Author: PaytonPiesMommy

It’s nearly 1am. I need to be sleeping, but my mind feels the need to go through the trauma all over again first.

My mind:

“I miss you Payton pie. I wish I could hold your hand like I used to when you slept in my bed. I miss the way you said the word “wish”. I can hear it now. You died in this bed, right next to where I am laying right now. I came back into my room after talking with the nurses to someone saying “It’s almost time”. What?! No?!? It can’t be time yet. No way, we need more time. Why is he breathing like that? It sounds horrible. Music is playing. Songs you love. Your dad and brothers and sissy are hugging you, telling you goodbye. They’re crying. Everyone is crying, except for you. You are just dying. I give you kisses. That last breath….I don’t know if I knew it was the last. I was in disbelief, waiting for another breath, but it never came. You were gone. A loud horrific noise aroused from my soul that I couldn’t replicate in a million years. I wanted to hold you. I couldn’t lift you. The steroids had made you too heavy for me to lift. I held you the best I could. I sobbed. I had to get out of the room. Your soul was gone. I felt it leave. I hyperventilated and sobbed on the back porch. Our lives changed right then. Why?”

I pet our dog Paisley who is laying next to me in bed, and think of you again; you would have been petting her right now. I have to go to the bathroom. I open my eyes and realize I am crying. The thoughts send tears to my eyes without me even noticing it. I return to bed and snuggle up to Paisley. I tell you goodnight. I go to sleep, only to do it all again tomorrow night. Every. Single. Day. And night. I think of you.

So many times you hear people start out a sentence with “It’s no excuse, but…..”. I find myself trying to explain to people why I forgot to bring something I was supposed to, or why I gave the details wrong, or why I completely don’t remember something they told me, and deep inside I know it is my “grief brain” and I don’t want to sound like I’m making excuses, but damn it! It is an excuse! It is a ligitement excuse! The way I explain “grief brain” is this: brain fog, loss of focus, forgetting how to spell when you have always been an amazing speller (sorry to brag, but it’s true, I am now an “ex-amazing-speller” so no need to feel jealous of my expertise spelling skills lol), long-term memory loss- especially if the events you are trying to remember happened before your grief started, trying to figure out why you came in a room WAY more often than the average person (I used to be an average person too…not anymore), over-thinking everything, short term memory loss- for example I am trying to write this while working and I can’t remember why in the hell I turned my computer on….do I need to print a shipping label? Do I need to check a certain message? Did I want to turn on Pandora? Nope, can’t remember. That thought brings me to the next part of my explanation- Grief brain also takes away my ability to multitask like I used to. Cooking a 5 course meal used to be easy peasy for me, nope, not anymore. You should see me in the kitchen, running around like a caged animal trying to find the ingredients I need. I go to the cupboard and think to myself “Fuck! What did I come to this cupboard for?!?”, back to my pan, “oh, yeah I needed the flour.” This goes on through the entire process of cooking a meal. I forget constantly, even worse than before I was shoved on the grief train! I feel like I have Alzheimer’s, no joke, I actually wonder if I do or if I will have someday. I hide things from myself and can’t remember where I put them, ever. I’ve learned to tell at least 1 person where it is located, just in case. I find money in my pockets that I have no idea where it came from, no memory of receiving it…so be sure to have written proof of paying me back if you borrow from me haha! I can laugh a little bit while thinking of the ridiculous things my brain does, but in all reality, I HATE IT. I don’t feel as intelligent as I used to. It is not fun, and using it as an excuse just feels belittling to myself. Grief Brain is frustrating. By the way, I still can’t remember why I turned my computer on!

December 30, 2017

Tomorrow we will get up and begin the preparation for a New Year’s party, and believe me I WILL BE CELEBRATING the end of this devastating year. 2017 has been HELL YEAR. Between losing Payton, trying to deal with a nearly out of control teenager, and some other traumatic events through this year which have just about torn our family apart, I am ready to let the past 12 months go.

