Month: April 2018

When I scoop her up and hug her, she pats my back

The way she expresses her pure joy – her wide smile and wiggling body and wildly flapping arms when I come home from work

When we’re sitting in the chair in her room reading, she places her hand on mine.

When her brother is overly energetic and annoying me, she laughs uncontrollably and my annoyance dissolves

She makes meaningful eye contact

She eats almost anything

She likes my singing

When she does the sign for “more” you can judge the level of her desire by how frantically she is signing

When she scoots on the beach, she leaves an adorable trail in the sand

And when I subject her to atrocities such as getting stuck by a needle to have blood drawn for one of the many tests, she forgives me

 

Sticks and stones. They’re only words. Toughen up. Have thicker skin. Don’t be so sensitive. We’ve gotten too politically correct. These are all the things that are said to excuse or make light of hurtful words. Or to try and ease the pain inflicted. I call bullshit.

They’re only words? Only? Words are everything! Words are the building blocks of communication, and communication is how relationships function, how knowledge is shared, how ideas come to life, how problems get solved. And over time, the words we speak, the vocabulary we form, the way we choose to communicate becomes a window to our soul. Over time because one moment or one conversation cannot us. The general way we speak about ourselves and the people and world around us over time paints a picture of who we are, at the core.

Our words in some contexts are promises. Our ability to keep our promises is a demonstration of trust, another reflection of who we are. So in a way, we are our words. They can be loving, beautiful, funny, hurtful, painful, careless, the list goes on.

There are a couple of new words that have become part of our everyday vocabulary. Jojo turned 3 in March which means she started receiving services from the public-school district, and her services with the regional center have ended. Now she goes to school every day. There are speech, occupational, and physical therapists that work right in the classroom every day. They are wonderful, and it is a great environment for Jojo, something she has been ready for. It is special ed. She has an IEP. That is an Individualized Education Plan. Every kid in special ed has one. These are words we now use all the time.

These words are hard for me to get used to. This is not where I thought we’d be when we first learned of Jojo’s low tone and development delays. I still hang on very tightly to the belief that she will catch up and lead a normal life. And each new word I must learn and add to my vocabulary takes me a little farther from that belief. I am grateful for these words, for the support and treatment they symbolize for Jojo. And I am scared of them, of how long they will remain in our everyday vocabulary.

Imagine trying to live your life without the ability to use words. Or perhaps equally difficult, using words that nobody seems to understand. This is what Jojo is up against. She is such a trooper. She has 14 signs and at least 26 words or word approximations. At least 26 we can figure out. When she says “up” and “hot” it is very clear. When she says “all done”, it sounds like “ah da”. Apple is “app”. Bubbles is “buh”. Jojo’s words are imperfect, muddled. And they are beautiful because they’ve opened a window into her soul and have showed me that at her core, she is a fierce warrior.