Author: PaytonPiesMommy

Some days I hate everything, down to the smallest things.

I hate that there’s a new Spider Man movie out, that my son will never see. I hate that there is a Lego kit, in a box, unopened that my baby reserved for “everyone in our house” to put together but it never happened. I hate that there was a little girl at the ice cream shop that shared Payton’s name and it was said over and over again by numerous family members of the sweet little girl. I hate that I felt angry at these harmless people who had no idea about my son or what the name meant to me. Some days I hate that I have kids to be here for.  I hate that I can’t end my life because they need me. I hate that there is a “kids only” section on my TV guide, because that’s the one Payton would have clicked on. I hate that there was a Batman pamphlet in my AT&T bill today because the only person I would have shown it to isn’t here to share it with. I hate that I hate at all, but what I hate the most is that children are dying daily from DIPG and there is still no cure.

I long for the day this hatred leaves my heart and I am whole and healed, but for now I will keep trudging through the days.

Until we meet again💛

It’s a really sad day when you stop praying for your child to live and start praying for him to die. 

From the moment I became a mom, my prayers became something bigger than they had ever been. As I closed my eyes at night I started my prayers with “Dear Lord, please watch over my children as they sleep soundly in their beds tonight.  Please keep them safe and send them the happiest dreams”. This would always turn into myself asking God to give them amazing futures and for my kids to have faith in Him. I would thank God for these wonderful little beings he had blessed me with. 

When Payton got sick, my prayers would sometimes include only him. I would pray for hours, talking to God, asking him to heal my sweet boy, for a miracle I knew only he was capable of. I would tell God all about Payton, as if he hadn’t created him and he needed to know how much this little boy meant to me and what kind of soul he had. I would end my prayer, only to start another directly after. I felt I couldn’t pray enough.  

I will never forget the day I began to pray for Payton to leave this world. It feels so dark, saying I wanted my own child to die. He was so sick. He deserved to live, but he did not deserve to live that way. He was far too great to suffer the pain he was in. 

I recall walking out of the room, where my child’s body lay lifeless. My mom followed. She held me as I sobbed these words: “He finally answered a fucking prayer!”. For the rest of my life I will hate the fact that the prayer God answered was that of my child to die, but I will also be forever grateful that my child did not suffer for months on end as many children with DIPG do. 

I am no longer afraid of death, and I ask God every day to answer that prayer for me. I understand if it is not my time, I will remain here to suffer, but that does not stop me from asking God to bring me home sooner than maybe planned. 

Here it is almost midnight. I was lying here in bed thinking about tattoos, just about to dose off to dreamland when memories came rushing through my brain at record speeds. The memories were that of the weekend before Payton passed away, when we were at Great Wolf Lodge. I tried to fall asleep but then fear that I might forget some of these memories brought me to sitting position; I have to document these details which are so vivid in my mind right now. 

  My sister and I worked together to figure out a good weekend to take our kids to GWL. We had to work around Payton’s chemo treatments and my sister’s step-daughter being with them that weekend.  We decided to go the weekend of March 17th. The few days before that, Payton started having trouble swallowing and was in quite a lot of discomfort. We talked to his oncologist about having a feeding tube placed. We told Payton that it was an option, but we would need to reschedule our GWL trip since he would need to be in the hospital for a couple of days. He was not having that at all. He wanted to tough it out, so we allowed it. 

