Tag Archives: Still Mothers

A Bag of Dreams.

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Since the end of last April, there has been an unopened bag addressed to me. In that moment my mom threw it to me, I knew I wouldn’t be able to rip it open and pull out its contents. That bag held my last happy buy. It was supposed to be opened right around the time Jensen was due. They were the last few clothes I thought he needed before he arrived. Every stitch filled with hope and excitement for the months to follow.

But, it was packed away so I wouldn’t be smacked in the face by the innocence I once had. It would throw me back to the day I purchased them, two days before Jensen was born. I was so excited on that day, I would have never thought everything would change in the way it did the very next day.

For almost ten months it sat on the shelf. Each time I saw it, I got closer to the bag. My mind knew what was in there, but my curiosity wanted to touch what I had last got him. It also hurt me to see it just sitting there, waiting in my parent’s basement. They didn’t deserve to be just ignored there when they were intended to be worn. So, I brought them home and to the closet I knew they would be housed.

Admittedly, I threw the bag in the closet and broke down. I was angry. My son would never wear these clothes and by this time, he would have outgrown them. I didn’t want to see them. Why go even through them and be taunted by their existence and Jensen’s absence?

The bag just sat there again.

I’ve never had the urge to go through his things, until today. When I got home, I walked into his room and just sat there. There was nothing out of the usual about today to make me feel this way. Screams were building in the back of my throat. Until something else became louder. I looked at the closet door and could almost hear the bag sitting there, calling out to me. Like a crazy woman, I answered the calls and ripped the bag right open. And the dreams of last April came tumbling out.

After I had went through each item (not all are pictured here), it hit me… these dreams should have been made a reality by now. Each should have been worn and dirty. They should be packed in a big ‘used Jensen clothes’ tote. I wanted them to smell like him and there to be a stain that housed a memory. The soles of the shoes need to be rough and dirty, not smooth and spotless. He should be the one laying on his rug looking up at me while we play. It shouldn’t be the image I have here. This pile of clothes, although beautiful, completely broke me.

I sat there with them, for longer than I care to admit.

Tears ran down my face as I folded them back and put them in their bag, forever unworn by the person that was intended to wear them. Not knowing what else to do with them, I put them back in the closet where they’ll continue sitting until I find what’s best for them. I shut the door, closing back up my hopes, dreams, and innocence. As I turned around I, once again, faced my reality. I faced his nursery, that doesn’t look like his nursery. Grief and exhaustion overwhelmed me as I walked into my living room. I wish I had the energy to keep being strong.

This reality sucks. 

This Tuesday feels different. It’s the first one I woke up and didn’t think about how many weeks it’s been since Jensen’s been born; I thought how close his birthday is getting.

Six. More. Weeks.

I’ll have a one year old, who will forever be thirty-eight weeks and two days, in six weeks. Time is so unbelievably cruel in this way.

Happy forty-six weeks in heaven, Baby J. Gosh, I am so lucky that you’re my son. If I had a chance to do it all over again, I would always pick you. I’ll always wish and wish and wish some more to have you back with me. For now, I’ll keep fighting and saying your name. I miss you. I love you.

If You Wouldn’t Say It to a ‘Normal’ Mom, Don’t Say It to a Bereaved Mom.

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Throughout this post, I’d like for you to imagine saying these things to both types of moms. This list has been on my heart for the past few months and I hope it will be able to help the way we speak about miscarriage, stillbirth, baby, and child loss.

‘Isn’t it time to move on?’

Have you ever been in a conversation with a mom whose child just learned how to walk or talk? It’s a pretty big deal. They’ll show you pictures, videos, and give you the whole back story on the event. Before Jensen I would just start nodding my head, like yes I hear you and I am so glad your son or daughter has hit this milestone. BUT I would never say, ‘isn’t it time to move on from that huge, important moment of your baby’s life?’

Why? Because it’s rude and obviously means a lot to the mother. It’s a proud moment for her baby and her motherhood. You wouldn’t say this to a mom at this time or any time in her child’s life. So, why would someone say this to a bereaved mother? We only had a short amount of time with our babies and will NEVER get anymore. Yes, we play the time we had with them over and over. We’re just as proud as our babies and want to talk about them. It’s not right or fair to tell a mom to ‘get over’ their child.

Calling a baby an ‘it.’

There have been plenty times in my life that I pass by a stroller, see a baby, and don’t know if it’s a boy or girl. I’ll look at the mom and say your baby is so beautiful. More than likely, she’ll let me know if the baby is a boy or girl or give me some type of clues to the baby’s gender. Then we go merrily on our way.

Calling a baby ‘it’ is just inconsiderate. IF you don’t know, ask. I’m telling you they will let you know. When a mom is pregnant and knows what the baby is, she will call the baby by his or her name and use the pronouns she needs to. So what makes it different when the baby dies? Jensen is still a boy and definitely not an ‘it.’ Calling him ‘it’ devalues his life and makes a disconnect to his humanness. Believe me, I know it’s sad he died, but calling him an ‘it’ does not make him any less of a baby. I’m still connected to my son and always will be.

‘You’re not going to get rid of or donate their things?’

