Being Their Voice

I walked into a gathering of people last night absolutely exhausted. I had the usual “I am fine” smile on my face, with no intention of unloading the hurt I was carrying. Suddenly I was disarmed. “Sharon, how has your week been…REALLY?” I muttered something less than eloquent, when My daughter hurts herself a lot, and I don’t know what to do” came out of my mouth. I couldn’t take it back, and I immediately felt the panic that so often happens when we veer from fake surface-level social conversations. Then I heard the words I didn’t expect to hear. “Oh yeah, we’ve been there, and are there, too.”

Special needs, or any kind of “different” needs, is not something people tend to talk about. There is so much shame and stigma attached to admitting your child is anything “less” than normal by societal standards. Yet, if we cannot create our own safe place to talk about these things, it often feels like we are navigating a maze blindfolded. Loneliness is a magnifying glass of our exhaustion.

This is a quick and real glimpse into life with special needs, and the top 3 things we have learned along the way.

All children have a voice, even those that do not speak.

This seems obvious, but it’s not. We all have so much to learn when it comes to being around anyone different from us. People talk about my daughters like they aren’t even there. I will skip listing some of the things said directly in front of them, I refuse to give any more life to those daggers. Instead, I will extend grace. We are all guilty of equating someone’s silence for something it’s not.

My children cannot speak yet, but that does not mean they cannot communicate or understand.

Lani and Libby both take the world in, know how they feel about it, and show us in their own ways. Richard and I have learned to tune out “what all the other kids are doing” and just take in who they both are right now. We get on their eye level, wait for them to show us what they want to communicate about, and then talk to them as though they understand…because they do.

APPLICATION: People are PEOPLE, before they are a diagnoses.
Try to avoid filling the silence because you are uncomfortable. Wait for someone to show you what is on their heart, and be that safe place that doesn’t talk to them like they have nothing to offer.

Advocating is not the same as controlling

I have had to be a voice for my daughters quite often. I became a unstoppable force when Libby was put in a unnecessarily loud portion of the NICU, next to a phone and loud mail drop station. That sensory overload has affected her, and our entire family, every day since. I was the nagging phone calls when I was told to just “wait and see” by people who don’t understand the importance of early intervention. Most recently, I was the voice on the 911 call begging for help.

Where my daughters cannot yet speak, I will speak for them. Where they cannot yet fight, I will fight.

But, one thing I will never do. I will never take their voice from them.

Children do not exist to be extensions of ourselves or to make us happy. They exist to bring God glory by living their own lives in their own way.

APPLICATION: The first step of advocating for someone is truly knowing them. Take yourself out of it entirely, and act from a place that is wholly accountable to the question: “is this what THEY want or need?”

Raise Warriors, not Victims

Every single hospital stay, surgery, the countless hours of therapy, and three family vacations we have had to cancel, all have a purpose. We want our daughters to grow up grateful, not feeling sorry for themselves.

Have our lives been HARD? Yes.
Did God make any mistakes? No.

Ashleigh Jameson Photography

People with special needs do not need your pity, sideways glances, or for you to ignore them. All that shows is your disability of the heart.

Our daughters are absolute warriors. They have fought more battles in their (almost) two years than some people face in a lifetime. Instead of victim-hood, we proclaim these truths over them:

1. The higher the calling, the higher the cost. God has mighty plans for their lives.
2. For every thing that the world says they “lack,” God has given them a unique strength. For example, Lani and Libby may have small vocabularies, but they have HUGE hearts. They demonstrate more unconditional empathy than I typically see in adults.

APPLICATION: Someone wise once told me that “We all have disabilities, some of ours are just more obvious.” Special needs are not a death sentence, or even a list of things a person cannot become. And most importantly,

God has always been in the business of using “the least of these.”

“And the King will answer them, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ “
Matthew 24:50

I am their VOICE, they are my HEART