Monday, October 10, 2016

On This Day

I love the On This Day feature on Facebook.  Memories of funny stories and long-forgotten conversations come flooding back when I click on it.  Most of the time, I'm reminded of something neat or exciting like one of the kids' milestones or a fun family adventure.  Today's memory was not so fun.  Frustration and sadness are better descriptors of what happened 4 years ago today...


Unbelievable.  Truly.  I lock the office door when I'm done in here because Ronan isn't so gentle with the computer (and has locked us out of it before).  I come in to find about 10 youtube screens open.  Most are Veggie Tales (yay, for typing that in correctly, Buddy!), but then this one song open too. 


Check out these lyrics:

I think I used to have a voice
Now I never make a sound

I'm still inside here
A little bit comes bleeding through


That day and how Ronan bellowed really rattled me.  I shared more the day's events in a post later that week.  Writing about the experience helped me process the sadness, the frustration, and both the physical and emotional pain that accompanied Ronan's struggles: 

Ronan was slumped in a heap sobbing while signing “head”, “head”, “hurt”, “hurt”.  That sob evoked such sadness, sadness from him and sadness in me.  I inched closer and stroked his head.  I cradled his face and repeated, “I’m so sorry. I am so, so sorry.”  It was then that the lyrics from that song, that lone Nine Inch Nails song played in my head.  Watching Ronan struggle, thanking him for being able to tell me his head hurt, standing ready to do whatever it was he needed me to do while wishing I could make the pain disappear, it was all I could do to not fall in a heap next to him and cry it out with him. 
Ronan relaxed just enough for me to lift him up into my arms to carry him to his bedroom.  Getting his pajamas on wasn’t easy because Ronan returned to fight mode.  He grabbed my hair, twisted it and cried out again.  The searing pain that went straight to my scalp didn’t slow my actions—in less that ten seconds I had put his diaper on, zipped his jammies and gotten Ronan snuggled under the covers with his favorite blankie.  He released his grip, tapped his head and then let out another huge sob. 
Those lyrics again.  Repeating in my head.   Right there in front of me.  This time it’s me who’s saying them:
I wish this could have been any other way.
With tears streaming down his cheeks, and mine about to flood his bedroom, Ronan lifted his head.  He gently took his hand, put it to his lips and then extended it to my lips. Without the ability to speak Ronan depends on his signs to tell us what he wants to say.  This gesture, that sweet, little hand crossing from his lips to mine is how Ronan says “I love you”.  Oh, how I love you too, Buddy.  I love you. I love you. I love you.  Once more he kissed his hand to my lips.  Once more I promised I would do whatever I have to do for him.  Once more until there’s no more pain, or worry, or need to, I will always fight for him. 
The following day, Ronan had a seizure.  The awful outbursts, the painful cries, the sadness and that frustration that followed him wherever he went, it all made sense.  I was relieved that there was a reason for the aggression, but I will never be at peace knowing that seizures grip my child, his health, and his potential.  
Big sister captures a moment of Ronan's life with autism. 
Four years later, things are a tad better.  Ronan still struggles with communication and he still has seizures, but one thing has remained constant - my will to fight for my child remains strong.  So, even though my day started out with me remembering a sad moment, today, once more and always, I promise to do whatever I have to for my child.  

Once more until there's...

no more pain

no more worry

and no more need to... 

I will always fight for my child.

xo, Cat


Excellent article (found on page 24) worth reading about seizures and autism

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