True Confession #5: Out of the Darkness

I remember the call like it was yesterday. It’s amazing the details that stand out in your brain that are imprinted on your heart forever. My dad was very sick. We had been told for weeks it would be any day now. I was a new mom. I was going to Grad school, working two jobs and had an 8 month old baby. I didn’t have any other choice than continue to do life, even though my life was falling apart around me. 14 Months prior, my dad was diagnosed with stage 4 Glioblastoma. This is an extremely rare but very aggressive from of brain cancer. There is currently no cure and the longest person that has lived with this disease only lived 5 years. The diagnosis was very grim. He immediately went into surgery to remove what they could.

That was the day we lost my dad.

See, brain surgery does something to a person. He came out fine. Recovered well from the surgery but the parts that made my dad, my dad were gone. He was a shell of a person left to struggle through this disease. Then came the chemo and radiation. As he lost his hair and about 60lbs he still continued to fight for the time that he had left. He so wanted to meet his first grandbaby. They decided to do another surgery at about the 8 month mark to give us some more time. He recovered well from this surgery also but a little bit more of who he was got lost. We knew that this was the last stop before it all went downhill. It’s not that we weren’t hopeful we just knew the odds of this disease. He continued to decline throughout the months.

We experienced our last Christmas together, but to be honest our last Christmas with my dad was the Christmas before. He got to see his grandson be born. My son got to see who his Opa was. Around the 13 month mark he was put on hospice. We were blessed enough for him to do Hospice in my parents’ house, we got to spend so much time connecting as a family and loving on my dad. It was beautiful, and it was heartbreaking. I do not wish on anyone the pain of watching your parent waste away until there is nothing left. My husband and I were having dinner at our friend’s house. We had chili. I remember what the dishes looked like. My mom called and said it was time; that his breathing has slowed. See I lived an hour from my parents so we rushed to get stuff together and left. I knew that it might be possible that we would be spending the night so we went and bought diapers and formula; I was still breast feeding at the time but because of the stress of the situation my production had begun to slow. We went to my parents’ house and got to spend the rest of the afternoon and evening saying goodbye. At this point my dad was in a coma and not coherent but it was such a special time. We all sat around and told stories of who he was and how he was always the first to make a joke.

I went to sleep knowing that he would probably not be alive when I woke up.

I woke up straight out of sleep at 4 in the morning, my mom called my phone from downstairs and told me that he was gone. She had heard his last breath. You think that it’s weird seeing a dead person. It’s not. We as a family got to sit with my dad’s body for 7 hours. Loving on him. Loving on each other and relishing in the time that we had left. Some would say that sounds morbid but I look back and it was beautiful. So beautiful. People came and said their goodbyes and wrote messages on the blanket he would be cremated in. When it was time for the Coroner to come get the body that was the hardest part. We all had done well keeping it together but something about watching a body be wheeled away from you, knowing that you would never get to see them again broke us. I am the oldest of four and felt like it was my responsibility to keep it all together. My brothers were just teenagers at the time and I didn’t know how to help. I am thankful that my son was too young to know what was going on. My Grandma came and cooked breakfast for us. No one was hungry. My youngest brother who never shows emotion broke down and sobbed.

The hardest thing was knowing there was nothing I could do to take this pain from any of us.

Nothing.

Here we are, coming up on 5 years this week. My emotions still sway heavily from sadness, to feeling numb to being angry at all the things that cancer stole from our family. It eventually stole my mom’s health as well who passed 2 years ago. It stole part of the joy from my pregnancy, from my son’s birth. It stole from the milestones my children will hit that their grandparents will never get to see. My brothers’ marriages. My college graduation. So many things.

But I am also able to see the immense blessings from this experience.

My perspective giving me grace to others. My experience showing me how to love on others in this situation and overall the year that we got to spend as a family coming closer to each other. In all of that; there is immense beauty in the ashes. We lost him too young. He was only 52”

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I saw a movie recently that posed the question – how do you stop a moment in time? I had only one thought – lose someone. Lose a grandparent or other family member. Lose a child. Lose a friend. Lose a person who means more to your heart than you could ever tell them and you’ll find that one moment that brings you back to a place where you can see and feel everything. I’ve lost a parent to cancer also and while I remember how hard it was to see her being taken from us, the things I remember the most are the things that will keep her with me. She laughed so hard at herself that you couldn’t help but laugh with her. She was so open and welcoming to people and was the first to try to feed you if you came for a visit. The house was always ice cold but she had sweatshirts and blankets everywhere. We watched her go, but we saw her live first.

