Daily Dose: March 16, 2021

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In January the boys started attending a local public school. I keep meaning to write on that, update the masses about our pivot from homeschool to public school, but haven’t yet. So I will dive right in here to detail how well things are going. Both boys have teachers that are saints. Jude’s teacher actually taught at our previous private school many years ago, so we had that talking point. It also meant she had a similar belief system to us, which isn’t discussed much in a public school setting, but is a nice undertone. And frankly, if I have learned anything leaving a Christian private school behind, doesn’t really matter, but either way, knowing we have that small thread in common feels comforting. Beaudin’s teacher could not be a better fit. She experienced her own diagnosis and treatment of cancer a couple of years ago and is so tender for Beau in this season. We got lucky.

I spoke with Beaudin’s teacher yesterday to confirm all the work he would need to complete remotely while in Philly. She gave me the overview of some assignments, straightforward, simple. She was sure to reiterate that her hope, above all, is that Beaudin feels supported, encourage, and connected to his class. She told me about a penpal idea she came-up with where students will send snail mail to Beau each week. Another idea to have Beau zoom call on occasion during the lunch hour where she’d host a couple of his buddies for lunch in her class so they could “be” with Beau, and another idea of tasking Beau with documenting his trip via photos on the class blog so that students could comment and engage with him there. She gave a handful more suggestions that showed that her heart inside this, was for Beau’s heart not his brain. I was struck by how insistent she was that even “if [Beaudin] didn’t learn a single additional fact for the rest of the school year, the condition of his psyche was the most important.” That all to say, she also told me that he is at grade-level, inquisitive, participates, and is capable of learning all the things he needs to, remotely. So it’s not that his learning isn’t on her mind, it’s that it’s not her priority.

I felt so supported getting off the call with her. One of the benefits I uncovered after starting homeschooling back in 2019, was that I could spend more time and give more attention to the boys emotional understanding of life and all that our family was walking through. It was a concern I had entering a public school- would we be able to care for their emotions while also falling into a standardized model. I have been overwhelmingly surprised, yes!

Jude’s teacher is her own kind of special. She is so loving and welcoming of Jude. To the point that Jude is eager to attend the optional Friday class time each week. This, from a kid who doesn’t love school. She is also very available via email and text which feels like such a normal way to operate with someone who spends more time with your child than you do. Especially going from homeschooling to public school, 24/7 time with Jude, to sending him off for 6 hours a day. Don’t get me wrong, it is a *welcome* break, and it’s nice to get a text from his teacher ensuring that despite a teary drop-off Jude is doing just fine with a sweet picture attached of him eating snack with his new best friend.

Jude is a tender little spirit bound up in a fiery ball of flames. He just wants to get it right and doesn’t really trust anyone who is going to highlight how he has missed the mark. It’s something we work on a lot because we want him to learn that there is no shame in correction, however the Christian private school environment leading with obedience as the first entry point never settled well with Jude.

Gah! I could write so much more about that, but it’s all to say that his teacher this year is a welcome reprieve, a healing balm for Jude’s tender heart. She sees his fiery spirit and meets him where he is at. She is loud, silly, engaging, and flexible. And, well, Jude is thriving. That’s the only take away that matters. That, and that I think we dodged a bullet by pulling him from our last school. It’s so much easier to see with hindsight all the fire inside him that would have been snuffed.

This wasn’t meant to be a schooling update. Here we are.

Selah is counting down the days for her stay at grandma and grandpa’s (where she will be while the boys, Joshua, and I get settled in Philladelphia.) We have keep a lot of things high level for her so I am not sure how much of it she is making sense of. She knows that Beau is going to a doctor and she will go to grandma and grandpa’s and then come home and that’s about where the logic ends. I told her last night that daddy and Jude would come back first, but then a lot of sleeps later Mommy and Beau would return. She looked at me with light behind her eyes and sang, “Yup, because ‘grown-ups come back!” (Reference to a kids tv show that teaches lessons via song) so proud of herself for applying the song in the right context. So comforted. PBSKids, you the bomb.

Last week she told me, somewhat out of no where, “Mommy, I will miss you. And I’m brave and I’m going to sleep with grandma and play with her toys.”

I love her.

This is a picture of her all packed-up for grandma and grandpa’s the morning after I told her about visiting. She came downstairs after waking-up, with her ‘pack-pack’ full of tchotckes and was shook when I laid out for her that she wouldn’t be going for 3 more weeks. Lots of tears followed. We made a calendar to help us count-down and still she brings down her pack-pack every morning and ask, “Today is for grandma’s?”

Thinking about how much of this to explain to her got me reflecting on how normal it is for her to hear things like, “Beau has to go to the hospital.” It’s still funny to me. Prior to January 2019, my children had seen a doctor one time. Once. For a mandatory school physical. They had never been to a hospital, never had a shot, never taken medicine, nada. Now I be like, “Hey Selah, don’t touch that! It’s Beau’s chemo and it’ll hurt you and oh, hey, Beau and I are flying to Philly for 7 weeks for a medical trial. Peace!” Selah has lived more of her life with Beau having cancer, than the before life we lived. Sometimes it’s just funny to think of her “normal.” While I continue, two years later, to kick and scream that this is our life, sweet Selah baby just chugs along wishing she could get in on that doctor action.

Anyhow.

I have most of the home coordination set and ready. Many a lists made for our nanny, who thank God, is able to help us full-time through May. Our home is as ready as it will ever be to operate without me. Now I just need to pack- which I have been putting off.

We are eager to get to Philly, but I would be remiss to leave out that this side of forever feels a bit safer. Who know’s what CarT will give us, remission? relapse? Unforeseen side effects? We are putting on foot in front of the other either way, into the unknown!

Oh, another thing, a new friend who is in the same CHOP CarT trial, but got her new cells in January, is back in Philadelphia for more treatment. They were in Philly for their 6-week stay when we went to out for our consult in February. We were able to hang out with them for an afternoon, Beau and their daughter playing pool and shuffle board, and me and the mom and dad comparing stories. Her and Beau have a *very * similar path to CarT. It was so nice to meet them and have them as our “what’s ahead” lighthouse. A couple weeks ago, they got word that the CarT wasn’t working for her. They are returning to Philly for more treatment. The family will be in the same apartment building as us, which is really nice from a fellowship perspective, but the whole thing is not ideal.

The news of this left me crying in the car the other day. All of this is hard. So much is unknown about CarT, so her needing a bit more treatment isn’t considered a “failure” per say, but you can imagine that after 6 weeks in Philly for the trial, to have to go back, unexpectedly, for more is complicated in a million ways. It doesn’t mean anything for our treatment, but it’s hard not to draw conclusions.

If you are the praying sort, would you pray for her and her family. That this additional treatment is exactly what her body needs to leave cancer in the dust?

Thanks friends. More to come, next time from Philadelphia!

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