True, I spend an inordinate amount of time traveling to and from and participating in a plethora of therapy sessions, none of which are for me (but I think that some of them should have been). I spend a solid fifteen minutes putting on Ben's orthotics and shoes, extra wide and laced so as to fit around the orthotics, rather than slipping on crocs or telling him to go and get his velcro shoes. Instead of playing at the park, we're climbing stairs to strengthen Ben's legs and improve his mobility. Rather than enjoying story time at the library, we're at home, looking at pictures of objects to help Ben identify objects by pointing. I have spent countless hours cleaning up after what I now know were dozens upon dozens (hundreds?) of absence seizures. I still put almost every bite of food in his mouth myself (unless the food is dry like cereal or pretzels, which he has down-pat), and I still have to hold a bottle for him to drink. I estimate that to amount to approximately 3,500 meals and around 3,000 bottles of milk. I am still washing bottles which should be a distant memory by now. Ben will never drink out of all of those sippy cups I saved and still can't quite toss, which brings a unique melancholy. So yes, I do a lot of things I never expected to do or to still be doing, and life is much different than it is for most of my friends. This is true. But I still consider myself a regular mom whose day tends to be mostly routine.
I might never fully get there, but I am transitioning from a mother who is weary and desperate to wish everything different into a mom who delights in every day and appreciates what a delicious, funny, adorable, loving little boy she has been given. What kick-started that transition? I suppose it was the realization that Ben doesn't know he has special needs or that he's any different from other kids. How could I do him the disservice of being sad about who he is or what he can't do? Like any mom, my job is to help him along his way, and his way is just different than I expected it to be. The despair that used to hover around the daily minutiae of life with Ben has ebbed and been replaced with an ability to savor his sweet face, belly laugh, and hard-won accomplishments. I don't think in terms of milestones for Ben; he's more of a stepping stone kind of kid, and I think that's just fine. Today might bring an extra step as he cruises laterally around the ottoman; tomorrow might just bring that first step after letting go of the ottoman that I can tell he wants so badly to try (and if it does, you will hear me gleefully squealing all the way in Kentucky)! I measure Ben today against what he could do yesterday, not against the boy down the street or his cousins or his brother. Some days, I don't measure him at all, and I just let him be.
I'm not all sunshine and roses. Sometimes, just as I'm savoring, a moment hits me with a throat punch/ leg sweep combo, and it's brutal. Just yesterday, Ben was eating pretzels while sitting in his highchair, and I was feeling mighty proud of my freshly cleaned-out pantry (Hey. Don't laugh! Getting the pantry organized to OCD standards while fending off a couple of little boys who would like nothing better than to snack themselves into oblivion is no small feat. Especially if you also spill half of the massive bag of tiny red lentils, scattering them all over three shelves and the floor. Not that I did that or anything. That's just an example. Shut up.). I glanced out the kitchen window and smiled at the sight of John pushing his red soccer ball in the baby swing. That lasted for half a second, and then I crumpled over the sink, crying immediate, enormous tears into the drain. I gazed back at him and thought, "He should be pushing his BROTHER in that swing, not a ball. He's pushing a BALL. That's the most pathetic thing I've ever seen!" Thoughts like that usually lead to all sorts of boo-hooing about how none of this is fair to John, who just wants a brother to play with him. Before I could turn and tumble down So Unfair Road, I stopped and reminded myself that John can push Ben in that swing just fine, and Ben loves it. In fact, they do all sorts of things together. Maybe they don't play tag or wrestle or fight over toys (yet), but they do throw a ball back and forth until the cows come home and they love to laugh at each other. John is also Chief Commander of Keeping Ben Out of Spuddy's Food and Water, and he takes his post seriously. Yesterday afternoon, I discovered him dragging a flat-on-his-back Ben by one leg out of the laundry room. A month ago, this would have been met with howls of protest and backhanding; today, it was accompanied by laughter and clapping. There might also have been some human consumption of dog food, but I'm going to sweep that under the rug in my mind.
Let's review, shall we? I'm a regular mom who has to do a few not-so-regular things. John is, among many other wonderful things, a thoughtful, considerate big brother who has developed an even larger capacity for tolerance and compassion than he already possessed before he had a brother. Landy (because he doesn't get mentioned enough in this blog) is Ben's biggest fan, an engaging and loving dad, and he would do anything or go anywhere to help Ben be the best Ben he can be. And Ben? Ben is a total rock star, and the rest of us are in the front row, peeling his grapes*.
*Um, yeah, Ben can't actually eat the grapes yet, but when he can, they're all peeled and ready!
