Payton Strong

The night before Payton was diagnosed, it was late, the nurse informed us there was a man who needed to speak with us. He led us to a small room with a table and 3 chairs. We sat down, and he started. The look on his face said it all, bad news. He could barely look us in the eyes. He seemed to study the fake wood looking table as he said “There is a mass on Payton’s brain, it’s not good”. Jason and I were in instant shock.  I looked at my husband and literally watched his entire body slump, as the life drained from his body. I cried, we both cried.  I mustered the courage to ask, “How big is it?” The grey haired man replied, “It’s big”, in a serious low tone. This sent both Jason and I into a frenzy. He then told us the oncologists would be in in the morning to talk to us more and explain in detail the mass.  Jason’s fists slammed down on the table. I do not know what we were thinking in that moment, but I said “I need to go, we need to go be with him”, and we did. It was in that moment I began looking at my son, my youngest child, in a different light.  After Payton fell asleep Jason and I talked. We tried to be hopeful. I remember telling him, “let’s not panic, he may have to have brain surgery, and it will be a long road, but he will be okay”. Who was I kidding? I was panicking as well. Jason ended up having to go to the ER at the hospital to get something to calm his nerves, as he was vomiting and feeling like he was going to pass out.

At this time,  my biggest concern was that my 7 year old son would need to have brain surgery. Brain surgery is major, and scary to think about!

The next morning, the oncologist came fairly early. There were 3 other people with him I believe. My mom and sister had come in late the night before so they were there too. The Child Life specialists took Payton out of the room. The oncologist told us that Payton had a mass, a tumor, called Diffuse Intrinsic Pontine Glioma, in his brainstem. Jason asked if it was cancer.  They said “Yes, it is, and these tumors tend to grow rather rapidly. This tumor is a bad one. About 99% of children succumb to this tumor within 9 months. There is no cure and the treatment has not had much, if any, progress in at least 50 years. What we usually do for these tumors is radiation and administer steroids”. In tears,  I asked the oncologist, “How long does he have?”, the worst question any parent could need to ask. He replied, “If we do radiation, he could have 6, 9, or maybe even 12 months,  we really can’t say for sure, it all depends on how the tumor reacts to the radiation. Many kids have what we call a “honeymoon period” after radiation, where they have no symptoms for a period of time”. I then asked, “What if he doesn’t have radiation?”. The oncologists said, “He might not survive 2-3 months”. We were in disbelief.  How could this be? He was such a healthy, active, child who was full of life, but he was actually dieing more quickly than the rest of us. I cried, sad tears. I became angry, this oncologist who was probably in his late 50s, early 60s, had lived this long life, and was telling me my child would never see teen years. I wanted to take Payton’s place, I would have given anything.

We couldn’t give up hope, but at the same time the prognosis,  6-9 months, left us feeling pretty hopeless.

When they brought our son back to his hospital room, I remember I could barely look at him without my eyes filling with tears.  I just wanted him to be ok, for all of this to be a bad dream. I remember literally thinking, “maybe this isn’t real, maybe they looked at the wrong kid’s scans”, but it was real, and less than 6 months later, we would tell our once healthy, energetic son, goodbye for the last time, as he slipped into heaven.

As I scroll social media tonight so many things run through my mind. I realize my thought process is not the same as it used to be. I feel I’ve become less empathetic for some things, while more empathetic for others.

Many parents are sad about their children heading to the first day of school. I am sad that one of mine will not, EVER AGAIN. I wish their sadness was mine.

I have more cancer parents on my friends list than not.  That in itself should tell you something.  With childhood cancer awareness month in tow, I see many people spreading awareness…some are my family and real life people I know.  Most are cancer parents.  Most have lost their children to the evil cancer.  I do wish childhood cancer awareness got the publicity breast cancer does. Wal Mart has a giant section of pink shit for breast cancer awareness already. NEWS FLASH: Breast Cancer awareness month is OCTOBER! I was happy to read that MLB is going gold for kids. I’m glad someone cares. I used to support breast cancer, I love pink, but never again. They have their funding. I would give my boobs to have my child back ANY DAY! Hell, I’d give my life for my husband to have him back. 1 less person in this pain would be a little better I guess.

One cancer parent friend is celebrating her son’s birthday, at the cemetery.  That’s no place to have a party, but her son is buried there because cancer stole him from her. He turned 6, in a graveyard.

Another is crying because she has to send her daughter off to college. I say “she’s crying because she GETS to send her daughter off to college”. Cry me a river,  it will never be as deep as the one I am crying.

One friend is trying to raise money for a dog.  It’s a pretty good chunk of money. Now, I love my dogs, a lot, but my mind thinks “wow,  that could help a child,  a human being”. Is it low of me to think that way? Maybe.  Probably.

The article I read about the West Nile Virus gets my mind going to dark places. I think “maybe it will come through and sweep us all”…a death wish for the world against their will. Evil? Probably, but my thinking is “if it kills us all, my kids wouldn’t have to live without me”. I have to admit I was slightly disappointed to learn West Nile Virus isn’t as deadly as I always thought it was.

The “after” me is not right in the head sometimes, or maybe she’s more right in the head than she’s ever been. I know one thing, I’ll never “belong” in a world of non-bereaved parents again. I am different.  My mind has closed some doors that used to be open wide. My priorities have changed, and nothing is taken for granted in this life anymore.

I’m off to bed. I GET to get my 3 kids off to school in the morning for their first day back to school. I will not cry for my daughter starting middle school. I will not cry for my oldest starting his senior year. I will not cry for my middle son being a sophomore. I will cry for the one who never will.

Photo: the last “First day of school” photo I will ever have of all 4 of my kids.

Some nights I just lie here in my bed and cry. I cry for hours. I want my baby. So many thoughts creep into my mind and I cannot escape them.  I have no doubt I am dealing with some form of PTSD. 

The memories of Payton’s final moments completely destroy my heart and soul. Leaving the room to talk with the hospice nurses will forever be embedded in the “guilt” section of my mind/heart. I will never be able to forget Aunt Karen coming to get us.  I thought Payton was asking for me (as he did every time I left the room, if only for a minute). Walking back in this room, seeing my baby struggling to breathe, and hearing the sound of the “death rattle” coming from my sweet 7 year old little boy, is something that rarely leaves my mind. I think to myself “We weren’t with him in his final moments of consciousness”. I can’t help but feel he did not know we were there with him. That’s not how it was supposed to be. None of this is how it was supposed to be. I hate myself for leaving the room. I should have been there. 

Then I think about his last days in the hospital and how he cried, tears and all, because he wanted to go home so bad. We should have brought him home sooner. Nothing they were doing was helping him anyways. We wasted the last days of his precious life in the hospital when we could have been home with him, snuggling, watching Blue’s Clues, and reading Magic Tree House books.  I am glad we brought him home when we did…a day later and he would have passed away at the hospital and I don’t know if I could deal with that at all. In my bed is where I feel him most. He was my little snuggle bug. I miss him, I know I say that a lot, but I just miss him so much and there are no words to capture this kind of “missing” your child. 

Payton loved taking “selfies”

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)

https://www.facebook.com/events/1810668622578132/?ti=as