Pearl

Motherhood is not easy. The overwhelming challenges are an honor. Nothing easy is magnificent. They also break your heart in ineffable ways, leaving us breathless.

These are stories of a magnificent Mother named Pearl.

On May 19, 2014 Eli, Pearls youngest child, was sent to the hospital. “His eyes were glazed over, darting back and forth trying to find me in our house.”

On June 1st Eli was diagnosed with stage 4 brain cancer. On the day of diagnosis the first and only oncologist to see Eli told Pearl he only had a few months to live. Eli immediately went on chemo.

On Valentines Day, 2015 at 10:15am Eli went to Heaven.

“The week before Eli passed away I think I knew. He was more tired, slept more. One day I remember talking about Heaven with him and he said, “Mom.. Mom. No, Mom. Mom sad.” He was concerned for me. Even though he was dying he was concerned for me. I never told him he was dying. He told me he was dying.” Pearl said Eli woke up one day and said, “Mom! Mom! HOME.” To which she responded, “Baby you are home.” Looking through the window he pointed up and said, “Mom, H o m e.” Pearl asked, “You’re going home? When?”

“Soon.” He said. Two weeks later he died. “But he was so excited.”

Eli used to tell Pearl he had Angels around his bed. “He wanted to go Home. He used to tell me all the time when he was little that he wanted to go Home. I’d say, ‘You are Home honey.’ But Eli would point out the window and say, ‘No. I want to go home and back with Jesus.’ He mentioned remembered being from Heaven since he was a toddler. He’d remember the big huge man who told him he could pick his family, and he picked me.” She’d asked him if the man had wings? “No Mom. Not everyone has wings in Heaven. The really really big Angel does.” Pearl assumed this was Archangel Michael.

“Eli used to tell me all that time that Jesus would gather the kids all together and tell them stories. It used to blow my mind some of the things Eli would tell me.”

Pearl made her own version of Hallelujah for Eli that she would sing to him to have him to go sleep. Listening to Pearl was like a Heavenly symphony with those deep bellowing lungs that belted out more information in music notes than we speak in an entire lifetime. While watching a video again of this recently I noticed at one point Eli looked up and and smiled. Eli was half here and half somewhere else I think. Halfway to Heaven. He was eternally Heavenly, too Good for this world. These kids who go early are Supernovas.

When Pearl talked or sang about Heaven Eli’s eyes would go somewhere else while looking up. He was remembering. When we look up in thought it’s usually to remember. I think Pearl is absolutely right, I think Eli could remember.

When Pearl and Eli were able to return home from the hospital June 13h Eli seemed in good spirits. “When we got home I had my son. It was Eli. He was talking and laughing. He had come back home his happy self.” Then the next morning at 8:30am Eli told Pearl that he should take his medicine. Pearl did so but shortly after something went wrong. “Eli was shaking and couldn’t speak.” Pearl asked if he wanted to eat and he couldn’t get the word ‘no’ out. She asked what’s going on and Eli stuttered that he didn’t know, so she rushed Eli to the emergency room. Pearl knew her baby’s body. “I knew he was having a seizure. I told the doctor he was seizing right when we arrived in the ER.” Eli seized in the ER waiting area for 5 hours. When they took him back to a room they didn’t give him anything because they said there was no physical sign of him seizing, This is because he was seizing internally. They didn’t give him medicine until 8pm. Eli seized for 12 hours. “The entire day they did not give him meds. I begged them. They ignored me. When he woke up a few hours later I had lost my son. He had brain damage. He was gone. He wasn’t my Eli anymore. He wasn’t the same Eli going in as he was coming out.” Pearl then showed me comparison pictures of the day before the hospital vs the day after. “My son was having seizures and they wouldn’t listen to me. I know my son. I know what my son was doing I know the words he was trying to speak I KNEW WHAT WAS GOING ON WHY DIDN’T THEY LISTEN. I’ve dealt with people seizing for five years working with developmentally delayed customers. I knew exactly what he was doing. Nobody would listen to me. All day he was seizing.”

It wasn’t until they finally read Eli’s EKG scans that they realized Pearl was right. Pearl had told them this all day. They let a child sit all day long seizing because they wouldn’t listen to his own mother.

