A Year (& then some) After Child Loss

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 angelūüėá

My Fab 4

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‚ĶI’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.

Reminiscing on Bad Times

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.

My Metaphorical Expression of Grief: Tunnel of Grief

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.

Eff you 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-BombsūüĖē).

 

I hope your New Year is happy. I plan to drown myself in alcohol tomorrow night (don’t judge, tears and champagne mix well togetherūü•ā) 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 lotūüėė

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Numbness

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.

Holidays

FB_IMG_1510715648568.jpgAs 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.

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Diagnosis Day

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.

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Changes in myself

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.

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Guilt

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”