Namine slept better last night than the night before, thankfully. She still coughs occasionally – and sometimes hard enough to make us think she’s going to throw up – but while asleep, thankfully, she seems to be free of it. She didn’t wake up screaming last night, but I didn’t make her keep the braces on all night, either. Perhaps I simply don’t have the resolve of her therapists. But it’s not their child.

Do not misunderstand me. I do not mean to say that Namine’s therapists don’t care about her; on the contrary, they’re strengthening her legs and feet, starting her to walk, and that is no easy task. I know they care about her. But they are not the ones waking up to screaming in the night. They do not hear her pleas of “No, no more, all done, ALL DONE” when we put her braces on. They do not live with the conflict of pain versus benefit. It is we, her parents, that need to make a judgement call at 3:00 in the morning, whether to keep the braces on or take them off.

We have been scolded many times by Namine’s therapists for not being as diligent as we should be in keeping Namine’s braces on. But I make no apologies. I will not subject her to what I think is too much pain for her to bear.

I want you to take a step back and reread that last sentence. Think about it for a moment. I have written many times on the subject of Namine and pain management, but let me bring it up once again.

Namine has lived with pain her entire life. It is something she’s used to; it’s something she seems to consider as normal as life itself. As a result, she has a much higher pain threshold than any other child we know of. When she has an ear infection, we can tell that she’s uncomfortable – sometimes. But she doesn’t complain about the pain. She doesn’t complain of a stomachache; we only know her stomach hurts if she is particularly gassy or throws up. Trach infections, fever, the list goes on. Namine does not complain of pain or discomfort, unless it truly is unbearable.

The first time she encountered what she seemed to consider real pain was when she was recovering from her foot surgery. For the first time, she would tell us what hurts: her feet. She would complain of her feet hurting constantly. She still does. If you ask her, “Namine, can you tell me if something hurts?” Invariably, she will point to her feet. Sometimes both feet, but always her right foot.

A side note: I have often wondered why it seems to be Namine’s right foot that always hurts. It was her left foot, after all, that gave Dr. He-Who-Must-Not-Be-Named such trouble. I’ve come to the amateur conclusion (I say amateur because I’m not a doctor; and even they have only guesses, no answers) that it’s because her right foot is more flexible than her left. More flexibility, as we know, allows for more resistance and more reversion and curvature. That’s my take on it, anyway.

At any rate, it doesn’t really matter what the reason is. What matters is that it is what it is. We deal and move forward. It’s all we can do; reflection and regret have no place in our lives, and we have no time for it.

But I digress. If Namine can deal with as much pain as we have seen, then how much pain can she be in to complain of her feet? How much more pain, to wake her up, screaming like she was being killed? And how, I ask, could I continue to put her through it, mindless of how it feels to her?

I still put the braces on her at night. Jessica still puts the braces on her during the day. We are doing the best we can, trying to improve Namine’s feet and legs, but we will not subject her to more pain than she can bear.

  • Wish it were different – not painful for Namine. I have every confidence that with each decision on whether or not to don the braces you are deciding in her best interest. End.of.story.