the post I almost didn't write

I've put off writing this post for a while - mostly because I didn't want anyone to think it coincided with their visit, or some food they brought, or something they'd done - but also because I really don't want to seem ungrateful. We're so grateful - SO grateful, but we also want to remember what is extra helpful.

We are beyond lucky to have all of these incredible people in our lives who consistently hold us up and help us survive this madness. Everyone is acting with love - everyone is putting their best foot forward for us. 

And my GOD - how incredible is that? To have our world stop spinning and at have literally everyone we know stop theirs spinning too, turn inward to us and say, "How can we love you more?"

Damn. It's like we live in a Hallmark movie  (but a good one - not like A Shoe Addict's Christmas).

We are lucky.

Grateful.

As happy as we can be considering what's happening.

But I also realized that there are things that are hard - things that are real, that I haven't mentioned. These things are part of our journey too, and although they may seem small, they can be like pebbles in our shoes. They aren't breaking us, but sometimes they wear us down. We really can't understand how with so much love surrounding us, that things can still feel so hard - but they do.

Aside from the obvious - that losing him is the deepest kind of heartbreak, the days are exhausting.

They start at 5 am - that's when Rico wakes up. He's usually a bit disoriented. It seems that the part of his brain that turns thing off was removed, so unless he's medicated, he doesn't usually sleep. So I make coffee, fix breakfast, give him his meds and do all of the things people need to do to get ready for their day. There is a lot of helping him move and get adjusted - which is harder than either of us prepared for back in May. Neither of us expected to come home with a 170 pound guy who is 70% paralyzed. But once he is comfy we can snuggle with breakfast and take a trip somewhere beautiful. (Hospice is a wonderful program, but they are only here every other day They don't show up to give you a break - they show up to help you do what needs to be done. So while they are here, working with him in a chair, the rest of us hustle like a NASCAR pit crew to change sheets; get fresh clothes; put on his gait belt; gather fresh towels; and dispose of the garbage and laundry that's generated by each visit.)

Kaia and I talk a lot about what the best things are - which things are really helpful - which things we want to remember if we are in a situation to support someone through hospice. This doesn't mean that we are ungrateful for the other stuff, just that some things really stand out as super helpful This is our list:

1) God bless the sitters - the people who can just sit and camp out in the recliner next to his bed and don't mind if Rico is awake or asleep. Bonus points if you don't need to chat with us either. We love chatting (well Rico loves it most of all), but we also love naps, and taking Nika to the library, and being able to be downstairs in the rockery with her without worrying if Rico is doing ok. The sitters are M.V.P's

2) Paper plates. I actually loathe being wasteful, but when you're feeding a bedbound patient six times a day, there actually aren't enough dishes in our cupboard to make that happen and guarantee the rest of us can eat too. Somebody brought us paper plates at one point, and they kept coming. I'm not sure who those geniuses are, but paper plates = love

3) When people bring food in disposable containers. Again - I hate not reusing things, but dishes are the last thing to get done each night (about 11, when I'm done titrating meds), it's extra hard to try to remember whose they are and get them back. I'm sorry if we lost something of yours - really really sorry. Also - we love the food bringers - LOVE them. Feeding and caring for someone as often as we do, doesn't leave a lot of time, and it is a tremendous help to us.

4) Time - people who give their time. For the most part, we don't need any stuff - but we do need time. It's the one thing we'll never have enough of. When our kids' friends reach out to invite them on an outing, or come hang out for pizza and a movie in our basement, or just stop by for a walk - it's the perfect "I love you".

5) The people who say "I'm here". We don't know what we need half the time and when we do figure it out it's usually pretty last minute. Knowing who we can call when we really need to helps a lot.

6) The charcuterie board - cheese and crackers, olives, nuts. We only got one, but when we did, it was incredible. Don't get us wrong - we love the sweet stuff (especially Rico), but when you're coasting on 4 hours of sleep a night, you'll grab whatever is on the counter and call it lunch, or breakfast or whatever you need to. The day of the charcuterie board felt like our insulin could actually get the job done.

7) Rides for Neeks. The big kids are home, but one has an inconsistent schedule and the other is working two jobs, so getting her to and from various places can be tricky, because Rico can never be left alone for longer than three minutes.

8) The love. There is so much love. So much. You all continue to show it in the most beautiful of ways - scheduling phone calls; playing music for him; notes on the blog and facebook; stopping to visit. We are so lucky to have you all - please know that our list isn't a critique, just things to help us remember what's been extra helpful. Lots of love from all of us.