Sometimes, it is all too much. Have you ever gone on vacation and eaten every meal in a different restaurant? And when you got home, you couldn't even think about eating in a restaurant for awhile? That the the thought of having to pick one that sounded good, drive there, pick something off the menu...it was all just too much?
That's where I am with Kennedy's journey. I don't know exactly what the trigger was, but I've hit the proverbial wall. In the last few weeks, I have cancelled orthodontic appointments to get some gear in place, an allergy testing appointment, a GI follow-up appointment, and a consultation appointment for having teeth pulled. Not to mention that we're supposed to be talking to folks about a prosthetic ear. But I can't even fathom at this point picking up the phone and rescheduling.
And if that makes me a bad mom, for not getting my child the care that others thinks she needs, then so be it. Because frankly, I think she needs a break too. Each appointment takes something out of her and I hate to watch it. She has to psyche herself up for days before going to any appointment, she stoically gets through them, then she doesn't want to think about it again. If things are discussed during an appointment that she doesn't want to hear about (possible surgery, allergy testing, shots, new medications), she totally tunes it all out. And getting her to open up about what's on the medical horizon gets harder and harder the older she gets.
And I'm just tired of it all.
Kennedy once made the comment to me that she was glad she didn't have something like cancer, where she would have to go to the doctor all the time until it was gone (and don't get me wrong, I'm glad of this too). But what she doesn't realize is that she is doing the same thing on a much wider scale (many more specialists) and hers will continue for the rest of her childhood and beyond. She will always have to stay on top of her GI issues. And her immune issues. And her scoliosis/kyphosis issues. And her hearing issues. And her vision issues. And her dental issues. And the myriad of other issues that go hand and hand with Goldenhar.
My whole point is to say that it is okay to hit the wall. It is okay to let the wall stop you momentarily. It is okay to be tired of it all. It is okay to take a break. Because if you've reached that point, then the only way to continue on is to take that break. It is a way to renew your strength. It is a way to focus on the necessary. It is a way to make yourself whole again. And let me tell you, it took me a long time to realize that this is all okay.
We've been through a lot in the past nine or so months. And maybe that is the trigger for my hitting the wall. No matter, I'm thankful that we're finally at a point where I can let the wall stop me momentarily. I'm thankful there isn't anything serious that we need to deal with in the here and now. We still have a long way to go - prosthetic ear, smile surgery, loads of orthodontic work, painful jaw surgeries, spinal fusions, neck surgeries. But for now, I'm going to lean against this wall and take a break from it all and let Kennedy be a kid. Soon enough we will pick ourselves up and climb over that wall and continue on with our journey.
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