   We arrived at Great Wolf Lodge on Friday, and Payton was in a good mood. All of the kids were excited. We checked in and pushed Payton in his wheelchair to our room. The kids went back and forth between our rooms which were across from one another.  Everyone wanted to go to the water park but everyone was also hungry. We ordered pizza. Jason went down to the hotel restaurant to get Payton some mashed potatoes and macaroni and cheese since he could not eat pizza.  Payton ate a few bites of each, but it was very difficult for him. We finished eating and took the kids down to the water park. Payton and I got in the pool, I felt everyone staring at me helping him walk. I did wonder what they thought of my precious, obviously over weight little boy who could barely walk himself, but it didn’t bother me. Payton would have never thought twice about taking his shirt off at a pool before, but he wanted to keep his shirt on, which made me feel bad but I respected his decision. He held onto me so close in the pool. I just held him and carried him around in the water, loving the closeness. A pool basketball came our way and Payton grabbed it. He backed away from me and we started playing catch. Alexis and Alivia soon joined us and we all had fun throwing the ball to each other. Then Payton decided he wanted to go do something else. We walked over to the built-in water guns and shot at each other for a second.  Then I suggested we find my sister and her kids. They were in the small kiddie area. I asked Payton if he wanted to go down one of the slides, which he did. I walked him up the stairs and he went down. He didn’t show much excitement and wanted to go on a bigger slide. I was trying to avoid the big slides because the stairway is very tall with a lot of steps. Jason walked him up to go on one of the medium slides instead. That may have been more difficult, as it is sort of an obstacle course to get to the slides. They got all of the way up there and the slides closed as some kid had pooped somewhere. My heart broke for Payton because I knew how hard it was for him to get up there. We went in the hot tub for awhile before heading back to the room to change clothes to go to the arcade. Payton loved playing games there and won a lot of tickets which he made me hold. He got frustrated choosing a prize, and the attendant was very nice and along with the pair of Spider-Man sunglasses he picked, the attendant gave him a Spider-Man hat. 

   All the while, we were struggling to get Payton to take his pain meds because it hurt him so bad to swallow. He woke up the next morning in so much pain he didn’t want to do anything. He cried as we practically begged him to take his pain medicine so he would feel better. He got upset and went over to the bed, trying to get up on it. I went over and helped him up and lied there beside him. I finally got him to take his medicine and told him he could take a nap and maybe he would feel a little better when he woke up. I felt so helpless.  I knew he wanted to have a good time and the stupid cancer was trying to stop him from that.  He won that day for sure though. A bit later he was ready to go to the water park. He was still in pain, but we helped him get his swim stuff on. I could see him pushing himself through the pain. He hadn’t eaten yet and wanted mashed potatoes and macaroni again.  When we got to the water park I sat at the table with him while he tried so hard to eat. He only managed a couple of bites before he fell asleep in his wheelchair.  I sat there just looking at my little boy. I hated this trip to GWL so much and I hated DIPG more than anything. Eventually Payton woke up and I asked him if he wanted to go play yet. He did, so we went into the pool. A lot of kids were climbing on this big floating caterpillar in the water.  Payton walked over there and I followed. He asked me to help him up. I tried to help him and he groaned “I can’t” and got back down. Then we went to find Jason so we could go on a big slide. Jason carried Payton to the top of the huge staircase to the big slides. I joked with them “It’s a good thing you have a strong daddy”, and I think Jason asked Payton if he was going to carry him next time. We went on the biggest slide, where we could all 3 ride together.  Payton loved it. Then we went in the hot tub again and Payton sat next to me. I remember he was holding my hand under water. He had to go to the bathroom so I took him. He refused to come in the women’s restroom and I hated letting him go into the restroom by himself with the wet floors and his bad balance, but I crossed my fingers and prayed to God he’d be okay. He was. Then he wanted to go on another slide so Jason took him on a 2 person slide. After that we took a couple of laps around the lazy river.

   Walking around the water park was really hard for me.  I saw all of these kids running around playing, and Payton could barely walk. When we were there the year before, Payton was all over that place. He went on the slides over and over again the year before. He and Trenten would have been out of site the entire trip, had DIPG not fucked with our lives.

   After the water park we took another trip to the arcade where the attendant gave in to Payton’s wants again and allowed him to get both the huge blow up microphone and the blow up mohawk hat. Then we went and let Payton pick a Magic Quest wand and took him around to check out all of the things you could point the wand at. He really liked the treasure chests with crystals in them and said he wished he had all of those crystals.

