Josiah saw an Otolaryngologist yesterday at Texas Children’s Hospital. Yes, we used a wheel chair to get the boy in the door. No, it did not go well.
His amazing caregiver came along for the fun. The visit would have been impossible without her. Though no medical professional touched Josiah the entire 2.5 hours we were there, he made that face he always makes when he’s stressed and ready to flee. It’s usually one of the first indications Josiah is anxious. He tightens his mouth and sticks his tongue out ever so slightly with an anguished expression on his face. It means let’s go NOW!
It used to be we’d just see ‘the face’ as I affectionately call it when Josiah felt uneasy. Lately though, he has been pairing ‘the face’ with a swift blow to the side of his head. Depending upon his level of frustration, we sometimes hear a moan or two. Yesterday though Josiah was scooting his feet across the floor to propel the wheel chair out the door. He was wapping himself in the head repeatedly; communicating quite clearly he was done with that place.
An Otolaryngologist is a doctor who provides medical and surgical care for patients with disorders of the ears, nose and throat. The one we saw yesterday was great. She was patient, very knowledgeable and extremely thorough. She explained everything in explicit detail. We talked about the necessity of a sleep study and the challenges it would present for Josiah. She suggested an alternative that would involve an endoscopy and quite possibly surgically removing any obstruction she might find during the endoscopy that causes sleep apnea to occur. She explained the need for a sleep study following the endoscopy to ensure it ‘worked’. She mentioned a CPAP machine and some other things.
You want to know what I was doing?
While she was being thorough and knowledgeable and helpful, I was singing in my head. With Josiah next to me in the wheel chair and me in the examining chair, to make him think this visit was all about me and not about him, I was making up songs in my mind. ‘ I don’t want to be the mom anymore. I don’t want to be the mom anymore. I don’t want to be the mom, I don’t want to be the mom. I don’t want to be the mom anymore.’
Immature? Yes. Helpful? Not really. But I kept doing it anyway.
Everything she was saying would be way too overwhelming to put Josiah through. It would involve quite a few hurdles for me to jump over, just to get the ball rolling. I couldn’t even wrap my mind around it, so I didn’t. I just kept singing in my head.
When the doctor stopped talking, I had to admit I was lost. This is all clear as mud I said and what would you do if this was your child I asked and what would happen if we just left today and didn’t do a thing, then what?
She explained some more and I nodded like I was right there with her.
Here’s the truth. I DON’T want to be the mom anymore. Not the mom who has to drag her kid to one more specialist appointment across town, strap his body in a wheelchair, force him into a room by prying his fingers from tightly grasping the door jam, reassuring him with soothing words that everything is going to be just fine, no one is going to hurt him and we are just going to talk today as he pummels himself in the head.
I just want to be the mom who makes up songs in her head, to get through the rough spots.
You should hear the ones I sing to him in the bathroom.
I’m so sorry, Sandy.❤️
Don’t be Liz! The words may not be, but the tunes are always upbeat and happy!! Guess I didn’t express that. It’s what gets me through the rough patches. I adore my boy and all our kids. Just wish life was a little easier for him!!! He’s a trooper for sure!
I am baffled that the doctors just seem to give advice on what needs to happen and not realize the possibility of it actually happening. I wish the docs would say, stay home, enjoy your son, do the best you can. You’re doing so amazing-don’t forget the splash pad triumph!
I know!! It gets to the point where you just have to decide what is more important…one more procedure or just accepting status quo. I love your advise Lisa. I’ll take it! : o ) Thanks!!!
So hard sometimes. I am the lyrics-changer here at home, and also have been known to change Dr. Seuss books into rap songs after reading them over and over and over…. Yes, it’s nice to be able to switch off, so to speak, through respite. Although I never really switch off unless our Cowboy is at camp. SO glad you had your own camp and hope you can hang onto the serenity it brought even in the midst of it all. I have to be “up” for procedures, etc. If I’m overwhelmed, I have to reschedule until I have peace. I can very much relate what you wrote. Sometimes, you just need to get in a hot tub and chill.
LOVE your creativity Kim…never would have thought to changing books into rap songs. That is genius and hilarious! I’m picturing some break dancing moves to go with the rapping!
I’ve decided THIS procedure for Josiah can wait!! There were calls I was supposed to make to get the whole process in motion, coordinating Doctors and having preliminary tests run, but I simply decided NO! Not now anyway. Then wouldn’t you know it, Josiah started having some sleep issues again. Go figure!
I need to know the tune that was in your head during your mom protest song!!! 😉
I keep wracking my brain to figure that out. I thought initially it was ‘The Wheels on the Bus’ but it didn’t fit, then it seemed like ‘If You’re Happy and You Know It’ but that’s not quite right either. It’s definitely a tune I’ve heard before!! If I think of it, I’ll be sure to let you know. All those years of teaching Kindergarten were great practice for making up songs on the fly.
Hey Kim,
Just reread this blog post and REMEMBERED!! The tune WAS ‘If You’re Happy and You Know It!” It just came back to me…maybe because we are embarking on another Specialist appointment today and I’m bracing myself to start singing again! : o )