They always go too soon. Slow down and live a life you can say was done right

#TeamJonah

 

True Confession #4 Pt.2:Out of the Darkness

We discussed this confession already, but it’s so impactful that I needed to unpack something else. Just to jog the memory, here it is:

“I feel like no one really thinks about a loss for future their children. My parents lost a child when I was little, and knowing they lost them makes me feel guilty. I bet they would have been a better person, who may have done more than I ever could. When I am really sad, sometimes I ask God to switch places with the child, because surely he meant for me to die and not them. I want to be two wonderful people inside the same body so I can give my mother all of her children’s love. The thought makes me feel like what I want to become is unreachable. How can I ever meet those standards? I don’t hear anyone speak about it, so here it is. I hope I am not alone in the ‘It should have been me’ syndrome.”

If I can take a step back and call out something that strikes me, I want to point out something in this confession that is a perfect illustration of the power that grief and love have together. Take a look at some lines I pulled from the quote above.

“…and knowing they lost them makes me feel guilty.”

“…because surely he meant for me to die and not them.”

“I want to be two wonderful people inside the same body so I can give my mother all of her children’s love.”

“How can I ever meet those standards?”

Grief is real. Grief brain is a real thing, having a lasting impact on the way we think and view the world and guilt because it wasn’t us is as natural as crying that they’re gone in the first place. Taken in isolation these seem to be on the hopeless end of the spectrum, holding on so tightly to the absence of one who would have had their own special impact on the world. Understanding though that we grieve hard because we loved harder, these are all love statements. The desire to carry their spirit forward and building up all of the things we envision them to be. The need to fulfill the things a mother would want for her children. The frustration of trying and trying to be more; to DO more.

I can’t tell you how many times I’ve said a prayer in anger over the last two years, asking God why my children aren’t running and playing with me in their place. Asking why Nicholas reaches down from Heaven instead of a bunk bed when I was a kid. This is real life, and it’s ok to be in that place – just be careful not to view it as the end of your journey; we can be a part of their legacy, but we can’t shoulder it for them.

We have a hard time talking about loss – and all grief, really – for anything more than just a couple of days before we’re told it’s time to move on and it’s 20-freaking-17. I can’t imagine how isolated our parents must have felt thirty-plus years ago, having to fight through this without internet support and closed groups where they can say things they wouldn’t dare in public. Seriously, it hurts my heart to think that my own parents walked this journey without the very things that have brought me some sort of sanity. They were so strong and resilient, and how amazing they are now while dealing with it again in our losses astounds me. They’ve come to some sort of terms with the things that have happened in their life and chose to continue moving forward, which is how we’re here in the first place. That’s the kind of example I’ll fight to be for all of my life.

To moms and dads reading this while taking on the daily fight to keep sight of all of their children, we appreciate you. We love you for your struggle and your strength, for your example of never being too far, for loving with everything you have and not everything you have left. For being mom and dad to all of your children when you can only see and hear and touch so many. And for embodying the power that comes from a struggle as deep and raw as this.

I want to thank you again for this very special submission, giving a voice to a void that is often overlooked. We’ll be continuing our True Confessions series into April so lets set free the things you’ve been holding on to and heal some hearts together.

Happy Birthday, Sweet Jonah

March 16th, 2017. Somehow we made it a year since he was born and I have no idea how it happened; I’m not sure I participated in the world beyond showing up on autopilot, paying bills and making an occasional appearance with friends. I’ve gone around in circles, chasing my tail over what to say here because nothing feels right; I should be able to tell him right here in front of me. We should be able to celebrate together as a family with cake and decorations and a theme that would make him smile so hard he’d close his little squinty eyes. The only gift I have for him today is the same one I’ve received from him each of the days since I held him – sharing lessons I’m learning as his daddy, hoping to touch just one person in a way that carries his legacy forward.

Through everything, I’ve learned that I don’t have to be the same person I was yesterday let-alone who I was before we lost our two children together. I’m not anywhere near as productive – personally or professionally – and I certainly don’t have the same level of patience that I used to. I’ll never be who I was before my children but it isn’t because of grief or loss or any of that stuff; it’s because I’m a dad now. It’s something that I’m proud of it, all this other baggage be damned.

