Raw isn’t pretty, but it’s real.

View More: http://burningmelody.pass.us/scaparottifamily2015My hope and prayer was to write and journal here more often.  Yes, life has been busy, we’ve had a lot going on, but in all honesty the thought of writing scares me a little bit these days.  Hard to believe since I’m very much a processor.  I don’t do well with thoughts and feelings just “sitting there”, taking up space in my heart and mind, I need to process, sort things through, let go and move on.  Lately it’s been different.  Maybe it’s fear of the unknown, or not knowing what to do with the processed knowns?  Maybe it’s fear of not having anything good and uplifting to say?  Maybe it’s plain exhaustion?  Maybe we can’t and are not supposed to process every single thought and/or feeling?  Maybe only God, in His due time, can untangle the emotional mess of an agonized soul?  Whatever the reason, I’ve decided to take the risk of serving up a jumbled, raw mess, instead of a beautifully processed meal.

Life is hard, but God is near.  In a few days we will be heading down to Disney World, FL.  It’s all part of Joeys “Big Wish.” Just the thought of it stirs up a million feelings in my heart – I’ve always loved and admired organizations like A Special Wish, however, I never thought I would, nor did I want to experience my own child’s “Big Wish.”  Although planning this kind of trip is sometimes tainted by pain and fear, words can’t express how grateful Sam and I are and how blessed we feel to be able to do something like this.  It’s a “once in a lifetime” thing that only a few people get to experience, something we are extremely thankful for.  Just as we are thankful for all the love and support we receive on a daily basis from family, friends, even strangers.  Over the last few months we’ve watched in awe how people have selflessly put their own needs and dreams aside just to help and serve us in the most amazing of ways.  Friends and strangers alike who know just what we need before we even say a word.  It’s love undeniable, unexplainable and extremely humbling at the same time.  It still amazes me how life can be so incredibly hard and good at the same time.  Bitter, yet so sweet.  I don’t always feel it, but I know that God works for our good, and though I do not understand this trial, I trust him and the bigger plan.

Josiah means healed by Jehovah or Jehovah will support.  Little did we know that we would experience both in a very tangible way when we named our son after one of the most inspiring kings of the bible.  There’s no cure or treatment for GM-1, only God can heal such a horrendous disease.  And whether healing will come this side of heaven or not we find comfort in the meaning of Josiah’s name and feel the nearness, love and support of a father who knows and meets all of our needs.

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2 thoughts on “Raw isn’t pretty, but it’s real.

  1. Thank you for being so transparent! My heart breaks for you and I pray for you and your family daily. I can’t tell you how grateful I am to have had the chance to love on Joey in BSF last year! Praying God will strengthen you and help you, that he will uphold you with his righteous right hand (from Is 41:10).

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