Happy 15th to my bestest boy

Fifteen years ago, after a late night race through almost-deserted Manhattan streets, (and boy, did my husband LOVE that drive – I think he was dying to get pulled over by New York’s finest just so he could point at me and ask for an escort. But I digress…) our boy Julian was born at Beth Israel Hospital, NYC.  At 10 pounds, 8 ounces, he made quite an entrance!

Jude is now 15. He’s talented, wise and funny in an almost visceral way. He’s working hard with the cards dealt to him and we couldn’t be prouder of all he’s accomplishing right now.  Happy birthday, Julian. Every day you become an even finer young man. Now let’s go watch some fireworks!

There walks a lady we all know (home hospice experience #3)

And exhale

Balance is everything

Balance is everything

Our hospice experience continues. We seem to be finally hitting our stride in many ways, these days. We’re getting the routine down – medications, meals, wake, sleep, etc. We’ve met all of the various hospice-provided staff, from nursing aides to social workers to chaplains, and all are lovely and dedicated people. We’ve rearranged the room a few times and are happy with the current configuration. And, probably most importantly, we’re finding the balance of medication – i.e.: morphine – to help D feel comfortable and breathing easy but not too groggy and out of it. And by “we”, I of course mean my husband. He’s leading the way here – I just follow directions. For now, we have a certain balance.

It’s the great unknown – the what happens next just waiting out there to upset our applecart – that haunts us.

Right now things feel good. D is comfortable and happy. She’s fully present and participating in life, albeit from a hospital bed. Yes, she’s a bit muddled from time to time – losing the threads of conversation, for instance – but she is on a steady diet of morphine; however low the dose, it has an effect. She’s eating very well – better than she has in some time, I think. We have a stylist coming in every few days to shampoo and dry her hair so she feels good there too. From where we’re sitting right now, that answer of “you should think in terms of weeks” when we asked “how long” seems way too pessimistic. We’re rocking this whole thing, right?

What we don’t know is how quickly her lungs will continue to deteriorate. She’s getting regular breathing treatments and is on oxygen all the time but her issues are mainly around her inability to exhale effectively, rather than inhale. Having oxygen on doesn’t help significantly because only so much of it can get in because the CO2 in her lungs is taking up the real estate. She’s on breathing treatments regularly that alleviate this somewhat but the damage is already done – it won’t get any better. What we don’t know is how quickly and what will happen. She’s hospice; she isn’t on monitors so we don’t know, for example, what her blood oxygen levels are at but we know they aren’t good. We briefly considered getting a blood O2 monitor ourselves but decided that would only become a number for all of us, especially D, to obsess about. And there is not a damned thing we can do to truly affect it so why go through it?

balanceSo we go, day by day and week by (hopefully) week. We’ll take what comes when it comes and will do our damnedest to be as ready for it as we can be. For now, we have a precious gift of comfort and conversation and we’ll make the most of it.

Thank you to everyone, both friends and strangers, who have taken the time to read these posts and leave me your own words of experience, strength and hope. It means so much.