Of course moms donate and sell some of their babies clothes after they grow out of them, but I’m sure special ones are kept. Just like certain blankets, toys, and shoes are too. These hold special memories to a mom that they want to be able to show their child when they grow up. Whether this be the going home outfit or their first birthday crown. It’s not weird that a mom does this at all.

If a loss mama decides to keep her child’s belongings, it’s not weird. They’re not ‘holding on’ or ‘stuck in’ the past. It’s a happy memory we have with our babies. This could be from the baby shower or the first outfit we bought. Instead of showing our babies who have passed when they’re older, we can maybe show future children or others who ask about our children. A lot of these ‘things’ hold sentimental value just like it does for a living child.

Whispering a child’s name.

‘How are you doing? You know with… Jensen.’

Imagine hearing your baby’s or any word whispered or mouthed to you. It instantly feels like it’s a bad word. One that needs hidden and shouldn’t cross anyone’s lips. The name is said almost secret like, wondering what it’ll unleash after it’s said.

The truth is moms love to hear their child’s name and be able to talk about them; no matter if they’re alive or dead. A person wouldn’t go to a new mom and whisper their baby’s name, they would say it proud and full of excitement. This isn’t any different for me. Jensen is not a bad part in my life nor does it unleash a huge cloud of darkness. If you want to know about him or see his picture, I’ll show you. It lets me show him off and hear that beautiful name I chose for him.

‘The pictures you post are disturbing.’

I feel like this is self-explanatory, but I know there’s some people they don’t understand this one. This is really close to my heart because I am terrified to share Jensen’s picture with the world due to nasty comments.

No one would ever go on to a mom’s post of their new, day old, sleeping baby and tell them that the picture is disturbing. I have never seen a comment on a baby freshly born and crying, that it’s gross and needs to be taken down. Mostly because the baby is alive and well and because it’s just something you don’t do. So, why is it so difficult not to say anything when a baby who has passed is shared? For stillborn babies, these are the ONLY pictures we’ll ever have. It’s not like I chose not to have any pictures of Jensen alive. Believe me. if I could, I would.

My son, like any other child, is not disturbing to look at. He looks like a sleeping, freshly born baby. BECAUSE THAT’S WHAT HE IS IN THAT PICTURE. I have had children look at his picture and not know he is dead and they tell me how adorable he looks sleeping. Some people are surprised to see his picture and realize he’s a fully formed, normal looking baby. Knowing these comments are made to a stillborn baby or a baby that has passed is ridiculous. You wouldn’t say it to a ‘normal’ baby, don’t say it about a stillborn one.

‘Well it’s not like you’re attached.’

‘It’s going to be so hard to leave them for the weekend.’

‘Well it’s not like you’re that attached to your baby, it should be fine.’

Nope. You wouldn’t tell that to a new mom going away for the weekend. Honestly, you probably would get slapped in the face if you did. A mom is connected to that baby as soon as she knows she’s pregnant. Those months you’re pregnant, the baby is literally with them at all times. Obviously, right? No one would say this to a new mom or any mom. It shouldn’t be said to a mom whose baby died.

Saying this doesn’t soften the blow. It, again, devalues the life of a baby that is so very loved and wanted. A mom is attached to their child, no matter if they’re here or not.

 

Love Day.

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Being a mom has taught me endless love.

Not just on Valentine’s Day, but every single second of each day.

When I imagined Love Day with Jensen, I pictured making him heart-shaped pancakes with strawberries (all cut up and easy for him to eat), doing a mini photo shoot with here at home, and having a mommy-son date night. He would be in Valentine’s Day themed pajamas in the morning and jeans and a button up shirt for the evening. I’m sure there would have been a craft we would have done to give to grandma and grandpa. There would be smiles and giggles. All would be right.

I really miss him.

A weird part of this ‘holiday’ is I’m not even being triggered. Maybe it’s because I’m extremely sick and still trying to get better? Or the weird way it seems like a lot of big days have fallen on Tuesdays? Then I think that today’s not really a holiday, but I still wanted to spend it with Jensen and make it another great day for him. I keep telling myself, ‘It’s just a Hallmark holiday.’ But I realize I’m not sad because I’m not spending it with a boyfriend or a guy. I just want Jensen and all the days I should have had with him. Lately, for me, I’ve been missing him in the smallest moments. Ones where I wonder when he would be crying or get mad at me. He’d pout, fake cry, and turn his face so red. It’d be frustrating in that second, but I want that. And there are others when he’d fall and get back up on his own. I wonder how that first time of him getting back up on his own would feel. Like he could do something on his own and didn’t need me; I’d feel so proud and sad at the same time.

Those are the moments I crave.

Honestly, I’m thankful for today. The day I found out I was pregnant was when I knew what love truly was. I swear I felt my heart grow five sizes bigger. It has only grown and radiated. When I woke up today and saw all those hearts and words of love, I just felt it. There has been lovely loss mamas sending me hearts with Jensen’s name and letting me know he’ll never be forgotten. I received his drawn portrait and am amazed with how adorable he looks in it. There’s a love craft planned for tonight that I’m really looking forward to. Maybe I’ll even have a mini date night with myself if I’m feeling up to it tonight.

I just feel so loved today.