I’ve learned that grace is one of the most important things we could give, be-it for myself or for others. It isn’t about forgiveness, understanding, or accepting but about room to grow. Each day has its own lessons and struggles and I’m stronger today than yesterday because I’m allowed to heal my heart through messages sent on Jonah’s wings.

There are things that I’m somewhat grateful he’ll never have to experience like the rest of us. Mending a broken heart, in love or in friendship. Discussing racism and prejudice, and how to combat them in today’s world. Holding onto integrity when it’s the last thing you want to do. My heart burns with the fire of a thousand flames to watch him grow into the kind of man who builds bridges while others around him are being torn down, but I’ll gladly settle for watching his spirit give a voice to people who felt it had been taken from them. Nothing will ever fill his void, but I hearing his voice jump from these pages gives flight to my soul.

I understand a relationship with God differently than I used to. Where I had been introspective and thankful, I am now angry but still hopeful. The premise that being in Heaven is better than in his parent’s arms is conflicting – while nothing could be better than in the arms of our maker, I don’t know that I would ever be glad not to have him in my arms. I clench my fists in rage while I raise them to the heavens, thankful to have such a God who heals him in a way I never could but broken hearted that I will never get the chance. I pray with a frustration that is ever-present even while I’m listening for just a glimpse of my son in response. The days are hard and many are long, but my faith will carry me through in both sunlight and in rain. A love between father and son is strong, even more so when it’s a son and the Father.

More than anything else though, I understand the bond between parent and child. I realize how hard we all work to do the best thing for our children and how we all pretend to have an idea of what we’re doing, whether they’re here in front of us or in our hearts. Jonah has brought such depth to my soul in this last year and has helped me find ways to deal with grief I have held onto for most of my life, and that’s a gift I’ll never look beyond. He was with us for 37 weeks. We held him for six hours. His lessons carry on forever.

Happy Birthday, my sweet Jonah. I’ll never stop loving you

True Confession #4: Out of the Darkness

“I feel like no one really thinks about a loss for future their children. My parents lost a child when I was little, and knowing they lost them makes me feel guilty. I bet they would have been a better person, who may have done more than I ever could. When I am really sad, sometimes I ask God to switch places with the child, because surely he meant for me to die and not them. I want to be two wonderful people inside the same body so I can give my mother all of her children’s love. The thought makes me feel like what I want to become is unreachable. How can I ever meet those standards? I don’t hear anyone speak about it, so here it is. I hope I am not alone in the ‘It should have been me’ syndrome.”

First, let me say this – you’re absolutely not alone. There were two main goals in this project – providing a safe space where we can share things that have been on our hearts for too long and giving a way to recognize that while we feel like we’re alone when these things surface, they really are much more common than is recognized. Being a rainbow baby has made me wonder many of these same things. In what ways would Nicholas have impacted the world? Would I even be here if he had made it? I’ve even wondered if I was enough to make up for that loss. Now – after losing children of my own – I have more pieces to the puzzle. Nothing in this world can make up for the loss of Luke and Jonah just like it couldn’t for Nicholas or for your parent’s little one. We wouldn’t want to do anything that would take the place of our love for them, and from my (now) parent perspective it isn’t about being enough or making up for something that was lost anyway.

At some point, a perspective shift helps a realization here that has helped me a million times over in trying to reconcile this as a child, sibling, and parent of lost children and the difference was subtle, but real; I stopped trying to figure out how to be all the things they could have been I realized that I am the way I am because of them. I am a part of their legacy, having an impact in ways that could never have happened if it weren’t for them. Several people have sent in their stories and confessions, hoping to help others and give some closure which leads to a question I have asked myself lately – if Jonah was here today, would I have had the strength and insight to do this in the first place? If I’m being honest I could never say yes. I’d be taking pictures and playing and preparing for a little boy’s first birthday party where I can see and touch and hear him. Jonah’s physical absence has led to such a surreal movement in my heart that strives to be all the things I would want to be for him. This isn’t my legacy, it’s his. I can be part of it and carry it forward in a way that honors his life beyond his death. I can help to participate in the change he would have helped create, one step at a time.

