How do I start to write about my 4 year old whom passed away? It’s still not something I can come to terms with, and it may never be. He is my rainbow baby. I was told I wouldn’t be able to get pregnant, and yet, he came into my life with a force so extraordinary and remained a beautiful, vibrant, sassy light for all to witness until my twisted nightmare came true. It’s not a reality. It’s not MY reality. I live in between autopilot and a fantasy world.
December 6, 2017 my sweet Johbis had a seizure and was rushed to the Hershey Children’s hospital. He was diagnosed with an AVM, and after extensive testing and a three day admission, we were told there were possibly two AVMs taking up the entire left side of his brain. We were told the AVMs were large and spread out enough that they may not be harmful, as the blood would have more room to flow properly. We were told he could go on his entire life with just a seizure disorder, he was put on Keppra, I was given a protocol for when it could happen again, and we were sent home…feeling a little lost, yet hopeful.
Christmas and New Years comes and goes. He’s as happy as can be. Normal, playing, joking, dancing, growing, stretching, running, loving. The morning of March 6, 2018 my whole life, as I knew it, was thrown away and a new torture began. My Johbis woke at 7am complaining of a headache. I just remember grabbing the children’s Tylenol from the bedside table thinking, “this will help and take his headache away”. I was so wrong. Before I got the chance to measure it out, he started screaming and smacking his head yelling, “Mama, it hurts! It hurts!” As soon as I swept him up in my arms, he started seizing. I quickly took him downstairs to follow the protocol and admit the suppository. Waited. Another fail. Called 911. Was rushed to Reading Hospital where he kept seizing. They weren’t going to do a CAT scan, but then changed their minds. They take him, 30 minutes later a swarm of doctors (at least 6 of them) came flooding into our room bringing Johbis with. The only words I heard were “brain bleed”, “med vac”, and “emergency brain surgery”. After that, my life became robotic. Everything went numb. I had no idea what was up or down. He and I stayed in CHOP for 10 days. Waiting. That was our home. They performed the emergency brain surgery that day with no success. We were told a million different things during those 10 days. His brain lost more and more function as each day passed. They couldn’t control the swelling or the bleeding. He was on life support and there was no reversing it. The waiting was no longer waiting, but now a decision. A decision no parent should ever have to make. I can’t stop crying…now, then. Ever.
March 15th, 2018 my heart was ripped out, and I will never be the same, but I live on for him.
I started something to keep his memory alive, because my worst fear is that he’ll be forgotten. One dark day, I was crying in my living room looking at all of his toys lying around. I thought about hiding them in nearby parks for other kids to play with. What kid wouldn’t want to find a free toy? I couldn’t stand the idea of his toys being taken to Good Will and just sitting in a warehouse not getting played with. Ran the idea by my friend and we brainstormed to add a tag to the toy representing what it stood for. We started making tags and hiding toys. Word got around quickly, and now toys are being hidden for Johbis all over the world! All 50 states and over two dozen countries from Mexico to France, from Spain to Japan, and it won’t stop. I’ve been mailing out tags by the thousands.
I will use every last breath to speak his name. Johbis Caleb Keita. Much love to you all🧡🦖