   This was the last fun thing we ever did with Payton. When it was over, we asked him if he had fun and he said “Yes”. When we asked him what his favorite part was, and he replied “everything”, so I guess he didn’t let cancer ruin his fun time. It was a trip I never want to forget but I wish there was no pain involved for my sweet boy. I miss him so much. 

It’s been 3 months, that’s 91 days, since Payton was alive in our home. It feels like yesterday, yet it feels like a year at the same time. For 2190 hours I have missed him and wanted nothing more than to look into his eyes and tell him “I love you” and hear him say “I love you more”. Everyday I feel a little further from my sweet boy, yet I know I am closer everyday to being reunited with him in the kingdom of heaven. 

   There have been many moments that life feels stupid, pointless, and unappealing.  I find myself trying to understand why this happened and how we’re supposed to be okay now. Our hearts are torn apart like shredded cheese. Even if you tried really really hard, you’d never get that cheese back in a block like it started out. You might get it somewhat put back together, but pieces would always fall off…that’s us. 

   The other kids seem to be doing alright. Wes and Jordan have summer jobs and friends to keep them busy, and don’t hang around us much. It’s hard having them gone so much and our house is more quiet now than it’s ever been. Maddi is here alone during the day (I’m here but working downstairs). She comes down and helps me a lot. She should have her little brother here to pick on her and play with her. Maddi and I have always had a special bond, but it has turned into more than that. She doesn’t know it but she’s my little rock.  

   Many people ask how Jason and I are doing as a couple.  We are making it. It’s so difficult when you are both going through the same thing and you want to be comforted and to comfort them but you don’t want to ruin their moment if they are having a good moment. I can say from my experience that you don’t know the true pain of a man until you’ve watched your grown husband stand and sob in the shower, or while standing in front of a photo of your deceased child. One day, we had no kids here, we decided to go out for dinner at the bar. We sat in the parking lot of the bar and cried together for 20 minutes before I said “Ok, let’s put on our masks so we can go eat”. That’s how it is, we wear our masks pretty well most of the time, but the tears fall every single day. Jason and I are trying very hard to be “okay”. We work all week and surround ourselves with people we love on the weekends.  I dread winter already, as I know it’s going to be even worse since we will be home a lot. 

   Many things that pertain to Payton around the house have yet to be done. Our bedroom needs a cleaning so badly, but I haven’t been able to touch anything in there. I sleep and dress in there and that’s all. His final moments were there, and memories of him are everywhere.  There is a bag of gifts that he opened and barely played with the day before he took his last breath. His bags from the hospital 2 days before he passed, his tote of snacks from travelling, and his huge bag of vitamins are sitting around. I never even fully unpacked Florida. Every time I start to unpack anything, it’s crippling sobs and I cannot continue. God I miss him. 

   131,400 minutes ago there was a heartbeat in my son’s chest. Now his heart and body is in a box. I still have not fully accepted that he’s gone. I try to remember every little detail of his life. It’s so hard because it’s like there are 2 Paytons to remember; there’s the happy healthy one and there’s the still pretty happy, but scared and sick Payton who doesn’t look like Payton.  I took a lot of photos but I wish I had taken more. I wish I had more of him. 

Growing up, my mom was my only parent. By saying “only”, I don’t mean she was any less than 2 parents. She was (and still is) amazing.  She has always been an inspiration to me, and she instilled so many wonderful qualities in me.  She taught me to be a strong, independent, caring, and positive thinking person. I have struggled with depression since my teen years, and she always pushed me into positive thinking to help my depression. She drilled positive thinking into me, to the point that I can barely stand negativity in my life. I have a lot of characteristics to be proud of, and it’s because of my mom. 

   Lately, since Payton passed, I can rarely find that positive thinking I was once so good at. If someone told me to “think positive” right now, I’d probably either vomit or sucker punch them. I know the positivity that exists in my life, and I do not take them for granted. But at the same time the overwhelming pain of grieving my child fogs the positivity.