I think it’s important to mention that Pearl is Black. I think that’s very important to mention here. I think it’s important to mention how much this sort of thing happens every single day to children all over America because they’re black. How many mothers are ignored who know their sons and daughters bodies through and through, because they’re black. How many kids have to sit in waiting rooms watching people far less injured than them go back while they wait, because they’re black. I think that’s important to talk about. Because how many of us have had to wait in the ER for 5 hours while seizing? How many of us think 5 hours for a child showing significant cognitive and speech impairment with rapid eye movement is a normal time to wait? I think in this society and these institutions that depends on the demographic you ask. I know it does.

“Doctors don’t listen, and it’s really frustrating. I lost my kid that day. The Eli that I knew was gone. He went in one way and came out another because he had seized all day long.”

Eli was completely different when they came home, and it had nothing to do with the cancer. Those doctors could have saved him from brain damage that day easily. They didn’t even try.

After that doctors removed cancerous part of Eli’s brain in order to stop the seizing. When pieces of brain are removed though it’s not just cancerous off-sets, it’s the brain. The parts that are cancerous are the brain. It could be of sections responsible for walking, talking, memory, dexterity, etc. “We call them tumors but they’re sick cells, pieces of the body.”

After this surgery Eli lost a lot of his sight. He could no longer speak in full sentences, because of the parts taken out. Pearl couldn’t understand what he needed and could see his frustration. For a while Eli wouldn’t even talk, so Pearl started singing to him and he’d sing back exactly what he needed to say. “He could still sing. The part of your brain that recognizes music is different than the part removed from him, and this was how we spoke to each other then-on. It wasn’t even gradual, his speech was just gone. We would sing to each other so it was easier for him. He could piece together 3 or 4 words singing it as opposed to none trying to speak it in words. The doctors didn’t know this was a way to communicate. But I knew my child.”

Words are societal, love is innate. I think we all have trouble translating how we feel. Pearl knew to put the feelings and needs with a beat. She found a way to bridge that gap between words and heart.

Pearl recited John 3:16:

‘For God so loved the World that He gave his only begotten Son that who shall ever believe in Him will not parish but have everlasting Life’

“Eli knew that verse by heart. He couldn’t speak but he could get that whole verse out. He couldn’t tell me what he wanted for dinner, but he could sing and he could recite that verse. That was my Angel baby.” Pearl exhaled, “They made me so angry how they treated him. They really did.”

At one point during Eli’s initial treatment Pearl took an oncologist into a private room and asked off record if the chemo would really help Eli. “The doctor told me there are blockers like linebackers, and when the chemo starts coming through they’re going to say ‘no way’.” Pearl asked why they were still doing this and the doctor responded, “It’s protocol.”

His brain had gone through so much with the seizures and the chemo was hurting him badly. Pearl needed help and it had to be natural. “I asked the doctor what he thought about THC:CBD for Eli. He told me he didn’t hear me say that and then left.” Pearl began Eli on Charlottes Webb THC: CBD. It was illegal in Ohio medically at the time but when it’s your baby you do not care. You’ll do anything for your child to feel less pain and be less doped up. This did that for Eli. He was doing better, getting more words out. His cancer wasn’t metastasizing like it had been and he was able to laugh with his family and friends. He was still able to create new, happy memories instead of being solely tortured. Then 2 months later Eli was tested for THC at children’s hospital. They threatened to take Eli if within 30 days if he still tested positive for cannabis. Letting him seize all day was okay. Endless drugs that creating painful sores and internalization of fluids and bile were okay. Cannabis, a plant, could mean the removal of a mothers son with only months to live.

Pearl had no choice but to stop giving this to Eli. After that his cancer spread more rapidly. This isn’t necessarily to say that’s why, but the difference in life quality from when Eli was on this and when Pearl had to take him off was intense. If you have no comfort available to you in life you will slip away much faster. Two months before Eli died Pearl started giving him the THC:CBD again. She couldn’t stand what was happening to him. She was ready to fight for her son if they wanted and she called their bluff. The cancer had already gone rampant in his brain by this time and entire systems. She didn’t care anymore about the threats. The chemo was over and by this time she just wanted her baby out of pain. She wanted the last moments he had to be comfortable for him. They had been given just a few weeks and Pearl believes the comfort Cannabis allowed this to last longer. “ Because of that cannabis he was able to go without all the pain. I truly believe in my heart of hearts that had he stayed on the oils, who knows?” The only time Eli had a break from the pain was when he was taking cannabis.

