Monday, February 18, 2013
I asked her every question I could think to ask. I showed her objects that maybe she might like to eat. I cycled through her vocabulary of signs hoping she would mimic one of them back to me. I begged with her to tell me what she wanted; why she was whining; what I could do to help her.
Her only response was to whine some more. A never-ending whine that carried with it frustration, sadness, and so many unspoken thoughts that she couldn't release past her lips because it was just too difficult to make her mouth obey her mind.
Maybe if this was the first and only occurrence of this infamous whine, my patience would have held steady, comforting her like the mother I knew I should be.
But this wasn't the first. Nor would it be the last. The last several weeks her comprehension has jumped far ahead of her verbal and signing skills, and she is frustrated. So she whines. All the time. After the first week of straight whining, I was fine. After the second week of constant WHINE I was a little less fine. Third and fourth week found me on the steady decline, and last Friday I realized that I was completely out of patience. Gone. I scraped around in the barrel of extra patience that I usually keep on hand, but it was completely empty.
Feeling like the most terrible mother in the world, I thought about how unfair this is. How unfair that I have spend hundreds of hours with her in speech therapy and yet her ability to tell me why she is upset still isn't there. How unfair that I have married my soul to Signing Time but in her time of need her small hands rest still at her side. How unfair that after three years of dedicated, diligent work I have a three year old with barely the communication skills of a one year old.
It is frustrating. It is draining. It is unfair.
Carter is already communicating so much better than she is, and this breaks my heart in a new way. Will she ever grow up enough to tell us what she wants? Will my bond with Carter grow stronger than my bond with her because he's able to share with me what's going on while her only solution is this madness-inducing whine?
On Friday I had to walk away. Just leave and separate myself from it all for a bit. Thankfully Aaron was home, so I was able to turn a "run these bills to the post office" errand into an hour long retreat in my car where no whine was to be heard for a while. But still over the hum over the engine, the bouncy beat of the music, and the jumbled thoughts in my head...I could still hear the whine.
My mind had been branded with the sound.
I tried to find peace within myself over this. I tried to turn it into a sparkly end-of-the story moment that would prove to me that all of this work was for something even though speech progress seems to be at a death crawl. But I couldn't find peace. Because there's no guarantee that Addison will ever be able to share her thoughts with us. There's no guarantee that she won't always be practically nonverbal. There's no guarantee that she won't be a ten year old on the floor whining just like she did that morning. I felt myself pushed over an invisible edge that I didn't notice was there until I found myself falling.
And then I cried. I cried for what I felt I deserved based on the work I had put in. I cried for the frustration that was probably just beginning. I cried because this was hard.
And somewhere in those tears a memory came to me. A connection that I hadn't made until that moment.
Along with the new whining has come a new desire to cuddle.
Addison has never been a cuddler, but lately she can't seem to get enough of it. And in that moment of sobbing in my car in the grocery store parking lot, flashes of these these cuddle sessions came back to me. Addison would put her head right up next to mine, ear to ear, and I would wrap an arm around her to pull her close. And just as we would start to meld together, she would turn her face towards me and flash the most brilliant smile that lights up a dark sky and colors a black and white movie. She would then settle back into the position of ear to ear, digging her head in as close to mine as possible- almost as if she's transferring everything bottled up inside of her from her head to mine in hopes that I can read her, understand her, help her, love her even when she can't tell it to me herself.
As I remembered this, it occurred to me that it's not that this is unfair for me as her mother. It's that it's unfair for her.
It's unfair that she has worked so hard in Speech Therapy for hundreds of hours and yet she still can't tell me what she wants. It's unfair that she has dedicated so many hours to Signing Time and yet in her moment of need she can't put together the signs to say the thoughts buzzing around in her head. It's unfair that after three years of working hard to get healthy, growing, and learning she is still so far behind other children who have done these same things with a lot less effort.
Somehow with that thought returned just enough patience to keep going.
Her communication struggles aren't her fault. They don't mean that her life is worth less than a child who easily talks. They don't take away from her sparkling personality. They just are because of the low muscle tone in and around her mouth, a small mouth, and a regular-sized tongue. This will most likely always be a struggle for her.
It would be nice if parenting returned an equal reward for the exact amount of effort I put into it. But it doesn't. At times this seems more unfair than others. But at the end of the day, it doesn't matter how unfair my story looks as a mother. It only matters how I can help my daughter past the seemingly unfair hand that she's been dealt. Because she's working just as hard as I am.
She just can't tell me about it.
Like peanut butter on the fingers of a curious toddler, this post is begging to be shared.
Posted by Deanna at 7:16 AM