As Maura and I sat and ate dinner together last night, I could hear her smacking her food. Not so much smacking, but making these little popping noises with each chewing motion. Little popping smacking noises as she shoved one piece of food after the next into her mouth, barely a breath in between each bite. One teen sat at the furthest end of the table. The other two fled to the family room with their plates. And I sat there thinking “I have to live with this forever.”
For. Eh. Ver.
I’ll admit – I wanted to flee from the obnoxious eating noises as well. We have been working on getting Maura to chew quietly, with her mouth closed, but “quiet” and “closed” are concepts she is still working on. Also, she has an extremely high palate – more speech therapists have asked us if she has feeding issues, her palate is that impressive. I remind teens that Maura doesn’t chew obnoxiously on purpose most times, just that it’s harder for her to chew.
Of course, I’m sitting at the “hypersensitive to such things” table myself. It drives one teen so batty, he’ll go slightly catatonic. It makes my skin crawl too. And since the siblings have all put their hyper-focuses on Maura’s chewing, I find that my ability to ignore it has been weakened.
And that’s a bit unfair, because I have to live with this forever.
For. Eh. Ver.
So last night, as teens fled and I concentrated on my own chewing noises to block out the little smacking pops Maura made, I thought about how I can’t flee. I’m here, with her, by her side, for the long haul. Fleeing is not an option. Coping is.
Every day is a balancing act between surviving the day and preparing for the future. Some days, we just go into survival mode, and try to get through the day, the afternoon, the hour. Our life has become one of continual compromising and repeating the same thing over and over and over for weeks, months, until it finally clicks in.
Case in point – the other morning, I left Maura’s clothes for the day out on the bathroom counter. I left to find socks, came back, and found she had gotten herself mostly dressed. And I got giddy that my eleven year old dressed herself. Correctly. In a normal amount of time. The time factor has always been a stickling point – we want her to be independent, but school mornings, we don’t have twenty-five minutes as she motor plans her way through getting clothes on. So we’d compromise – help her with pants, underwear, shirt, but make her put on her own socks.
Of course, this means even more planning – making sure her clothing is free of snaps, buttons, zippers, or clasps. Making sure they’re easy to pull on. Finding shoes with velcro closures or can be easily slipped on. Jackets with little toggles on their zippers that make it easier to grasp (even though she still can’t match up the zipper itself, I have to start it.)
Maura is in that wonderful phase where she has outgrown most kid sizes, yet not all adult clothes fit. Which means all the tricks and go-to items I’ve gone to over the years are now pointless. Which means I have to spend more time plotting her wardrobe, to find things she can manage on her own. And that she’ll love. Because the girl has her own sense of style.
And that’s just one little segment of what we go through with her day in and day out.
It’s exhausting. And forever.
As I write this, I have Spotify playing. The Script’s “Superheroes” just came on, and I heard the lyrics…
When you’ve been fighting for it all your life
You’ve been struggling to make things right
That’s a how a superhero learns to fly
People call special needs parents superheroes. They say they could never do what we do. But honestly, we never imagined being here ourselves. I never once imagined I’d have a special needs child. It isn’t something my husband and I discussed. It just never occurred to us we’d end up in this boat together. But here we are, and we’ve done what all the others have done – take it day by day, sometimes struggling, sometimes winning, sometimes barely surviving, sometimes walking by the bathroom to see your child getting herself dressed all on her own and feeling the triumphant elation that comes from months and years of hard work.
Being in it for the long haul means that most people don’t see our day to day struggle. They either see Maura at her best, or at her worst. She can be amazing, and she can be horrible. We have learned that places that are too busy, too full of people, too full of visuals, those places can be too much for Maura to process and she’ll end up on the floor in protest. So we try to avoid them with her – not because we’re bending to her will, but because we’re respecting her limits.
Being it in for the long haul means a lot of cleaning up after her. Allowing her to fix her own snack, then having her help clean up the spilled milk or cereal, reminding her to put the orange juice container back in the refrigerator, and that the banana peel goes in the trash, not left on the table. Knowing that these are all still emerging skills, something she’s not going to achieve this year, realistically. And being okay with that.
Being in it for the long haul means getting used to looks, stares, interference, opinions, suggestions, and a barrage of other things from outsiders. Growing a thick skin, and yet feeling raw. Not always knowing if you should laugh or cry over something. Coming to terms again and again with the fact that this is your life, this is how it is. Having moments, as your daughter sits next to you, smacking her food, and thinking “For. Eh. Ver.” And accepting it all for what it is. Your life.
And then looking at the beautiful girl sitting next to you, who gives you a big smile, a smile that shines from her whole being, and knowing just how lucky you are to share this life with such an incredible little soul.
Being in it for the long haul means there are fights and struggles…but then you earn your cape, and you learn to fly with it.