Last new year’s eve, the ball dropped, everyone cheered…except me. I went outside to get away from the excitement (and cry my eyes out) only to find my mom outside, who was not cheering either and had beat me to the crying part. We both just hugged each other, crying, saying how we thought 2017 was going to be the worst fucking year of our lives. We both knew the chances Payton would pass this year were high. He wasn’t himself that night (this isn’t why we thought the year would suck btw). He didn’t play with the kids much, and took a nap in my mom’s bed in the middle of the festivities. When he was up, he just wanted to sit on my lap which of course I soaked up every second of.

While I am ready for a new year, I am also sad to see it go. This was the last year our son’s heart ever beat inside his chest. It was the last year he ever said “I love you mom”. It was the last year I could hug, kiss, and snuggle him. It was the first year we celebrated his favorite holidays without him. It was the first year we held a birthday party for an angel. It has been a year I will never forget for both the best and the worst memories.

2017 is a year that will never leave my vocabulary. “I lost my son in 2017”, those words will pop up here and there over time. Those words mean so much more than the syllables they sound like. They mean “My world was fucked in 2017”, “My whole life changed in 2017”, “I became a broken soul in 2017”, “2017 was the last time I ever held my youngest child in my arms”. I hated 2017, however there were 3 months of this year, before Payton passed, that I could breathe a little bit easier than I can now.

In 2017, I found out not who, but WHAT true friends are and which friends and family members truly give a shit. Payton taught a lesson to so many, but a few, somehow, never learned his lesson and those can GET FUCKING BENT. I learned that even those who think they are weak and couldn’t live without their child, well…they can. Don’t get me wrong it fucking sucks. Nobody WANTS to do this, but the choice is not yours when your child dies. I have learned that strength can come in many forms and is not always within ones self 100% of the time. The kind of strength I’ve found does not put up with any sort of bullshit, and forces me to be true to myself in my words. It also helps me to stay sane (most of the time). It has NOT helped me with forgiveness…see below*

New Year’s resolutions…yeah I have them, however they do not include losing a few pounds (I’ll try that when I decide to give a shit how I look), or quitting smoking (I’ll try that again when I decide I give a shit about living a long life and I can go more than a week without an anxiety attack). They do include embracing my new strength, surrounding myself with those who embrace it with me with their positivity, working on forgiving others even when I don’t want to*, and allowing God to guide me (after I ask for forgiveness for my many F-Bombs🖕).

I hope your New Year is happy. I plan to drown myself in alcohol tomorrow night (don’t judge, tears and champagne mix well together🥂) and trying my best to have a happy New Year with my family.

Happy New Year pumpkin, mommy loves you my sweet Payton Pie❤

If you read this far, thanks for giving a shit. It means a lot😘

The holidays are rough…ok that is sugar coating, they royally suck and just don’t feel the same anymore. Everyone is doing the things I should be doing and it makes me sick to think about the reason I am not doing these things.

My baby should have gone to see Santa and had a picture with him. He should have been here to decorate the Christmas tree and make Christmas cookies with us. He should be getting overly excited, making his wish list, and asking me every day “Mom, how many days until Christmas now?”. He should be getting up every morning excited to see what his Elf on the Shelf is up to. I should have been taking a picture of him in front of the tree wearing his little little sweater and khakis, or maybe he would have chosen a button up and dress pants, before the Christmas concert tonight. Then we should have been rushing out the door to make it to the school before the program, where we would have been so proud watching him sing in tune with his classmates. He should be going to the school gift program to choose special gifts for all of us. He should be bringing home something he made for us and be too excited to wait until Christmas to give it to us and giving it to us early. We should be doing Christmas crafts together, making gifts for his teacher, and conversing about past Christmas memories.

He. Should. Be. Here. Damn it!! But he’s not, and I miss him with everything in my soul. I feel like a broken record that cannot be stopped.