“By the time the 35 days had come that he had to be off the Cannabis he had become a completely different kid.” When Pearl put Eli back on this it was solely for comfort. The cancer had gotten so out of hand that it was blocking the blood brain barrier and he was seizing all over again, despite the intrusive brain removal.

They put Eli on steroids perpetually throughout his short time. The steroids would make his skin very thin and ripped the most delicate parts of his skin wide open. I remember realizing the sound one day when it had happened. He was rolling over on his bed in the living room to face the wall and his underarm skin tore.. just from rolling over. Just from the steroids. His sides would rip open just from repositioning .Pearl would have to dress these wounds as best she could with what the hospital gave them. The pain was too deep and his eyes would scream for him. In other parts of his body the steroids would make him bloated, retaining so much water that the inflammation would obstruct his ability to breathe properly. Pearl finally told a young doctor that Eli wouldn’t be taking the steroids any longer.

The doctor responded, “It’s protocol.”

He wanted Eli to continue taking the steroid knowing it was ripping his skin and leaving him in agony. It didn’t matter to the doctor that Eli was just a baby being tortured by medications he was administering. Pearl had to again fight a doctor so the her son could stop being tortured. I promise you that if Eli was white this would have gone totally different. They would have come up with a solution, another drug maybe. They would have agreed with her instead of regurgitating, “It’s protocol.”

Pearl took Eli off the steroids herself but it takes time for steroids to leave your systems, especially systems inundated by cabers and so many pharmaceuticals and their own individual set of side effects. And Eli didn’t have time.

“Out of all the medicines that they had out there they gave my son this steroid for the swelling. I asked if there was something else and they said no, because it’s protocol to use that specific one across the board. But I don’t give a damn about your protocol. I want my son.”

“To me doctors don’t see the kids. They see the diagnosis and so they’re treating the diagnosis. When they first go into school their hearts are in the right place. Then they go through this long grueling 8 years of medical school that deprograms them and desensitizes them not to care. They need to learn to listen more.”

Anyone can argue this. Pearl lived it. She watched doctors look at her baby and see right through him. They inundated him with things that hurt him so badly his eyes would roll back into his head from pain, yet tested him for a plant and threatened to take him away from his Mother. The love of his short life.

“The old time doctors, that’s where it’s at. There was an old time doctor at Whites Pharmacy and he listened.” She went on to talk about how institutions now desensitize doctors, often times champions of big pharma instead of little children. Whereas doctors from the past took time with patients, doctors now have a quota for the day leaving them no time for history and no incentive for real connection. Practicing medicine is on speed. We recognize this in the adult world but children don’t have anyone to speak out for them on this, and it’s abhorrently present and dangerous right now in the medical industry on kids. They need advocates who force doctors to slow down. The children need advocates.

“I cannot stand when I see a sticker that says, ‘My son or my daughter lost the battle’. Your baby did not lose! Your baby does not lose!”

“Even though Eli’s gone, my son beat that. My son beat that. He may have passed away from it but my son is free. I’d prefer ‘I beat that’ rather than ‘My son or daughter lost the battle to cancer.’ No! Your baby fought that battle and your baby won that battle. Your baby doesn’t hurt anymore. Your child may not be in front of you where you want you baby to be but your baby doesn’t hurt anymore. I would love nothing more than for Eli to be here so I can love and hug on him but he is happy, he is whole, he is free.” She went on, “There is nothing wrong with your child now. I envy him, and I envy my son Skyler. He’s home and he was happy to go. My son won his battle. He’s free.” Pearl went on to say what not to say that she doesn’t like it when people say ‘I’m sorry for your loss’ to her. “99% of the time people don’t know what to say. ‘I’m sorry for your loss is just automatic but it’s not right. We never lose our children. Maybe we need to stop all these automatic words, like robots. Especially in the most important times. I’d rather you give me a beat. But I do it too. I’ll write, ‘I’m sorry for your loss’ and have to go back to write, ‘Anything I can do’ and send them my phone number, letting them know I understand what they’re going through.” It’s not our fault that we have these automatic sayings in uncomfortable times. It’s only our fault if we don’t change that now.

