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October 15, 2010 / paperkids


One quiet night Emma and I sat on the couch.  I had just put Hayden down and read Where The Wild Things are to him.  He calls it “Max”.  I asked Emma if she wanted me to read to her.  Jared had recently finished reading the book Charlie and the Chocolate Factory to her and I was curious to see what book she’d want us to read next.

Emma:  Read the Bible

This didn’t surprise me.  Sometimes, out of the blue, she’ll ask me to read it.  So I read a little out of Matthew.  At some point Emma reached out to the letter board.

Emma:  Have you tried to understand your faith?

I sort of stumbled on my words.  What could I say about my faith?  I wasn’t really sure what to say.  Have I tried to understand my faith?  It was an interesting question.

Me:  “Yes….  I think I have.  I’ve thought about it over the years.  I guess I just always believed.  I’m not sure if I ever didn’t.”

I knew that there had been times, though, where I had lost faith.  I guess I’ve just never thought much about those times.

Me:  “Do you still have a strong faith?”

Emma:  yes

And then after a few moments…

Emma:  and I always will

I thought quite a bit about Emma’s question. I’ve always been a sucker for spiritual and philosophical thought.  I’m not really sure, though, whether I ever really contemplated my own faith.  Maybe that sounds irresponsible,  even ignorant to some, but it always just felt easier and more natural to believe.   If faith really is the substance of all things hoped for like it says in Hebrews, then I’ve definitely used that over the years!

Perhaps it’s okay not to question it.  Like many parents of children who have special needs, there have been so many stresses that bore down on me over the years.  Some days where it was hard to get out of bed.  Maybe those heavy days didn’t show themselves to everyone, but my family felt the weight for sure.  I have many friends who can relate to those feelings of helplessness, sadness, and devastation…..and so much exhaustion.

I remember a few times being totally overwhelmed and my mom would say, “Just give it up to God” and it would really anger me.  I would say “Yeah, right.  If I don’t do this no one will, mom!”  And I really meant it!  Sure, I’d pray, but at that end of the day, guess who’s got to pull it out – ME!  But a few times, when things got too much to bear and my head was spinning and drowning, I would plead for God to take over.  I would give Emma over to Him, let go of her in a sense.  I think about Emma and how she’s longed to be a part of this world.  No one heard her voice, but One.  It’s only natural that  those two are inseparable.  Emma reminds me so often of my faith, that it’s hard NOT to write about it!  It’s hard not to thank God every second of every day!

I couldn’t stop thinking about Emma’s question to me.  Yesterday, I decided to ask Emma if she tried to understand her faith.

Emma:  yes

Me:  “Where does your faith come from?”

Emma: It comes from hope, love and belonging…..being near you and God

I thought of the few times Emma had expressed her desire to belong.  But I knew that in one sense, she did feel that belonging.  She belonged to God. And I know that she felt loved, special and very much heard in a world that didn’t always love her, make her feel special or hear her.

It was bedtime for Emma and I held up her two ratty nightgowns so that she could choose.

Me:  “You know, Emma, I am so sorry that I haven’t bought you any new clothes lately and that we are always so broke.  I promise that I will buy you some new pjs soon!”  The guilt just never ends.  I layed down next to her and just happened to have the keyboard with me.  She reached out.

Emma:  prepare for yourself treasures in heaven

Me:  “You are too much, Emma!”

I couldn’t wipe the smile off my face.  Her comment was in reference to what we’d just read in Matthew about not worrying about money – what you’ll wear or eat and also about not storing up treasures on earth.  It seemed very fitting indeed and so very Emma.  I thought too about her Heaven poem again:  I am your reason for everything so I am your heaven.  I believe that Emma has found her Treasure.  And I am blessed beyond words that  she shares it with me.



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  1. Lynn States / Oct 15 2010 8:43 pm

    I have seen the depths of despair of the loss of a child. And now, I see the hope and assurance of God’s grace in the life of my granddaughter. Yes, Emma; our treasures are far more than what we touch and see and speak in this lifetime. I am so thankful for your life.

  2. Molly / Oct 15 2010 10:14 pm

    Awesome writing!

    “prepare for yourself treasures in heaven” I just quoted that yesterday to Granny.

    She loves reading your letters, (thats what i call them.) I print it and take it over and say – “Another letter from Sabra and Emma!!!” : ) Your pictures are great too btw.! Love, Mol

  3. tonya / Oct 15 2010 11:47 pm

    Thank you for taking us on this journey with you….

  4. Sonia / Oct 16 2010 12:57 am

    “…to give them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness; that they may be called trees of righteousness. The planting of the Lord, that He may be glorified.”

    Talk about having a blessed hope!

    Emma, your peace in God is refreshing because it is untainted by life. You are an example to us all!

  5. Grandma / Oct 17 2010 3:48 am

    We get so bogged down in “two-legged stuff”, (material things) don’t we, and lose sight of the spirit of life.
    Emma said above that her faith comes from “hope, love and belonging…..being near YOU and God.”
    Your presence has helped to give her this secure feeling that she needs, the inspiration to point to letters and spell out what she is thinking.
    Her voice is like a silent song from another realm, the place in which we all want to rest.
    The other day she said to her dad, “rest in God.” That is a comforting way to view faith: we rest in God, turn it over, let go and let God, even when we are afraid, or helpless, or in despair.
    I am touched by what flows between you, and outward, to us.

  6. Chuck / Oct 18 2010 2:46 pm

    I stumbled upon your blog. My son communicates nearly identically as Emma. We have in our arsenal a Vmax, iPad, a keyboard fashioned with a connect-4 board, computers, alphasmart, iphone and dry erase boards. Basically, any medium we can use to allow Eion to be able to express what lies beneath and within his mind and soul.

    I have shared your blog with my family and friends because your writing is so similar to what Eion, my wife and I feel (and have never written out ourselves) I wanted to give them some insight into our lives.

    Thank you for sharing. Please continue.

    • paperkids / Oct 18 2010 9:16 pm

      Wow! It is so wonderful to hear that your son and Emma communicate so similarly. It makes me feel even more sure that there are many children out there who are able to find their voice. Thanks so much for sharing that!

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