Yesterday, we had our monthly visit with Dr. Lung.

To say it went well would be a big lie. To say it was terrible would also be a lie.

It just was.

Although, truth be told, I’m pretty sure I had an out-of-body experience.

She reviewed the lab work and testing done on Jack. He is fine that way. There are no underlying conditions causing his lungs to be so terrible. Therefore, the true root of the problem is simply that he cannot swallow (even his own saliva) without aspirating.

Was all this a big surprise? No.

Dr. Lung sat across from me and actually teared up. This woman, who I’ve never seen crack a smile let alone cry, was genuinely upset. I reached over for J’s hand, as if my poor eleven year old was going to help me hold it together. Heck, she was hiding behind a book so as not to hear or acknowledge what was happening.

It was then that this specialist began to talk to me about palliative care. As she spoke I was two places at once. I was there, very present,  listening while nodding my head and breathing deeply. I was also elsewhere, in a pair of scrubs, next to the bed of a patient, helping a physician explain palliative care to a family. I was once in this doctor’s shoes. I knew how hard this was on her, and I was feeling for her.

So, then I’m like, “What is wrong with me!? Snap out of it and pay attention.”

Back to reality.

Palliative care.

For a 4-year-old.

I couldn’t even let that sink in without feeling sick.

Basically, this means that we give in to the aspiration. We can’t fight it anymore. We will treat the symptoms (like, when he gets sick, we give him antibiotics) but we won’t keep him on the high-powered stuff to try to make his lungs  better. They can’t get better. They are what they are.

He is who he is.

That’s what I’ve been fighting for his entire life. I’ve just wanted him to be him. For society to see him.

So why was this upsetting?

Dr. Lung and I talked about how to keep Jack relatively healthy. More hibernation during sick times of the year, less hanging out with the general population. Plenty of cuddling, extra heaps of prayer.

It’s going to be fine, right?

The world continues rotating on its axis. People are going to parties, meeting new friends, going to jobs, falling in love…. We muddle through.