Wednesday, August 21, 2013

We Interrupt Your Life For A Test

I have been reflecting a little lately.  Sometimes that is bad and sometimes it is good.  I have read past posts; something that I don't often do.  I usually write what is on my mind in hopes that one day I will be able to come back and look at it.  That is how I have done my journaling since this journey has started.  I try to be real and very honest.  So it hits me pretty hard when I read what I have wrote (also sometimes is am embarrassed by the sentence structure and words...but that is what happens when you do not proofread!).  It is a reality show in the making on a blog post or a caring bridge website!

The other day as I was walking and just spending some quiet time with God, it struck me as odd that a lot of times I am defending Lydia and her life.  I am making excuses or trying to plead with a total stranger as to why Lydia is the way that she is.  A lot of times the world is saying something and I am trying to defend Lydia from it, justify something, or prove her importance in some way.  It really saddens me that a lot of times society looks at her as a burden, as a drain on society.  I will not even get started on my soapbox of how wrong that is.  However, it opened my eyes to a whole new way of thinking.

I have said it before and I will continue to say it, Lydia is not a mistake.  Lydia was designed and created specifically for our family with a purpose in mind.  She is not junk or left overs.  I did nothing wrong to get Lydia.  I am not being punished because I have Lydia.  She is a new perspective on life.  She is a breath of fresh air.  She challenges me to learn.

So what if everyone had that perspective.  Entertain the thought for a second that she is a test of who I am, who my husband is, who our friends are, what our faith is, who our community says they are, who are schools are, who our family is, who her sisters are.  She was put here to "test" us to see if our love is real.  To see how we act in situations of stress and fear.

Don't get me wrong, I don't feel as though she is a test.  But I was thinking back to a quote about our character is defined by our actions in a struggle.  It is our actions that speak louder about what we feel and what we believe than our mouths.  So what does that say for families who welcome children and adults with special needs into their lives?  I would say that is an act of love, a sacrifice beyond oneself to demonstrate love for their neighbor.  Isn't that the GREATEST command that God gives us?

Backing up for one second.  My husband and I decide to get pregnant.  I have always said that I don't care if it is a boy or girl; just that the baby is healthy.  I NEVER once entertained the thought of actually having an unhealthy child.  It just does not happen to me; to my kind.  That sort of thing may be OK for that person or that person, but not me.  I take care of myself, I was fairly young when I had her, I ate what I should be eating, I biked 5 miles a day, I did not smoke, I did not drink, I drank a lot of water, I got plenty of rest, and I had two other healthy kids.  But an unhealthy child does not discriminate.  It is just as easy for me to have an unhealthy child as it is for the next mom.

But at that very moment when we found out that she was going to be unhealthy and have Down syndrome, I believe the first test started.  See, I said that I valued life, I said that I did not care what gender the child would be; we just wanted one to love and to hold and to try to give the best life possible to.  See, many fail this test.  They forget what they say.  They allow society and ugly rumors to get the best of them.

Fear is a HUGE part there.  Often times there is a doctor that is not supportive, there is a spouse that is not supportive, another family member.  See this chain that is starting to happen.  Are your actions supporting your words?  I would be that many people in that situation do not think of it as that....a test.  It is pretty easy to see.  I understand the new term to abortion is putting the baby to sleep, fooling yourself that you are better without that child.  Remember, it is a test...are you going to pass or fail?  Will you allow this test to interrupt your life?

Each passing moment with Lydia is a test.  But it is the same with my others.  I say I love and I say that I am a new creation in Jesus.  Am I living that?  Can people tell that about me?  I hope so.  I have not won a battle because I chose life for my daughter, that is the only logical choice. This test is a journey, it will last for a lifetime.  This test will not be over until you are in heaven.  This test will never go away, but rather I would challenge you that it would be a reminder of who you are and who you say you are.

See if I say I love my neighbor, I better act like it.  To end a life because it may be different than mine is not loving.  Love is a choice.  Love is a sacrifice.  And contrary to popular belief, I don't have to pamper and take care of myself in order to love.  It is not about what I receive but rather what I give.  Love is putting the other person in front of your own needs.  We don't do that too much in society these days.  Love is choosing every single day to love in the worst conditions.  Love will hurt.  I know that it hurt Jesus up on the cross for me. 

This test is something that does not go away, but allows me to demonstrate in a very powerful way my love, my ability to love.  Yes, I am going to fail at it.  I fail a thousand times a day, if not more.  But each time I fail, I learn.  If I was not failing, I am sure that I was not loving.  See, there are really no right or wrongs on this test, it is just proving to yourself who you are and what you are capable of doing.  It is proving that you should not listen to the lies of the world. 

