By Jacob Brody
this is written yesterday but didn’t have time to post.
Everyone, rightfully so, wants to know how Jacob is doing.
In the past couple days he has gone “under” 3x, had a blood transfusion, had pieces of bone and it’s marrow along with a sample of his tumor surgically removed and has had scary test after scary test.
And we haven’t even started.
So how is Jacob?!!
He is telling jokes, drawing pictures, writing books/poems, building Legos (Sometimes with one hand and now we’re challenging him with his eyes closed!), watching movies, and on the flip side quiet
Introspective and quiet.
But I’ll let Jacob tell you himself. I asked him what he liked about the hospital. Below is the list.
1. There is no bedtime. “You can stay up as long as you want and sleep as late as you want. That’s what Mom says.”
2. My”quackmobile” many of of you may not be aware that Jacob is half duck. My child is so talented that he speaks three languages (English, Spanish and quack). He and his friend Dalton from school speak in duck. And duck has come in handy. Turns out that is also his scared language. When doctors come in that he doesn’t know, he quacks at them in a silly voice
His quackmobile is a red wagon. Jacob just like his father doesn’t like his feet to touch the ground. Waking to the Brody boys feels inefficient. We don’t do inefficient. His father uses his toys like electric scooters and bikes, but Jacob has his wagon.
We play Uber and we pull him along the peds floor. His favorite driver is Benno. We know this as he rates us with stars. I’m unfortunately negative stars right now. I’m working on my turns. My father was once in the lead with 100 stars, but sadly he lost them all. Geez! One bad review can really kill a career.
3. The “salmon and rice.” He just loves the hospitals salmon and rice. Go figure.
4. “Tug, but he’s dumb.” The hospital has these robots that deliver the food to the floor. We made a big deal about these when Steve was in the hospital to make the hospital less scary for then. Still a big hit and now distraction (constantly looking for distractions). Today we got to witness a robot standoff. They ran into each other paths and didn’t know how to go around each other so just beeped at each other for about an hour. That was the highlight of the day.
5. PG-13 movies. ” in the hospital mom lets me watch whatever I want. ” I’ve got bigger battles to focus on.
6. “I wear pajamas pants ALL day long.” So do I. I wear sweatpants and eat bagels all day. The idea of buttoning my own pants just sounds exhausting. I have no time for that. Sweatpants it is!
6. “Mom sleeps with me every night.” I curl up right next to him In his hospital bed all night. Ready to fight. Listening to his breathing. Any snore and I’m up. His tumor is wrapped around his aorta so I fear for this every second of every night. Sleep is not something I’ve seen in a while. Crazy because im trying to write how many days I’ve been without sleep, but I can’t figure it out. It’s like a time warp here. I just had to ask the nurse what day it was. And she told me, but by the time I walked across the room I forgot. Time warp.
7. The “office”. Jacob made a friend. He just left from his chemo round. His name is Lou. Lou has a rare brain cancer. It happened when he was 1 and he just relapsed at 5. Lou holds court here At the nurses station. He’s sadly a veteran. he has his office. He inspires us. Lou’s mom is wearing dresses and seemed to have her hair brushed. what?!! How is that even possible?! She is someone I wish I could be. But I’m going to do this my way, bagels and sweatpants ONLY.
Now the parts he hates the most.
Jacob keeps track of these things for his “trip advisor review.” He had me write them down so we don’t forget for the post.
1. The “Band-Aids” from his surgeries and port. Changing them are scary. We all have to wear masks and it hurts. “That makes me cry.”
2. “Everyone talking.” This has been hard. When the doctors come in all I want to do is hang on every word. Looking for light. Looking for a positive word. We have yet to get that. But I also have a 5 year old that wants me to color, lay with him, and play. I’m on 24/7. I’m entertaining 24/7. And this is my thing. I’ve spent my career entertaining kids. Putting on Assemblies, costumes etc. And I love that part. But this is the hardest “show” I’ve ever performed. inside I’m crying, screaming, weeping and scared.
3. The “gross stuff.” He has to drink stuff for scans.
That was his list and just like the boy he is… The positive always out weighs the negative. He gives it three stars.
My rating. Hell. This is hell. Zero stars. Negative stars. Don’t get me wrong the staff is lovely, but there is not one minute I want to be here. I feel like I’m going to vomit all day and night.
However, I don’t. Because of NIGHTWING. I’m really in awe of him. He is so brave. I would even go so far as say the bravest kid ever.
We attempted a cat scan with Benno once over back pain. And I really mean attempted because he wouldn’t even lay down. Crying, running. We tried on three separate occasions and we were prepared. We downloaded the sounds of a cat scan on his ipad, we showed him pictures prior, we practiced what it would feel like but HELL NO. He screamed and he ran.
Jacob never gets to practice and sometimes no heads up at all. Sometimes we have to move quick. He gets no preparation and due to the need of a sterile environment, he doesn’t get us. He just walks in.
He’s only five
He walks in to a room of strangers in masks and gets on a bed and goes into a tube. And then they give him directions like hold your breath. And he does. He listens. He doesn’t cry. He performs perfectly.
But He gets quiet.
Quiet like his dad. Taking it all on so others dont have to. The world gets scary and he gets quiet. He hands over his arm to get punctured. He may say “I’m scared” or ask if it “will hurt,” but does as he is told. Giving you access to his body. he may cry at the pain, but he allows it. I see children being held down for tests but he holds me down. He holds me down that’s for sure.
He also hold me up.
Shouldn’t it be the other way around?