Payton Strong

There are so many things that are constantly on replay in my mind.  The things that really haunt me are the things Payton was looking forward to, but never had the chance to experience. 

Payton wanted to live. He wanted to play baseball. We promised him we would go to games in his honor. We only made it to one game this season and my gosh it was hard. I think I spent an entire inning crying in my car. He should have been there. I could picture him on the field,  so excited when it was his turn to bat. 

Some things he wanted to do are smaller, yet so big to me now. Payton developed a LOVE for Legos during the last 6 months of his life.  He and Jason put them together at least a few times a week. Just 20 days before he passed away, he and I went on Amazon to shop for some new Lego sets. We purchased 3 sets. They were all pretty big sets and Payton wanted to surprise his dad with them. When they arrived, they quickly put together 2 of the 3 sets. The 3rd was a house, a lake house. Payton decided he wanted all of us to put it together as a family. Shortly after this decision Payton’s health took a turn for the worse and he passed away. That Lego set is sitting in the box in the exact place it was when we got if in the mail. It hurts me so much that we never got to put it together with him. 

When Payton was in the hospital, he loved me reading to him. One day during his week long stay, I read 8 Magic Tree House books to him. He would open his eyes just for a second to see the pictures in the book. He loved Magic Tree House books since he was a kindergartener. When we got home from the hospital, the hospice nurse said she had a bunch of Magic Tree House books she would let us borrow. I read him all but 4 pages of “Judy Moody The Doctor is in” before he was gone, never to be read to again. The book is still marked in tbe same place, with a batman sticker he “won” for being so good when he got a poke. He passed away before the nice nurse had a chance to bring the Magic Tree House books over. I loved reading to him, and I know he loved it too. 

Payton would say things to me like “When I turn 8 can I play football?” Or “When I’m 14 can I get a phone?” Or “When I’m a grown-up I’m moving to Florida.”. He wanted to turn 8, he wanted to be 14, he wanted to grow up. His birthday is in 6 days.  He should be turning 8 like he was so excited to. 

The hole in my heart is gaping. I know it will always be there, just like my sweet boy will always be there. 

The last couple of weeks have been pretty good, the best since Payton went to be with Jesus.  I have thought about him everyday, at least once an hour but could do it without falling apart every time. 

It feels like life is just a blur sometimes.  We’re just going through the motions, one foot in front of the other,  dealing with things as they come. We do the things we feel obligated to do each day, go to bed, only to get up and do it all over again the next. 

The realization that saving “box tops” is a thing of the past now that I don’t have any elementary school kids anymore brought me to tears today.  It can be the silliest things that just rip you apart. 

I think of Payton’s voice, how I just want to talk with him and hear him say “I love you mom”. I think of his hugs and want a squishy hug from him so bad it literally hurts. 

Payton’s birthday is in 9 days. The thought of that made my stomach turn upside down today. I could have vommitted. He should be turning 8. He should be asking me everyday “mom how many days is it until my birthday now?”. He should be deciding what he wants for his birthday and what theme he wants his party and who he wants to invite. Instead we will be celebrating without him and he will never turn 8, or 9, or anything but 7. 

I try to tell myself it’s a good thing that he doesn’t have to endure the cruelty and difficulties of the world that comes after growing up, but it doesn’t justify it no matter how much I wish it would. 

Grieving can be very lonely. Although we know our families miss and love Payton so much, I don’t think they understand the depth of our pain, nor should they or would I ever want them to. 

It is terrifying to me that we only had Payton for 7 years and that is such a short time compared to the years we could continue to live. It feels like we could unintentionally forget things about him and that is very sad to think about. 

I hate to admit that we are slightly adjusting to life without him….it feels wrong.  The adjustment is forced and doesn’t feel good, it’s just happening.  It will never be right but maybe healthy. Don’t mistake that for “we are all better” or “we are happy now” because that is far from the case. 

We have some DIPG fundraisers coming up and I hope we raise lots of money and awareness. There are so many kids fighting this horrible disease and they need a cure. It makes me sick to think there may never be a cure in my lifetime. 

Cancer mom’s have a special sort of bond.  They bind together like cement when it hardens.  Sometimes we “Cancer moms” feel so alone and need each other like toast needs butter. We understand one another, like no one else can.

To be the mother of a child with cancer is to be 100% selfless; to give your entire self to your child. These moms quit their jobs .  They quit their hobbies. They quit their friends and sometimes family members. The only thing that matters to a cancer mom is caring for her sick child, in hopes of getting them better.

If they can’t get their child better they do everything in their power to make sure their child feels life is worth living. They play games in between tube feedings and dressing changes.  They use encouraging words to keep their child’s spirit aloft…even when they themselves are dying inside. They try to make light of an IV poke or blood draw. They turn their faces to let out a few tears, to spare their child any more discomfort than they are already facing.

The cancer mom club is no stranger to administering more drugs to their child than they have ever ingested themselves, and sometimes this is a fight. These moms sometimes spend an hour or more compromising with, bribing, and often begging their child to take meds. The child does not understand the importance of taking so many pills, having so many shots, or having their ports accessed constantly. As a mom, you don’t want them to have to understand.

