#lvnc

I had a cardiac episode and blacked out driving (i pulled over, so no crash but still less than ideal). After some testing I have been diagnosed with Left Ventricular NonCompaction Cardiomyopathy. I was in the hospital for just under 3 weeks, started some meds, and have had an S-ICD placed to prevent cardiac episodes in the future. This is genetic, my mum had it and passed away at 52, my nanna at 47, and my aunt has had a heart transplant. As a teen I had some testing done that showed no symptoms and was told I was fine. Evidently not.

5 years I have lived without you. 5 long, hard, and draining years have passed as your memory fades into something that I can’t remember the same as I did just a few years ago. I can’t remember the way you felt or the way you smelled, I can’t remember exactly what the faces were that you made or what it felt like when you squeezed onto my finger. 

But I can remember the gifts you have given me throughout those 5 years. The experiences, the memories, the wisdom, the ability to have a happy, fulfilled and healthy life. I can remember what it was like to be dark and twisty and alone. When nothing in the world mattered because you weren’t here and I didn’t think there would be any reason to be here in this world without you. I can remember what it was like to want to drive into a wall on those late night drives because going home didn’t mean happiness. I can remember how lonely, and isolated and worthless I felt. My body had failed us, and I had nothing else to live for. 

But now I get to remember what happiness looks like and feels like and what a life with purpose is. I don’t blame your existence for the dark times, I look back and feel grateful that I had those times and that you existed because I was able to really see the light in life and what it was going to look like for me. I didn’t know my abilities, my strengths, or my weaknesses and every day I am still learning, but I’m learning them because of you. I have so much to learn and grow from still and a lot of the times I see myself making mistakes because there’s still that part of me that’s angry at the world for taking you. And for that, I’m sorry. But I’m learning and I’m growing and I’m living the best life because of you. 

I can’t go back and undo what happened to you. I can’t change anything and I’m okay with that. I have accepted that, and I have so many things to be grateful for now. I don’t think there’s anything I would give to bring you back because you brought me back already. And so much more than I could’ve ever imagined you to. You are forever the light in my life and the love in my heart, and because of you I am who I am today. I may not be perfect, I may have room for growth, and I may need to let go of some of the darkness that’s still within, but thank you for showing me what you have this far. I’m thankful to have the rest of my life to grow and become because of your mere 30 hours here on this Earth. 

Happy Birthday Bennett. 

Love, 

Way back when in the land of October I wrote what I felt to be a really honest, truthful, and raw post titled “What they don’t tell you when your child dies”. October is the month to recognize and bring awareness to parents who have not only lost pregnancies, but have also lost babies.

I went through a recent phase of purging my history off the internet and removing anything that had to do with my past and could be used as a point of reference to who I used to be. Not that I used to be a bad person or a person not worth knowing, but the intimacy behind the words that were posted so publicly became something I was unsure I wanted just anyone to see. I’ve suffered for years and years and years of having numerous different people seek out every intimate detail of my life on the Internet and you start to wonder, how much do people really know about me?

Alas, I am here, back up on tumblr and writing again because writing is where I can portray to the world the things that go through my mind. Writing is where I can show who I am and what I’ve been through and tell the world what other people experience if they’re not comfortable sharing these intimate things. So with that, I bring back the post that was read, shared, and acknowledged as an important piece of writing to countless both here in the USA and around the world…

“What they don’t tell you when your child dies..”

October is national pregnancy and infant loss month. It’s been almost 4 years, and what you read on the internet never seems to remotely do enough justice to explain what really happens in your life when your child dies.

What they don’t tell you when your child dies is that you’ll have to leave the hospital. And when you finally get the courage to leave the hospital and face the world alone, you’ll have to drive in your car. And when you get in your car, you’ll have an empty car seat, and instead of being able to see out the windows, the tears will overwhelm your eyes and you won’t be able to see what lies ahead of you. They don’t tell you that you’ll have to leave, and that you’ll have to face the world.

What they don’t tell you when your child dies is that even though you’re mentally preparing yourself for what’s to come, your body didn’t forget you were pregnant. So when you wake up 2 days after coming home from the hospital and you can’t move because your breasts are so engorged with milk that you can’t lift your arms, you’ll get another slap in the face with reality that the body that you felt was going to protect your child, and failed, just slapped you in the face. And you’ll have to endure the extremely painful process of telling your body, my child died and you don’t need to be producing this.

What they don’t tell you when your child dies is that even the ten minutes you held your child because your best friend forced you to, will never be enough time, and you’ll forever look back and wish that you had held him longer. You’ll wish that you weren’t so afraid of damaging that perfect little being that had already died. You’ll wish that you would have realized that it was okay to hold him, for hours if you had wanted to, and there wasn’t any time frame on when you had to give him back. Because that time, that amount of time that you choose to hold your child; that’s the only time you’ll ever get.

