12/16/18 Day +229 Prepping for Reese’s Move to the Family House

Four days and counting…
Today I spent the morning moving Reese’s things to the Family House. I had to catch my breath many times, the idea of (a little bit of) normalcy is overwhelming. I hung my clothes in a CLOSET, with hangers. I will be wearing a shirt that isn’t wrinkled for the first time in 8 months! And I loved seeing Reese’s things next to Quinn’s again.

Yesterday, we walked to the playroom together. Chris, Quinn, Reese, Claire and I all ended up holding hands. After Claire burst out in song, belting out “We are Family” (…I got all my sister’s with me) Quinn said, “This is how it should be. Everyone in my family, together.” It was one of those moments.

So what happens after December 20?
Reese will move into the Family House with Chris, Quinn, Claire, and me. We have two rooms (one full bed and two twin beds) with a hallway inbetween. Reese, Quinn and Claire will share the room with the two twin beds. Claire is still in a pack and play, which is interesting because she could literally just step right out of it. But she chooses not to. I thought we had her fooled that it was normal for a 2 1/2 year old to sleep in a pack and play… until she told me otherwise yesterday (I’m not sure who told her, I’m still investigating.) Regardless, all of the beds are taken, so we are hoping she continues to stay put until we get home to a new big girl bed. Having all three girls together is a huge blessing, one that I don’t take for granted.
So what happens to my parents?
My parents have been living at the Family House all of these months. Yes, in about 400 sqft with Chris, Quinn and Claire. Chris has been sleeping in “Reese’s bed” with Quinn and Claire, and my parents in the “other room”. You do what you gotta do, we all made it happen.

My parents are of course staying on to help my family through this transition. They are retired and could be spending their months socializing, traveling, and enjoying… all of the stuff retired people enjoy. They have taught me through example what matters and where priorities lie… and theirs lie here, with Reese, me, and my family. God really gave me a gift when he gave me these parents, I continue to be blessed and so are my kids. So, they continue to be in it for the long haul, as long as they are needed, thank goodness. Reese will still be putting in long days at the hospital, she is scheduled to be in clinic three days a week, and my husband of course works. We outgrow our space at the Family House the minute Reese is discharged from the hospital, and another room is not an option. When I realized this was coming I started my search for housing for my parents. As you know, we rented an apartment for them in the city the months of June and July (when we expected Reese to be discharged and living at the Family House. When this didn’t happen, they moved in.) While the Family House is the right place for Reese, with it’s HEPA filters, brand new construction, and close proximity to the hospital (it’s literally on campus) there is an outdoor problem. The greatest risk to Reese upon discharge is mold. The same stuff that is in the air that you and I breathe in every day is dangerous for a kid without a functioning immune system. This is far more dangerous that catching the common cold. Mission Bay, which is where UCSF Benioff is located, is all under construction. Machines digging into the ground, kicking up mold, are the absolute most problematic, and they are everywhere. So, we know that if we want Reese to “breathe fresh air” and feel the sun on her face, we have to get out of the city. So, when we found out we had to look for additional housing, we centered our search south… outside the city air AND outside the construction air. We want Reese to have a safe place to go during the day, when she is not at clinic. We all know how God works, sending little gifts scattered throughout our neediest moments. Well, a friend, Ceylan, reached out to me. I haven’t seen her in years, our kids had music class together. She told me she knows people in San Francisco, and asked if she could help. Her dear friends are lending us their house in Portola Valley while they are in Chicago for the holidays. The genuine thoughtfulness of a friend and generosity of a stranger. This gave us the time to get my parents into the next rental, in Daly City, from Jan 5-31. I found this through airbnb and it’s outside the construction and close enough that my parents can zip back and forth. And, the Anthony Rizzo Foundation paid for this month long rental. Anthony Rizzo (the first baseman for the Chicago Cubs) beat childhood cancer and he fundraises and helps little kids fight their battles, too. And that’s how God and genuinely good people helped us have housing in SF through January. We aren’t sure what happens after January, the next six weeks will be very telling. We pray that as the tapers of immunosuppressants begin, Reese’s body stays strong and does not flare. Every good week is a week closer to flying home to Chicago.
Gaga (Chris’ mom, Jeanette) is here again helping us this week and my parents fly back on the 19th… ALL of Team Reese, the San Francisco edition, will be present for the bell ringing ceremony. Every single one of us deserves to hear that bell loud and clear. What a day it will be!

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