It wasn’t that long ago after Luke was diagnosed with autism that a pastor visited with me over the phone. We weren’t especially close – I suspect someone told him about what we were going through, and he showed great care in ministering to us. And I remember that during the phone call, he shared that he had a daughter with a disability, and he shared something along these lines:

“You will see God’s hand in everything, and you’ll see that He has you all in His care. But you will still grieve.”

I remember hearing that word. Grieve.

And it made me furious.

My baby is here. Right next to me. A marvelous beauty. Why would I ever grieve?

Back then, I thought grief was only for funerals.

But now? Now, I get it.

Sure, it’s really complex still. I do not mean to ever seem like I am saying I grieve my boy. He’s still my miracle, and I love him wholeheartedly.

But do I ever grieve what autism does to him – the havoc it wreaks on his brain, the way it makes what ought to be the simplest skill to acquire a herculean task. And I grieve how his struggles affect our family – a sister whose big brother not only barely talks, but hits and screams. A mom and dad exhausted from caregiving. A family of four together – but also, an island.

Today, I’m writing from the heart, and that means that when most of the time, I will point out the beauty I see in the midst of hardship, I’m not going to render in precious tones that autism is inspirational. It’s not The Good Doctor, or the basketball manager that made all those three-pointers that time. Because the realities aren’t as palatable for public consumption.

My son is a few months away from a ten year anniversary of his diagnosis of autism – but I still grieve.

I grieve how isolating autism is. Luke is 11 years old but functions at a much lower age. His communication is severely impaired. Because of that, we have no idea how much he really comprehends. In many ways he is undisputedly brilliant. He could read aloud Crime and Punishment, making an honest go at sounding out even the trickiest of names. He could very well have done that at age 3. I’m certain he knows the alphabetical order of the nearly 1,000 songs on my iPhone – many of which, he has added.

But I could also ask him ten times to do a two-step task before he’ll even attempt it. He cannot be left alone – in the past two weeks, I have found bottles of water, boxes of baking soda and carpet deodorizer just spilled onto the floor. Not out of naughtiness… just an odd…. curiosity? I don’t even know. Mystery surrounds him.

And do you remember when your baby – as in, your infant – cried and screamed, and you felt complete agony not knowing what was wrong, and not knowing how to help your child?

Well… imagine that baby is five feet tall. Because that’s what we go through.

Imagine that, and then imagine seeing behavior like this:

Or this…

Right now, Luke is miserable most of the time. We’ve seen his pediatrician, who has ruled out obvious illness, and we’ll see his psychiatrist soon, and I hope desperately she can help us determine how to tweak or change his medication to provide some relief.

But in the meantime – I grieve. I understand that pastor more and more every day.

I understand him as I see pictures on social media from the fifth grade field trip. We decided it would be too much for Luke, as it involved a 14-hour day and two multi-hour bus rides. In six months, those kids will be in sixth grade… and Luke will continue remain increasingly separated from them. And that’s what’s best for him, no doubt. But I still grieve. Will they forget him? I fear they already have.

If you’re the praying kind, please say a prayer for our boy and our family. We’ve been told tics go with autism the way freckles go with redheads, and I have to tell you – they are agonizing. (The tics, not the freckles or the redheads. *whew* There’s some of my humor.) He doesn’t mean to make these awful sounds and movements over and over again, he gets so impatient and upset with himself, and I can’t profess that his mom and dad are perfect about being patient with it. And that says nothing of his precious sister – who has the best heart of anyone I know, but still, she’s miserable seeing him this way. I’ll spare you all the details about how horrendous car rides are with siblings when one has uncontrollable Tourette’s. It’s no joy ride, folks.

I do believe that God has the capacity to help us through this, and to bring peace in the end. But we humans down here are at our wits’ ends.

Ultimately – I know that in this world we will have trouble, and I know now that grief isn’t just from losing the people we love. So I’ll close by saying this: other than losing people I love, the greatest grief I’ve felt is seeing my baby struggle so mightily. And if you have a child that faces struggles, you are not alone.

One final note: While this should go without saying, and while I’m sure you would only do this from a place of caring – please refrain from recommending potential remedies (essential oils, CBD, supplements, special diets, etc.). We feel very comfortable with our team of doctors and plan of care. Thanks in advance for your consideration.