Author: PaytonPiesMommy

Our daughter Maddison brought up softball in January. Softball was far away, as it is a summer league here. Payton then started talking about baseball, and how he wanted to play again this year.  I told him he could play. He knew he might struggle. He was saying things like “I want to play but I probably can’t”. I promised him he would be part of the team no matter what. I discussed this with the head of little league, and she agreed the coach would make sure he was included, some way, some how. From that moment, he began to get excited about ball. His excitement turned into almost an obsession. He would search Amazon for hours looking for the perfect bat, bag, mit, cleats, batting glove, sunglasses, and even socks. I agreed to allow him to order the sunglasses and socks he wanted, to try to satisfy him for the time being. He asked about the socks and sunglasses everyday until they arrived. A couple of weeks later, during a trip to Gaylord, prompted by his “need” to get baseball stuff, we allowed him to choose a baseball bag and batting glove to buy. When we got home, he was so excited to put his baseball stuff all in the new bag. He was pushing us to order cleats and had found the perfect ones he wanted online. We told him his feet would grow before baseball started, as it was still 5 months away, and that he needed to wait to get them. We knew his condition might change before ball started, and we assumed by that time he would be wheelchair bound. We envisioned taking him to every game and allowing him to bring snacks for the team and sit in the dugout with his friends.  We envisioned him being happy to be there, proud of himself for bringing goodies for his friends, even if he couldn’t play. Our envisioned turned sour on March 26. Sadly, his feet never grew, only his memory will grow now, in our hearts and minds.

Call it a breakdown, call it a meltdown, call it grieving out loud, or call it losing your shit…it’s all the same and can happen at the drop of a hat, or the sight of a certain toy, or a particular scent and there’s not a damn thing you can do about it but take it as it comes. It doesn’t matter if you’re in mid-conversation with someone, or in a crowded store, or alone in your bed…it comes with a vengeance and the pain rushes through you like an electric steel rod.

This happened to me this evening. As I sat my chair in the same place I have for years at the Kalkaska baseball feild, memories came at me like the biggest waves in the ocean, ready to knock me down, and they did. The last time I was there, I took Payton and my nephew Brantley with me to Maddi’s game. Brantley was running around, he’d just learned how to walk..and run. He was so cute and Payton was so helpful making sure his baby cousin didn’t run onto the feild. The entire time we were there Payton was asking for money for the concession stand. A parent next to me (I can’t remember who) laughed everytime I pulled out another dollar to give him. He would come up, reach in my bag of popcorn, then shove his mouth full and ask for money.

Tonight, there were no little hands to dig in my popcorn bag. There were no kids for me to watch over. There was no one to ask me for dollars or to tie his shoe for the 14th time. Sounds relaxing right? Wrong. It was sad, and painful.

Thankfully Maddi’s teacher chatted with me and accepted some popcorn. She thanked me, and I thanked her. I don’t think she knew how much it actually meant to me to have her to share my popcorn with. It’s the little things like this that we all take for granted. I didn’t realize that day at the feild last year would ever come back to my mind. It wasn’t important, or special…at the time. But it is now, because it was a day I spent with my boy and a day I remember. Miss him more than words could ever tell.

I think it’s human nature to have a need for reason, especially if you are an over-analyzer such as myself. I’m constantly trying to justify why things happened to Payton; with reasoning.

They say there’s a reason for everything (I barely believe that shit anymore btw). Kids get sick so they can build their immune systems. We eat and drink to survive. It rains to give the earth moisture. We have eyes so we can see. We work so we can have money to take care of our families. These are the kinds of things that have valid reasons…not everything does.

I have thought that the “reason” Payton was so sick and went through so much before passing was to make us stronger to be able to bear losing him. I’m not saying we could bear it, but we’re still alive and I *try* to justify it that way. Then I think about children who pass away suddenly, with no warning. Their parents don’t get “time to get a little stronger”, so why would we? Then my reasoning doesn’t make sense at all.

Trying to justify things with reasoning makes us question God which we know is wrong. I have not allowed our loss to diminish my faith but it definitely does make you so angry at God sometimes.  We ask ourselves often “Why did this happen to our son, to us?”

