The Full Time Job

At some point this spring, I remember a moment when my husband looked me dead in the eye and told me "you have a full time job right now, you know that?"

He wasn't referring to motherhood.

He was referring to advocacy.

To the hours upon hours of research and phone calls and office visits and emails and texts and thoughts and strategies and desperate prayers that go into trying to find answers for a special needs child.

And as my son sleeps upstairs right now, I have spent the entirety of his naptime, yet again, on the phone fighting with doctors. Cursing insurance companies and how little they give a rip about kids like mine. Trying not to lose hope that someone, anyone might be able to actually help us.

I am just trying to get him from one day to the next knowing that there is no hotline to call when your child is destroying his room. When he's been screaming for five hours straight. Again. When your husband can't even go to work because you have more than one child and your other kids need to be parented while the other child needs one-on-one parenting every waking hour. And the other kids need not just to be supervised but reassured of your love, that this will get better somehow. To be given quiet and peace and fun opportunities that the other child simple cannot handle.

Friends, the life of a special needs parent is completely exhausting. We can't just "call a babysitter" and take a break. Self care? Really? The next person who tells me to take care of myself needs to offer to figure out a way to watch my son so I can actually do it. So my husband can actually do it. Right now the only way we can is after he's in bed at night. And by 8 pm, WE HAVE NOTHING LEFT TO CARE FOR. Really, it's just bedtime. But oh wait...there is the house to clean and the laundry to do and the bills to pay because nothing else can get done during the day.

Friends, I don't write this to ask for sympathy or advice or answers. I am literally turning over every stone I can imagine to get answers and help and I have fellow warrior mamas cheering me on. Our mental health system is deeply broken. Our insurance system is deeply broken. I honestly don't know if we'll ever find the right answers but I also can't stop fighting.

I am writing this because there is probably a parent in your life who is drowning. Who spends all day, every day searching, praying, pleading for answers and help and ending the day exhausted and alone again. And, most likely, consumed by guilt for what they can't give their other children.

Can you help? Can you drop off a meal for them? Can you take the other kids somewhere fun? Or figure out a way to watch their struggling child, even if it means it might be incredibly unpleasant and risky for you?

I had literally no idea how hard parenting could be until I had a child who didn't fit the "norms." I had no idea how all-consuming it could be, the strain it could put on a marriage, the ways it could reduce you to hopeless despair. I wish I had done more for my friends who were IN IT before I was but I just didn't know what or how to do it and I didn't fully understand how exhausted they were.

Friends, will you take a risk this week and ask a mom who is crying in her car what you can do to help? Or just surprise that dad who is totally overwhelmed with his favorite treat to eat once those kids are finally in bed?

This is a deeply lonely struggle, and every little reminder that someone sees, cares and isn't judging us is an extra heartbeat for our day.

That Deeper Story

You don't always know it when you look at them.

They smile. They pick their kids up and cover them in hugs and kisses. They read them books before bed and help them build towers and tell them to dream dreams.

Most likely, they are exhausted.

If not from today, from yesterday or last week or from years and years and years.

From the 20th phone call this week with a teacher or a therapist or a doctor or someone from the insurance company.

From the long lists posted on their pin boards or kitchen cabinets or fridge. The lists of forbidden foods, of rigid schedules, of sensory diets and supplements. The food logs, the oils, the salts, the reminders to pull out the theri-putty or weighted blankets and to never, ever forget to go over tomorrow's schedule before bed.

From "divide and conquer" parenting that protects siblings from the chaos but can wreak havoc on a marriage.

They might look unflappable or they might have eyes welling up in tears.

And you might not know why. You might look at their children and not know there is anything different.

Or you might look and judge- why is that child screaming, don't his parents know how to discipline? Can't she act her age - spoiled brat. You don't always see the child, you don't always remember to believe there could be a deeper story. Everyone has one, though.

Don't you?

But what if you met that child's eyes and smiled. What if you squeezed that mama's hand or offered real words of encouragement to that exhausted dad?

No, not the empty kind. Not "you are a good mom" or "hey, it gets better."

Sometimes being called a good mom comes up empty. Who decides that definition, anyway? And to be honest? Who really knows if something will get better, easier, less intense?

No, say something real, for goodness sake.

"That seems so hard. I would love to help. What do you need right now?"

"Hey, I'm bringing dinner tomorrow night. What's that allergy list again?"

"It's ok to feel like this is impossible. I love you and you're not alone."

They might not have much energy to be a great friend right now or to even return phone calls. (In fact, sometimes the sound of those phone calls makes them cringe. Is the school calling? What now?)

They might be just hanging on by the skin of their teeth, fighting each day to give their kids the best of what they have left.

But fight they will. They are warriors. They see the deeper stories of their children and they won't give up. 

And their kids? Their kids are amazing.

They might not always look or act like yours do. But they are beautiful. Passionate. There are things that move them, that light them up. Sometimes their smile can totally change a room. Sometimes their screams can stop you in your tracks. But they are precious. Loved. Worth fighting for.

Next time you see one of them, take pause before you judge. Before you dismiss or assume. Before you cast words of shame upon them or their parents.

There's a story, there. And it's worth sticking around for. I promise.