You wake up so early every morning and your body is still exhausted from the previous day… week… month… year. You give yourself a pep talk, take a deep breath, and swing your legs over the side of the bed. If you’re super lucky, like me, your husband has already brought up a hot cup of coffee and set it on the nightstand.
You head down stairs and mentally prepare yourself for the battles and potential triggers that lay ahead. You keep your voice light and even as you greet your child. Some mornings you get a big excited bear hug, and other mornings you are met with silent indifference or an, “I’m busy.” You’ve learned not to take it personally.
The rest of the morning is spent getting yourself and your children ready for the day… you administer medications and then brainstorm the best way to get him to brush his teeth. Dressing takes three times as long as you fight your own selfish desire to just dress him yourself to make it go faster, but you know this is a life skill he needs to learn – no matter how long it takes. So you work together, sweating, and help him through it. He wouldn’t eat that morning but you know that’s not unusual, still you feel guilty as you drive him to school on an empty stomach. Come to think of it, you never got a chance to eat either.
The day is full, full of phone calls and paperwork and emails. You set up appointments, or drive to appointments. You call insurance companies and pick up prescriptions. You read the information given to you about new therapies and programs and you try to balance your budget to figure out how to make it work. Horse therapy seems amazing and so does swim therapy, but you can’t get the numbers to agree, so you set it aside for another year, another time.
Laundry, grocery shopping, dishes, vacuuming, dusting, changing the sheets, mopping, and all these things get wedged in somewhere as you have time. Sometimes you don’t, and that’s okay too.
At school pick up your heart swells as your child runs out of the doors to greet you. The teachers tell you about his day and you are so thankful for him and so very proud of who he is and how hard he works. He sat through the entire school play and you cry tears of joy on the way home because that was such a big step for him.
Later in the afternoon you go from moments of silly fun to calm to panic in less than five minutes. He ran out the front door again and you didn’t catch up until he was at the end of the street. Sweating and panting you try to explain how dangerous running away is and are met with a confused stare. Back inside you write a note to yourself to install a new specialty lock. That night you’ll wake up in a sweat because you dreamed he ran again but this time you didn’t hear the door.
As you build train tracks he points to a toy and says the word that has been baffling you all week. Ah! Finally you know what he’s been trying to say! Relief sweeps over you as you realize next time he asks for it you’ll know what he wants and won’t have to settle in for an enormous melt down.
You watch him play with his sister as you fix dinner and your heart swells with joy at the gifts you’ve been given.
Another sunset and it’s time to repeat the routine you did that morning – medications, teeth brushing, and getting on pajamas. You go through three different shirts because they were either too scratchy or too tight or too… something. His sensory system is rebelling against clothes, but he can’t sleep naked so you try again and at the end of the whole thing he winds up accepting the very first shirt you put on him.
You carry his tired body up the stairs and read him the same book you’ve read for the last eight nights because he loves the routine and consistency. You turn out the light and lay down… rubbing his back and humming for the next 30-60 minutes… or two hours… however long it takes for his body to settle. You look at his beautiful face and once more your heart swells. You kiss his forehead before you tip-toe out of the room.
Then you make your way downstairs and glance at the to-do list. You see that’s it’s not even half finished, but you’re wiped out. Friends have left messages but they will have to wait for another day. You’re too weary to talk, too weary to do much of anything. So you collapse on the couch and grab a book or the remote and just sit in the peace. If you’re lucky, you have someone sitting next to you… and if you’re really lucky he’ll be rubbing your feet.
You head off to bed and say a silent prayer that your door won’t be opened too early in the night by a frightened little boy who can’t sleep without the comfort and safety of your body next to his. You force yourself to turn off your brain as you lay in the dark going over everything that’s still unfinished and undone and waiting.
You know you’re going to start over again the next day and the work will never be done. You also know that it’s worth it. You know that this is your story too. This story is about him and it’s about you and it’s about so many other people whose lives are touched by the little person you get to raise and love.
And you know that no matter what anyone else thinks, that all of this – the mentioned and the unmentioned, the hardest things and the most joyful moments – is a gift. Because it’s not that you have to do those things… it’s that you get to the be the one to do them. And you get the front row seat to every miracle.
So to you mommies… the ones who get to do so much and feel so much for your little people with extra needs… Happy Mother’s Day. I hope you have people in your life who tell you not just this weekend, but every day, how appreciated and loved you are. You are beautiful.
Lauren's new book, It's Okay About It: Lessons from a Remarkable Five-Year-Old about Living Life Wide Open is available in book stores now.