It’s a pity party in our minds that we have everyday and we don’t give a flying shit what anyone thinks about us feeling sorry for ourselves and our other 3 kids. Normally I wouldn’t be one to feel sorry for myself in any situation, because MOST situations are in your control and if things aren’t going good it’s your own damn fault, but this is different.

Sure, we can put on our masks and pretend everything is fine..but f*ck my life, it’s not fine, it’s not even close to fine. The reasoning behind these masks we wear is not for ourselves, it’s for those around us. We live this pain, we know how much it sucks the fun out of everything and makes us miserable, we don’t want to do that to everyone else too.

We are just going through the motions, doing what we’re “supposed to do”, like robots. The reasoning there has to be the best reason ever; their names are Wesley, Jordan, and Maddison.  That is the only reasoning that makes sense to me at all.

I hope we can stop asking “why?” someday because it is an exhausting part of this grief. Until there is a cure for DIPG, I think we will continue to ask why, then there may be more “whys”.

My heart is broken, shattered to pieces. I miss my sweet boy so much. School is coming to an end for summer break soon and it’s been really hard on me emotionally.  The loss of our youngest child mixed with the emotions of our other 3 growing up have had me very sad lately.  I could never stand the thought of my kids not needing me a lot. Now I’m not saying they don’t need me, but they are all becoming very independent and self sufficient.  Payton still needed me to reach the plates for him, help him cut up his pork chops, pour the milk for him, double knot his shoes, style his hair a certain way, tell him how to spell a word, remind him how to write a “b” and “d” the correct way, tell him if the Uno card was a 9 or a 6. He still needed me to pretend that Santa and the Easter Bunny were real. He still had 25 baby teeth to lose. All of that is gone. Before he got sick, I was struggling with him going into first grade, learning how to read and write, and being able to dress himself and make his own toast. I was having a hard time with my baby growing up. Now all of that is gone and I just don’t know what to do with myself.

Our oldest will graduate high school around this time next year, our middle son is going to be a sophomore this fall, and our daughter starts middle school. It feels like we missed out on 4 years of “little kid” life, that we will never get back.

Keeping busy feels like the only way to cope but then it’s like I feel guilty for “trying not to think about him” and wonder if it’s unhealthy to grieve this way. It all hurts so much. I remember him saying, near the end, “It hurts too bad”. I asked God to give me Payton’s pain. As much as I want him back, I wouldn’t want him to be in any pain and I sometimes tell myself I am living with this pain so he doesn’t have to.

Being in this position teaches you so much, as well as changes who you are. I have developed new characteristics to my personality, some good, others not so good. I have always had empathy but my empathy for child loss has become deeper than I ever wanted to imagine it could be. My relationship with God is stronger than it’s ever been (even with the anger towards him at times). I have been asking God to help me to not become a cold person because of my loss. I’ve found I have no time, nor care for “bullshit”. I have become a more “to the point” person who could deal without details…not because I don’t care but because my priorities for what is important have changed so much. Living this nightmare makes things that may be “big” to some, seem so small. I’ve become less sympathetic to others who have lost a parent or spouse, especially if they lived a long life. I don’t like this new characteristic, but it’s there and the reason is because I would have traded my husband or my mom for my son, in a minute (they both know this and understand completely). It would not have been easy by any means, but it would have been more natural in the cycle of life and I could have lived with that with a little peace of mind. This loss is so wrong, and unnatural.

DIPG just keeps taking babies from their families, leaving them to try to survive the unthinkable. I know God did not give Payton cancer, and I keep praying God will put the right things/people into place to end DIPG. Several friends have asked me “how are you doing it?”. I really don’t know, I just am, I have no choice. My husband and I love each other and our kids, love keeps us alive. I know 100% we would no longer be a part of this earth if we did not have 3 living children who need us. I do wish they needed me to reach the plates or pour the milk for them, but I’ll take driving them around, being there for them to talk to, loving them, and teaching them to be good people for now. 

Photo: 1st day of school this year. Payton’s last “First day of school” photo 😭 This was before he was diagnosed, but he had the “head tilt”… we weren’t sure why he was doing it. We know now it was the tumor.

