The first thing that comes to mind when I hear 1% is the world’s richest people laughing on yachts and sipping champagne. Then, after a few seconds, a dark gray storm cloud chews and swallows that fantasy right up.

It’s replaced by the reality of what 1% means to me. 1% to me is a harsh reminder that Max can’t talk. Max’s speech language pathologist scored him at 1st percentile of speech for children his age.

I suppose “Max can’t talk” might be harsh because he has made progress. His special interest is animals. He can do lots of animal names but it’s truly just the beginning sound of the name or a distorted version, I can make out 50% of the time.

There is nothing meaningful or helpful when it comes to his speech. Let me explain what that looks like.

It looks like your child crying in the middle of the night and trying to make their mouth move to tell you what’s wrong but you’re left playing the guessing game. It looks like you having to hold up every snack and food in the house for them to swat away until they grab the one they’re willing to eat. It looks like you holding them up to the tv so they can point to you what they want to watch. It look like something is hurting them and they want you to comfort them but you can’t figure out what’s wrong. It looks like them dragging you around by your hand to get you to help with something or putting your hand on something to open it. It looks like people talking to them in the grocery store and they just stare. It looks like other kids at the playground asking why he isn’t responding. I could go on and on all day but you get the point. It looks like he’s helpless and I am helpless.

I have three annoying feelings that fight to take center stage. Fear, anger, and jealousy, in that order.

I am so scared that he won’t ever talk. I am scared that he won’t be able to communicate to me if something bad happens to him. I am scared that he won’t have someone advocating for him when his parents die. I am scared he will feel lonely.

I am angry that he can’t talk. I am angry that him not talking makes everything 100 times harder. I am angry that I can’t understand him when tries to talk. I am angry he won’t use an AAC. I am angry at god that he was dealt this hand.

I’m jealous of your kids. I’m jealous of all the videos people post of their children’s first words. I’m jealous of the people saying “oh, they were late to talk but now they won’t shut up!”. I’m jealous of parents being able to understand the snack their child wants. I am jealous that my life looks so much different than I thought it would would.

I have a nightmare that happens like clock work every month. Max is trying to communicate to me something and I just lose my cool and scream at him over and over again to “JUST TALK”. I realize that nightmares can and have been much worse than that. But, every time I wake up relief washes over me that I didn’t say that to my child. “JUST TALK” runs through my head a few times week, but it makes my stomach queasy just thinking about it.

My life would be in a completely different, if Max could talk. Somedays, I lose sight of all the progress he has made and find myself shaking my fists at God.

The days that I choose to live in the present, practice gratefulness, recognize his effort, and focus on his goofiness, are days that it is well with my soul.

In the long run, he will talk and if he doesn’t, we will know peace.