She talked about the government, how little they seem to care about our kids. She’s right. The US only recently upped pediatric cancer funding to 4% rather than 3%, whereas breast cancer gets 45%. It’s not a competition, which is exactly why these numbers are abhorrent beside each other. “Our government doesn’t give a crap about our kids.” She talked about our healthcare system and how shattering it is. “We need to stop putting so much faith in institutions. Instead of putting faith in the government we need to put faith in God. But God isn’t in every home, isn’t in government. God is offensive to people. We need to stop being offended”

She went on to talk about how many people are offended now by things like ‘Merry Christmas’. Listening to a woman who had lost so much discuss this was the bright light in a dark place. This woman had lost two sons in the most tragic ways side-by-side. She knows adversity more than most could ever fathom. She breathes adversity like she breathes fire. She owns it. It’s hers and she gives it to God every single day. She walks through the fire and wears the flames while praising Jesus. Nothing offends this woman. Nothing. She sees the beauty in everything. She feels the pain in everything and still praises God in the highest. This amazing woman can’t figure out what everyone around her is so offended by. In a world of constant pain she choses gratitude over grief, every single morning, day-in and day-out. Pearl chose Love when she picked herself back up and she keeps on doing that every single morning. And she can’t figure out why so many throughout institutions, news stations, and on the streets are offended. I think Pearl deserves an answer.

“Merry Christmas!” she yells, “I’m offended because I don’t celebrate Christmas or Jesus Christ.” She went on lovingly showcasing the ridiculousness of it all. She celebrates all religions. If Pearl saw a Muslim praising Allah she would stop to smile and take that beauty in. Her point is so important: Live and let Live. Love. Praise, worship as much as you can no matter what.

The moment I realized a child’s love for their parent is something we don’t grasp was at Eli’s last birthday. Eli was tired. Everyone else wanted to be there, and so did he, but Eli was tired. I watched him and though everyone wanted to come up to him and show praise, the only time Eli smiled was when he looked at his Mama. If Pearl was smiling, so was Eli. There’s no word to describe it. If a child’s love were a beat, it would beat to the heart of the parent.

Eli smiled at that party because Pearl was happy. Pearl was happy because she just wanted to see her son smile.

Pearl still feels Eli. “I feel an overwhelming presence sometimes.. calming not scary. Like, you know the difference between a good presence and a bad presence. It’s usually when I’m at my calmest and I’m laying in bed.. It’s an overwhelming presence of someone watching me. I feel that Eli comes the most. I would sit and talk to him. I can’t hear him talk back but I feel him.” Skyler comes sometimes but Eli comes the most. You can’t hear him talk back.”

She explained how the day that he passed she held off calling the ambulance, “I felt like that was the last time I had to be his Mother. To be with him and get him cleaned and get him dressed.” As a parent you love dressing your child. The routines you create with your toddler are highlight reels that become part of you. You never let them go. When a child passes from cancer the parent faces the very last time they’ll get to do this, it’s experiencing a highlight reel and at the same time knowing that you have to let that go forever. That’s bravery, tragedy, and adversary. The people who do this are people who don’t get mad over ‘Merry Christmas’. The people who have been through the fire are happy when anyone celebrates. Live and let live is celebratory.

7 months after Eli died Pearls oldest son Skyler took a walk and was shot and killed. Skyler was a tenacious writer with the smile of a poet. He had depth, beauty, and sadness all wrapped up into one huge gift for those lucky enough to have him shine on them. His eyes matched his smile, with lashes that crowded around them that only enhanced their depth. With a strong build that towered over everyone else, he took on the role of family protector. Like Eli, all Skyler wanted was to see his Mama smile. She was his Mom but he was her husband, father, and baby boy all wrapped up into one. You can look out for a parent as much as possible, but like a child you can’t look out for the parents heart. I think this is especially hard for kids to grasp. It’s hard for all of us to grasp. The love that Skyler had for his Mom and the people around him was so big that grasping it would break your heart. He was a father figure to his brothers, too. Every person who came through those doors to see Eli had to pass through Skyler. He didn’t trust people easily, and rightfully so. They were smack in the middle of systems that make it very hard to win and create hurt people who hurt people all around them. He had a family to protect and they’d been let down so many times by a system that doesn’t care.