Going to bed at night is such a dreadful part of life for me now. The moment my head hits the pillow my mind starts going and my heart starts hurting. I think about all of the nights Payton slept with me for the 6 months post diagnosis.  We had a routine. Jason would tuck Payton in first then I would untuck his feet to rub oils on them. Then I would put his oils on his head and neck before making my way to my side of the bed. Some nights we watched a movie or half of a movie, other nights we watched Blue’s Clue’s. We watched every “Air Bud/Buddy” movie ever made. We’d laugh together at the talking dogs and say which one was our favorite. We would compare each movie to the last and point out the diffrences. If there was a sad part, Payton would say “Awwwwe”. I miss that “Awwe”. Payton was such a sensitive and caring boy. While watching Blue’s Clues, we would try to figure out what the blue dog wanted to do, eat, say, etc each episode and discuss whether we thought the dog “Magenta” would be in that episode or not. I played along and Payton got so into it. I loved seeing him get so excited to point out a clue in the show. Then he would sit up and take his shirt off (with his mommy’s help), then give me a grin and roll to his side for me to scratch his back. He never went to sleep until he told me goodnight and gave me our special goodnight kiss and a great big hug. I made it a point to hug him as long as he would hug me. I miss those hugs so much it hurts, physically hurts and makes me sick to my stomach. Then we’d argue who loved who more before settling to sleep. Most nights as he was going to sleep he would hold my arm or my hand. I think it was comforting knowing I was close by. Sometimes after a few minutes of silence, I’d hear his little voice, “Mom?” and he’d ask me something or tell me something like “you forgot to turn the closet light on” or “Where’s Paisley?” or sometimes something deep like “Do you think Grandpa’s mom knew who he was when he went to Heaven?”. The last 2 nights of his life, our routine was abandoned. He was sleeping so much off and on, it was almost like bedtime all of the time. I hold onto guilt for this in some ways. I wish I had rubbed his oils on his feet…that is the one thing that really bothers me. It seems sort of dumb but I feel like I should have done that his last 2 nights although it didn’t cross my mind those nights. Things were just changing too fast and my thoughts were a mess. I miss my baby so damn much. Night time was our 1 on 1 bonding time and although I talk to him every night, before I even talk to God, it’s just not the same. His time ran out way to fast and I find myself so angry at this. I see other children running out of time because of DIPG too and it literally sickens me because I know the deep pain that comes after watching the child you carried in your womb suffer, then leave this earth too early. 7 years was not enough. It will never be enough.

Everyday activities can be crippling to the heart.  Cleaning out my car for the first time since Payton passed was rough. First I found his winter coat in the back, that still smells like him, like “us” I guess, but I could smell him. Then I found his camo jacket, the one he had to take a bunch of pills to be able to get…pretty sad when your child has a sticker chart for taking medicine well everyday. There was a smashed penny in the pocket from the Grand Rapids Museum. That was a good day. He got to see the whale exhibit which was cool and he really liked the game about different kind of whales. Then the papers…the ones with the appointments he never lived to make it to. The ones with scheduled dates after he was gone and the ridiculously long drug list attached, so long that the average person would think it belonged to a 90 year old. I wish he was here…but I know he hated going to the doctors. The good memories definitely outweigh the bad, BY FAR, but the bad memories are the ones so fresh in my memory. I wish I could erase those bad times…if only we had “off switches”.

6 weeks we have survived without you Payton. I have no idea how we’ve made it, but we have.  I woke up at midnight last night crying, missing you. I miss your smile, your hugs, your silliness, your snuggles, having you next to me or on me all of the time. I miss finding your random selfies on my phone.  I miss our funny conversations of “what if this happened…”. I miss you asking me to do your hair a certain way, or you asking me how you looked after you got ready to go somewhere.  I miss reminding you to buckle up in the car. I miss hearing you say “Daaaang Pates!”, when you did something you were proud of like running fast or eating all of your dinner. I miss you, all of you, but most of all I miss how you loved me.

Payton’s 7th birthday was on a Tuesday. We celebrated it by going camping the weekend before. During this camping trip, we noticed he had been keeping his head slightly tilted to the left. At first I thought it was just him being his quirky self, or possibly a habit.

A couple of weeks later, Payton, Maddi, and I were in PetSmart looking for things for our new chihuahua puppy. As we were walking over to look at the fish and birds, Payton fell. He fell hard, right on his face. It was like he didn’t know it was coming, or he wasn’t able to catch himself. He cried, which was rare for him to do if he fell or ran into something; he was a tough kid.