We’re just a day away from Jonah’s birthday and will keep this series going through March and into April – as long as hearts are being lifted. Send me a private message if you’d like to contribute, and we’ll help people together. #TeamJonah

True Confession #3: Out of the Darkness

“I want more than anything to show people what my baby looked like. There is such a stigma around death, and pictures of dead people – babies in particular – are among the most uncomfortable things you can see… but it’s all we have. Our baby wasn’t born living. We don’t have pictures of smiles and toys or videos of songs and laughs, we have feet and hands and hair of a child the world will never know. Being caught in a world that doesn’t want to see your baby is heartbreaking.”

This is the world I live in too. Not only was Jonah not born living, smiling, and crying, but he was disfigured. Our son had one eye that was lower and smaller than the other, ears in a lowered position, and a bilateral (dual) cleft lip. He had one foot and ankle that didn’t form correctly. He had spots on the top of his head that didn’t fully form. Because he passed before he was born he was always darker in color, more pink/purple like a scar when it’s cold out. And I struggle with sharing pictures of him because of the nature of the situation. We have a photo album with his pictures and I have something I made last summer that is in waiting to get put up on a wall, but you won’t find pictures of my son online (almost) anywhere.

To be perfectly honest, I’m not sure I know which side of the fence I’m on almost a year later. What I do know is that we all have different levels of comfort with it and we all handle these things differently. If you want to share pictures but haven’t yet because of the popular opinion online – and excuse me for a second here – fuck them. SHARE YOUR PICTURES. Be proud of the life you created and the joy that fills your heart because of them, no matter how old or young they were. If you’re holding them because of the opinion of someone close to you or because you aren’t really sure what your heart says about it (like me), take your time and listen to what is there. Nothing says you have to, and nothing says you don’t.

Because of Jonah’s skin color the only picture I’ve shared – one of his left hand in all its fuzzy baby glory – is in black and white. I’m still not at the comfort level to share color photos of him, but below is a picture I haven’t shared before. It’s of both his cubby arms and hands, so it still isn’t anything world changing. But he’s mine and I’m proud of him, so… (here it is again) fuck ’em.

jonah-hands

I love you baby boy, and I’m proud to be your poppa #TeamJonah

True Confession #2: Out of the Darkness

The below is all one true, heartfelt confession. Read with compassion.

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“Right after high school I moved to the beach with my cousin, my parents were separating and I felt like there was nothing going right at home. Once I was there for a while I met a guy, he said all the right things and made me feel special and like I was the only girl in the world, boy was I wrong. Shortly after us dating – for maybe a month – the last thing I thought possible happened; I got pregnant.

The same week I found out, he also found out he had another child in this world. I didn’t know what to do – I was terrified that he wouldn’t stay around, and as much as I don’t want to think it I seriously doubt my cousin would’ve taken care of us both. Eventually his mother found out and threatened to take his inheritance away if I didn’t “take care of it”. I’d always known I wanted a baby and here was my first chance and there was no way I could keep it.

A week or two later arrangements were made. We picked him up that morning because his mother made him come to make sure we went through with it. I went into the building alone. I felt like I was sitting around all these women who wanted to get rid of their babies and I didn’t.

I wanted to keep my baby but I couldn’t.

As I sit here as an adult I think of how stupid that sounds – I could have left, I could have moved back home – but I didn’t, I was so young I just did what others told me to do. I still have flashbacks from it; I wasn’t knocked out, they gave me gas, I couldn’t move, I just wanted to scream for them to stop and leave my baby alone. I went back home and felt violated, I wanted someone to step in and stop what was happening. I convinced myself what happened didn’t happen that way. For 15 years I told myself and anyone else who asked the lie. I told them my baby was taken away from me – that he did it – and in my mind it was the truth. Years later, I still lived the lie.

I reunited with my first love and my life was the best it had ever been. We were in love, we lived in our own perfect little house and this man loved me just the way I was. Then it happened again. I got pregnant and this time it was a happy time. Neither of us had ever had children this was our first time together and we were in love and perfect. For the first time in my life I was completely supported. I was taken in a family that loved me and would do anything for me. Everyone loved this baby. We were scheduled for our 20 week ultrasound the next week, one night I woke up because I felt wet and I thought I peed myself. I looked down and saw what no pregnant woman ever wants to see… blood.