Radiation and/or chemo treatments become the “norm”. You spend many nights in hospitals when your care at home isn’t enough. You step into the hospital bathroom countless times to cry your eyes out, in pain seeing your child in so much pain.

You watch your child change; physically and emotionally. Your child’s hair falls out. They lose or gain a massive amount of weight, usually very quickly from the medications and toll cancer takes on their little bodies.
Cancer moms do more research than a private investigator. They look into any kind of treatment that may have helped a child with a similar diagnosis in the past. They stay up late, searching for a magic pill or salve or ANYTHING, SOMETHING that might help their child. They reach for and grasp onto any hope by reading stories about other children who have beat the odds.

Many cancer moms are told their child’s cancer is “terminal”; that they will die.  In fact approximately 250 children per day around the world die from cancer .  One day that will be the terminal cancer mom’s child and it will more than likely happen within 5 years or less.

This knowledge brings anticipatory grief to these moms. Anticipatory grief is grief that comes on when you accept the reality that your child is not going to outlive you. Those who accept this reality try to somewhat “prepare themselves” for the death of their child, which by the way is IMPOSSIBLE. This brings on an array of emotions. Keep in mind though, your child is still alive and needs you to care for them, to be strong for them at your weakest. You feel the need to “make memories” and make sure your child knows how much you love them. You may also push this grief aside and let hope lead the way. However hope is compromised over and over again, by disheartening MRI results, low blood counts, or a new symptom your child presents.

The cancer mom prays. Even if she doesn’t believe in God, she prays. She prays there is a God that will save her child. If she does have faith in God, she pleads with everyone she knows to pray for her child.  She is completely desperate for her child to be okay, to live a long life, to beat the odds, for a miracle. Their belief can be destroyed by cancer, even if just for short periods.  Or their disbelief can be comfirmed in their minds as cancer takes over their child.

You hear the words “hospice” and “DNR” in the same sentence as your child’s name. You cannot believe your ears and want to smash your fist into a wall, or into the person saying these word’s face.

When you are the mom of a child with terminal Cancer, and your child nears the end of his/her life, you are there.  You watch every move. You study every breath.  You never want to let go. You wish you could go too. You kiss their face. You kiss every inch of visible skin. You tell them umpteen million times, in a hundred different ways, how much you love them. You know your heart is about to be ripped the rest of the way out of your chest.

If you are the mom of an Angel who had Cancer, you already know what comes next. If you have read this far and not lost a child to cancer, I will spare you the rest because it is too painful for me to go there at this time and you don’t want to imagine this pain anyways.

Bereaved parents of childhood cancer are strong, not because they want to be, but because they have been through things that are so horrific that nothing, I mean NOTHING could break them worse than they already have been broken. But don’t tell us we’re strong, because you don’t know what kind of “strong” this is and the truth is we feel weak, sad, and not strong at all- rightfully.

The days since Payton flew to heaven with the pink and red Power Rangers (as my 2 year old nephew says), have been long and unimaginably difficult. It’s still so hard for me to believe my little guy is gone and I will not see him again until I get to Heaven. 

I think back on our life as a family often. Back in 2007 Jason and I had decided to have just 1 more child. After going off birth control, it was not easy to conceive. I wondered if I would be able to become pregnant. After 8 months we got the best news that we would be able to complete our family. Hard work had paid off…no pun intended😁

  Neither of us have had anything given to us and we have worked hard for everything we have/had.  Almost 5 years ago, after many years of pushing ourselves and each other, we were able to buy our first house. I remember coming to see the house. The kids were all so excited to all have their own rooms, especially Wes and Jordan, after sharing for so many years. Payton was just a little toddler and didn’t care which room he had. He just loved the space in the house, to run freely. 

A couple of years later, I started my home business making hand stamped jewelry.  Once that took off we were in a great place. We both worked hard and made ourselves a comfortable little family in every way. We had life made. We had our beautiful kids, our home we loved, awesome families, finances set, and a good relationship for the most part. 

We still have all of those things, yet we don’t at the same time.  We could both drop our jobs and and be depressed…we work because we have to. We could sell this home and buy a much smaller home.  It is so empty feeling, with Payton gone and the boys getting older so they’re not home much. Most of the time it’s just Maddi and I here (Jason sleeps days so he can work nights). Our kids are growing up so much and the childish feeling has completely left our home.  Our families are still great and we don’t know what we would do without them.  Our relationship is still good, but in a different way. We have both learned to accept and respect eachother’s grief and love one another through it. There is no guide telling us how to do this and all we can do is try our best. The little things that used to “matter” don’t matter anymore. My new motto is “Worst things have happened” and I live by it. I hope there is never another moment in my life that I cannot use that motto. 

When the lady at the gas station asked me this evening “How are you today?”, I was able to answer “good” and that be the half-ass truth. In all reality I am not very good but I’m a tiny bit good and that’s better than not good at all so I gave her the sugar coated version. 

