I have a friend who regularly asks me, “What is Nathan doing these days?”
I find myself answering her question with what he’s not doing. Every time I do it.
She graciously says, “But what is he doing? Is he crawling and exploring? Is he trying to stand? What does he like to play? Does he want to talk?”
She does it in such a gentle yet persistent way that I walk away from our conversations amazed by what he is doing. As his mom I don’t always see the little markers he’s meeting, even if he is a year behind on most things. I fail to notice the little things. Instead I ruminate on the things he’s not accomplishing. Most days the things he does accomplish are overshadowed by the biggies. The biggies being he’s still not eating and he shows very little interest or ability to vocalize. My expectations are high and yet I don’t want the disappointment when they aren’t met. It’s a tricky role. The role of mom. Because of my place in his life, I often find my joy over him diminished.
Last time we had this conversation I hesitantly told my friend, “Well, he did say ‘ba, ba, ba’ the other day… But he lost it.”
She tells me, “He is capable though.”
And that exactly is what I don’t see.
My kid is a mystery. I don’t know, maybe he will lose skills and I am protecting myself by not getting to celebratory over the little things. Or, maybe I just need to stinkin’ celebrate the little things on that day. Because even if he’s slow to learn new things. Even if he doesn’t keep his skills from day-to-day. Even if he decides he doesn’t want to learn something all together. He is developing. We are working super hard to give him the best shot at being able to learn some good stuff.
Therapy is our sport. I may never have to enroll this kid in an extracurricular activity, except maybe, Lord willing, the Special Olympics one day. As much as I don’t like therapy all that much, he loves it. It’s play time for him.
So here Charina, and anyone else who cares about the details of our lives, this one’s for you. This is what Nathan is doing these days…
Feeding has been a little slow-going since his PICU admission. Catching RSV set us back simply because when you get a cold you have lots of extra gunk in your mouth you have to manage. For someone who doesn’t swallow well a little extra snot (gross, I know) is a big deal.
We are still doing vital stim therapy down at Dell Children’s. Vital stim is a technique where the therapist attaches electrodes to his neck that give him a small electrical impulse to swallow. He certainly eats better with the device on, though even on a bad day he can be gulpy. He loves going to feeding therapy, he loves his therapist Jessica, and he loves tasting different foods. As soon as Jessica puts him in the chair he starts pounding on the tray and waving his hands for food. She just can’t get it in there fast enough.
This boy doesn’t show signs of feeding aversions. I think back to the NICU and how frustrated I was that the therapists wouldn’t let him eat. Dare I say, maybe they were right after all. Sometimes he gets so excited he tries to eat food off the tray. I’m so thankful we aren’t battling any known food aversions. Just abilities.
Jessica understands him so well and he can make her laugh so easily. They have good chemistry. Mac and I just sit and bear witness to it all. One day, maybe he’ll be eating and Mac and I will say “Remember when Nafe would pound on the table and Jessica would get him to swallow his favorite food, mashed bananas?” I certainly hope so.
This spring we switched from Nathan’s very first PT in the NICU, Katie, who we love very much to Natalie. Katie trained Natalie and knew we would all hit it off. Natalie comes to our house once a week, which makes me so happy that I don’t have to drive to see her. She’s helping Nathan get around his own home environment in his gait trainer, teaching me how to stretch him, and how to maximize the use of his new SMOs (orthotics, or foot braces). He’s doing well. He’s crawling–really fast–up on his hands now. He’s pulling up on the couch regularly and laughing when he falls down. He’s maneuvering around the house in the gait trainer and getting stuck in corners lots. He also runs into my kitchen cabinets, walls, and new refrigerator often. I try not to wince every time I hear a big thud or notice a new dent.
See? My poor walls. Makes you want to wince too, right?
His new orthotics help to stabilize his feet and keep them from turning outward so much. I’m also noticing that in ways he used to use his right hand more than his left, he’s doing the same thing with his feet. This causes him to turn in circles to the right in the gait trainer rather than get to where he’s going. His hands have gotten better. His left hand isn’t as fisted as it used to be. I think crawling has really helped with that. I’m hopeful that with lots of practice and these new fancy skateboarder orthotics (big brother picked out the skateboarder design) we are on the path of progression.
Not sure which one of us was more frustrated this day. It’s going to take a lot of tries.
Here’s little guy last fall where he was incredibly focused on eating the equipment.
Now, he’s all decked out with a gait trainer, orthotics, and lots of motivating crinkly toys. I hang them from anything and everything to motivate him to get movin’ and groovin’.
This one is a bit of a gray area to me right now. We are working on fine motor skills and basic communication such as cause and effect and requesting things. Meanwhile I am trying to learn how the whole sensory system works. It’s not intuitive to me and I haven’t found the right therapist who is able to educate both of us. We’ve had a couple. There are things with Nathan that I know will become sensory issues. I mean, just spend two minutes with him and you’ll notice he has to have something in his mouth at all times. The good thing is that at this age, nothing is drastically interfering with his ability to interact with his environment. I think over time we’ll better understand his needs in this area. This is part of the puzzle of Nathan that I haven’t been able to even piece together yet.
Aside from all these formal therapy regimes I’m trying to expose him to more kids his age at church and at playdates. I had a friend over the other day who has girls a month younger than him. I was shocked by how much he studied their behaviors. We have a busy box toy that I repeatedly show him how to work. He barely pays attention when I’m modeling it for him. But then one of the girls was working it and it was like he was taking notes for a big important exam. He was so focused on what she was doing. He actually started playing with it after they left.
During that same playdate I stuck him on the trampoline with the little kids. Usually I go in there with him but I set him free to play and realized that yes, his movements are so very different and he doesn’t fully get everything going on, but he loves to interact to the degree that he’s able. He laughed on the trampoline as they gently bounced him. He even crawled back to the opening when he wanted out. It was the first time I didn’t have to go in after him. And it hit me, that maybe he is able to do a little more than I give him credit for. I need to let him try more things and spread his little wings.
This little birdie of mine may not fly with the rest of the flock but he wants to try to practice using his wings. I have no idea where we are headed with this kid but I’m getting more comfortable with the journey. Since Nathan loves therapy it makes it easier to keep at it and see where he goes. And when I get weary and discouraged I’ll have my friend there asking “What is Nathan doing lately?” as if to remind me all over again.
…it is much truer that the members of the body which seem to be weaker are necessary.” -1 Cor 12: 22
Also be sure to check out my list of Favorite Books on Disability!