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January 6, 2015 / paperkids

Yearning to rest

Last night was the first full night of sleep so far in 2015.  The kids for many reasons – being out of school and off schedule, medication issues, OCDs, the weather changes, sickness, ect..- have taken turns waking up and once we’re up, even if it’s 2 am, we are pretty much up.  And even when the kids are sound asleep, I’ve acquired this kind of super-sonic hearing that I could swear makes it possible for me to even hear the neighbor’s tv or other strange phantom sounds.  On restless nights, I’ll fidget my legs and even though I might lay perfectly still, my mind is spinning like a hamster wheel.

“I can feel your squirrel beams!”  Jared will say, breaking the silence before slipping back into a dense, bed rattling snore.

On nights like these, I end up popping a melatonin and drowning out the squirrel beams and snoring in a cloud of repetitive prayers.

Squirrel beams.  That’s what Jared calls it, but some might call it by it’s more appropriate term: anxiety.

It would be understandable I guess.  This year has certainly been filled with highs and lows.  We’ve been blessed that this is the first time in … well, maybe forever, that we haven’t been worried about money, which is a reprieve considering there’s so many others things to stress about.  Jared has a great job with a great commute – just right up the stairs and to the left!  Hayden had a good year and his language is progressing. His interaction is better and his smile just brightens the whole room. He turned 9 this year and finally got the Scooter’s Jungle party of his dreams!IMG_6121

Emma turned 13 (WOW) and is now taller than me and we are sharing jeans, which is pretty useful I must admit.  Even so, we did hit some extreme lows with how hard Emma’s aggression became.  This is an extremely tough age for kids  anyway, but add autism into the mix with a flood of hormones surging through a dis-regulated body and we had hit a crisis point several times throughout the year.  For most of the year, we could not get control of her rages, trying different medications, that didn’t seem to have any effect.  I didn’t write about it much because… well, when your’e in it, your’e in it.  You just handle it and pray… a lot!  Watching the child you love more than anything spin into such aggression, attacking you, hitting herself in the head and biting and pinching herself with no ability to stop it in any way, is excruciating.  I know that there are many families who are dealing with these exact issues, and my only hope is that there will be better treatment plan options for adolescents and young adults in the future to really give them safe, appropriate treatment when crisis occurs. I will be elaborating more on this topic because it deserves a post of it’s own. Fortunately, we were blessed a little over a month ago to find a medication which stopped the rages!! I still can’t believe it!  I keep waiting for them, but they never come.  A true miracle!!!!  And she has almost completely stopped hitting and biting herself!  Answered prayer.  It had been so long and it had gotten so serious, that I didn’t know what we were going to do.  This has been life changing for us all.IMG_4964

Yet in the midst of all these crazy behaviors that seemed to overtake Emma’s life for the last several years, there she is. Just Emma. She isn’t a set of behaviors, she isn’t autism, she isn’t what you perceive with your eyes altogether when you see her mouthing the plastic camera she carries closely with her these days. When I look at Emma, I think about her faith and the words that she types so painstakingly.  In her darkest times, she is so at peace with God.  I reflect on a dream that she shared with me back in September that perhaps one day I’ll share in its entirety.  In this dream, Jesus spoke to her and said:

“Truly I say to you that I will take very great rest in restoring you.”

She’s okay.  She’s really okay, isn’t she?  When I think about my prayers for Emma, I think about how praying so fervently for her has ignited such a deeper intimacy with God than what I’ve experienced in so long and maybe ever.  I didn’t even really see it coming, but BAM.  He lit me up and renewed me again, creating something truly beautiful in my life through such tremendous pain and despair.  Surrendering all I had to him when I had nothing left to hold onto changed my life for the better and I wouldn’t change that for anything in this world.

Stepping into this new year, it does cause me to reflect on all these things and how each day is made new.  Our life is hard and I’ve often thought it just seems to get harder. The responsibility I feel for the past, present and future wellness on every level for my two children with autism threatens to overwhelm me on every side.  It’s a constant battle, testing everything I have inside and out.  But here HE is, saying “Come to me, all who are weary and burdened, and I will give you rest.”  The strength, the beauty and the grace of God completely overshadows all the dark times, infusing me and enabling me to love deeper and live more bold than I ever imagined I could.

I wanted to share Emma’s entry for the school’s Reflections Art program this past year.  She didn’t win and we couldn’t even sit through the gala or get a photo of her by her poem because her body just wouldn’t allow for it, but it is truly a blessing that she can participate with her peers. For those who may not know, just four years ago at the age of nine, Emma, who has been nonverbal since she was two years old,  typed words on a keyboard for the first time, my hand lightly supporting hers.  We got to really know our daughter for the first time and quickly discovered her beautiful spirit and the love she has for God and I’m still blown away by her heart and her depth. The theme for Reflections this year was “The world would be a better place if….”.  I know there is a lot in this world that could use improvement.  In fact, there seems to be no shortage of murder, warfare, pollution, sickness and devastating stories on the news to remind us daily that this world in which we live could definitely be a better place.  I had wondered what angle Emma would take with this theme and wasn’t’ surprised that she didn’t write about any of these and not even autism.  She just wrote from her heart.





Leave a Comment
  1. shegoestowater / Jan 7 2015 12:03 am

    So beautiful. I was hoping you’d be able to get back to this, and it was worth waiting for.
    I love you all very much!

  2. Laura Tacinelli / Jan 7 2015 11:32 pm

    I’m glad you finally found something that worked! What is it by the way? You should publish her poems! I think Amazon has a way to publish yourself – my sister in law wrote a children’s book and published it herself. It was really cool!

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