The following is something I have not really talked in detail with anyone about. I talk to Payton every night, and I swear I can hear his replies. Maybe my mind makes them up, maybe he is communicating with me. I don’t know, but either way it is a connection and I’ll take what I can get. He tells me he is okay, really really amazing actually, and most of the time it feels like he is hurrying to reassure me so he can be on his way if I get emotional talking to him. I feel like an annoyance to him with my worrying. He says things like “You already told me that mom” and “I want you here too but you can’t come yet”. He tells me the things he is learning there in heaven. Sometimes I’ll ask him to do something and he will say “I’ll try” or “I can’t do that yet”. I talk to him about all of our family members and he always has something silly to say about each person when I “bring them up”. I feel a little crazy writing this, and I won’t get into too much detail because the relationship I now have with him feels so personal and I feel many wouldn’t understand, but I do know he is okay. I am not okay though. I just want him back or I want to be with him in heaven. I am trying to make the best of the holidays for my family, but it does have it’s heart crippling moments.

I know that Christmas in heaven must be amazing. My boy gets to celebrate the birth of Christ with Christ himself! How great is that? More than “great”. I don’t even think there is a word for how wonderful the celebration must be. I am happy for him, but very sad for myself and my family.

I’ve been failing at grief lately.

“I am strong. I am strong. I’ve got this. I can do this.”

These are the things I tell myself. Most days this self motivation helps, it gets me through each day. But then I go through phases where I don’t believe this bullshit I keep telling myself. I feel like the weight of 4 elephants is on my chest. My heart literally hurts, like it’s beng stabbed. The headaches come frequently, and I get dizzy at times. It’s all anxiety, caused from stress. I have to talk myself out of dialing 911. I’m not dieing, but sometimes wish I was so I could escape the pain.

It’s November. In 4 months it will be 2 years since I lost my little sunshine, Payton. I feel so far away from him. How have I survived this long without him? How many more years will this continue? Will it just keep getting worse? Will it get better? Or will I just keep getting better at holding back the tears from others and hiding my pain? I don’t know.

The memories others have of my son seem to be fading, while mine are so fresh and relevant. I hope my memories of him never fade. There are times I have to really concentrate to hear his voice, his laugh, and this terrifies me. I haven’t heard it in so long, but the other memories are raw. I try to push the bad memories out of my mind, anytime they sneak in, but it’s not easy. His death was traumatizing and it rips me apart.

I love it when some random person sends me a message of a memory of Payton. It can be the smallest thing: “He spilt his milk all over the table and I helped him clean it up” or “He pushed my daughter down once and laughed at her. She was so mad”..amazing!!! You remembered! He lived and spilled his milk and push your kid down! He lived! Thanks for telling me, really, I love hearing memories of him being a little stinker, because he was my little stinker, and I miss him dearly.

Sometimes I need to sit in my grief, and get an “F” in the subject. Getting straight “A”s is wearing on me. I can’t always pretend I’m okay, and hold back my tears. I can’t always put on a smile. Sorry not sorry people. I’m not going to “get over” my sadness, so you may as well “get over” the fact that sometimes I can’t get a good grade.

“I don’t feel strong. I feel weak. I don’t have this. I’m spiraling out of control. I CAN’T do this”.

Some days I just can’t. I just can’t work, I can’t socialize, I can’t smile, I just can’t! Some days I just need to take a minute (like I am now) to stop, because I can’t work through the tears…I literally can’t see what the fuck I’m doing! It’s only Tuesday, but the week has been rough. Payton’s birthday is Thursday…he is SUPPOSED to be here to turn 9!!! Instead we are celebrating his birthday WITHOUT him and it makes me SO FUCKING MAD!! This isn’t how, not even close, I had planned my life. I NEVER thought I’d be 31 years old with 3 teenagers. I feel so damn empty. I feel selfish and like a shitty mom saying this, but I don’t feel like a mom anymore. My kids are getting older and could care less about me. They don’t need me. Hell, my oldest hasn’t said more than 3 words to me in weeks! My middle child just cares about going to see girls and playing video games and doesn’t talk to me, and my youngest it seems is always mad at me about something. If Payton was here, he’d be driving me crazy making messes and causing mayhem, but he would give me hugs. He would tell me he loves me. He would want to be close to me! I miss that. I miss feeling needed and loved by my child.