It’s amazing to me how in this darkness of grief we can see light and feel love. How even in our worst days there’s something to smile about. That from this great physical distance between Jensen and I, he feels so very close to me. It’s all from this endless love that one little boy continues to bring me.

Which brings me to something I want to share with you guys…

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I’ve been thinking about starting an Etsy shop to spread the love I have for Jensen. The items in it would be customizable to any child; I promise I’m not that crazy to just offer Jensen’s footprints! It’ll be items like the one with Jensen bear and of course other ones too. I thought today would be the perfect day to share with you all and to see what everyone thinks. You all have helped shaped this journey so much for me that I appreciate your feedback.

I hope you all have a gentle Valentine’s Day full of love.

Happy forty-five weeks in heaven, Jensen! Today I’ve felt all the love you’ve been sending me and I hope you’re feeling all the love I have for you. I know you’re hand making me cards for when I join you in heaven and I’ll be so happy to see them. Thank you for giving me this endless love; I’ll cherish it every day of my life.
I miss you. I love you.

Ten Things I’ve Learned in Ten Months of Grief. 

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The past ten months have been the most challenging in my life. A parents worst nightmare is to have their child die, but the nightmare doesn’t end in that moment. Learning how to live after loss is unnatural and soul splitting. There hasn’t been a day that I haven’t cried or felt like my whole world was going to crash around me. On the other hand, there hasn’t been a day where I haven’t felt an immense amount of love I have for Jensen.

This whole journey is a learning experience and I don’t think there will ever be a day where I stop learning about loss and love. Today, for Jensen’s ten month day, I want to share with you ten things that have gotten me to this point in my grief journey.

Loss

I never knew loss before Jensen died. My grandmother passed away before I was two years old and I knew people and had pets that had died, but never had felt this deep loss. From the second I found out his heart had stopped beating, loss overwhelmed me and I didn’t even know how to process that feeling. Then there was the realization that I would forever live with the loss of Jensen. I mean obviously, right?

But at that second of finding out he was gone, my body would not allow me to understand that I would lose Jensen at all the stages. Sometimes I still don’t think I completely have come to terms with losing Jensen at older ages because I’m not there yet. At ten months, I know what it’s like to have loss from the moment he was supposed to be born until his ten month day. I relive that loss each and every day. The Jensen sized hole in my heart is with me with every step and I can literally see him with each step I take.

Loss isn’t ‘fun’ to learn, but I’ve been forced to do so.

Pain

Immense. Abundant. Heaps. Endless. Masses. Enormous. Infinite. Never-ending.

All those words that could describe the oceans amount of pain I have felt. Even with those words, I would still say there’s more. Then with each wave of pain I get, it stings somehow harder than before. This type of pain is mental, emotional, spiritual, and even physical. It is so exhausting to keep fighting this pain and not just succumb to it. Yeah, there is days where it hurts so much I just lay there and take it.

I almost wish this pain was visual, so others could see it coming on to me. There’s only so many ways to describe it, but if it was my leg bleeding out I feel like others would run over to stop the bleeding. There’s no way for others to really ease this pain.

Longing

Just like with loss, I have never felt longing before. Of course there was times I missed my mom and dad when I was away, but I knew I would see them soon enough. There was never a doubt that I would see them and all that missing them would just fall away. This isn’t the case with my longing for Jensen.

I long to see him smile and to hear his laugh. I long to feel his hand squeeze mine. I long to know what his first word would have been. I long to learn the schedule we would have had. I long to read to him one more time. I long for him every morning when I wake up and every night when I go to sleep.

With each new place I go, knowing he’ll never go there, I long for him to experience it with me. I feel as if I’m just being introduced to longing and it will continue to grow as the years pass.

Grief

Sucks…

Just throwing that out there. It really does though. Grief sucks you in and it decides when to throw you out. It’s like a huge black hole and who knows what you’re going to feel when you’re trapped inside.

Is it depression, anxiety, PTSD, or all of them at once? Will it be me feeling completely numb or feeling everything?

Grieving is hard for anyone in any situation. I hate that I have to be a mother grieving her son. It’s not fair, like most things in our world, but this really isn’t how it should be.

Tears

They sound self-explanatory, but I can tell you all the different tears I’ve encountered in ten months. Heck, I’ll just tell you the tears that I’ve had in the past twelve hours.

Big droplets that form from holding them backs. Hurried sobs because you held them back. Silent ones that flow down your face as you try to sleep. Scattered ones from crying in your sleep and they have no idea where to go. The flood from when you open your eyes when you wake up and they just fall out. Then there’s the nameless ones that just are there and you work/live through them.

Heck, I could have filled a kiddie pool full of tears in the past twelve hours. Imagine the last ten months.

Support

I’ve had support all throughout my life, but I’ve learned that the best type of people support you through the worst of times. Through this ten months, complete strangers have become best friends and best friends have become complete strangers.

Support isn’t trying to fix what is wrong. It isn’t necessarily making everything better for the person in pain. Support is listening and letting the person know you’re always there for them. It’s being their greatest cheerleader and seeing the progress on a day where it feels like you’ve fallen way off track.

Most of all (with child loss) it’s remembering their son or daughter with them. It’s saying their and writing their names down, listening to the same stories, and never forgetting.

