HuCART Day +20: Mini golf and school.

As mentioned in our last update, things were pretty hard for a hot minute. The trauma of it all is not helped by siblings being worried about their brother, and their brother crying for them to “go away” every time they come near. After returning from the hospital Beaudin continued to improve, but wanted things dark and quiet. Selah and Jude, obviously, couldn’t commit to those demands and as such there was a lot of messy infighting.

We did our best to keep Selah and Jude out of the house as much as possible. Splash pads, mini golf, and arcades sprinkled our days.

Once Beaudin’s recovery was clearly on the upswing we decided that it would be best for me to travel home with Jude and Selah. While they were enjoying the daily carousel of activities, it was wearing on us all. There is only so much mini golf one can do in a hot and humid city. And there was very little opportunity for free play, and well ladies and gentleman, turns out I am a very short tempered cruise director. We were all craving a routine and by craving, I mean, melting down, bickering, and bouncing off the walls without end. That’s all fun and games, but in a small apartment in a hot and humid city, with a sick brother, it takes on a new level of cabin fever.

So me and the littles flew home. They both started school last week. It has been a beautiful re-entry back in to “normal” life. They both love their schools: Jude at the local public school and Selah at the Waldorf preschool next door. (Literally, in-home, next door. SUCH A GIFT!)

In the silence of a kid-free house lots of big feels come up for me. The other day while driving alone I had a momentary thought, “…Beau… relapsed…? There is NO WAY!” 306 days later and sometimes it still hits like it’s brand new. The past 3 weeks of HuCarT have been hard, the last 1,000 days of Leukemia have been hard. Society as a whole is dealing with COVID is hard, and our family weaves in to that constant unknown the swirly mess of childhood cancer. It’s just a lot.

So I have been feeling the feels and staring the stares and enjoying this small slice of a modified normal. When Beaudin comes home we are not sure what school will look like for him, or Jude. Depending on his counts he may not be able to attend, and depending on COVID levels and Beaudin’s susceptibility, we will have to cost/benefit Jude’s attendance. It’s hard to stay in the moment of thankfulness now, when I consider that in 10 days we could be back to homeschooling square one. But I am doing my best, taking each day as a gift that everyone is healthy and accounted for.

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Beau continues to do well. He is spending his days in Philly with the nanny who we found out there (more on her later, bc she is amazing and the story of how we found her is a real heart warmer.) Beaudin’s medical team agreed that we can leave to return home the day of his bone marrow biopsy and lumbar puncture on 9/22, instead of having to wait the extra week to receive the results in person. We are thankful to shave a week off the stay!

Happy Monday everyone. If you need me, I will be laying on the couch.