Goodbye Visiting Nurses

Zoe's dear friends - the visiting nurses who have loved, nurtured and ministered to her since she's been home - had to say good bye to Zoe yesterday.

When we were told the visiting nurses were going to come every month, Jen and I both thought it was a ridiculous proposal. Our child was going to die, and there was no stopping it, and we didn't want a nurse to come and "help."

Then, the nurses visited and it was really a troupe of professionals sighing deeply and looking somber and asking us gingerly if they could hold Zoe.

We cancelled.

Children's Hospital Wisconsin got a hold of us and told us that we needed the visiting nurses. If Zoe died while at home, the visiting nurses were needed to verify that her death was due to Trisomy for the police.

So we invited them back in, but this time they brought a whole new crew of people who were exceptionally nice and not the least bit somber. They befriended Ethan and Aidan, and Jen really looked forward to their visits.

When we moved, we switched counties, but the visiting nurses continued to visit. They brought gifts for the boys, and gave Zoe a wonderful 1st Birthday present.

Yesterday, they told us that it was their last visit. They said insurance kept asking what, exactly, they were visiting for. They said that initial conference calls with Children's seemed to be filled with some dread about how Zoe's condition would change, which morphed into mild conversations about Zoe's status.

Even while there are things that have us concerned, by most measures, Zoe's doing just fine. And the thing about the police? The nurses had never heard that one. They said that was never a reason they were necessary.

We were blessed to have them visit and happy to have them around. Zoe and we thank them.

Sunday Visitors

Heidi and Phil came to church and then spent a sunny Sunday at the Lakehouse. It was wonderful to see my big brother and sister.

Phil and I took the canoe out to tour the lake. As we made it around the bend in the middle of the lake, my paddle snapped in half. So using my splintered paddle, into the wind, we gunned it back to shore. I'm familiar with paddling with something less than a full-sized paddle. Splintered, even.

Normal Saturday

28 days sounds a whole lot like a month. I think the biggest gift I received was yesterday when we were talking about going to a party for friend and cinematographer Michael Patterson. Jen said she was looking forward to going if she could, to which I responded...why couldn't we?

On day 27, I got the gift of normal. God and Zoe and all your prayers have combined to give me a few moments of not considering what the wrong third chromosome can do. She was just one of the kids who'd need a sitter.

So, like usual, it's Zoe who's giving the gifts. Even today, on her birthday.

Today we're expecting Jen's sister Tracey and another gift - a photographer who will come and take pictures of us. Wow.

Kirin Visits

Zoe's Godmother Kirin visited today. She's been trying for a number of days to get out, so it was special to spend some minutes together.

Kirin also shared the power of encouragement. She played a very encouraging message she received on her phone. "Hey Kirin," the voice said, "How ya doing? Hold it together...you can do a good job today,k? Ok, take care...bye."

"Kirin," I said, "that's your voice."

"I know!" she responded, "no one ever calls me to do that so I did it myself! And now I have to keep resaving it or I'll lose it!"

It should not be surprising, then, that Kirin wore some curtains during her visit.

Visitors Today!

Sister Martina hopes to roll in today, along with Kirin and Charis (again) (she noted that this fine blog did not mention her visit last week.)

Our friend Michael Patterson, a gifted film artist, is coming by today to get some footage of our three week old.