Smiles

Of course I knew what a smile was before Jensen died, but I never felt how good it could be to smile during grief. Just because you smile and feel happiness doesn’t mean the death of your child is forgotten or you’re happy they’re not here. You’re having a good moment and this smile just comes from the soul. It brightens your day and feels so much better on your face than just a frown and tears. Not that those frowns and tears are bad, but the smile does feel good.

On my bad days where I feel strength, I look for what makes me smile. Seeing Jensen’s face and his drawers full of his stuff makes me smile. Knowing his life means so much lights up my day. Leo and Poe’s antics make me laugh. The support I have can cheer me up and I know they love to see me smile. Seeing how far I’ve come and knowing I’m still taking steps towards living brings me a peaceful grin.

A (real) smile there is lightness throughout this black hole of grief.

Growth

This ones a little more difficult.

I long to see Jensen grow. On each of his month days, I wonder how much he would weigh and how long he would be. I’ve wondered when his first hair cut would have been. Honestly, I could go on and on with this. I won’t today, but you get the picture.

The growth I’m talking about here is the growth in myself. It’s how my strength has grown to not only take on the stresses of everyday life, but to also hold the weight in my heart. My voice has grown to be able to shout from the rooftops all about Jensen and the taboo of pregnancy and infant loss. I’ve probably grown in ways I don’t even know yet, but I feel it. There’s apart of me that screams that I could have grown these ways without Jensen dying, but I can’t change that. It’s not a good that has come from Jensen dying, it’s a positive that has grown through the grief I’ve had to endure.

Motherhood

It’s an invisible motherhood, but it’s my mine. I have been a mom since the moment I knew Jensen was inside of me and I’ll be his mother forever. No one will ever be able to take that away from me.

I’m still learning this type of motherhood, which is strange because it’s my only experience. Yet, I’m still here; being the best mom for Jensen I can be. I know it’s not the same as mothering a living child, but I still mother him in ways all moms mother their children. I have sleepless nights and I worry myself sick wondering if I’m doing all I can do for him. He is my motivation and even though I can’t see if he’s proud of me, I know, deep down, he is.

Love

It always comes back to love.

Throughout the good, the bad, and the ugly, love has always been right there. The love I have for Jensen will never cease. The love I have for my motherhood only grows stronger. My love smiling has come back. I love the support and my tribe of loss mamas. There’s a huge hate-love I have for grief, loss, and all the ‘bad’ that was listed above. I hate it because I don’t want it in my life, but I love to see how through these I’ve grown. Through these I’ve learned to love harder and greater. Would I give that all back to have Jensen? In an instant.

But I love this life I have been given. I love the fact that Jensen will always be intertwined in my everyday life. I love that he will forever walk with me. I love that I can share the love I have for him.

Happy ten months in heaven, my sweet boy. I hope you’re smiling down with your (not so) big ten month day sticker. The sun is shining and I know you’ve given me this day of renewal to keep on growing and to keep on loving. Everything I do, I do for you. I miss you. I love you.

My Wishful Response To: “I Can’t Imagine What You’re Going Through.’

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‘I can’t imagine what you’re going through. If I ever lost my baby I wouldn’t know what I’d do with myself.’

What I say:

Losing him isn’t anything I ever expected to experience.

What I want to say:

Imagine walking into a room knowing it’s the last time you’ll ever come into contact with your child. It will be the last time you can see them, brush their hair, kiss their cheek, and tell them you love them in person. You don’t know whether if your brain is going to soak these moments up or just blur them out so it’s not so painful. As you walk out that door, you’re leaving everything you ever loved behind.

Imagine having to pick whether you want to bury your child six feet under the ground or if you want to cremate them. Before you do that, you’ll have to pick their lost outfit. Then when you’ve done that, you have to sign a paper, through tears, saying that you’re allowing your child’s body to be in a casket forever or be turned to ashes.

Imagine you have to attend your child’s funeral. The pastor reads his or her’s names and the dates they lived and died. They’re singing songs and telling you that we all have a season of mourning. You’re so numb in that moment that the only thing you can feel is the tears running down your face and how you’re gasping for a single breath. This time will be a whirlwind and utterly unbelievable.

Imagine now when you walk into your home. There’s an eerie silence that greets you and like an unwelcome guests, stays for entirely too long (it still hasn’t left my house). The house is too clean and there are flowers brought from the funeral. Flowers that will eventually die and all you can think about is how much you hate that things die. There will be plates upon plates of food in your fridge, but you’ll never remember eating them. You won’t remember because your body doesn’t allow you to get hungry right now. I mean, how can you be hungry when your child will never be able to eat again?

Imagine not knowing the days and weeks passing by because it all feels like a cloud. You literally feel dead on the inside and quite honestly, you feel like you want to die to be back with your child. Loneliness sets in and you don’t feel understood by anyone that did before.

Imagine the months that follow. It seems like everyone else has had their closure and are ready to get on with their days. They start to wonder when you’re going to ‘get back to normal.’ Some ever tell you they miss the old you and would do anything to get you back. They question why you’re so sad all the time, like they don’t see the absence that you feel so very heavy in your heart. But with all your questions you start to feel insecure and like you’re not grieving right.