How much would he have grown by now? Would he be to my chin? How much would his facial features have changed? Would his hair still lighten from the sun, or would it stay brown like mine now? Would he have lost his front baby teeth and have his grown up teeth now? What would he look like now? Would his vocabulary be better, would he have been able to pronounce the “s” sound better now? What would he sound like now? Would he be able to read without my help now? How many shoe sizes would he have grown? Would he be playing sports? Which sports? What kind of shows and video games would he like now?? It’s already been way too fucking long since I’ve seen him, heard his voice, smelled his hair, hugged him…and I really have to live like this for an unknown amount of time???!!!!??? Some days I just can’t.

It’s been 19 months today since Payton left this world and was greeted at the gates of Heaven. Some days it helps me to think “this is a really shitty world we live in and Payton is so lucky he doesn’t have to live in it”. I remember saying before we decided to have another baby (Payton), “I don’t know if I really want to bring another baby into this horrible world”, but we did and I’d never take it back for a second even if it meant I had to go through the pain of losing him.
Today is one of those days I’m calling Payton blessed to be gone. We are the ones left behind to suffer until our death in this cruel world. It’s a world where people constantly judge, without having empathy for a second. Even those you think are the most empathetic people will judge you or your actions in a heartbeat. It’s a world where people lie, steal, and cheat, without remorse. It’s a world where politics can destroy friendships This world we live in is one that children die every single day because there isn’t enough money for a cure. It really is a sad world and although my heart is broken into a million pieces, deep down I am so glad Payton never had to face the “real world”, besides the cancer part. He never had to know all of the bad in the world. His life was full of fun, love, and good people. He had fun every day of his life. The day he passed, he did not have fun with us but I know he had fun as soon as he got to heaven. How many can say “I had fun every single day of my life. I was happy every single day of my life. I was never, ever, once given reason to question God. I never judged anyone in my entire life. I never hated anyone, ever. I never felt hate from anyone in my whole entire life.”? I know he could wholeheartedly say those things.
This blog post is not meant to justify DIPG. This horrific cancer needs help. I am seeing kids die every day from DIPG. I am seeing kids suffer and it is not right. DIPG needs a cure so families don’t have to go through this and children do not have to suffer. Autocorrect should not be changing the word I type after “children” to “die”. This is not right!!!

In exactly 1 month Payton should be turning 9. That means it has been almost 2 years since we got to celebrate a real birthday with him. His “last” birthday is burned into my memory like it was yesterday. This was “before DIPG”. He had the tumor, but we didn’t know it yet. We all went camping at Barnes Park for the weekend. Our campsite was just past the bathrooms and the stairway that leads to the beach. It was close to the park, just how we liked. We had his party on Saturday and most of our friends and family joined us for food, cake, ice cream, and gifts. I tried really hard to give him a great birthday party, as I always tried when my kids were small. He wanted a superhero birthday party. I bought superhero capes and masks for all of the kids who would be there. I heat pressed all of the kid’s names on the backs of them. Some of the kids wore their capes to the park, it was adorable. We had given Payton a hover board for him birthday, along with his “actual birthday-day” cupcakes at home with just our family. The kids rode it around the campground, a couple of them falling, including Payton. Trenten came to our campsite telling us Payton had fallen and Jason went and got him. He was a tough kid and snapped right back as usual. We spent the weekend playing in Lake Michigan, roasting marshmallows, and hanging out with family. I remember one night he was ready for bed, falling asleep in the camp chair. He wanted me to go to bed with him but I wasn’t ready for bed. I told him I’d be in in just a bit. I wish I had gone and snuggled with him. Had I known it would be his last earthly birthday, I would have. I would have done so many things differently.
As it gets closer to his 9th birthday I feel my anxiety raising. I feel myself being sad, angry, and in deep pain. I have scars on my heart that will never heal. You cannot see them, but I feel them every single day. There are days like today where my heart literally hurts. I feel sharp pains when I think of my sweet boy. When a grieving mom tells you she misses her child so bad it hurts, she means that literally, not as a metaphor. I live a life full of “half-happiness” now. I try not to take my heartbreak and bitterness out on those I love, but sometimes I do. I try to mostly smile, but a lot of times I cry. This is me now. I still don’t know if I’ve truly accepted the fact that Payton is never coming back. In fact just typing that last sentence has me all fucked up. I try to ignore the fact that he is gone, just to get through the days. I think about him every single day, multiple times a day, actually I don’t think an hour goes by that I don’t think of him. Something reminds me of him always. To say I miss him is an understatement.
We will be releasing butterflies to Payton on his birthday this year to celebrate the 7 years he lived. They say “If you whisper to a butterfly they will deliver your messages to Heaven”, so the butterflies can deliver our happy birthdays to him.

