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.