Imagine having to live the rest of your life, never being able to see, hear, or talk to the little one you made. The little one that you gave life and cared for so very much.

Now imagine this… through all of these things, you’re being told you can have another child and that they’re in a better place. You’re told that you should be getting sleep because there’s no child to keep you up through the night. There are people who say they don’t know how anyone can keep going after their child could die (my only other choice is choosing to die). When you talk to others, they don’t understand why you’re still sad. To top it all off, they say they can’t imagine what you’re going through.

No. You can imagine it. It hurts like hell, but you can imagine it.

You just won’t.

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Picture from Saying Goodbye

Today marks forty-three weeks since Jensen has been born; Sunday will be ten whole months. There are days I wake up and I still don’t want to imagine my life being like this. Yet, this is my reality I’m forced to live with. I didn’t choose this and I would NEVER wish this pain and longing on another person.

Although I know people who say they couldn’t imagine living without their child would never mean to hurt me, it hurts me. Believe me, I know it’s literally the worst thing a mother could imagine, but so many moms are living it. It’s not that I want you to imagine the pain, but I want you to halfway understand what I’m going through. Instead of saying you can’t imagine, please just say you don’t want to.

Jensen Grey, you are so very loved. Thank you for giving me the strength every day to keep going on. Even during my hardest days, you send me signs to let me know you’re right here. With each of your cheers, I can hear them within my soul. This life isn’t want I expected, but I would ALWAYS choose you. I miss you. I love you.

20,377.

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There’s a number I’d like to share with you all today:

Twenty-thousand three-hundred and seventy-seven

20,377 is a pretty big number to me and just a few hours ago, it seemed a whole lot bigger than before. Since Jensen was born forty-one weeks ago, twenty-thousand three-hundred and seventy-seven babies have been stillborn.

Let that really set it.

That’s 40,754 mothers and fathers that have lost their children and 163,016 grandparents who have lost their grandchildren. Just in forty-one weeks. 

The absolute crazy thing about that number is, it grows by 71 each and every day, in the United States alone. (I read this statistic today from stillbirthday.com.) Even more bizarre before Jensen was born, I didn’t even realize that stillbirths still happened. I honestly thought that is was just something that happened in the medieval period. That sounds very closed-minded and uneducated, but I literally did not know. I knew people who had miscarriages, but I only thought it happened within the first trimester or at the very latest twenty weeks. I didn’t realize babies died, until mine did and it completely flipped my whole entire world upside down.

Through my entire grief journey, I have wanted people to, one, know Jensen and how much he means to me. Which, by the way if you haven’t noticed, he means everything to me. But, I’ve also swore to myself and Jensen, that I would speak up about stillbirth. I want this taboo topic to be talked about. There is NO way seventy-one babies in the United States should be dying every day. I know that these parents have done nothing wrong to cause this, believe me. But there has to be something more we can do. People, like Danielle before Jensen, should know stillbirth happens.

Babies die.

Parents grieve, hard.

Lives change forever.

‘But Danielle, no one wants to talk about how babies die. It’s too sad.’

Yes. It is sad. Losing a child is a tragedy no one should ever go through, but I’ve lived forty-one weeks of this life after loss. There’s people that have lived this life for way longer than I have and there has been seventy-one sets of parents who have entered this new life. That’s the reality. Our world isn’t all rainbows and puppies. It sucks. Life is hard and although there is no way to prepare for giving birth to your lifeless child, it should at least be talked about. Those babies deserve to be talked about and much, much more.

I urge you to take one day and put your timer on for every twenty minutes. Each time you would press to shut that alarm off, another child has died. Another mother’s dreams have been shattered. Another father will try to comfort his partner. Another family effected by something some people don’t even know happens any more. The seventy-one times your phone would go off through the day would really set in. For every chime means another angel will get his or her wings.

This isn’t meant to make anyone feel extra sad or to make anyone feel bad. It’s the truth and the hard statistics. To be quite honest, it’s horrible to be on the wrong side of it. Being that one of seventy-one a day. It breaks your spirit. Just knowing those numbers, I don’t know how this world can absorb all that pain and heartbreak day after day.

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Happy forty-one weeks in heaven Baby J. You made it to St. Paul, Minnesota today to play in the snow. Make sure you send Kristyna a big thank you sign. I think you would have really liked the snow and would have eventually thrown snowballs at me every time we walked to the car. There’s no snow here today in Ohio, but I’m sure you’re getting whatever you would like in heaven. I wish you were physically here with me. I miss you. I love you.

The Difference of a Year.

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This is the first ‘bump’ picture I took with Jensen.

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It was taken one year ago. I was six months pregnant with him and going through a lot at this time. At this time I had already known for two months he was my little boy. But I had found out so much more on that November day. Less than a month before this picture was taken I learned Jensen had a 99% chance of having Down syndrome. This was hard for me at that time.

I questioned if I had done something wrong.

I was terrified of an extra, teeny, twenty-first chromosome.

I started researching and educating myself on how to better mother a child with Down syndrome.

I joined a support group.

I read and followed different blogs.

I worried I wouldn’t be enough for him.

