I'm very fond of the classic Keep Calm and Carry On graphic. One of these days I'm going to get it as a plaque or poster for the wall - for now, the only thing of mine bearing this image is a travel sized packet of tissues imprinted with this graphic. They are my emergency use only tissues, generally only pulled out when I'm crying in a surgery waiting room or on the way home from the doctor.
One night some of my teens were getting silly (imagine that!) and googling spin offs on the whole Keep Calm thing. The later it got the sillier we all got, and when we saw this one, we all just lost it and couldn't stop laughing.
Because I'm generally known for my ability to keep extremely calm (at least on the outside) during a crisis, I joked that we needed to make a reversible sign with both images. The thought was that we could hang it on the foot of Noah's bed so that everyone could tell the difference between an "it's OK, keep calm" situation versus a "this is pretty bad but Mom's doing well faking it" situation. Of course, it was a (mostly) silly thought and we've never done this.
Here is what I can say right now - if I DID have that reversible sign, right now it would read Keep Calm. Yes, the situation with Noah's line is a truly massive, irreversible step in the wrong direction, but at this moment in time it changes nothing. He cheerily informs people that he now has "two lines for work and one just for decoration" LOL. His days look no different than they did last week, or the week before that.
What we have done in choosing to "ride the lamb" is to keep this line and in doing so we have preserved the ability to give Noah the same nutrition, hydration, and medications we gave before - in short, to keep him comfortable. It is a wee bit more time consuming but totally do-able.
What we have lost is the ability to provide aggressive treatment for infections - it's no longer feasible to add IV antibiotics, IV antifungals, IV steroids, IV ibuprofen, etc. to his other meds without an additional lumen. The only way to get that additional lumen would be to have surgery to replace the line, and in doing so we could lose access completely and not even be able to easily keep him comfortable. If line placement failed, or if it succeeded but we eventually lost that line, his life would be numbered in days.
I guess you could say right now we are buying time. We are choosing quality of life above all else. We are re-doing a number of protocols to place line preservation above everything else, because the line keeps Noah fed and hydrated and comfortable. I don't know when the next illness will strike. I don't know if it will be viral or bacterial, and I sure don't know what we'll do if it is bacterial. In reality, I don't need to know.
What I do know is the goodness of God, and what I do know is TODAY is that Noah is content and secure and loved. We spent time today making a bunch of autumn decorations for the little seasonal tree in his room, and we also spent a good bit of time discussing the fact that it wasn't a competition and it didn't actually matter if his paper chain was longer than Mary Faith's or if she completed her turkey craft faster than he did LOL. He ran out of his beloved popsicles and I ran all my errands and didn't remember the popsicles until I was back in the driveway - so of course, I turned around and went back to the store for them. He showed his nurse his photo album he's making of Jake pictures, we did a bit of math and phonics, and we talked (AGAIN) about how it's not polite to interrupt. He made me smile and he made me laugh and he drove me nuts just a wee little bit. It was a perfectly normal and therefore utterly perfect day. It was so full of fun and teaching and squabbling and correcting and napping and playing that there just wasn't room for panic or freaking out.
I don't mean to minimize the mind boggling gravity of his current situation or how difficult it is. Noah can turn on a dime and I could well be posting of some emergency before the night is out . . . but until then, let me reassure you that his ordinary days are just as ordinary and therefore extraordinary as ever. Heartache is coming but it's not here now, so for now we just embrace living.
Blessings,
Kate