   I feel so far away from my baby. I want nothing more than to see him, hold him in my arms, kiss his cute little face, and have a conversation with him. I do not doubt that I will learn to live this way. I will still hurt, I will still miss Payton every single day, but I know I will learn to live in pain. 

   Sometimes I feel like I’ve let my mom down. She spent so many years guiding me to become the person I was before Payton passed away. I was someone I could be proud of, she could be proud of. Now I feel I’m broken, wasted, and I will never be that person again. But that positivity is still instilled in who I am, it’s one of the reasons I am still here. It may be harder to find at times, or it may be in much smaller moments in my days, but it’s there. 

Dear Payton, 

  First of all, I miss you like crazy. I miss you every split second of every single day. There is a huge hole in my heart and I try so hard everyday to fill it with it’s missing piece. I look for you in the sky each time I go outside. Maddi and I saw a Dinosaur/Hulk cloud a few days ago. I knew it was you. I was looking for you a couple months ago, and saw you sent an owl to sit in the tree next to our house.  He was a beautiful big owl, I saw him. I listen for you in our windchimes. We received one as a gift in your memory and have since bought more so we could hear you in the wind. Your daddy heard you blowing the Myrtle Beach wind chime when there was no wind a couple of days ago.  He hears you baby. I turn your church night light, that you got from Grandma Hamilton, on in my room every night, so I can see you. Your toothpaste is still in my shower, I see it there every day.  It reminds me of your last bath, the one where I got my swim suit on and lied there in the tub with you laying back on me. I walk passed your superhero urn, that holds what is left of your physical body, sometimes I stop and kiss it, but I see you every time. I look for you in all kids I see. I received the hug you sent me today. When Corben unexpectedly hugged me in the kitchen today, while I stood in the EXACT same spot I was the VERY last time you hugged me like that, I knew you sent him to do that. I felt you baby. I look for you at the lake, in the sky, while I sit on the porch swing, while I drive, when I’m working or cleaning, and every moment in between. I will always look for you sweet boy, until we meet again.

Love you forever,

Mommy

Being a bereaved parent feels like a disease, one without a cure. I can imagine the Google layout:

Bereaved Parent Disease

What is Bereaved Parent Disease?

• Bereaved Parent Disease is a mental and physical disease effecting both the emotional and physical well being of a parent who has lost his or her child. Once a person has this disease, they have it for the rest of their life. There is no cure. 

Signs and Symptoms

• Bereaved Parent Disease (BPD) begins with the loss of a child. The symptoms include feeling nauseous or dizzy many times a day, headaches, uncontrollable tears, and hyperventilating. A person with BPD may feel sharp pains through their chest, head, or other parts of the body. More common symptoms are distancing themselves from others, regular suicidal thoughts, and a constant feeling of sadness. Those with BPD may lose friends, become suppressed by the disease, or die of heartbreak. 

Is BPD contagious?

• BPD is not contagious, but those with BPD do tend to make others around them very uncomfortable and sad, if they say what is on their mind, causing the person with Bereaved Parent Disease feel very alone and unable to express their feelings. 

Can BPD be prevented?

• Unfortunately BPD cannot be prevented due to the fact that children die everyday from things like early birth, cancer, car accidents, and many diseases.  The only way to prevent BPD would be to save all of the children in the world, and that is not possible.

How is BPD diagnosed?

• BPD can be diagnosed ONLY by the person living the reality of losing a child. No doctor can diagnose this disease.

How can BPD be treated?

• There are support groups, psychiatrists, and anti depressant medications to treat BPD, but there are no relevant treatments available for this disease. The only things that can help BPD is having friends who also have BPD to talk to and having a relationship with God. 

Complications

• Complications caused by Bereaved Parent Disease include, but are not limited to: feeling very alone even in a crowded room, sleeping a lot of wishing yourself dead to escape reality, not wanting to do anything outside of close family functions, constant crying and longing for your child, and only being able to truly relate to others who have BPD. 

