So what happens when we test for the soul purpose of our choice?  We pick and choose what we think is important, even if we are uneducated by what it actually means.  (I am thinking about the case for Down Syndrome.  There seems to be a lot of myths people have with these kiddos.  Many people are uneducated and make a decision influenced by someone who has never interacted with a child who have Down syndrome.  Maybe the information they were given was outdated and no longer applies to Down syndrome.  As a mom who believed some of this stuff, I was shocked that most of the information was not accurate.)  We are doing things that I don't believe God ever intended us to do. 

Prenatal testing for the case of preparing yourself, getting therapies and meeting with doctors is a beautiful thing, in my opinion.  But to abort simply because of fear, a myth that someone put in your mind, the unknown, is devastating.  I think to have the information upfront is a good way to deal with some of the emotions.  However, I could not support it and it angers me to think that folks abort, kill a life, because of fear, little information, influenced by someone who had no place influencing them and the list could go on.  I just cannot support making a decision based on a label and then disposing of it to start over for something better.  It makes me sick.

Let me put another spin on it.  What if we all came with labels.  Mine might have said overweight teenager, liar, selfish defiant little brat towards mom.  I am glad that my mom chose to love me anyways, she helped shape and mold who I am today.  I think I was worth it.  I know my husband and my children would agree with that.  What if we could know the label of our children; murder, molester, cancer survivor, confined to a wheelchair after an accident, an adult who suffers from MS, a learning disability, an adult who discovers they have a rare disease?  The list could go on and no.  What if we knew ahead of time what life would have in store for us.  What role would that label play?  Would we still choose to love that person, or would we abort, walk away and choose to see what other kind of label we could get?  The problem with labels is that we all have them.  Some of the labels carry a bigger consequence, some are more accepted in society than others.  Are we less of a person because of our label?  Can a label accurately describe me?  Just because you meet someone with one label does that mean that everyone is like that then?  The questions are endless.  My point is that once we start putting labels on people, we start to walk a very dangerous line.  Again, where do we stop?  So why is having Downy syndrome or any other genetic defect that can be detected prenatally make it so horrible?  I understand the grief of not having a "normal" child, but why as a society do we think of something less?  What are we so afraid of?  I still have not been able to answer that question, and I walked through a lot of the same questions when we found out about Lydia.

So maybe I am being a little literal here, but really?  We want everything and we want it now.  We want it our way and we don't really care about anything else.  I think often times we close ourselves off to what could have been...what might be, for a growing opportunity.  We rob ourselves of some of the greatest blessings because we feel we know better.  I would argue that blessings come in all sorts of packages and we better be willing to open whatever package we get because we just never know.

And at what point are we satisfied?  At what point will that right "label" fit with our lifestyles?  It is the child who society says has everything, will marry well, have 2 1/2 kids, have a great job, be rich, have the white picket fence?  What is the right label?  How far are we willing to go to get that label?  And when will that "right" label not look good with our lifestyle and we will want to throw it away for the next newest, greatest thing?

What I am getting at, is we will never be satisfied when we have to choose ourselves.  See, we will keep longing for what the next person has.  We will keep wishing we did something different.  But if it is a surprise, if we are able to open that odd shaped package and experience all that it has to offer, I feel like we can be satisfied, that is what God intended for us because He knows us better than what we know ourselves.

I will be honest, our path with a child who has Down syndrome and many medical complications has been tough.  Just yesterday I wanted to give up, I felt like I did not have what it took to raise this child to face the complications of the day.  However, when she pulled herself up and looked at me with those gorgeous almond shaped eyes, my heart melted.  She has shown me a kind of love that I could have never imagined before.  I like to think that it is a love very similar to what God demonstrated to us by sending His One and Only Son, or what Christ did for us on the Cross, He gave His life for me.  She has a pure love, one that I have NEVER seen in all my 32 years of life here. 

I think back to the countless appointments, the frustrations, seeing her in pain, enduring yet another procedure, having someone tell me how far behind she is.  But I think to most of those relationships and how awesome they are.  I would not have those relationships if it were not for Lydia.  I would not have been able to be impacted by so many people if it were not for my daughter and her requirement to be at the doctors, in therapy, having another surgery.

I can only pray that she has affected all of those people as much as she has affected our family.  I look at our other daughters and think how blessed they are.  Yes, their life changed big time with Lydia came along, but they are such loving and caring girls because of it.  At this young age God is already using them and teaching them.  It is so amazing.  I can dwell on what I thought that they are/were missing. or I can bask in what God is teaching them and the wonderful young ladies they are.  They are learning things that most people will never learn in their entire lifetime...what a huge blessing for them!

It is not an easy path, it is very hard actually.  But it is one that I would not trade even a second of it.  It is tough to see your child in pain and endure procedure after procedure.  However, we all suffer in some way.  Maybe she won't have the emotional suffering like I did growing up.  Maybe she will be able to dodge that ball.  And if she doesn't I know she will be strong enough to handle it.  She is nothing short of a miracle, a hero.  She is a fighter and a warrior.  I am so proud to call her my daughter.  I am so glad that I knew this package was meant just for me and my family. 

I would like to think that every life is so special.  And even if your child's life was only meant for a moment here on earth, your child was special and made impact that no one else could have.  Those labels mean nothing in the scheme of things.  The labels scare and detract people from one of life's richest blessings.  And if my daughter's label meant that today she would die, I would do it all over again.  I would not trade any of those moments.

While some things are great as disposable items, a human life is not that.  While I enjoy labeling my file folders, a human life cannot have a label.  The label will NEVER accurately describe anyone.

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