I fought for him from the pressures of people who had no right to tell me what I needed to do with my baby.

It’s sort of crazy to think I waited six months to take a belly picture. Honestly, I just thought I’d have millions of pictures of him with all the years that we should have had. Plus, this is when I first started to like my pregnant body. I could see my bump and see when he’d move. Seeing me get bigger only meant Jensen was growing like he was supposed to. With every ultrasound his body grew bigger and heart beat stronger.

This time last year, everything was perfect; even with it not going as I planned. I was just so ecstatic to be his mommy. Every day I would wake up and tell him how loved he was. I dreamed of seeing him for the first time and wondering how he would look. My love grew deeper and deeper. I looked forward to checking my pregnancy app to see what new things he was doing and what I could be doing to better prepare. Then every night, he would be read to and sung a sweet lullaby before he kicked me until I slept on my left side. Those were the perfect days. I looked forward to seeing him twice a week and all the seconds in between. Even though I didn’t understand why he was given this diagnosis, I was blessed to have him. I was blissfully happy.

Crazy how much can change in one year.

I’ve been at a loss of words this week. There’s been a lot going on and the Jensen sized hole in my heart has been stinging. I keep thinking how today I would be dressing him up in a little Steelers outfit and going over to his grandparents house to cheer them on. I’d love to see him grow outside the womb physically and mentally. Deep down, I know he’d be so curious and smart. He’d want to learn, play, and make smile. Instead all I can do is cry and wonder why. Why I was so scared of not being enough for him. Why I didn’t take more pictures of my belly. Why I worried so much.

Why did he have to die.

Forty Weeks.

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Today I was asked to describe the last forty weeks in a couple of words. After only a second of thinking I could only say one thing, I’ve survived. Admittedly, I laughed after saying this. It seemed a little dramatic, even for me. I hurt every single day. Tears come and go, most of the time I don’t even notice they’re there. I scream in pain, questioning everything. And yet, I see the continuance to live. There’s been growth and relationships gained. I’ve laughed out loud in spite of everything. But, there really is no other way to describe what it’s like to lose a child. When I got home, I was curious to see how they defined this word that’s meaning seems so simple. There was two that jumped out at me.

sur·vive:

  1. continue to live or exist, especially in spite of danger or hardship
  2. remain alive after the death of (a particular person)

See, as a definition it seems so simple. Almost like we’ve always had an idea what this word means, but you don’t truly know it until you’ve been in survival mode. There have been times in this forty weeks where I have just simply existed, even when I tried the exact opposite. Grief, anxiety, and depression are hardships I live with everyday, on top of feeling Jensen’s absence. Yet, I remain and I have to continue on. So surviving really is the right word to describe all of this.

On top of it being Tuesday, the number forty has really been speaking to me. If we’re just talking about pregnancy, forty weeks is the week to get to. It’s the due date we all know. Jensen’s was April 17. Today there’s more to this number and my grief. Although I try to stay away from talking about faith and religion, I think it’s necessary for me today.

As always this is not to make anyone uncomfortable, just how I make the connection and sense of things.

In the Bible, the number forty is pretty significant. On the top of my head, I can think of at least ten times forty is mentioned. Each time it is, it’s always a period of testing. Just one example is Moses. I mean his life was split up into three forties full of trials and testing, I’m also watching the Prince of Egypt, so it’s all coming back to me. Anyways, the past forty weeks for me, have been full of those tests and trials. I mean I didn’t lead the Israelites from Egypt, but I’ve led myself this far. Every day there seems to be a new challenge for me. I test myself and question my purpose. As a collective, I never thought I’d make it to forty weeks in the beginning. It’s strange for me to think another child could have grown in this amount of time.

I test my motherhood each day. There are trials and errors of how to work on my grief. Honestly, everything since Jensen has been born has been a test. I’m still getting to know Danielle after Jensen. It’s hard living with a self you know nothing about. Anxiety. Heck, anxiety is always testing me and making me trust myself again. Even other people, unknowingly, test me. Maybe that’s more on myself and testing how I react now. Even Jensen has been testing me, in good ways. Testing me to see if I see his signs. Fun fact, my Netflix has randomly been turning on and changing to cartoons. Wonder who would want to watch that? He’s also led me to certain books, this time Miss Peregrine’s Home for Peculiar Children by Ransom Riggs. Who, in fact, named on of the characters in the books Robbie Jensen. So, Jensen ultimately rewards me after every test, but still.

Alright, so I’m guessing you’re wondering where I’m going with all of this. If you’d talk to me in person, I would be talking for hours. Anyways, through trials and testing, we see progress. Not necessarily results right now, maybe I’ll see some at the forty-year mark. Even though I describe this time as survival, there has been so much progress. I’m not healed completely, but I’m healing. There are parts of me I never knew before, but I do now. I don’t like the pain I feel, but I see what I’ve learned from it. Saying that, I don’t see Jensen’s death as a learning experience, but the way I’ve lived or survived or whatever this is, has taught me so much about me.