If you are in a community where there are people who have Down syndrome, you constantly hear the opposite of what the overall stereotype is.  Like each flower is different, so is each child with Down syndrome or without.  There may be some things that can "classify" them into a group, but that will NEVER define them.  I am "classified" as many things, but that does not define me.  My husband is a Spoor and usually there are bad tempers associated with that.  While he did battle that for a long time, he overcame it and it does not define him.  That is not who he is but he still gets classified as that.  I am a woman I am suppose to wear make up and dress fancy and have my nails done.  That does not define me; I don't like doing that.  I prefer natural beauty.

I would further say that this test of having a child with Down syndrome or having a child with significant medical issues is no different that having a typical child.  My typical child is almost seven and still cannot eat neatly to save her soul.  Drives me crazy.  There must be something wrong with her!  We just have to work with her over and over and over.  She struggles.  It does not define her, it does not make her a bad person; but it is an area that she struggles with.  Somehow in a typical child it is easier to overlook that than in a child with a diagnosis.  Lydia eats much neater than my oldest girl.

I would say that this test that I am experiencing with Lydia is teaching me and allowing me to spread my wings.  It is allowing me to walk the talk that I am talking.  It allows me to see how my husband and children, Pastor, friends, family, community and neighbors are walking too.  It allows me to see how important love is to the people who surround me.

I think most times people fail at the beginning of this test when they listen to what the world says and they don't even try to experience what this journey has to offer.  I think most times people fail when they listen to what the world has to say and they constantly feel like they have to defend their son/daughter.  I think when you listen to things that are contrary to love, it is extremely hard to do well in this test. 

She may never be this or that, but that is not her path God designed for her.  She may never do what I had hoped she would do, but she is going to do exactly what Lydia should be doing.  I don't have to make an excuse for her, she has just as much right as I do.  We have allowed society to take over and trick us into failing the test.  We have listened to lies long enough that says she is not worthy, she is too much work, she is different, she will never be a productive member of society, she will drag you down.  It just is not true and it is not spoken in love.  No matter what, I am to love her and that means putting her needs before my own.

So what do I get?  Pure joy and bliss.  Last night I was exhausted, questioning if I could even go on.  Music came on and she started to dance and laugh and just enjoy that moment.  She got wrapped up in the moment and I totally forgot that I was exhausted.  I could not stop looking at her and just smiling.  She has a way to just melt your heart and take you captive in every single moment.  Yes, a different journey, yes an interruption to what I thought life would be like; but oh so very welcomed.  See in that moment that she was wrapped up in, she too forgot that the world told her she had a disability and she started to walk and dance.  It is amazing.  If you let down those boundaries the options are endless.  So I get blessing after is amazing.  And really, if I am loving as Christ loved me, it does not matter what I get!

This test is worth a thousand words.  This tests exposes a picture of your talk.  I hope mine is matching one another.  But I feel blessed that God knew I was strong enough to handle it.  He has blessed me beyond words, He has opened me up as a person and is making me who He wants me to be; just as He will do with Lydia.

I no longer need to defend Lydia's life and prove why she is here.  I need to simply continue to do my very best on this test.  I need to keep loving my neighbor as myself.  I need to keep making sacrifices and I need to keep putting others before me.  That is the true test of love.  Lydia is just as important as anyone else and I will no longer listen to what the world says she is not!


  1. Do you consider Down syndrome to be unhealthy? I don't at all. To me it's something that is a part of my son like his thick dark brown hair, his chocolate eyes and the moles that he inherited from me on his arms and legs. Down syndrome is not a disease, so therefore any child that has it is not unhealthy at all.

    1. Stephanie,
      No I don't consider Down syndrome to be unhealthy. Our daughter was born with many medical complications and that is the unhealthy I am talking about. However, Down syndrome does come with many health issues sometimes and that is one of the false stereotypes. We accept our daughter for who she is and love her just that way.
      Maybe my writing was not clear enough or it was misunderstood. We concentrated on her medical issues first. I hope that makes sense. Just did not want you to misinterpret what was said. Down syndrome rocks in my opinion! I write about them hand in hand because she is not Lydia without her scars!

    2. I've read your blog for awhile, so I know that she has more medical challenges than most others with Ds. The sentence that caught me off guard was when you said that she would be born unhealthy and have Down syndrome. I thought you were equating the two as one.

      I know lots of families with kiddos with Ds and a good portion of them don't have any health issues. Down syndrome can have such varying effects on individuals! Our son has heart issues, including undergoing heart surgery when he was 4 mos. old, that have mostly been resolved at this point. But you never know when something else can happen out of the blue.

      I am sorry that you are having so many troubles with feeding and sleeping (I read your caring bridge site). I hope things settle down soon for your family, especially Lydia.

  2. Thanks. I will change that. I don't want anyone to think I think Ds is unhealthy. Lydia just happen to have both. It was funny because in the hospital people would comment about Down syndrome and it would hit me as odd. We never focused on that because of all the medical needs.
    Glad your son's heart is good. He's a handsome little fellow and looks like he keeps you very busy!
    Thanks again!