A week later it was the first day of school. I took “First Day of School” pictures on ths front porch, as I did every year. This year, I remember telling Payton to “stand up straight buddy, hold your head up straight”, but he said he couldn’t. I gave my husband the “did you hear that?” look.

On a nice weekend day, a couple of weeks later, we were at my mom’s house. The kids were all playing in the yard. My brother had brought his rambunctious dog over, who Payton loved. As my mom and I talked on the porch, we heard someone crying. Looking down the hill we saw it was Payton, he was on the ground. My brother’s girlfriend, Kaylee, was down there with him. We all thought the dog had knocked him down, but Kaylee said “No, he just fell out of nowhere.” I told my mom about the day in Petsmart and a few other times he’d fallen. I remember telling her, “He’s been falling a lot lately, and this head tilt thing he’s got going on…I wonder if he has an inner ear infection.” She agreed it seemed like he had an inner ear infection and I decided I’d make him a doctor’s appointment Monday morning.

The doctor’s was able to see Payton Monday after school. I told Dr. Barb what had been going on. Payton was being a goofball the whole visit. Dr. Barb had a look on her face, which to me resembled confusion, as I told her my mom-given-diagnosis. Payton jumped off the table and put his arms straight out in front of him and his head down, but looking up with his eyes, as he walked, saying “I’m a zommmmbie”, in this silly deep voice. Dr. Barb now looked concerned, and asked him to do it again. He did, and she pointed out to me what I had already noticed as soon as he did it again, one arm was higher than the other. She had him do sone tests in the hall such as walking, running, and an eye test. Back in the room, she told me she was going to call and get an urgent MRI scheduled. I was confused…I didn’t know what all of this meant…an MRI…I tried to calm myself by telling my mind it was all just precautionary, nothing to worry about. But I was worried. I knew they wanted to look at his brain. The brain is an essential organ. Please dear Lord don’t let anything be wrong with my son’s brain.

I got the phone call for the scheduled MRI later that night. “Wow, that was fast.”, I thought when I answered. They had scheduled the MRI for the very next day. I remember telling my mom and husband that I was scared. Why would they schedule it so quickly. I was terrified that something serious could be wrong with our baby.

When we got to Helen Devos Children’s Hospital, we saw a neurologist. He asked us many questions. His questions scared me. I cried answering some of them. I told him I was scared. He told us, “I don’t want to tell you not to be afraid.”. We asked him if he thought something serious was going on and he told us it was possible. Payton goofed around the whole appointment, full of energy, loving the electric powered doctor table.

We were then taken to a hospital room. The nurses and child life specialists were wonderful. We got Payton ready for his MRI, by dressing him in hospital jammies, which he loved. We decided to try the MRI without sedation since they told us he could watch a movie during it. While we waited, I cried, and prayed. I was a wreck. Jason was a wreck. Payton did great though.

That evening, around 7pm a man (I don’t know who he was), came and asked to talk to Jason and I, alone. While a nurse sat with Payton, we followed him to a tiny room which barely held a table and 3 chairs. The look on his face was not good. As we stared him down for what felt like 15 minutes, he finally said, “They found a large mass on Payton’s brain.” I felt cold rush over my entire body, my teeth felt like the clentch of them held a lock and key. Jason let out a gasp as his hands slammed down on the table, and his posture went limp. I looked down at the table, waiting for this man to give us the good news. Jason finally managed to ask, “Well, how big is it?”. The man said, barely able to look at us, in a very serious tone, “It’s big”. Jason and I just wanted to go be with our son. The man told us we would have more information tomorrow.

We had to wait until the following day to get the full results from the MRI. I called and asked my mom and sister to come down. They did, of course. Payton was having fun, playing Wii games and eating pie. He was on top of the world. We were devastated. Looking at this healthy child in the bed, we couldn’t wrap our heads around it. I told Jason to stay calm, that they could probably remove it. I knew we probably had a long road ahead of us, and I was afraid too, but I didn’t want to scare Payton. Neither of us slept that night.

Tuesday came, and we were anxious. About mid-day, 4 people came in Payton’s room. 2 looked like doctors, the others a social worker and nurse. They asked if the child life specialists could take Payton to play for a bit. We agreed.