I’ve said this over and over, I NEVER THOUGHT I’D MAKE IT TO THIS POINT. When I was preparing for New Years Eve, I thought my heart would stop at midnight. I didn’t think it could take that hit. But I’m here. Jensen’s love for me has driven every step and it’s made me want to do better for him. Maybe that’s cliché, but I’ve survived these forty weeks of trials because of love. Because his light is so bright, that it leads me to the next test. His love has given me a deeper sense of faith and it’s shown me that I have to trust in this unknowing, to me, life plan.

What I do know today, at week forty, is that although I’m extremely uncomfortable with grief and not knowing where my life is going, I somehow feel I’m on the right track. I don’t feel pressure to move on from anything or to get to anywhere quickly. I’m not ready for another relationship or to even think of having another child. There’s nothing wrong with trying to figure out who I am again and what mothering Jensen is going to look like in this next forty weeks and beyond. I don’t think this is the end of my trials and testing. It’s going to be lifelong for me and maybe at forty months I can look back on this post to see how far I’ve come. No matter what, the love I have for my son will continue flowing through me through every step of my life.

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Jensen Grey, you are so loved. I hope the past forty weeks in heaven have been peaceful for you. Today wasn’t so bright here on earth, but I bet heaven is warm and bright where ever you dwell. I wish you were here, so my tests would be learning all about you. In some ways they are now and I know you’re helping me along the way. I miss you. I love you.

Nine Months.

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In my house there’s a room that remained empty for almost nine whole months. There are white squares on the wallpaper and one navy and orange wood wall. The curtains are drawn and frame a picturesque, snowy backyard. Its grey rug in the middle of the room calls out to be sat on. It yells for you to read all the books packed away in storage. Although it looks like any normal room, there should be a crib, a changing table, and bookshelves full of adventures. Instead, the only signs that it was anyone’s space is his name, weight, and birthdate written on the chalkboard paint right as you walk in.

For all this time I hated its emptiness, but there was no way I could take seeing his empty crib. It stayed waiting for Jensen and all his things. A nasty reminder of how life should have been.

Recently, I’ve gained the courage to actually use his room. The first step in this process has been putting up a big piece of furniture, a futon. In fact, it’s a grey futon with navy and orange pillows. My mom and dad came over to help me put it up. We decided the best place for it to sit was where Jensen’s crib would have welcomed his dreams every night. I truly believed that seeing his room being used would help heal my heart. That it wasn’t just a room that held stillness. As we assembled and centered it on the wall, the room started closing in on me. This just wasn’t how it was supposed to be.

I took a huge deep breath and tried once again to accept my reality.

Yes, I had to accept Jensen wouldn’t be using this room. At nine months old, Jensen isn’t in there standing on his crib mattress, waiting for me to pick him up. Instead of him crying to wake me up, there’s nothing but silence. There would be no bedtime stories or a room full of toys. I wouldn’t hear him jump out of his bed as he grew older. He wouldn’t race to his window to see if the snow had covered the street beside us, hoping school would be canceled. There would be no slamming of his door or sneaking out of it. None of these dreams will ever become memories. The futon in his room would always remind me of that.

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Today when I walked in and seen the image above, I smiled and then cried. No matter how much this futon reminds me of all things I don’t have with him, he is so present in this home. In the navy and orange, I see the color of crayons he would pick. The squares on the wall could only help grow his imagination, maybe he’d even become a better drawer than me. Who knows, maybe when he would have been older, he would have wanted this very futon in his room. He probably would think it was cool to have some place to hang out and play video games. I cried today because I wish I knew him at nine months and everyday of his life. His room would’ve become such a huge part of his childhood and now it’s up to me to use it.

I can’t bear to use see any other colors than the ones I picked out for him. It will always be Jensen’s room. My hope is to use his space to be close to him and do what I can in his honor. It took nine months for me to put a futon in there, so it might take nine more for me to actually sit there for a while. Everyday I’m doing my best for him and for me. Even if that means accepting what shouldn’t be.

Happy nine months in heaven, Jensen Grey. You are loved and missed beyond what words could ever describe. I hope you like the futon that occupies your room. It really is comfortable and I could really see me sitting there and watching you play. I hope you have your big nine month sticker on and sending me a most special snowflake. I miss you. I love you.

PTSD: Part Three

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In November I started talking about Post Traumatic Stress Disorder (PTSD) and how it effects women who have experienced pregnancy and infant loss. When I started these postings, I really thought I would be able to delve into them during the holidays. They went hand in hand with how I was feeling, but I couldn’t put it in words. I was feeling everything so deeply and at the same time, I was so busy I couldn’t get it all out. Honestly, I had forgotten that I needed to continue these, until last night.

I’d also like to say, I am in no way am I a trained psychologist. I’ve honestly never even taking a psychology class in college. This is just me making a connection with a very real life disorder and sharing my journey with you all. A lot of women who have experiences loss do go through these same symptoms. Not everyone is the same and not everyone goes through this journey just like the next. If you don’t feel like you’ve been through this, you’re not alone. If you do feel like you go through one symptom a day, you’re not alone. Although I’m here to talk about anything with you, this is not by any means a diagnosis.

To refresh your memory and incase you want to go back and read, these are the four symptoms of PTSD and how I have experienced them post loss. I found these symptoms on the Department of Veterans Affairs.

