Monday, April 4, 2016

A Huge Burden

I saw it there on the page in black and white for the first time in her over eight years, "Sophie is a huge burden to her parents."  I know it must not be the first time anyone has thought it, but I have never heard it said to me or seen it written down with my own eyes...until that day.  I know the context in which it was written, I know and love the person who wrote it and I know they love our precious girl.  I know that it was written in order to help us in the fight we are in right now for services for our girl.  I know all that and I am not mad at any body...but those words!!! Those words are a dagger, no a bullet, no a there really are not words for those words and the damage they can do to the mind and soul.

Satan intended those words for me on that day...and they dug deep into my being.  I felt like dropping to my knees at that very moment, hanging my head down and pouring out every tear inside of me down my face and into my hands.  I looked up from those words searching my surroundings for something, anything to distract me long enough to swallow all this mess down.  I longed for even the smallest thing to grab my attention and my focus away from the these words turning over and over in my head. They were being branded into my mind.  These words were intended for me.  The enemy intended for me to read these words on this day.  

Right there on aisle 8 in between the paper towels and the paper plates, I read the email that held these words..."Sophie is a huge burden to her parents."  Sophie is a lot of things to her parents but never ever a huge burden.  These words hurt me deeply. But I wondered...does someone need to hear these words or read these words in order to approve help for us in taking care of our daughter in our home?  That is so sad to me.  I have seen, heard and read some incredibly difficult things about my daughter in these 8 years.  I have read things like hypoxic ischemic encephalopathy, gastrostomy tube and seizure disorder.  I have heard things like, "she will never walk or talk" and "she will never know who you are," by the way they were wrong about that second one big time, but today these are right up there with the worst of them.

I know the reason these words hit me so hard is because she's mine.  I feel like the world would agree with these words though.  I feel like from the outside looking in most people would not even take pause at these words, even more, many would agree with them.  She has to be a burden, doesn't she?  How could she be anything but a burden to those around her?  And I think that's why this digs so's the lack of understanding, it's having to attach the only words we know to situations and circumstances of which we know nothing.  Folks look at her and they are scared to death, in their minds she is only associated with bad, tragedy and all the other negative words they can think why not burden.

Everything in me wants to come at those words with everything I have.  My response though is pretty simple get to know her, get to know someone like her.  Her worth is not found in diagnoses, her abilities are not bound to her wheelchair, her identity is not tied to labels.  Quite the opposite, her Creator speaks very clearly to who she is in the book of John. 
"As he went along, he saw a man blind from birth.  His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind? 'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the works of God might be displayed in him'" (John 9:1-3).
And again in the book of Corinthians...
"But He [the Lord] said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.'  Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  That is why for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties.  For when I am weak, then I am strong" (2 Corinthians 12:9-10).
Instead of turning those words over and over in the dialogue of my mind, I will listen to the voice of Truth.  We are all broken and sinful people who have been chosen by a holy, righteous God.  She is not a burden, she is chosen.  My beautiful girl you are chosen.


Theresa said...

If you get to know her, then you know she is chosen. I often ponder the lyrics "this world has nothing for me". I sing them but I know they aren't true for me. I am conformed to many things of this world that I love. I don't really want to be transformed away from them & I certainly don't won't to leave them behind. But when I am around SK, I see someone who this world actually holds nothing for her besides the interaction with her family and friends, And yet- she has a smile that lights up a room, she has a spirit of peace that is calming to be around, she emits such joy. My joy has been dulled lately. It is sporadic, not reliable, but SK's is not. Not only is she chosen, not only does God demonstrates His glory through her, but she is a teacher. She teaches me that joy isn't found in circumstances or external pleasures & abilities. Joy is internal & available to all through Jesus Christ. Thank you Sophie Kate. I love you! I am kind of fond of your whole family. Lol

Amye Jo said...

Thanks for that word friend. I know all those things to be true of her, sometimes I still need to hear them again.

Kristi Manning said...

Still keeping your family in my prayers. I don't visit the page as often as I used to but Sophie is never far from my thoughts. We love you guys!