My mother and father in law went with me to the hospital because my husband (at the time he was still my boyfriend) had to be up early for work. We sat in the hospital for 4 hours before they even checked me. My baby still had a heartbeat and the bleeding had stopped, so I thought everything was ok. Then the doctor said the babies cord was already in the canal there was nothing they could do but to induce my labor and to deliver him. Ten hours later my SON, my first born baby came. The baby everyone loved and wanted was here and gone at the same time.

I was convinced this was my fault – that I was being punished for what happened with my first baby.

I did nothing to protect that baby and so this one was being taken away. I went into a deep depression because I knew this was my fault; because of what I let happen. I couldn’t allow myself to tell anyone what I had done and why this had happened. I’ve never told a soul until now.”

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Let’s get something out there right off the bat – this is not an abortion discussion. This is not a faith discussion. This is a confession of heart break that has been held in the dark for over fifteen years. This is real life for this mom and many others, and this is being said out loud for the first time in over fifteen years so that she can make an effort to move forward. And you know what? I’m proud of her. I’m proud because in the moment that she hit ‘send’ she was getting something off her heart and honoring both of those children by being an example of strength and resiliency. She’s the example that you only have to get up one more time than you’ve fallen. All of our children should be so lucky.

If you have something on your heart that you need to say, send it here. Get it off your chest and find some semblance of peace. Maybe you’re prominent in your community and don’t want to feel like people pity you, or your self-employed and are afraid it’ll impact your business. Maybe you’re a dad or grandparent who has feels pushed to the fringes and you don’t want to take away their voice. Or maybe, just maybe, you’re just someone who hurts and can’t let something go. Type it out, send it in a message, and take another step forward. You’re strong, and you’re resilient. Be the example.

#TeamJonah

True Confession #1: Out of the Darkness

“I will always be jealous of people who got to meet their child alive”

“If meeting you means losing you, I wish we could stay pregnant forever”

We checked all the boxes we could with Jonah, or at least as many as you can after having already experienced a loss. We were present every day; Cassy spent special time with him in the evenings, just waiting to feel him move around in his little space. I got to feel him kick and push – things we never got the chance to do with Luke. I can tell you exactly how relieved we both felt when we heard his heart beating for the first time, knowing he was still there and as safe as he could be. But the list of things we missed is long.

We’ll never have first days of school or anything else. I’ll never play catch or soccer with him, and we’ll never go on a family trip beyond that hospital. His crib is still empty and his car seat still sits on a shelf in the garage. The things that burn my heart, though, are the most basic. I want to know what color his eyes were. Or if his hair would have changed color. I want to hear his voice and know what his cry would have sounded like, and hear his sweet baby coo when he was resting. To feel his grip on my finger. Those first things mean so much as first steps into fatherhood for me that I’ll never get over not having experienced them. I’m so excited when friends and family get to bring a new life into the world because I know how incredible these little lives will be. But my heart breaks knowing that Jonah won’t grow and play with any of them.

The blessings we have with something like this deserve to be counted in the same breath, though. I pay more attention to the feel of rain on my face and the sound of the birds outside my window. I watch the sun rise and set in a way I never would have if I hadn’t looked out the window in the only room I held my son, picturing the glow of the city scape between buildings. The brilliance so many of us take for granted we receive as gift because of our children. Those are gifts that will never leave; they can never be taken away. We don’t have many advantages as loss parents, but these are the ones I fall back on every day.

I make this confession and will make many more because I know I’m not the only one who feels this way. The purpose of providing this safe space is to give others who are grieving – be it as a parent, grandparent, sibling, aunt or uncle, or person close to someone who has experienced a loss as a way to put it out there without worrying about who is seeing them say it or what the recoil would be. This is freedom from the shackles of loneliness in loss. This is getting something off your heart that is keeping you from taking another step. This is a way to express something that you don’t have to do by yourself. True confessions of pain and heartache that you haven’t said anywhere else, out of the darkness. If you’d like to contribute to this series, type out what is on your heart and send it in a direct message to Diary of an Almost Father. No names, no identifiers. No way to track it back unless you want it to be. A safe space for all of us. Let’s help some people and help ourselves in the process.

 

I love you more than anything, sweet boys. Thank you for putting this on my heart #TeamJonah