Are you mad that your child won’t eat all of his dinner? Be happy he has the ability to eat. Annoyed by your child running in the house? At least he has the use of his legs. Upset because he won’t go to sleep at night? Admire the fact that he hasn’t been sleeping for 62 days straight. Irritated by the temper tantrums? Be grateful they can talk, let alone throw a fit. Frustrated at the party planning, bathtime, constant diaper changes, dishes, cleaning up after kids? Stop. Please stop for a moment, pat yourself on the back, and hug those babies. They’re only little for so long, then they grow up, or they don’t..like my baby. So many kids are dying right now from DIPG, and so many already gone. All of these moms and dads would give anything to have a wild child running around making messes, starting a fight with their siblings, wanting to be tucked in “just one more time”, or needing you to make them a lunch. Summer has been great, but it is also filled with sadness. I love my kids more than can be told, but not having my little boy running around, shooting a squirt gun in the house at his sister, spilling lemonade on the floor, or tracking dirt all through my house is just so hard. Love your kids, just love them, do it for me❤

My dogs all followed me to bed tonight. Usually it’s just my 2 smaller, younger dogs, who come to bed with me. But tonight, they all 4 pawed into my room. They can sense it; dogs are smart. They know I am hurting more than “normal”.

Depression is real. It strikes when it wants and for me, it’s always lurking. Over the years, 16 years living with depression, I’ve learned to cope I suppose, sometimes with meds, other times without.

PTSD is another world I’ve entered strongly since losing Payton. It’s a world I wish I could leave. PTSD is hard to understand unless you’ve experienced it. I experience it every couple of weeks or so for a week or more at a time. It affects me more so at night, but many times during the day as well. Many nights I lie my head down and the moments rush back to me. The night before and the day he passed hits me like 5 tons of bricks. I relive the moments as if they are happening NOW, and the pain is just as stabbing as they were that night. I told him “goodnight” and that I loved him very much.  I gave him a kiss, but he was already sleeping so he didn’t say it back, and he didn’t hear me tell him. I know he loved me. He told me at least 2,555 times before. He had asked me earlier in the night when I was going to put his oils on his feet as I did every night after he was diagnosed. I told him I would, but I forgot.  I barely slept that night . He woke up around 2:30am wanting a drink. He choked on it because the tumor had taken his ability to swallow. I replay him saying “I tried” in my mind over and over and over again. Again, I feel the same pain I felt that night, all over again. I relive the day he passed OVER and OVER and OVER, and the pain I feel is just like it is happening right now in the moment. I try to think of moments where he was healthy, and I feel guilt. I tell myself things that I know are untrue, but I don’t know how to stop thinking these things. Paranoia is a big part of who I have become since losing Payton.  I am paranoid something could happen to another of our kids. I think everyone worries about their children, but this is different. This is having your heart drop everytime one of them asks to do something.  All of these “crazy” thoughts come to mind of what “could” happen but probably won’t.  I feel like I’m in a constant battle with my mind. I avoid certain songs, TV shows, and activities that take me back to the “Payton days”. I cannot make myself go there. PTSD for me does come and go. I can go a week, sometimes more, without having flashbacks, but when it comes it definitely puts me in a very dark place that I do not want to be in. Writing does seem to help,  so thank you to anyone who takes the time to read and thank you for humbling yourself, as I know some of my writings are probably not easy to read.