What they don’t tell you when your child dies is that the 4 pictures that you have will never be enough. That the fact that your epidural hadn’t worn off and you didn’t want to be in the way of the nurses taking care of your son… those aren’t ever going to be good enough excuses to not have more pictures. The 4 frames that you do have are all that you’ll ever have. You don’t have another chance to go back and take more. So make sure someone tells you to take more, because not everyone has access to professional photographers to come in and photograph your child after it dies.

What they don’t tell you when your child dies is that you’ll have to choose. You’ll have to choose whether you want your child to be buried, or cremated. And if you choose for them to be cremated in a foreign country, you’ll have to abide by their traditions. And their traditions may encompass watching the little white box that your child’s body lies in being taken into the room where the cremation is going to happen. And if you choose to not view your child one last time, you’ll forever live with the guilt that someone else was the one who last laid their eyes on him, not you. And if you go through with that cremation ceremony, you’ll sit there with your friends and family (family that could fly the 7000 miles to be there), while you wait for your child’s cremation to be done, and than someone will bring you a little urn and hand you your child back. And that nightmare will become a complete reality as you hold that warm jar that contains your child.

What they don’t tell you when your child dies is that you’ll have to go shopping for urns. And you’ll have to look through hundreds and thousands of them online because you live in a foreign country and can’t just go in somewhere and pick one out. Your google search recommendations will turn into burial recommendation sites, and every website you enter will have the pain staking decision of which jar do I want my child’s ashes to remain in until I’m ready to spread them.

What they don’t tell you when your child dies is that your relationship with your partner could end. And it can end even if you’re the strongest two people in the world. Because your child dying changes you, to the core. And you’ll grieve differently. Someone might pick up and just head straight back to work while the other spends every day on the bathroom floor crying their eyes out. And it’ll come to a point where it changes, and the roles reverse. It doesn’t mean you’re weak or you’re a bad person because your relationship ends. It just means life’s path has changed.

What they don’t tell you when your child dies is that when your relationship ends you have to decide what to do with the remains of your child. And as the anger and hate turns you into two people who can’t hold a conversation, the remains end up being spread in two different places in the world instead of laying your child to rest together. And as you have the realization of what has become, you do what you have to do to make sure you can be content and peaceful for the rest of your life. Because on that 3rd birthday when you’re ready, you’ll make the 5 hour drive with your father and sister and you’ll travel to the beach that you used to love so much, and you’ll say goodbye. And that day will be so perfect, and you’ll feel okay knowing that it didn’t go the way that you anticipated it to, but it was still so beautiful and so right.

What they don’t tell you when your child dies is that your grief will always remain with you, it will just change. Some days you’ll feel normal and you’ll feel horrible for feeling normal, and the first smile that adorns your face will feel like someone stabbed you in the gut because you smiled, and why in the world do you deserve to be happy? There will also come a time where you move forward with your life and the grief doesn’t come to your mind every day, or even every week. The grief comes maybe every couple of months, and that’s okay too. Because there will come a time when you feel okay to move forward.

What they don’t tell you when your child dies is that it never goes away, and even if you meet someone new, you still have to tell them about your past. And telling someone new about the child that possesses your heart will be absolutely terrifying, and scary and you can’t expect people to understand. Sometimes people will want to understand and they’ll do absolutely everything to listen to every word that pours out of your mouth, and walk into your grief and loss group with you and listen to you share the story about your ex and the baby you lost together. And sometimes people will turn their shoulder so fast and just run for the hills because they don’t want to deal with your issues. And sometimes people will find you beautiful because you know darkness in the world. And than sometimes you’ll meet someone who doesn’t know the words to say, but the way they wrap their arms around you as you tell them, makes you realize that everything is right in the world because you don’t want them to try to understand, you just want them to acknowledge that it happened, and it’s a part of you.

What they don’t tell you when your child dies is that people will say things that will constantly hurt you and ask questions that you won’t know how to answer. When the questions poses, do you have any children? Sometimes you’ll say yes, and sometimes, just sometimes you’ll say no because you don’t care to explain to the world why your child isn’t here anymore. And sometimes it’ll make you feel guilty and sometimes you’ll know that deep down you spared yourself from feeling miserable for the rest of the day because you had to tell a stranger why your child isn’t here anymore.

What they don’t tell you when your child dies is that you may be one of those statistics. You may end up being that 1 in a million like I was that changed your life forever. And the statistics that people throw in your face later feel so huge compared to what you’ve been through, because 1 in a million is so rare, and you were it. You were that 1 in a million, and although your odds of getting hit by lightning twice are far and few between, you’ll forever be afraid of odds in any setting. The 3% chance that you could lose your sense of taste forever when getting your wisdom teeth out will feel like the biggest chance in the world. And everything that starts with a statistic will end with a gut wrenching and scary feeling that that bad thing is going to happen to you all over again.

What they don’t tell you when your child dies is that you’ll be okay. We were made to be survivors, and even through all the horrible things that comes with losing your child, we can move forward and we can be okay and we can feel happiness again. It doesn’t mean forgetting, it doesn’t mean that you’re a terrible person, it doesn’t mean that somethings wrong with you. It means whatever you want it to mean, because no one can tell you what’s right or wrong for you, but you will be okay.