Leaving Home, Coming Home

"Home is anywhere outside of the hospital." (Nadine)

Thursday July 9th was the day we left MacDonald House. It was a roller-coaster of a day, from awful to exuberant all in one.

On Wednesday I had announced we were checking out on Thursday. The house was full and the clot was dealt with -- it was time for someone else to have the room, and for us to "leave the nest". The house manager booked our room for another family to arrive Thursday night.

There were bittersweet farewells and final meetings-up with people, and exchanges of contact info. Perhaps I hadn't realized how many friends we had made. I also ran into the finance director, an appealing lady who looked like a recreation leader -- we had a lovely interaction. There were many more people. I'd been in conversations with many of them where we'd affirmed together our absolute need to support our children no matter how strident we appeared. And shared stories of our children (and selves).

Nadine, unfortunately, was feeling pretty sick on Thursday, bad timing as we couldn't stay an extra day. She lay on the bed feeling miserable, and I felt miserable too.

Packing/departing has never been my talent -- now I was faced with an all-too-familiar nasty scramble, including the unpleasant results of poor pre-planning, Although I thought we hadn't brought much, I realized we'd indeed "moved in". I had to sort, box stuff, find papers, the works, plus doing laundry. After that I had to clean the room. All with poor Nadine lying on the bed feeling miserable while I scurried around.

Nadine was scheduled to go to the lab for another "timed" blood level test at 1:45, and I'd hoped to be completely packed and checked out by then; Nadine insisted I couldn't do it, and that we'd need to come back later to finish. I doggedly tried to get us out anyway. It was hard to see her in pain during all of the commotion.

Suddenly, she stood up and burst into tears. I held her as it all came out -- it was the first time she'd sobbed with me like this since her diagnosis. In the midst of the pain, I was relieved that finally she was letting it out.

I wondered if one reason these emotions didn't show up like this in the hospital was because the hospital was known as the place to be sick. MacDonald House was like a half-way station. Once out of the hospital (or MacDonald House) she might have felt that now she was supposed to be "normal", only she still had leukemia and she still was sick, even though she'd be out in the "normal" world. She might have even said she was afraid this could be a problem. She developed a nosebleed and I held her head while she stood over the sink; it ended before there could be worry.

I asked Nadine if she wanted to postpone the lab work until the next day, and she emphatically said yes. I called the clinic to ask, but the nurse called back saying that Dr. Bruckner wanted the results immediately, so we raced out of the house, clearly nowhere near ready to check out. We rushed into the lab, where I had to apologize for my lateness and tell the receptionist that Nadine had a timed test that had to happen right then. Less than 5 minutes later an expert and gentle tech did a painless job drawing Nadine's blood, and it was all over.

After that, Nadine had a WONDERFUL experience with a rehearsal of musicians performing her string trio, and came out of her sick feeling -- after that, things went well. I'll describe this magnificent experience in the next post.

After that, we returned to the house, and I finished packing and cleaned the room -- I realized that there had been no way to get out early. I vacuumed the floor, cleaned the bathroom, straightened up. Nadine insisted on helping with the vacuuming. I took some pictures (of course). The room had been "home-like". The wall paper trim near the ceiling had pictures of musical instruments including flute, piano, guitar, cello, etc., as if it had been designed just for us. The bay window drenched the room with sun.

I hauled out several loads of stuff, emptied the room, went downstairs, and told the receptionist the room was ready to be prepared for the incoming family.

Then I gathered up our food supplies from the kitchen and pantry, brought up the laundry, and packed the car. I sat down at the piano and played the Bach gigue for a final time. Sharon was downstairs and I got a photo taken with her. The executive director of the house warmly told me I was welcome to come back and visit.

I asked someone to take a photo of me and Nadine, and got one sitting by the Ronald MacDonald figure on the porch and another with some greenery.

We were allowed to keep our parking "pass" sticker, and were told we are always welcome to come back. We'll always be able to walk in the garden and visit the House, and of course to stay there if needed.

Finally we left to stay with our dear friends the Klassens in Webster. After the freeway drive, we arrived to a wonderful welcome. Hugs. Joy. Nadine finally with her friend Sylvia. Me being with my friend Sue, Sylvia's mother.

The end of an era. The beginning of another one.