Even Less Sugar: The End

As I assume you will have heard by now, Ian passed away, one week ago.

I've been avoiding this post, not because I have been unable to put words together, nor because I have been too wracked with grief to journal my thoughts ... but because his last days were both pain and beauty and private. As public as I have been, via blog and Facebook, etc, there are some things that will remain small and close and intimate.

-------------- some timeline ---------------

On Wednesday, Ian still had quite a bit of fluid and an awful, drowning cough. I started to witness "seizure activity," something he'd never experienced before. The last straw was when friends moved him up in bed, and he finally got a cough out ... but it contained blood. It was clear my ability to handle this at home (read: alone, overnight) was done, and he was transported to in-patient hospice.

The nurses deemed his breath "extremely labored." It sounded like a snore ... but in double time. And loud. In the middle of the night they woke me to say he had experienced another decline. They helped move him, and I spent the rest of the night by his side. At 6:30 I realized I hadn't heard that awful noise ... I sat up a little ... and I knew. I held tight. I sang him a song. I called the nurses in and they confirmed.

It was surreal, and horrible, and beautiful, and cold and warm and sad. I didn't sob. I breathed.

------------ [private family grief stuff] ------------

.~.~.~.~.~.

---------------------- logistics ------------------------

Ian was an organ donor. I made the decision a few months ago to pursue having his brain donated to the cancer center, in hopes that someone else would soon be spared this awful disease. (Yes, Ian was on board with donation of any kind).

We had many "final arrangement" discussions, and Ian had always requested whatever was "easiest and cheapest" ... the old "pine box or ashes dump" kind of conversation. Then he would look at me and say, "of course, you're going to do what you want anyway, so ..."  Funerals are for the living, and in our case, for the children; it is for them that I make these decisions.

So now I had thirty minutes for the actual choice; send Ian's body to Pittsburgh for the autopsy, or zoom to camp and back with the kids to say goodbye again*, negating the ability to donate but affording them the opportunity to see him. If I'm doing all this for the kids, what makes the most sense?

I chose the former; I didn't want to rush their grief. "Hi, I'm here, guess what happened, pack your stuff, let's go see him" just felt wrong.

----------------- my amazing children ------------------

I had prayed and pleaded with God ("Please, God, let the kids get through two weeks of camp - to be kids, make friends, have fun, and to not associate camp with me coming early because Dad died.") I had the "gathered at bedside at home" picture. The final words thing.

And God said, "How about this? How about I have them go to camp, meet new friends, share their situation and be prayed over and loved on, still get to be kids in light of this trauma but be separated from those very last, non-Dad moments. You will bring them home and hold them close, but they will return to that fragile but deliberately constructed nest to again be loved on and prayed over by a giant group of Christian peers and counselors. And they won't associate HOME with his passing."

Ah. Right. It's the whole "My plans/your plans" thing. Noted.

So the kids came home, albeit reluctantly, that evening. We had a private viewing just for them at the funeral home the next day, and after choosing some happy Dad pictures, back to camp they went, munching snacks and grieving in little pieces but smiling as children should.

There are many things I could post about the things they said and did, but I will not out of respect. I will say this: I allowed them to grieve as they wished -- to choose what they needed to do and say and think. I honored, as much as possible, their desires both to be given space and to be held. And I assured them that all thoughts, including, "can we just get back to camp now?" are good and okay and acceptable.

---------------- prescriptives -----------------

Do NOT tell my son he's the man of the house, and to take care of mom. HE'S NINE. HE ALREADY HAS A COMPLEX ABOUT KEEPING EVERYONE HAPPY.

Do NOT tell my children how their "dad would have wanted them to" respond/live life/think of him.

Come to think of it ... just tell them you loved their dad and know that they miss him and that things are hard and it sucks.

Because it does.

----- the obit: summing up a life in several paragraphs -----

Reverend James Ian Maize

                                 *

~our last family moment~

Even Less Sugar: Creeping Up on the End

Hello, friends.

Not long ago, we officially transitioned Ian to hospice care. The nurses are lovely and available, there is minimal disruption and chaos, and we are just at home, being.

That being, however, changes slowly but significantly, by the day.

Ian no long rolls himself to sleep on his side (his preferred position). He leans a bit and is unable to correct it. He has lost most interest in food.

Yup, you read that right: Ian + Food = Not so much.

He understands everything, and his face still responds to the appropriate emotions ... albeit a much less wide smile and sharp twinkle, they're still there.

But they are fading.

His eyes don't focus as much, so he has a bit of a walleyed look. His voice is a whisper, and unless it's a common response in context ("thank you," "I love you, too," "Sure," "Nope,"), there's little chance of understanding what he's trying to say. But he doesn't try too hard anymore, either.

Last night he seemed alert but confused. As I have done MANY times before (due to his short-term memory loss), I explained the reason he lies there, unable to communicate.

"We're nearing the end, hon."

Furrowed brow: "Really?"

"Yes. The chemo drugs stopped working. The tumor is growing, and that's why you can't brain or speak and why you might be confused about things. I'm so sorry."

Tears used to fall after this conversation, but yesterday he stared, blinked heavily, and stared some more.

I told him that I had no idea what my Ian would want to be sure I knew or considered or took care of at the end, but that he didn't need to let any of those thoughts trouble him. I have people taking care of the important things, and although we are all going to be sad and angry and depressed and lonely and hurt and hollow, we're going to be okay.

"Everything that you would say to someone before you die you've said. I know you love me, and the kids, and you want what's best for us, and you're sorry to be leaving us. You don't need to say any of that - we know it. Just be at peace, tell me if you're in pain, and let us take care of you."

I've discussed funeral and burial things with the kids. They've both had their private "tell Dad everything you want him to know and would regret not having said" conversations. MY. KIDS. ARE. AMAZING.

Ezra is the sweetest, most empathetic child I have ever met. He just wants "everyone to be happy," "knows God has a plan even though it's not what we want," and "we should have a train that runs through the entire house so it can deliver stuff to us" [proceeds to detail the route, in excruciating detail, through every room in the house, while sitting with me in the dark on the porch].

Audrey had a dream that Ian passed away and "I didn't get to say stuff, so I made sure I did." She is joyful and bubbly, and clings to me just a little (not her M.O.). She is pouring on the funny and laughter (yes, I know she's overcompensating and hiding the pain) to lighten the mood and cheer me.

They are both heading to camp on Sunday. For two weeks. Two VERY uncertain weeks.

Would you please pray with me that Ian holds on until they return? I'd like them to say goodbye in his final moments. I'd love for them to not associate yearly summer camp with Mom appearing way too early, walking up to tell them the sad news, and taking them home early. And if none of that is possible, please pray I parent well and according to their needs; that I'm able to share grief and hold my babies and absorb their tears. That I can point them to Jesus, Who does not falter or fail, without "sounding like the people who are supposed to say that" (guess who?). That I continue to make wise choices for our family in light of our new reality, and that people accept those choices with grace.

This long road will soon reach a bend, but will keep meandering through forest and field.

I miss my best friend. He wanted to do this hike with me.