Finding an escape from a tiny bubble

Boooop boooop boooop..... Beep beep boop...

I swear we will be hearing alarm sounds of all kinds when we finally get home. Four machines hooked to my son. Each of which has an alarm that seems to go off every 5 minutes. I have ringing of the brain.

Starting to get sick myself. Which is a rarity. But my throat is killing me. Don't wanna talk or swallow. Blegh...

Walking these halls every day with no escape. Seeing the same sick kids that never leave which seems to me that they never get better. So hard not to get depressed. A child's life is supposed to be full of chasing butterflies, playing in the mud, and running around carefree. Not full of machines and needles and medicine. But on the other side of that fact, I guess we are lucky to have the technology and knowledge to be able treat these kids.

Obviously, it's just not something any person wants to be engulfed in. Hearing any child say they just want to be normal again Is heart breaking, but when it's my own, it kills me inside. It's the little things that this kid misses. Being able to walk around without two poles behind him, or going to the bathroom on a regular toilet. Zander keeps apologizing for things beyond his control and every time he says sorry for having an accident or some other bodily function that he has no control over, I literally tear up on the spot. Trying to hold the tears back while explaining to him that he doesn't have to be sorry and that there is nothing else in the world that I would rather be doing than cleaning after him, isn't easy.

Three doctors that have come in have said that he is a very mature 6 year old and he understands more about what is going on with him than they like to hear. And that, just doesn't seem ok to me. No kid should have to know all this medical hoopla but unfortunately that would only be in a perfect world.

Normal...what is normal?

Healthy? Happy? Alive?

All of these have many meanings.

Until next time...

Xoxo Rockie

....hurting