There is either fear or hope. Pick one

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Life would be so much less complicated if we lived on breaks.  haha.  Yes, that is my opener and I realize it’s not only a statement captain obvious would make, but it’s completely devoid of reality.

Seriously though, breaks are awesome.  Family comments how far Ashlynn has come.  We are all stress free (well at least from school and work stress).  We can spend time as a family doing things together we wouldn’t normally have time to do.  We’re not in “go” mode all week trying to get to school, to therapy, get the homework done, and all the other million appointments we have.

I don’t have a daily reminder of how hard things are for Ashlynn, like tonight, doing homework with her again.  Don’t get me wrong, she’s improving…so, so SO much.  It’s just, when we’re doing homework,  I realize we’re improving, but nowhere near the pace the class is going.  I feel like Ashlynn is more keenly aware of it too now, or maybe she always has been and now she can just verbalize it.  Tonight we did her reading, her math, and then practiced her spelling test.  I think she said at LEAST 8 times something like, “it’s just my brain!  ugh.”

We are not punitive.  We are patient.  We tell her EACH time, something to the effect of, “Ashlynn, it’s okay sweetie.” and I might add, “you have apraxia and also have a hard time getting the words out, it’s okay.  The more you practice the better you’ll get,” but then she’ll stumble on a word again, or say the wrong number when we are counting by tens and hit her head and again announce “Ohhh my brain!’

Hearing it once is hard.  Hearing her say it twice is hard.  Hearing her say it repeatedly despite our words of reassurance and patience is excruciating.

Damnit.  Damnit.  I had to walk away and have my husband help her.  This isn’t fair!!!

I got on my phone and checked fb.  In the apraxia group a woman posted a picture of her son crying while looking at a reading passage.  My heart broke all over again.  Stupid apraxia.  Stupid apraxia.  Ashlynn isn’t crying….yet.  Will she be? Will she get to that level of frustration?

I was feeling down again.  Two weeks back at school and I feel sad again.  All that joy and happiness of the vacation gone.

Then I read this.  A blog post by an adult who had grown up having apraxia.  She outlines the day she went back to her old reports and progress reports and how she discovered that in early elementary school she spent 80% of her time in special education. She says the reports all started with how teachers would comment she was a hard worker and tried hard. I immediately thought of Ashlynn.  Every report says that about her.

She talks about how she just wanted to feel normal.  She says you could see her “subtle progress” through the years as she started spending more and more time in general education.  By highschool she still had report cards that said she was a hard worker and tried hard, but now she had a GPA of 4.5. She muses that she doesn’t even know when that transition from “special education” to “straight-A honors geek” even happened.

She concluded that apraxia fueled her strong work ethic, and though she is sad she never achieved “normalcy” she decides maybe it was all for the best.

I needed to read that right now.    I needed to read that because I needed hope.

You know what drives parents of special needs kids?  You may think it is the love for them, and yes of course that is true.  However, at the core, even on the darkest days, what drives us to face a new day with strength while we hold their hand is….hope.

Hope is the belief that despite any challenges we may face and how many times life will knock us down, we will wake up tomorrow still standing, still growing, and still achieving.  Sometimes hope may be a flicker, and other times a fire, but as long as it is still there, we will continue to rise

again

and again

and again.

Thank you Alyson for sharing your story AND re-igniting HOPE.

 

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4 Comments

  1. Polly says:

    You are such an amazing example to me.

    1. Laura Smith says:

      As you are to me Polly 🙂

  2. Courtney says:

    I’m crying as this is so true. It feels completely unfair too often that almost nothing is simple for my little girl. Everything takes so much extra work.

    1. Laura Smith says:

      Ugh, it’s just not fair. I know she’s healthy and I’m thankful for that, but it’s still hard that everything is so much extra work.

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