The news claimed that Skyler a robbery victim. They said that his pockets were flipped inside out and searched through. None of this was true. Per detective requests, Pearl didn’t speak to the news stations so they made information up to fit the narrative of the story. Local and National news stations have a deadline to meet and push for 3 parts in a story, the last part being the closer. If there’s no closer, oftentimes they will make one up. Yes, this is blatant lying. “Skyler still had his phone on him and I had his wallet.” Detectives denied everything the news said. “They said you have to be careful what you hear on the news because stations will make it up. That was that. No big deal.”

Pearl had to listen to a stranger report a false narrative about her own son and she could do nothing about it. “When you’re a child in school and you can’t see wats going on but you can hear what’s going on from other people who maybe think they know, then in your head it becomes the truth. Even if it’s not. That’s what the news does. If the news doesn’t get something they want in a story then they will make it up.. and then it becomes truth to the viewers that hear it.”Then what is truth after that?

Skyler had defensive wounds around his hands and knuckles, along with a mark on his knees probably from when he was shot. “I asked detectives what happened to my son. I said, look my son went down fighting. If it’s just a driveway they’re not going to get out and shoot you. They’ll drive by. I 100% in my heart of hearts believe that whoever shot Skyler knew him. I believe that his so called friend set him up.” She explained that the bullet hit his clavicle bone, bounced around inside him, and his an artery. Skyler bled out in minutes. “He made it two houses over and one house down before he collapsed. “He died with a stranger by his side. They were driving and saw Skylers white t shirt, got out of the car and sat with my son. All the stranger told me is his fists were clenched and he was focused on his breathing. Skyler was just trying to stay alive.”

“2015 was tough.”

When Pearl prays the entire room goes clear. Like there’s nobody around, just she and God. The heaviness of her prayers are weighted with sorrows we couldn’t understand. The intensity is the interaction between she and God. You can feel her sorrows and watch them be lifted, over-and-over again in one single sitting. She prays with a depth that’s palpable. She prays like lungs or a heart, pumping out and taking in. Watching Pearl pray is witnessing the clearest meditation. She identifies torture by looking right at it to feel it deeply, then she gives it to God. Then the next day she wakes up and does it all over again. When Pearl praises God everything inside her is paradise. She’s unafraid beyond her burdens to praise God, yet she still says she initially felt hate for God. When she says this all you feel is love. It’s intense though, it’s a painful, intense, very big Love.

“I get questions like ‘how can you praise God when he’s taken your kids away’ and I’d feel that. Sometimes I’d want to hurt God and make Him feel how badly I was hurting because my kids were taken.” For somebody with two children who passed all within the same year, that is a pain we can’t fathom.“God is our Father, which means he is a Parent. When your kids are mad at you and say ‘I hate you’ do you really think they hate you?” This hits home as a parent whose child is mad at me because I’m divorcing his dad. Every time he says I hate you right now I see the words sting him like a bee, killing him each time. When he tries to hurt me I see his pain. He does it because he loves me so much. I’ve watched children die and in their most painful time the only happiness they hold onto is their parents smile. I think even after a child has passed they mourn for their parents’ happiness because of how big the love is from a child to a parent. Our kids love us more than we could possibly fathom, and we love God more than we and maybe even He can possibly even fathom.

