Words bring us together, they bind us and break us, they heal, they wound, they give simple instruction.Words crystallize our thoughts, making them recoverable to our hearts.
The written word has been a source of freedom to my spirit. Studying and minoring in Creative Writing in college opened up a new canvas to my pen and paper. I revel in writing (and reading… which helps me write). Words are my lifeline to God, saving me from myself.
It’s not easy to use your words when you don’t speak or understand language. It’s challenging to express your needs, share your feelings, or eat what you actually want for lunch.
Of all the challenges Noah faces, none have brought me to my knees like our fight to communicate with him. Over the past 6-8 weeks, he has become more agitated, distressed, and angry about his inability to meaningfully connect with those around him. The way he looks into my eyes, throws his hands in the air and stomps his feet are some of the most beautiful and encouraging expressions… They mean he understands that there is more, that we aren’t connecting and that he is seeking understanding. From the outside, it looks like a tantrum, and in a sense, that’s absolutely what is going on. The inside story however is conveying to us that he is capable of communication, he is fighting to connect, and he has needs that are craving to be met. As a baby, Noah was absolutely content… to a fault. It wasn’t necessarily concerning to us because it was an admirable trait… patience… it’s a virtue, you know. As he has grown older he has slowly outgrown his compliant personality and become a determined, persistent, and vocal little boy. For this transformation, I am truly thankful.
I have spent a copious amount of hours researching different methods and devices for communication…PECS, PODD, Go Talk Now, Dynavox. It’s a daunting task, and has proven to be quite the undertaking… and we haven’t even started with a program yet.
In the next month, we are starting down a new path with Noah… An expensive, time-consuming, wonderfully optimistic path. No dollar amount, number of hours, prognosis, or amount of frustration will ever be able to outweigh the determination we have to give Noah his words.
When my eyes can’t stand another minute of reading, my head aches from the LCD screen and squinting, and I’d rather be watching Monsters University with Matt and Noey, I become frustrated at the reality that I am having to research ways to communicate with my child. I mean, “God, really?…. the motor challenges, cognitive delays, glasses wearing situation, tooth brushing fights, sleep disturbances, sensory processing and motor planning aren’t enough?” My heart is cradled, my eyes are softened, my hands are held by my Savior as He gently reminds me of His promises. Even if I am never given an answer as to why, I would do it all again. Thank you, Jesus, for giving me this burden to fight through. One day, you will restore what is broken, I trust that.
Keep up in your prayers as we begin a new approach, I know it will be a fight worth each and every battle.