What I wish I had said to the man in the sandwich shoppe

So here's the truth: I blog because I'm incredibly shy and would rather take a bullet than interrupt a stranger's lunch. I'm a quiet person. I don't talk on the phone much. I'm not a conversation carrier. I'm good on paper. I write.

With this in mind...

A few weeks ago, I was over on the other side of town (a phrase that means I had made the 15 minute drive to literally the other side of town), where there is a sandwich shoppe that I like. It happened to be nearing lunch, so I decided to grab a chicken salad sandwich and dine in alone. I deeply treasure those rare times when I get to enjoy a meal alone. A. I can eat cheap. Or not. When you aren't paying for several people, you can get just what you want. B. I can be quietly occupied on my phone, and enjoy my meal at my own pace. C. If you sit there long enough, sipping on a sweet tea, you are bound to observe some interesting people and overhear some interesting conversations.

And so it was on my particular day. 

Two gentlemen sat near me. As they sat down, waiting for their lunches to be delivered, taking long slurps of tea, one says to the other "I had no idea how terrible our medical insurance was until Anna was diagnosed with Autism." 

Yes, my mannerly mother taught me that nosily  listening in on other people's conversations is the epitome of impolite but what can I say--his topic grabbed me like a magnet and while I was looking at the screen of my phone, I was 100% faking it, immediately hoping to get the rest of his story. 

He lamented to his friend that since his daughter had been diagnosed with Autism, his insurance carrier had decided not to cover much of the needed testing and therapy and he wasn't sure why they (he and the wife) should continue to pay for coverage if what their child needed wasn't going to be covered. 

Through the relating of his story it became apparent that his daughter was very young (4) and his wife was somewhat devastated by the diagnosis. He shared with his friend that it seemed that everything in their lives had become laser-focused on their daughter's needs and both he and his wife were overwhelmed and exhausted. And it had only been a few months. 

Now you are starting to see why he had my listening ears, right?

It was pretty clear that his friend had little to say but he was paying attention. For listening attentively, I give him props. I mean what can you really say. It's a hard road. 

I know it's a hard hard road because I've walked it. For 20 years. Well, technically about 8 years because Julian was not accurately diagnosed until he was 12. The path was incredibly difficult from age 3, when we came to realize that a seizure disorder was a part of our lives and that other things weren't right. A couple of diagnostic missteps led us down other roads but finally, when he was 12, a trusted psychiatrist looked at me and said "Julian has Autism Spectrum Disorder, specifically Pervasive Development Delay."

A parent doesn't forget something of this magnitude. And yes, it's certainly a life-changer. 

So on this fall day in East Texas, as I guiltily eavesdropped on this conversation, a wishful but admittedly very small part of me wanted to speak to him, even though he falls into the "total stranger" category. It was surreal. I could have hugged him. 'Cause ya know, that wouldn't be awkward or anything.

I wish I could tell you that I spoke up and we had this extraordinary conversation about parenting an Autistic child, the evils on insurance denials, the little hurdles she will eventually conquer and the obsessions that will take over. Unfortunately, my shy side won the fight and I didn't say a word. Eventually, the guys left and I did the only thing I could do--I started writing down what I could have said. 

These are just a few of my thoughts:

Don't even waste a moment thinking you are equipped to raise this child alone. You are not. Your wife is not. You will both need a big big village--don't waste time fighting that. There's a meme going around that declares "you are enough". Trust me. It's a lie. You are not enough. If you have to move to be near people who want to be in your village, do so. You can't do this alone.

And that's ok.

This is the struggle of your life. You thought you were a man before...but this...this will grow you up and make you into a serious person.  Welcome to a whole new world of adulting that you will never walk back from.

And that's ok.

You are going to mourn the loss of all the plans and presumptives that arrived on the scene when your daughter was born--those neuro-typical child achievements that you just assumed your child would enjoy, even without giving voice to them. Those are going to look very different. 

And that's ok.

What once was, is no more. You will slowly and repeatedly mourn these losses for your sweet girl, because she doesn't know to. Mourning does not pass easily so don't expect it to. It will take its grievous toll on your body and your relationships. Mourning will take up a space in your life, likely for the rest of your life.

And that's ok.

Your marriage will become more precious to you than you ever previously imagined because you share this very special child with your wife. Surely, yes, that's true for every married set of parents, but it's even more true for you because you will fight together for this child and you will fight about the care of this child more than any others. You will need each other more as you walk through this every day. 

And that's ok.

Your marriage will come under fire more often because parenting your daughter takes its toll on both of you, together and separately. Hopefully, you are already committed to your wife so deeply that this new role will not rip at the fabric of your relationship until there's nothing left. Fight for it. You can prevent this diagnosis from shredding your marriage and putting the two of you smack into the seventy percent of marriages that don't survive the title of "special needs parents". But you will have to be intentional and protective like you have never been before. And there will be times when you might need help.

And that's ok.

You will learn a new language. Therapists, doctors and counselors like to use initials and big words. Learn to write things down. It's now up to you to navigate the often choppy waters of finding what works for your girl. And just when you think you have it all worked out, something will change and you will realize that you don't, in fact, have it all worked out. So you start over.

And that's ok.

You will develop a sixth sense about people and their abilities to accept and embrace your girl as she is. Don't fight this. Trust your gut. There will be people who cross her path that you know immediately are factors of good in her life. They encourage her and bring out the best in her. Cherish those people. Occasionally, there will be a person who sets off your alarm bells and you suddenly know that they have to be removed from your daughter's world. Don't question it. There are people walking this planet who take selfish advantage of the disabilities of others. You will become well-trained as your daughter's bubble of protection against those who would treat her with contempt and as less than. 

And that's ok. 

If you are a believer in Jesus Christ, you will soon come to long deeply for heaven, where bodies are made new, there are no more tears and struggles are resolved. Hold tight to this truth. Some days this will be your only hope. 

And that's ok.  

Well-meaning people will say stupid things to you. There's no getting around it. They just do. Understand now that, in those moments, you may need to remember that they are woefully under-informed and their insensitive commentary says more about them than it does about you. 

And that's ok.

The other people in your daughter's life--her grandparents, aunts and uncles, cousins, siblings, friends and acquaintances will look to you to define what acceptance of your daughter looks like. Take this role very seriously. Be bold in your example. Learn to speak about your daughter's limits and needs succinctly and without using those extraordinarily big words that doctors and therapists bring into your vocabulary. Don't be afraid to show them what's what. Occasionally, they may call you bossy and over-reaching. 

And that's ok.

Cling to the joy your daughter brings into your life, no matter what it looks like, like a needy girlfriend. Cling. Normal is gone but the joy doesn't have to be. Grab onto joy when you can and document it in some tangible way so you can cling to it in times when it seems it has completely left the building. Your joy is now inextricably linked to your daughter and that will never change.

And that ok.

Laugh. This is probably the most important and universal directive I can give you. Don't forget to laugh. When she does something hilariously inappropriate, (and she will), laugh. When something she needs to accomplish is super hard, (there will be lots of this), laugh at it. Joke with her. Sing silly songs. When you want to cry, (this takes practice), laugh. When things feel way too serious,  (and they usually will), laugh. Because laughing will carry you through together. 

And that's way more than ok.

It's a different road you are now on, my friend. 
You didn't sign up for this, but you are going to be ok.  You aren't yet well-equipped to handle it, but you'll get there.

And it will be ok. 


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