I spent 6 months praying so hard for a miracle for our sweet Payton. I wanted nothing less than for him to become a rare survivor of DIPG. I prayed for him to feel better when he was feeling so bad, in pain, and couldn’t eat or drink. I prayed for him. I just wanted him better. 

Now, I pray for myself to get better. Anyone with BPD knows you don’t “get better”. You learn to live with the disease. And as badly as you had wanted your child to live, that’s how bad you don’t want to live. Anti anxiety meds are a necessity, as well as keeping myself busy and trying not to cry every minute are. This is a “disease” I do not think anyone can ever recover from. It is a sickness that only goes away when we meet our savior, Jesus Christ. I do think with God’s grace it can get a bit easier, although for myself it’s too early to tell. 

Friday, our middle son (15 years old), Jordan, had an eye appointment. Jordan got off work early so he could make it to his appointment and I met him there. I was in a good mood, he was in a good mood. He laughed his way through the series of tests they did. Then he saw the doctor. The doctor was a nice man, with beautiful white hair, a white beard, and friendly blue eyes. He asked Jordan if we were taking any vacations this summer. Jordan told the man we had gone to Myrtle Beach. The doctor asked me if we had family there. I responded, telling him that we had gone there to honor Payton and take some of he and his papa’ s ashes to the ocean. He apologized for bringing it up, and turned his face away from me and stared at his lap. The small room was silent for about 30 seconds, before he turned back to me, his piercing blue eyes filled with tears, and said “I’m so sorry”. My heart hurt for him, as it hurt for myself. I told him “It’s okay”…but it isn’t all okay. I didn’t go into detail but what I wanted to say was, “It’s okay that you brought it up, it’s okay to talk about my angel, but it’s not okay that he’s gone and I’m not okay”. We don’t do that though. Instead we try to comfort those hurting for our loss. We try to detour their pain, so we lie. We try to quickly erase the awkwardness, so they aren’t uncomfortable, which in return causes us to become uncomfortable.

Grief is a nasty emotion. It makes you do any say things you don’t mean. It takes away your honesty and rawness without you even realizing it until it’s already happened.

Are you afraid to allow your 5-7 year old to cross the street alone, or go swimming without supervision? Perhaps you’re afraid for your child to go to the park alone. These are things we can control. The thing that many parents don’t realize (I didn’t), is that there is a murderer on the loose, and we cannot protect our children from it. It does not discriminate, it does not care how much money you have, or the color of your skin, or your gender. It is called DIPG, and it is claiming the lives of 250-300 children each year, in the US alone. If these kids all died at the same time each year, it would be considered an epidemic, and EVERYONE would know about this murderer; maybe DIPG would get the recognition it deserves. But because it is killing children all throughout the year, in different areas, people like myself don’t even know it exists until their child, or someone close to them is effected. We need a cure, we need to be able to save our kids. 4% of NCI (National Cancer Institution) funding for all types of childhood cancers will NEVER be enough. Every adult I’ve spoke to has said they would give their own life to save their child, some have said they’d have given their life to save my child- who they never met, so why are we giving 96% of NCI funding to adult cancers? 

When Payton was first diagnosed with DIPG I had this vision in my mind of him growing up, into an adult, and being a cancer survivor…I suppose that was “hope” giving me that vision. In the early diagnosis days, I wouldn’t allow myself to think anything other than him surviving cancer.

Little did I know, he would not survive cancer, but we would. I read a quote recently, it said “Surviving cancer is not the end of a gruesome story, it’s the beginning of a beautiful one”. That quote applies to the cancer patient who survives it, but what about the loved ones who survive their child or family member having cancer and passing away? We are survivors too; only the story does end horribly and starting a beautiful one seems completely impossible without our precious son, the now missing piece to our beautiful puzzle of love.

We survived cancer, and we’re not proud of it, or happy about it.

Photo: Our family of 6, the way it should be. We will never have family photos taken again. This was taken 4 or 5 months before our sweet boy was carried away on the wings of an angel.