  1. Reliving the event.
  2. Avoiding situations that remind you of the event.
  3. Negative changes in beliefs and feelings.
  4. Feeling ‘keyed’ up or being on the lookout for danger.

If you read my post yesterday, I’m definitely feeling some negative energy. I keep telling people that I feel so cynical now. Every day I expect the worst, but then think the worst has already to me. There are times I really don’t believe I’m ever going to feel better. That’s hard to type for you all to read. I want to everyone to believe that I’m going to keep surviving each day and to know when I have good days. Yeah, I smile and laugh more freely now, but I always feel the negative right there.

It was so difficult to experience the holidays with this cloud looming over me. The strange thing is, it’s almost as if the fog or numbness from the loss has worn off and I’m just feeling everything head on. Like I’m playing football without pads or jousting without armor. Although I really just ignored Christmas, the change of the year was definitely negative for me. I didn’t/don’t believe the world around me is magically going to get better. There are times that I don’t really believe what I do to help is actually helping. This is going to sound crazy, I know deep down that I’m helping myself heal, but my body is just producing all this bad energy. That’s truly is only way I know how to explain it.

Like I said in the beginning of this post, I didn’t even really think about continuing this, even though I’ve wanted to, until last night. For those of you that don’t know, I’m an avid reader. Well I was an avid reader before Jensen was born. I read Jensen children’s books every night before bed and read a handful of big chapter books during my pregnancy. Knowledge has always been so powerful for me and escaping to these worlds where I can learn more about different ways fascinates me. Anyways, I put off reading after he was born. The time I knew I should escape, I couldn’t let myself. I was afraid that my love for reading was going to change and it’d cause me nightmares. There was so much negative to an activity I loved to do. Then a book I preordered with Jensen came in the mail and I read it in the span of a week. I felt so much better reading, but hadn’t picked up another book throughout the holidays.

Again, I was being so negative with myself. I hated this world I was stuck in, but no other world had Jensen in it. When I got a notification that one of my favorite books from high school was turning ten years old, I figured I’d purchase that addition and try reading. Jay Asher’s Thirteen Reasons Why was one of the first books I read that really talked about the dark and gritty. It’s also the first one I really, really understood the dynamic of loss. Of course I’ve read books before that had characters die, but this one was centralized about Hannah Baker. If you don’t know the story, she commits suicide and tells her thirteen reasons why via cassette tape. Each of her reasons are people and their actions that impacted her decision of taking her own life. Suicide is a serious issue and I know you’re wondering how it connects to me and pregnancy and infant loss.

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Well first, let me tell you how it directly connects to Jensen. In the book, you’re reading the protagonist’s point of view on how he views Hannah, as well as hearing her story. His name happens to be, Clay Jensen. I completely forgot that before ordering the book. My heart skipped a beat reading his name over and over again. All the other words blurred together as my eyes instantly went to the name I constantly say and write. That’s an obvious one, but then, in the last chapter there’s another part that blew me away. Clay’s locker combination is 5-4-23. All random numbers, except, Jensen’s birthday was the 5th of April, which is the fourth month of the year. So this might be pushing it, but this year I turned twenty-three. Kind of crazy, right? What’s more crazy is when I finished my marathon read this time around, I ended at exactly 4:25am. The minute Jensen was born… Just thought I’d take a second to share that with you all.

Now back to all seriousness…

The book is a work of fiction, but I know what it’s like to be in that dark place. To think you are all alone in this world and that when you finally reach for help, you get told to move on. Of course the world is different to me than it would be for a high schooler. There’s more experience and years, but it doesn’t make that loneliness more than the other. But I kept thinking of how PTSD after losing Jensen has brought all these negative feelings and beliefs in my life. I question,” Why Me? Why Jensen?,” over and over sometimes. At times I don’t want to reach out and spread this darkness. But what happens when you keep it all inside?

There’s a lot of statistics and facts I know about losing a child. One I do not know and have not looked up is that suicide rate among grieving mothers. In the book, Hannah contemplates how she wants to kill herself and she mentions running her car off the road. You wouldn’t know this, but I’ve thought those same things. I’m not suicidal by the way, but I wonder what that release of pain and darkness would feel like?

As much as the negative and darkness cloud my life, there’s one big shining light. It’s the light I see when I drink my chocolate milk in the morning and every night as the flame dances on top of his candle. I would do anything to have Jensen back with me, to have him physically light up my world. Unfortunately, I’ll never have that. But I do have him and moments full of blinding light and love. I have hope that I will see him one day, but I’m not going to rush to get there.

Post traumatic stress disorder is real for mom’s who’ve lost their child. I’ve never lied to you guys on this journey and I won’t stop now. A book triggered me last night to think of everyone in the world who can’t stop those negative thoughts or who’ve felt so alone they didn’t know what else to do. These go hand in hand. Or, as Hannah would say, “everything… affects everything.”

Even if you’ve found my page and have not experience the loss of a child, but are still feeling completely alone, please reach out to me. There is hope and one day there will be a light so blinding that you’ll want to share it with the world. It might not feel it in this moment or the next, but I promise you, you are wanted and you are loved. You belong right here and maybe it feels like this suffering will never end, but there are people (like me) that will help you through every step of the way.