The Well-Adjusted Sibling- Part 3

Read Part One here, and then Part Two.

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Her eyes were wide as dinner plates when she realized what I was asking her. She was being invited to come along to Beau’s clinic visit, she was going to get to go to the hospital.

“Yes, yes I want to come,” she said and immediately ran into her daddy’s office,” DAD!!!! I am going to Beau’s doctor!”

I ping ponged back and forth between the warm fuzzies of her being there, with us, together and all that could offer by way of healing, and her being there, with us, together and all that could offer by was of stress if lab results came back off-kilter. I wanted her there, but dear God, I could not stand the thought of her being around if Beau resulted a low ANC or declining platelets.

But beyond warm fuzzies and fear of trauma, I didn’t have a childcare option so the decision was made for me. Selah would come to the hospital with us for the first time since the day of Beaudin’s diagnosis.

For the days leading up the appointment the questions came non-stop.

“Mom, do I get to see Beau’s real doctors?”

“Mom, do I get to watch Beau get his poke?”

“Mom, when will I get the Leukemia?”

It’s not the first time I have fielded the last question. Jude has asked a handful of times when it’s his turn. For Leukemia, or any other life-altering medical condition. “Remember when I was really sick as a baby?” He reminds me every once in a while as if to say, “I, too, could have been the focus.”

“Sweet girl, your body is strong and healthy, you won’t get Leukemia,” I tell her. And just like that I am swimming in thoughts of what it means to wake-up every day and lie through your teeth because I DON’T FUCKING KNOW IF CANCER IS COMING FOR YOU SELAH.

I think all the time about Beaudin, at the age that Selah is now, and wonder how we could have ever prepared for this.

In reality, we never could have, but it’s impossible not to see the same innocence in their 4 years old eyes and wonder, what’s coming for her?

Anyway, whomp, whomp. Gah.

Ok, so Selah was pumped about the hospital, I was angsty the whole day may implode, but also, more so, I was hopeful it could be a day for us to put some of the pieces back together. And it turns out, it was exactly that.

Beau’s labs came back looking great, despite having the virus in the middle of October. His system has made a full recovery and looks strong. Selah watched very closely as Beaudin had his blood poke and I kept myself from spiraling when Beaudin asked the phlebotomist if his “veins look good today?” (Because in what world is that how my 10 year old converses!!!!) We were all very brave. Selah met Beau’s doctor and his nurse and watched very closely as Dr.Maloney felt around his tummy.

After the appointment we took the elevator from floor 7 down to floor 4 because the glass elevators start at 4 and after close to 4 years, you have rituals that must be followed, glass elevators being one of them. We walked past the doll house filled with stuffed animals and checked the aquarium outside the NICU to see if they had replaced the huma huma nuka apua (they haven’t). We took the glass elevators from 4 to 3 and showed Selah the Lego replica of the hospital. Then we took the elevators down another floor to see the carousel horse. I snapped a quick picture of them, knowing I’d seen this picture before.

This morning I realized, I had indeed seen the contents of the frame, but it was seven years prior. A picture of my father in law, looking out in the same pensive way as Beau, right after we had been told that our precious niece, Alana Ann, had died. Children’s Hospital holds a lot for our nuclear family, but the truth is, before there was Beau’s leukemia, this building held the collective heart breaking of our entire extended family. We sat in almost this exact location and heaved sobs as life turned on a dime*.

My body knows, it remembered. This day wasn’t just about Selah coming to visit her brother’s doctors. It was about another family member slowly working to pick-up their shattered piece of our entire family’s heartbreak. Some day we will all be whole.

We went to the BBOY45 radio studio, another ritual, and Selah sat mesmerized as she spoke into the microphone and heard her voice featured on the in-hospital TV network. Beau had noticed that the sign for the Tween Zone said it was “Now Open!” and so he went up there to check it out. He has been waiting for that for what seems like years, but between COVID and then travel to Philly, we have never been able to go to the Tween Zone. When I went to pick him up he was living his best life, playing pool with a teen patient and watching sports center on the big screen tv. The volunteer greeted Selah and I and gushed about how happy she was to “finally” host Beau.

May I just take a moment to say that when people listen, like really listen, to your child and then apply what they hear to their communication, well, there is nothing better. She didn’t know Beau from Adam, but she had heard him say he was “finally” able to stop in, and thus she matched his excitement. Hospital volunteers continue to restore my faith in humanity. May we all learn from them.

It wouldn’t be a proper recap if I didn’t offer you some then and now photos to make your heart swirl. For context, I absolutely staged the last two pictures- in front of the marble run, and in the wagon. How far we have come. And above all, how lucky we are to be alive right now. (These are best viewed side by side on a computer, as opposed to your phone.)

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postscript

• Our sweet niece Alana Ann, died unexpectedly in July of 2014 at Children’s Hospital of Colorado. At the time, I was unsure how to write about it, wanting to honor that it was not my story to tell and also having no clue how to put to words what was, at that time, the worst season on record. I wrote a few posts about my experience of the before and after that you can read about here and here and here.

• Beaus labs are healthy and look good and the entirety of our conversation with his doctor was about watching for signs of relapse. Dr. Maloney, God bless her, shoots straight and is far from warm and fuzzy, which is what I most appreciate about her, and for fucks sake, could we just sit for a moment and be glad his labs are good!! No, no we can’t. So during the 12 minutes we spoke to her, 1 min. was to say labs look good, 1 min. was to ask Beau how he was feeling, 5 min. was to discuss that she doesn’t agree with CHOP and that we should be checking his spinal fluid with LP’s for the foreseeable future and 5 minutes was to review signs of relapse and the plan for the next month and the next quarter. The plan being: vigilance, watching for any behavior changes or concerning symptoms, and a decision on whether we should do an exploratory LP in January.

So, while you read this post and wipe away all the hot tears, please remember that while it is possible to write about the slow healing of years of trauma, you guys see “before and after” photos, and I worry I am documenting the “before we knew what was next,” chapter of this saga.

Thanks for reading, I know this is heavy as get out.

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The other posts from this series: