Payton Strong

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.

There are so many things that are unknown after losing a child. How will I breathe? How long will I feel this way? HOW DO I GO ON WITHOUT MY CHILD? And so many other questions. On Friday my mom’s best friend, who is like an aunt to me (she’s family) lost her son, who was also “family”. It has brought back some of the feelings I had in the early days post child loss. It has triggered my memory of those DEEPLY painful early days. I’m going to share some answers I’ve found along the way in hopes it will help someone in this horrible club. Please note that I can only speak for MYSELF, but I do know many other bereaved parents who have had similar experiences.

1. How am I supposed to breathe?
Any way you possibly can! If its crying (sobbing actually, because “crying” just sounds weak compared to what you really do) that forces you to breathe, do it. If it’s just a deep, hard breath, in between the shallow ones that make you feel like you’re going to die, allow them in. I remember walking around, in a daze really, taking these HUGE breaths that made an involuntary moaning noise when they came back out. It was the only way I could breathe. I still take deep breaths every. single. day. But they are easier to take and further apart now, plus they don’t make that awful sound anymore most of the time.

2. Does it get easier?
What..you mean easier to breathe? Yes. Or do you mean easier to live? No. You will breathe somewhat normal again, but it will not get easier to live without your child. You will just learn to live with it. You may still have days you want to die. You will find you think about your child more now than you ever did when they were living because you have to, to keep them alive in your heart.

3. What happens after the funeral? What am I supposed to do now?
After the funeral was the hardest for my husband and I both (besides the day he passed). After the funeral, all of those amazing people, who truly do love you, and surrounded you with their love for the past week, will start to disappear in a sense. They have lives. They will go back to work, their families, etc. Their world did not just get turned upside down. Yours did. Time did not stop for them like it did for you. They don’t have to force themselves to breathe like you do. They all love you, and I’m sure they think about you, but this did not happen to them. They are okay, probably sad, but you are not okay, and sad is a major understatement. Then there are the select few family members and close friends who never leave your side, hold onto them. Proverbs 18:24 A man of many companions may come to ruin, but there is a friend who sticks closer than a brother.

 

4. How do I go on without my child?
If you have a relationship with God, he will help you. He will carry you. I imagine the “Footprints in the Sand” poem which can be seen below.
I have had this poem hanging in my home for as long as I’ve lived on my own. It wasn’t until now that I really realized how powerful it would be to me. There was only 1 set of footprints “in the sand” for months after Payton passed, and they surely were not my footprints (some days there still are only a single set of footprints)!! You will learn to live with a broken heart. You will get to the point you feel grateful for the time God lent “his” child to you. This doesn’t mean the pain will go away. It will linger and follow you everywhere you go, but if you allow God along for the ride, you will survive.

5. Will I ever have true joy in my life again?
Yes, but not right away. If you’re like me, you may not allow true joy into your life because you may feel sad or guilty about enjoying life while your child cannot, or you simply cannot FIND joy in anything, as you are too broken. Eventually you may realize that your child is not jealous of you. Heaven is more joyous than we can ever understand until we get there ourselves. This earth is lame, if there’s opportunity for true joy, take it! Your child would want that for you! But again, not right away. You may be in a “fake it till you make it” state for some time.

As I said earlier, I can only speak for myself. Grief does not go away. It changes over time. I am not far enough in my journey of grief to know what changes will come for me in the future, but this is how the first year (and then some) has been for me. Everyone is different. Everyone finds different ways to push on without their child. But I do think we get 1 choice in the matter. We get to choose if we allow it to destroy us, or make us better. I have chosen that I will not allow this to destroy me. Why? Because that would be too easy. This loss is more than anyone should have to bear, it could easily destroy one, and it does some people. I think about my baby every day. I talk to him every night and periodically throughout the days. I still cry almost every day, but I’ve learned it’s good to cry. There is no shame in the love you have for your child and crying is how we show it, whether you cry alone, cry to God, or with your family or friends. I will end this with Revelation 21:4 And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.

If you are in need of someone to talk to, please feel free to reach out to me. I may be a stranger, but we may be able to relate and I love chatting with those who understand best❤

Photo: Payton in the sand, with his new wings. I know he just loves being an angel😇

Struggling hard tonight, missing my baby. Looking through pics of my “Fab 4”, the way it should have been forever. This was the first day of school before Payton was diagnosed. You can majorly tell in the first photo the tumor was there. I remember telling him “hold your head up straight silly”. I thought he had an ear infection or was being shy or quirky. It was the tumor taking away his strength on that side. His smile is really “off” too, because of the tumor. It must have been worse in the early morning because I never even noticed his smile being off until after he was diagnosed. Hindsight really is 20/20. Although knowing sooner wouldn’t have changed Payton’s prognosis, I still carry some guilt…I’m his MOM! How did I not notice it was this bad?? I’d give anything to have my baby back. Wish my husband was here. 3rd shift can suck a fat one.

One year ago, I was working in my craft room when my phone rang. It was Payton’s oncologist with his MRI results. I had so much hope that the tumor had shrunk. I could tell by the tone in his voice that he had bad news. He did not sugarcoat, he straight up told me that the tumor had grown and Payton was in progression with DIPG, and that things would start to go downhill fairly quickly. I’m sitting there, tears in my eyes, a lump in my throat, taking notes on the conversation so I can relay the message properly to Jason. I’m writing down things like “make memories” and “options to buy him time”. I felt sick, and defeated. This was the real beginning to the end of Payton’s life. Today, Payton would have been 8 and a half years old. We celebrated his half birthday last year, because we knew he would never see another whole birthday. Hold your babies tight, we never thought this would happen to our son, or to our family.
My post from a year ago:
Our hearts have shattered a little more today. Payton’s oncologist called and said his tumor has grown and he is in progression. He said that once these tumors start progressing, things usually go downhill fairly quickly. We have a couple of options that may slow down tumor growth, but will only buy time. At this time we don’t know what we’re going to do. We are trying to be strong for him but feeling pretty broken.

It’s like crawling through a dark tunnel that your body barely fits in. There is no end to the tunnel. You just crawl, and crawl, and crawl. You get tired of holding your head up, so you let your head hang as you keep crawling. There’s no point in holding your head up anyways,  there’s no end to the dark gloomy tunnel. Now and then there are tiny slivers of light that shine through little holes in the sides of the tunnel, but they only give you hope that you’ll get out for a quick second until the light rays are gone.  Sometimes you get so tired of crawling through this tunnel, you lay down, on your stomach, arms beside you, because there’s no room to get into a comfortable position and even if you did it still wouldn’t be comfortable in this tunnel. Sleeping is nearly impossible living in this one way darkness.  Your life in the tunnel is a nightmare, awake or asleep. You are always alone, although those you love are crawling through their own tunnels right beside you. You torture yourself with your mind,  thinking of anything and everything you could have possibly done differently to prevent your life in the tunnel, even though you know deep down nothing you could have done would have made a difference.  At times you become claustrophobic in the small area. You scream, you cry, you pound on the sides,  wondering if you’ll ever get out or if anyone will ever truly hear you. You feel like there isn’t any air, like you are suffocating. You think of the times before you entered the tunnel,  when things were great, you felt like life was going how you had planned, and colors were bright. But you can’t go back, there’s no room to turn around in the tunnel. You’re stuck on a forward path that you don’t want to continue on but you have no other choice besides giving up and staying still. You realize that the end of the tunnel is the end of your life but you can’t see where it ends because it seems there is no light at the end of the tunnel. It seems like you’ll never make it to the end, but you keep pushing yourself because you have to. You realize that you must accept that this is your life, and make the best out of it although it is a horrible place to live.

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 closer we get to Christmas, the harder it is to hold ourselves together. The tears come falling down everyday, at some point.  Payton and I shared a LOVE for Christmas. Just about every year, we would go to the tree farm soon after Thanksgiving and pick the perfect tree. Payton would beg to decorate it right away, but we had to wait for it to settle. For the last few years, only Payton and Maddi helped put the ornaments on the tree. This year Maddi and I put up a small, borrowed pink Christmas tree. It only has a few ornaments on it;  one a superhero ornament with a photo of our little hero in it, which Jason and Maddi bought for me. Normally by now is have set up my beautiful Christmas village, the kid’s stockings would be hung on the fireplace,  lights would be sparkling throughout the house, our Elf- Oliver would be hanging around somewhere, and there would already be lots of wrapped gifts under the tree. This year is different. Every year from here on out will be different.  The sparkle is missing, the spirit of Christmas is not in our hearts this year. I have promised myself that next year will be different.

 

I have found a new feeling inside myself I have never felt before…NUMB. This is a feeling that has actually been a comfort at times because I cannot feel this pain 24/7. It would kill me.

As the holidays approach, our hearts ache to celebrate with all of our kids.  Thanksgiving has always had meaning of thanks and family to me.  I have to admit, I feel a lot less “thankful” this year than I have in past years. Sometimes the sadness clouds my brain and heart so much I am bitter.  Payton loved Thanksgiving.  He especially loved mashed potatoes and gravy and dessert.  It hurts so bad knowing he will not be sitting at the table this year. Thanksgiving night the kids rummage through the Thanksgiving newspaper ads showing us parents what they want for Christmas.  The excitement in their voices is apparent as they find something really awesome. There will be an excited voice missing this year, maybe we won’t even do that this year. Everything has changed. Nothing is, or ever will be, the same.

We decided we did not want to get a tree, or celebrate Christmas at our house anymore. We would take the kids shopping instead.  Payton was the only one who believed in Santa Claus anymore, he was the only one who believed in the magic of the Elf on the Shelf. Ours was named “Oliver”. Oliver will stay in his box this year. The magic is gone from our home…I thought I might have another year, maybe two, of magic left in our home, and a lifetime of memories with ALL of my kids. Maddi is still only 11 and wants to get a tree and open presents Christmas morning, so we will do it for her. I know I can’t handle going to the tree farm without Payton, as that was something he loved doing, so we will have a fake tree. My anxiety is high,  thinking about pulling out the Christmas ornaments. Payton’s little hand print ornaments,  the bulbs with his name on them, and seeing how few he lived long enough to make will just send me into a crying fit. Even happy memories can send you to tears in grief.

Each year at Christmas time the kids and I would make and decorate sugar cookies for the kids to take to school and share with their classes. I no longer have a child in elementary school and the boys don’t care to do anything with us parents, but maybe Maddi and I will make some cookies to eat ourselves. All of my living children officially rhink they’re “too big” for Santa’s lap. Payton still loved having his picture taken with Santa. All of our traditions have changed. Every. Single. One. Everything just feels so wrong without our boy. Can we just skip the holidays this year?

Not only do I grieve the loss of my boy, but I grieve the loss of myself. I was the mom of a hectic home of 6,  our home is now quiet and rather lame without our wild little boy running around. I imagine this is somewhat the feeling parents get when their kids “leave the nest”, except one of mine is never coming back to visit, or calling to borrow money, or asking for advice, and he didn’t “leave gradually” like they do when they’re older- slowly becoming independent and not being home as much.

So I wait. I wait to someday become a grandma. I wait to find true, full happiness in life again. We have happy moments but true happiness has become a thing of the past.