Read Part One here.
Feeling pretty damn proud of myself right about now. Why, you ask. Oh, well I just stopped my freefall down the black hole of despair. Clawed my way right out. Closed the tab and opened a new one.
You see, yesterday I wrote about Selah visiting the hospital and I was like, ‘Oh, I can link this back to my post about Jude at CHOP.’ But when I went to look for said post, there wasn’t one. I hadn’t written it. Well, not on the blog anyway. It was drafted, start to finish, in my head. There are so many drafts up there. But, gosh, I was sure this one had made it to the page… The one where I told the story of him coming along to Philly and him seeing the inside of the Burger building and him, finally, getting fro yo from the robot. I wrote about it, didn’t I?
But it turns out, I hadn’t. So I began a post this morning. A post that would take us back to how much has changed for Jude man, how hard it was to go from having a best brother, partner in crime, to a sick brother, who is always getting more attention and more screen time. I would start from the beginning of course. And so I did, or I tried to, but I have been sitting here writing for 30 minutes and looking at pictures like these and have decided I can’t go on.
I sent this sweet picture to Joshua who was staying at the hospital with Beaudin as a “goodnight!” selfie I guess you could say. We were 2 weeks in to diagnosis and splitting time living at the hospital and caring for our other two children at home. It was impossible on every front.
I am trying to just get to the full story and all I can think about is how grateful I am that Jude slept in bed with whichever parent was home from the hospital. It seems simple, but at the time I remember us worrying that it would disrupt his normal. We were grasping at straws and so ‘keeping his routine’ aka keeping him in his bed, felt like a worthy cause. But his bed was a bunk and the bottom bunk was empty because everything had been turned upside down. So we “caved” and cuddled him every single night and routines were ruined, and I got half the sleep I needed.
And it’s the only way we could have made it through, together.
I can’t look at the pictures from this time without feelings of despair closing around me.
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This morning I worked to tell the story, to explain Jude’s 5th birthday celebrated in a hospital cafeteria, but when I got to the part where Jude stood out front of Children’s Hospital on the sidewalk and looked up to find Beau sitting at the window of his hospital room, the words stopped flowing and all I could think about was the slurry mix of pain and joy I had in that moment. When I saw Beau and Jude finally find each other, Beau smiled for the first time in days and I thought, ‘Maybe this will help him to not die,’ and then Jude proceeded to breakdance on the sidewalk, 8 stories below, and through hot tears I thought, ‘What the actual fuck is happening?’
Someday I will work through all that it means to have parented through this impossible season, but it can’t be today.
Yesterday I mentioned that Selah may well the be the most adjusted because she doesn’t recall life before cancer. Jude is the juxtapose. So much for him shifted at diagnosis, and in the time since. There are pages and pages to write about that, but I can see it’s not for this morning.
So I clawed my way back out, poured another cup of coffee and said, “Not today!” Sometimes healing isn’t about not feeling the PTSD swirl, it’s just about having a little dribble of will power that has you not go down that path.
This morning I just want to tell you about Jude finally getting his fro yo.
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I mentioned how pumped Jude was to attend the Believe Ball. He loves a good party, a fancy outfit, and any reason to dance. He also loves screen time and knows good and well that trips to Philadelphia include plenty of it. He would never admit it out right, but he also loves being included and that perhaps has been the hardest part of the last four years. He is a ride or die type and he wants to be there for it alllllll. Being left behind has been his greatest struggle.
And so, when we found out about the Believe Ball, I felt like it would be as much for him as it would be for Beaudin. He bounced through the airport, steps ahead of everyone. He told multiple people we were going to a “big party”. He watched everything with big, open eyes.
Upon arriving in Philly, Beaudin had to attend an appoint for a neurocognitive study that he is participating in alongside CAR T treatment. Basically, they want to make sure that this new science doesn’t have short or long-term cognitive side effects. So we headed to the Burger center to drop him off for that.
I laugh looking at the pictures because Jude is literally one step ahead of Beau the whole time. A picture is worth a thousand words, is it not?
Beau showed Jude how to work the video games in the waiting room:
And Jude asked Beaudin about the picture collage that Beaudin has never taken notice of before. Joshua and I checked Beau in for his appointment as he and Jude investigated each tiny photograph.
Once Beaudin was at his appointment, Jude met Beaudin’s favorite nurse, Preetha. She did exactly what I hoped she would do, being “SO excited to finally meet you, Jude”, whom she had “heard so much about!” We love her and though in the moment Jude acted super chill, he later on told and then re-told Beau that Preetha knew him.
Jude and I walked from the Burger Center, over the glass bridge, to the main hospital to explore the atrium and, most importantly, to find the fro yo robot. He didn’t say much. He was taking it all in.
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The weekend was exactly what everyone needed, but I really think most of all, Jude was the winner. He was so happy to be included, and so proud to be Beau’s brother. A lot of things came together for him. It’s been a hard couple of years, that we will be unwinding (with the help of therapy) for ages, but above all the hard, I am thankful.
The only way we could have made it through is together.
The Heavy Wait 
Together. yes. You all.♥️
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