For God, whose kids are taken one-by-one day in and day out, 1.2 million babies alone aborted each year, the Earth rumbles. God’s pain is so big and so deep that it’s palpable to all of us. In the words we put out, in the sharpness we walk with, in the pain that we deliver to ourselves and our loved ones every single day. God hurts worse in mourning his endless sea of children taken than we could ever possibly imagine. And I think we drown in that sorrow by our own hands. I think we do things and expect our Father God to be mad at us. Sometimes we do things that to us are so bad that we expect God to be eternally mad at us. But God already forgave us. We keep forgetting about Jesus while talking about Him constantly. We keep forgetting He died for our sins.. or do we not believe it? It’s us mad at ourselves, and the escapism is assuming it’s our Father whose angry at us.. so we create a rift in the relationship because that false narrative of exogenous punishment is easier than looking inward at the pain and realizing it’s our lack of forgiveness in ourselves that we hold on to.

God forgave us. He’s just waiting on us to forgive ourselves.

We have to Love ourselves, for God.

“Jesus was the ultimate sacrifice so that we don’t have to do sacrifices anymore.” This means we don’t have to sacrifice ourselves anymore. We’re free. “What if it wasn’t God?” Pearl said. “What if things just happen? Because sometimes things just happen.” Pearl and I go to a church that’s boisterously against religion. There are no rules, God leads the pastor and sometimes he leads the pastor to save people like me. Sometimes God leads the entire congregation to come up behind someone, like me, repenting and hoping and they put their hands all around that person without one command from higher to do so and they save that person, like they did me, tenaciously through the most intense prayer and all together without saying a word to the other about it. They didn’t let down until I was whole again. They all did this right in the middle of an entirely separate focus point because one-by-one at the exact same they were each called to. Then they go about their individual worship and the room is filled with love. Not shame, Love. Not expectations, God. “Pastor Kyle backs up what he’s saying with scripture in an objective way, not subjective. He’s led by the Holy Spirit. Those are the days God preaches.”

I asked Pearl how she started talking to God again and she told me she tried to commit suicide. Her kids were in the car, they were asleep, and she was driving around and came up to a bridge on James road. “If I hit it hard enough, just cut the wheel, that metal barrier is so thin it would have bent out the way and we would have nose dived off the freeway. I believe it would have killed us. I was going to do it and when I went to do it and my car shut off. It wouldn’t do anything. And I was pissed. Because I wanted to take my boys with me. Because I didn’t want them to have to endure another loss. The car shutting off made me realize that wasn’t the way, they needed to be safe. But I still wanted to go. It hurts too much. I couldn’t take it anymore. I couldn’t do it. I got out and was going to jump and my phone rang. It was a good friend and pastor at the time. He told me God told him to call me. That God said I was going to do something stupid. I walked back to my car, felt guilty as ever, and I sat there and prayed. Then I realized, ‘how am I going to get my car out of the road?’ and I turned the key and it started right up.” God saved all their lives that night in different ways. Saving the kids was more intense. Saving Pearl depended on Pearls free will and if she wanted to listen.

“Things aren’t always left and right. Sometimes it’s God, sometimes it’s the devil, and sometimes things just happen. God already made it very clear to me He did not take my Kids away.”

Pearl went on to describe the Japanese art of Kintsugi and the philosophy behind it. Kintsugi is the art of fixing broken vases with gold so that after they’re broken they’re more valuable. Kintsukuroi is the philosophy behind this that depicts how important it is for us to break. Often times breaking is the only way the Light can come out from being bottled up inside you and shine onto the World. And the World needs our Lights. The World needs our lights very badly now. Your World needs Your Light to set it aglow. We are much bigger on the inside and much smaller on the outside due to what we can’t see. Shining that light on the areas of the world around you gives birth to new spaces for everyone never before seen. The simulation is dark but that Light inside you can open it up and set us free. Pearl is set free every single day, over-and-over, with the consistency of her prayer. Of her hope. Of her freedom in Faith. And we all need to protect our freedoms, especially in Faith.

Pearl had written a letter detailing her conversations with Eli about Heaven, a “testimony of faith” she called it, on the facebook page Hope for Eli. It revealed so much about what kids see at this point re Heaven, Home. It disappeared shortly after and she couldn’t find it again, but it was beautiful. “The devil doesn’t like the truth”. I hope this can be a testament to you all of the tests Pearl has endured.

We really don’t grasp how much our kids Love us. We couldn’t possibly grasp how deeply our children Love us. Even from beyond, it is a Divine Love. Never forget that they love you unconditionally.