Dr. Axtell was the oncologist. He spoke first. He said a lot of words that we did not understand, but the words we did understand were “inoperable”, “tumor”, “fatal”, “radiation”, “no treatment”, “no cure”, “1% survival rate”, and “no progress with research in 40 years”. He told us this was the worst kind of brain tumor to get. I screamed aloud at God , as I sat on Payton’s hospital bed, right there in front of those strangers. I wailed. When I finally gained a bit of composure, I asked the question…THE question, “How long does he have?”. The doctor replied, “We cannot say for sure, because each case is different, but approximately 2-3 months without radiation, or possibly 9-12 months with radiation treatments”. My heart turned into mush at that point. Months?? Did I really just hear that right? I thought he would say our child wouldn’t see 30, or 40 years old, and that was bad enough. He was saying our child probably wouldn’t see 2nd grade? I wanted my baby, I couldn’t spend another second away from my son who’s life had just been given a short expiration date.

That afternoon, more family arrived. Some came bearing gifts. One gift was a set of 4 puzzles. I asked Payton if he would like to put one together. He said, “No! I want to put them all together!”. He had a certain order he wanted to put them together, Ninja Turtles first, then Bob the Builder, then the other Ninja Turtle one, and finally Paw Patrol. As we put together the Paw Patrol puzzle, Payton pointed out a white dog, “Mom that’s Marshall. He’s a firefighter. I want to be a firefighter when I grow up.” I had to turn my head away from him, as I bursted into tears. I mumbled to him that I had to go potty and bolted to the bathroom. How was I supposed to tell my 7 year old son that he wasn’t going to grow up? That he would never have the chance to grow up and be a firefighter?

My husband spent most of his time that evening throwing up, completely, physically, sick over this news. He ended up going to the emergency department that night to get something to calm him down.

The doctors prescribed Payton steroids to help with his symptoms being caused by the tumor. Within just a few days, you’d never know he had a brain tumor that would kill him within a year. We were able to take him home for 6 days before he would start radiation therapy for 6 weeks.

Going home was bittersweet. We wanted to be home, but it all seemed more real when we got there. Family surrounded us with their love and support.

Our other 3 kids had missed us, and our youngest of the 3 didn’t know much at this point. How was I supposed to tell my 11 year old daughter that her baby brother was probably going to die? How would I tell her to spend as much time with him as possible, because we don’t know when it will happen? Talking to her was horrible. She was in shock, I saw the color drain from her face. I told her the truth, but also told her that we were going to pray for a miracle and that we would never give up hope. I told her that God would get us through, no matter what happened.

The community came together for our family. Payton had an unforgettable day with the Central Lake Fire Department, rode a pony, and spent his days home before radiation being treated like the prince he was. 

 To have radiation, Payton would need to be fitted with a mask. He had to lay on a table for about 45 minutes while the radiologist put a wet mesh-like material on his face, then waited for it to dry. We stayed with him the whole time and he was read a Magic Tree House book. He did an amazing job of holding still for that long, considering what an active child he was.

The first day of radiation was very emotional for Jason and I. The waiting area was full of elderly patients. Payton was the only child. In fact, we never saw another child in the waiting area the entire 6 weeks Payton did his treatments.

Payton would hop up on the table in the radiation room without hesitation.  The radiologists would place the mask over his face and pin it down to the table. Jason and I would assure him we would see him in a few minutes, and out the door we went. We could watch him on a camera in case he ever needed anything.  He never did. He always did great. It only took about 10 minutes, and most days I cried for that 10 minutes. What was my baby, my youngest, my last born, doing on a radiation table for cancer patients? I couldn’t wrap my mind around it. I still can’t. Payton could pick a few stickers when he was done, and would put them on his coat or shirt everytime.  Sometimes he would give Jason or I one.

We stayed in a hotel a few miles from the hospital, during the week for Payton’s radiation treatments.  We found lots of things to do. One day we went to the zoo. Payton especially loved the monkeys and we watched them for what felt like an hour.  He laughed so hard at the monkey throwing his own poo. We all made monkey sounds and I asked Payton if he thought they could understand us. He replied, “I don’t know, maybe”, in a matter-of-fact tone. Another day we went to Frederick Meijer Gardens. Payton was quite bored there, but it was better than sitting in the hotel room all day. We took many trips to Krispy Kreme Donuts, Wal Mart, and had lots of swims in the hotel pool. Chuck-E-Cheese, SkyZone, and Dave and Busters were some of Payton’s other favorites. He loved playing arcade games and picking a prize to get with his winning tickets.

