HuCART Day -33: Plans for Philly

We got our dates for Philly. 

Yesterday I was driving, mind wandering, thinking, “Crazy to think that everything will turn on a dime when that call comes in.” And then two hours later, that call came in. Cells are in production, transfusion slots secured. Last two weeks of August, all of September. When the nurse calls to detail the calendar it feels so normal. 

August 17th, start 4 day lympho-depleting chemo- check.

August 20- ECHO and MRI- check. 

August 23rd- Bone Marrow Biopsy and Lumber Puncture- check. 

August 24th- transfusion- check. 

Sept. 21- Day 28 Bone Marrow Biopsy and Lumber Puncture- check.

Sept. 28th- Report of Findings- check

“Sounds great.” I concluded once the nurse had finished rattling off the list of events. “Well, not great, but you know.”

Lord, help me. Into the thick of it.

We are a forgetful lot so obviously my first reaction was to hang-up the phone and think, “Ok, game on. Let’s do this!” and launch quickly into all the planning, prepping, and organizing of the chaos. Making calm out of chaos is my happy place, and by happy place, I mean to say that it’s what I do when I am stressed AF. But it doesn’t feel like stress at first, it feels like super powered extreme heroism. Like the high that comes with being in the place you know all too well. The feeling doesn’t last long. 

Within hours (minutes?) I was beginning to feel the full weight of the details. The departure date is  also the day our summer nanny leaves to return to college. It’s two weeks before Selah’s school starts which means that we have to secure full-time care for her. The day we leave is, naturally, Jude’s first day of second grade. Which from a logistics standpoint is great because he will be occupied from 9-3:30pm on the daily. But also means that he will go from monotonous, at-home summer, to new classroom, new school year transitions, in a time of already *great* flux. For my mama heart, this does not feel like the ideal time to be away from him. 

Which begs me to consider, when is the best time to be away? Oh right. There isn’t one.

We have been working to secure an AuPair since May. Thanks to my friend Kelly who read my post about child care earlier this summer and reminded me that now would be the time for the Au Pair system to fall in to place. However, with the current COVID situation, and more specifically the Delta variant, the procurement of a visa for said Au Pair is proving quite difficult. The government does extend special circumstance visas, but we were denied for that, despite everyone at the Au Pair agency saying that our case was a shoe-in for the exception.  If I could just get our story in front of the consulate issuing this specific visa, I am just sure that I could plead our case to fruition. Alas, we have an Au Pair (Hi, Leonie!) and she is currently not permitted into the US.  There are whispers that the European travel ban is going to be lifted, though the timeline is very unclear.

An Au Pair really would be a good solution to this childcare/stability debacle, however brining on an Au Pair right before leaving for 6-weeks also does not feel ideal. Hang on kids, everything is in flux.

It’s easy to really spin-out on how complicated this all is. And trust me, I am damn good at it. Perhaps better than I am at coordinating things. But I must pull myself out of that uncontrolled spin and remind myself of all that is well and good. 

And so I shall make a list: 

1.) Beau will miss the first 6 weeks of 4th grade. I guess if I am not Susie Sunshine, this is actually a mixed bag, but I think it is a bit easier than being there for 1 week, then leaving for 6. He won’t have a school routine to adjust to, then fall away from. We will enjoy the time in Philly, then he will start 4th grade in October. 

2.) We signed up for little league in a suburb outside of Philly because when in Rome…. This spring our honorary adoption onto a local little league team kept all of our spirits high, and so we figured properly signing-up would be the perfect way to head in to this trip.

3.) Um, well. I was sure that once I started typing this out, more things would come to me, but I have been sitting here staring at the sun rising and there is nothing else just now. Which isn’t to say that there is nothing else positive about this, it’s just to say that the stress is blocking out the other things. 

I am going on a walk. I have gotten back in to the habit of walking at sunrise for an hour each morning, something that I was wholly committed to this winter after relapse, but slipped away during and after spring in Philly. But I am back at it and it’s becoming my favorite part of the day.

I am feeling the pull to not publish this post. To re-work it, add to it, edit it, and, and, and. But really it’s just my stress telling me to control the things I can control. To perfectly edit and produce a blog post because I can’t perfectly edit and produce my life. So in the greatest act of rebellion, or really just a small act of release, I am publishing anyway. 

Take that perfectionism. Take that. 

5 thoughts on “HuCART Day -33: Plans for Philly”

  1. You guys are in my prayers. Having faith that He will be there must be so hard with all you guys have had to experience, but truly allow your faith to be strong and go to Him often! Love and hugs to all.

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  2. thank you for your beautiful act of rebellion/release..one of many for today, I hope. I am so thankful to hear your mama’s heart this morning and what is swirling inside. it makes my heart and mind ache and swirl for you. imagining you on your morning walk. with so much love.

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  3. Perfectionism is highly overrated! Reality is genuine, most beautiful. Huge hugs to you all, always, Bets

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  4. Praying for Leonie to get pushed through! (but why can’t Jude just live with us- oh right his dad and sister want to see him).
    Praying for you! Love you and all that you are holding right now.

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