Life goes on…or does it? Sure we’re alive, but many days it doesn’t feel worth it. I’ve realized that you can live, in the sense of being alive, without really living. I can only hope someday we will feel like we are truly living again, it’s what Payton would want. I taught him about “patcients” before he passed away (we got a good laugh out of me telling him “You know how sometimes in the restaurant dad says “What in the hell is taking so long?”…well that’s because he’s not being patient”) so I hope he is being patient with us while we learn our way. 

 

I recall a text message between my friend (who is also a bereaved parent #aubrey) and I, where I was sick. Payton had been gone for less than 2 weeks. I told my friend I was sick and grieving and the two didn’t go well together.

It’s now been 16 weeks since my baby boy went to Heaven, and I’m realizing that grieving doesn’t go well with anything, but it comes with EVERYTHING. You can be having drinks with a few friends, laughing even, but the grief is still there, in every swallow of your drink, in every silent moment. You can be celebrating your 17 year old’s birthday (happy birthday tomorrow Wes..mom loves you), and the grief lingers inside of you like old Avon perfume on your shirt that should have been thrown out years ago…but Grandma was saving it for the collector’s value.  The thing with grief is, although there is no collector’s value, there is value- it’s measured by love. The love you have inside your heart for your child or loved one will never leave, nor will the grief you carry for them.

Grief doesn’t go well with dinner, birthday parties, a day at the beach or bedtime, but it goes with you everywhere.  In every moment the pain of grieving my son is there. There is not a day I do not cry. Some days there is not an hour I do not cry. Sometimes I cry because I have flashbacks of the day he died. Sometimes I cry wishing I could see him, kiss him, hug him, and tell him I love him. Tears flow when I’m driving alone and my thoughts get in the way. Some days I cry when we go to events he would have loved, or loved in the past. Yesterday I cried because I moved the lotion we used on his legs for the horrible striations the steroids caused, and I caught a whiff of the scent which just about brought me to my knees unexpectedly.  Today I cry because I do not know how to accept that our lives have been forever changed and nobody really knows us anymore..hell we don’t know ourselves anymore. Grief does not expire but my hope is we will eventually accept ourselves for who we are, grief intact.

This is a story, a memory, that I have not shared with everyone. It is a very special memory that brings both heart break and warmth in my broken heart. 

About 2 weeks before Payton passed away, I took all of the kids shopping. Payton needed clothes (again), as the steroids were causing him to outgrow everything very frequently. We were in TJMaxx when I saw a friend who stopped to chat. During this time, Payton had gotten out of my sight which I did not like because of his condition. I asked my daughter, Maddison, to go find him and hold his hand. She found him at the jewelry counter and soon they came back to me. 

When we got home, he kept saying he needed his dad to take him to the store to get something for me that he had picked out. Payton hinted around for a few days, asking me my ring size and verifying he remembered it here and there so I had a feeling it was a ring but never told him I knew. 

He had a love for online shopping and picked out a ring for his dad that matched the ruby ring Payton himself wore religiously. 

Payton was shortly after admitted to the hospital and very sick.  We made the decision a week later to bring him home on hospice, to pass at home.  The day we left, he insisted we stop at the gift shop. I promised him we would.  As we walked through the shop filled with toys and trinkets, he meticulously picked out something for each of his cousins and 2 of his kid aunts. Upon checking out he said, “And I’ll take those socks too”, referring to the superhero ones I had pointed out when we had first walked in. I laughed and grabbed the socks. 

The ride home was peaceful for Payton since we made sure he had Ativan right before we left the hospital .  My husband sat in back with our sweet boy and I drove. I cried most of the 2.5 hour drive home. We were taking our 7 year old son home to die.

When we pulled in the driveway and woke him up to tell him we were home, he was so upset.  “I wanted to go to the store!”, he cried. I felt horrible but I didn’t have the heart to tell him “You will never go into another store, ever”. We told him we needed to get settled in the house. 

That whole day he didn’t stop talking about the store and how he needed to go get me something.  We talked him into looking at the TJMaxx website to see if he could find something.  My mom looked through pages upon pages with him, no luck. He was very adamant about getting me a certain ring. During his online shopping he did however find rings for his 3 siblings which he ordered. These rings came after Payton passed away. 

Someone had the idea of sending someone to the store and letting Payton FaceTime them to find the ring he was looking for. So the next morning our oldest son’s went to TJMaxx and FaceTimed Payton.  He said no to all of the rings until he saw “the one”. His eyes lit u p and he excitedly pointed saying “THAT’S THE ONE!”. They bought and brought the ring home. I still had not seen it. Later Jason asked Payton if he wanted to give me my present. He said yes. Jason put the ring in Payton’s hand and I held my hand under his so he could easily drop it into my hand. The ring was beautiful. I cried and told Payton it was the most beautiful thing anyone has ever given me and thanked him like crazy.  It has a beautiful red stone, just like his favorite ring and the one he picked for his daddy.

Several of us have agreed that after he gave me the ring, his mission here was done.  He gave up the fight. He knew he had given each of us something tangible to hold on to in his memory.  I have never taken my ring off and I don’t plan to ever take it off. It still amazes me that even in his last hours, he was thinking of everyone else at just 7 years old.  

(Photo taken by my amazing friend , Nikki Cooper of Angels Touch Photography)

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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.