The last week of radiation, Payton complained his mask was hurting him. When he got done, we could see marks all over his cheeks where the mask had been smashing his skin. He had gained around 20lbs in just 5 weeks. His cheeks were very puffy and he was almost unrecognizable.  The radiologists made a decision that we would try one more time with the mask and if it was still bad, we could try to stretch it. The next day, they pinned the mask into place and started radiation. On camera, we could see he was fidgety, which wasn’t like him. They stopped radiating to check in on him. When we got back in the radiation room with him, they took the mask off. He had been crying under the mask.  My heart broke. Here’s my poor child who has been through so much already, and this has to happen. We told him he didn’t have to do radiation today.  The following day, we felt we had no choice but to try to stretch the mask if he was going to finish his radiation treatments. This required Payton laying on the table for awhile so they could wet the mask, stretch it out a bit in the problem areas, then allow it to dry. Payton was refusing to do it. I couldn’t blame him. I didn’t want him to have to do ANY of this. No matter what Jason or I said, he was not having it. The radiologist tried to talk to him. I asked for the child life specialists to come try talking him into it. They hadn’t quite made it there yet and the radiologist said we could try another day. I said “Hold on just a minute…I’m going to try bribery.” She smiled and left the room.  I hesitantly told Payton, “If you do this for mommy and daddy, we will take you to the store and you can get ANYTHING you want.”. He said, plain and simple, “I want a metal detector.”. I hoped they weren’t like $600 or something and agreed to get him one. Once he was on the table they started the steps needed to make the mask fit him better. He did great for about the first 20 minutes, then became very irritated. He began to cry. His cries turned into mumbled wails under the mask.  I had to leave the room. I went in the hall and broke down. I hated that he had to go through this.  He was 7. He should have gone to school that day, and played on the playground with his friends. Instead he was basically involuntarily being bolted to a table by his head, surrounded by hospital workers.

They were able to get the mask stretched enough to make it more comfortable for Payton’s last few radiation treatments.

Before his last treatment Payton wanted to get gifts for the radiation team who had been so nice to him. We went to Wal Mart and I asked him what he’d like to get for them. He said he wanted to get them crystals. Payton loved crystals, but where was I going to find crystals in Wal Mart? Our search began! We looked in the craft section, nothing. We looked in the home decor area, nothing. We wandered through the Christmas aisles and Payton spotted crystals! They were ornaments for the tree, but they were what he wanted to get them. Along with the crystals, he wanted boxes to put them in, so we bought gift boxes too.

Back at the hotel room, he made a beautiful card with the radiation team member’s names and a picture he drew of each one of them. He wrote on the inside, “Thank you for helping me. Love, Payton” (he came up with this on his own). He took the gifts in to radiation the next day and was very proud to gift them.

We were so relieved, yet afraid, when radiation was finally over. There was no “next step”. There was no “further treatment”. We had a choice to enroll Payton in a clinical trial, but which would be best? None of them had cured anyone of DIPG. Most were in phase 1, meaning they were just trying to figure out how much of a certain drug each child could take. The decision that lie ahead was almost paralyzing to our minds.

In the end, there was no right decision to be made. The what-ifs will always be part of my mind. What if we hadn’t done radiation, would he have lived longer? What if we had gone to New York? What if we had gone to Germany? Although I think about these things, I know in my heart we did what was best for our son, as he did not care for traveling a lot, and children on every trial have passed away.

I thought we had many more “firsts” before we were on to our lasts. I did not know Maddison would be our last child to complete 1st, 2nd, or 3rd, or 4th, or 5th grade. I didn’t know she would be our last child to go on the Lansing feild trip, or Mackinac Island trip. I had no idea we were already experiencing our “lasts”. I thought we would have 4 more years of elementary school carnivals and school picnics on the playground. I didn’t know Maddi would be the last to do a 5th grade science project. I took all of these things for granted, thinking I had another to come. I never went on a single feild trip with Payton. After this school year is complete, I will never attend another school picnic or carnival or 5th grade graduation. I will never teach another child to ride a bike without training wheels, which Payton didn’t quite master last summer, but we knew he would this year. DIPG didn’t give him those chances. It took a bright future away from my son, from my entire family.