Wednesday, July 10, 2013

Lemonade, Yogurt, and The Future

I usually am not a very patient person. Except with Addison. For some reason, Addison pulls out of me this patient side that I never even knew that I had. So next time I go off on a "she's made me a better person" rant, just assume this to be one of the many reasons.

But every once in a while something will happen with Addison as a direct result of her inability to communicate with me that will stretch this patience to a place of nonexistence.

Someone made a comment on the last post about how you can be completely OK with your child's diagnosis, but still have days where you are frustrated and even a little bit sad. And that is OK too. I completely agree.

It's so funny because later that afternoon, I had one of those moments.

We had just arrived home from the grocery store. Walking in the door from the grocery store with two toddlers at our house is a bit of a circus. You're juggling bags, you're convincing cute little stubborn faces that coming inside the house will make them MUCH happier than staying out on the porch to play, and you're trying to remember where you put those crackers that you "craving bought" because you're going to be sick if you don't eat them NOW.

And on this trip back in, I was feeling exceptionally dizzy. I just wanted to lie down. I had been extremely dizzy for days but braved a short trip to the store because we were running out of that super important item called...wait....what was it? Oh yes, food. We were out of all food.

I successfully got both kids in the house and headed into the kitchen to put away the cold items that no doubt were already baked, spoiled, and wilted from that short trip in from the store.

And of course there was no room in the fridge for the two gallons of milk I bought, so I pulled a gallon pitcher full of ice cold lemonade out of the fridge and set it on the counter next to the yogurts that I just bought.

I swear I turned my back for ten seconds and Addison had that pitcher of lemonade down on the floor. Spilled. All of it. Ice cold, perfectly made, STICKY lemonade was now covering every inch of kitchen floor. I was super dizzy and nauseous since I had yet to find those crackers, and I just lost it. This is something that we have worked on time and time and time again. NOT pulling everything off the counter. She knows better, and I was beyond frustrated.

"ADDISON!" Her eyes turned very big.

"NO NO NO NO!"

Of course right then the kitchen became a super irresistible place for both kids to play and splash...properly soaking each foot and hand in stickiness so that the trek out of the kitchen would make a nice trail around the entire house.

"GET OUT OF THE KITCHEN NOW." I admit my voice was probably raised higher than it should have been. But sometimes it seems like this is the only way they will take me seriously in situations like this.

The world was spinning around me. Must. clean. up. lemonade. I turned on Elmo in the living room to distract the sticky troops.

I was mopping up the worst of it when I saw Addison crawling back through it.

"NO!"

I placed her back in the Dining room. A second time, she came back in, crawling through the lemonade with determination.

"NO NO NO!" I did not scream, but I did yell. WHY WOULDN'T SHE JUST OBEY? So frustrating.

A third time. She was crawling through the lemonade.

"NO!" Seriously?

I finally finished getting up the worst of it, so I let her crawl through since she would not be dissuaded. I looked down a few minutes later and she was holding a Greek yogurt. One of the ones that had been stacked next to the lemonade on the counter.

But she wasn't just holding it. She had gnawed through the lid- in THREE places- and was licking up the yogurt through the holes.

She was hungry.

Realization dawned on me. I got her a spoon, her yogurt, and I set her up at the table. She polished off a yogurt and a half before she stopped to take a breath.

She was very hungry.

This seriously made me just want to cry. Why wouldn't she just TELL me that she was hungry? She can sign "yogurt." She can sign "eat." But she did neither. She tried to get it herself, made a giant mess, and didn't understand when I asked her to put neatness in front of her extremely empty belly. She was HUNGRY.

It's at times like this that her diagnosis makes me sad. When I look to her future, I'm not sure what it will look like, but my dream for her is that she will someday communicate with me her wants and dreams.

Who cares what I want for her life. What does SHE want for her life?
I want to help her. I want to be a friend to her. I want to be a mentor to her. But all of those things require something from her- communicating how I can best fill those roles in her life. I can have my visions about this until I'm blue in the face, but this is no longer about placing a caption bubble over a cute baby with a pithy saying straight from my mouth to her picture. She has her own pithy sayings to share. But she can't communicate them.

She has her own thoughts. Her own wants. Her own opinions. I want to know them.

I know that this is perhaps oversimplifying the question "What Mysteries Do You Want To See Unraveled For The Future Of Your Child With Down Syndrome." But I know that communication is a big issue for individuals with Down syndrome.

Addison is smart. Very smart. But she can't always convey that to me in words or even signs, and I'm not always sure why. A lot of her smartness is locked up inside of her. And this is one of the things that isn't guaranteed to change as she grows older as it might be with a more typical child.

I hope that therapy continues to advance. I hope that Addison will continue to work as hard as she is working. I hope that we can figure out how to get from a toddler unable to tell her mother JUST how hungry she is to an adult capable of communicating beyond basic needs- to dreams, hopes, and fears.

I still tear up every time I think about how hungry she must have been, how badly she wanted that yogurt, and how angry I got at her. A simple communication issue that could have been easily solved.

I know that for Addison to be a nonverbal adult is not completely out of the question. So I guess that is my hope that I'm putting out there for the future. For me to be able to see inside my daughter's heart because she chooses to let me.

But meanwhile? I learn to be patient. Even more. Because I love her dearly, and if being her mother requires the new skill of mind reading? I will work on it. Because she is totally worth the effort.

Like peanut butter on the fingers of a curious toddler, this post is begging to be shared.

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