I am so much more than a word

I do not have a name. Did you know that? There is a term for spouses that have lost one another, widow, widower. There is a name for a child who has lost a parent, orphan. But there is no name for me. A parent who has lost a child. 

They didn't have a name for me when I lost a sibling too. Instead I always feel like the sad story a friend of a friend tells you. And you think to yourself, gosh that poor girl, again? How does she do it. I do it because I did not get a choice. No one ever does when life comes to your door.

You tell me I am strong because you have seen me conquer my past. You see my feed with happy memories in the face of grief. The biggest smile on my face as I held a child attached to a million machines. Smiles mirroring the little boy who is not my own but lived on and off with me. Smiles as I held my still baby in my arms, because there will never be another photo of us together. Smiles in the face of grief.

 You think you couldn't do it yourself. I thought I couldn't either. In fact, while grieving my sister, one year ago, I wrote the words, "I don't think I could do this with a child." Thinking my mother the strongest person I knew. 

Now here we are. I know her grief. I know the loss of the future. I know nothing and everything about grief. I am angry that the ways I processed Kimmy's grief are not working this time. I found comfort in food and socializing then, now I cannot eat, and I don't want to see anyone. I had 3 children in my home, as my nephew came to stay with us. I lived for making his days happy, and in return his joy brought me smiles. I was living through grief with what looked like dignity. But it was dingy in the corners. I was crying when no one was looking. But I was slowly healing. I was once again going to have 3 children in my house, this time all my own. 

14 months I was working and healing. 14 months of hard days were becoming worth it. I was incredibly sad that Kimmy wasn't sharing in this healing of the arrival of her first niece. Something we had talked about for our whole lives, a little girl. Somehow there hadn't been a boy in our family for 27 years. Then the two of us brought in 3 in a row. And now after waiting patiently, here she was. But I couldn't share it with someone I desperately wanted to. I cried the morning of the baby shower, because my sister wouldn't be there. I was so sad to not have her with me on the happiest days. 

I am even more sad to not have her with me on the hard days. I miss the texts and phone calls she would have made, to bring me out of this darkness. She was always the brightest sunshine in the room. But stars shine too bright and burn out before their time. So here I sit missing two of the most special relationships in my life. A sister, and a daughter. It took me 14 months to start feeling healing with Kimmy's grief. It came with great tolls. It's only been 7 weeks with Anna. I guess we'll start again. 

I do not know who I am anymore. I have no name to define me. I am just the sad story girl. But I am also the girl who has survived everything else in my path. I am still the sad story you tell your friends about. But I am also the survivor you tell your friends about. I am the strength that other's draw from on hard days. In return, they hold me up on my dark ones too. I am a grieving mother, and I am still a mother. I am so much more than this one word that doesn't exist.

I do not have a name, I do not need one. I will be a story now and forever. Of healing and life after loss, life after stillbirth. My name is not important. Only a reminder that someone else has survived the unthinkable. That someone else can too. 

with love, lissa.   

Phantom pain

The best way I've explained the grief of a child is the analogy that compares it to the loss of a limb. When I lost Kimmy, there was many moments of deep unnerving emotional pain. But there was a lot more breaks from it too. Because there was distance.

Physically, because we lived in different countries. 1000 miles between us. Also because the relationship of a sister allows the distance in your life in a daily way. Though I miss being able to call her up any time of the day to talk. Celebrate holidays together in a way only she knew me. Share memories and make new ones together. She didn't live in this house with me. 

It's not only my house, its my heart too. I carried Anna in a way only I can do. The mother child bond happens instantly and it grows faster than anything else on earth. In those short 8 months, I knew her. When I saw her for the first time, I already knew that face. 

She would not only be with me on the special days, Canada Day first, 4th of July immediately after. Holidays that are meant to be happy, now carrying a 'what if she was here right now.' Each one thought about far in advance. Prepared for with commemorative outfits waiting to be worn. Now hauntingly a mirror of emptiness, my heart as empty at the tiny romper laying flat on the top of her nursery dresser. 

The big days you can see coming, but that doesn't make them any easier. There is still pain in those days. But sometimes the little moments are worse. * When you are awake at 2 am, Thinking about how you would have been awake with a crying baby, but it is silent. * When you are putting kids in the car and know there is a third carseat missing. * When all the tiny laundry you have folded in drawers, is more frustrating than the piles of laundry waiting to be done. * When you recover faster than previous Csections, because you have the option to lay in bed all day instead of caring for another. * When you don't need the stroller on walks. * When there is no bottles on the counter. * When things are NOT happening that you KNOW happen after the birth of a baby.

It is 24 hours of the day. This kind of missing someone is unique. Because a baby is one of the only humans in your life that is with you every single hour. So it is much like a limb, something that you have grown dependent on in life. That you feel you cannot live without. That when tragedy strikes, you realize the human reality is that you CAN in fact live without it. You can work extremely hard every day and recover from the initial incident. But you will never be the same. 

Losing a leg would mean learning to walk with one leg. Losing an arm turns into learning how to eat and write without it. You would develop ways to work around the loss. I am working on ways to move around my grief and loss. Forever changed and forever remembering that loss. I feel the daily urge of something missing in my life.

People that lose a body part that is that significant, often talk about phantom pain. Continuing to feel a sensation of their body that is physically gone. The mind is hard to rewire that way. Rather believing imaginary things over fact. It also describes the intense lack of a baby physically in your life, after you give birth to a baby. Its a 100% part of your life, that is instantly 0%. So my brain continues to believe there is a baby, I feel that yearning to care for it, but I cannot. The phantom pain of absence. 

Unlike a limb, no one can see my pain. My stomach has shrunk back to its previous appearance. I do not get a parking spot tag because I am struggling to move forward. Strangers cannot see that it's a miracle I am grocery shopping. That I continue to live an everyday life, despite the loss.

Mine is a silent unseen struggle, stillbirth brings so much silence to your life. I never realized that a baby crying could be the most beautiful sound on earth. But I know its absence is shattering. I am giving a voice to a silent tragedy in our society. So many people are reaching out to say my words are validating their feelings that they could never express. It isn't easy, I would rather have lost my legs, than losing Anna. But I didn't get a choice. No one gets a choice when tragedy is involved. So we just continue to try and live with our pain. Physical & phantom.  

I am having phantom pain
That missing piece of my body, is a piece of my heart. 
It is a baby that was born, and never breathed.
I am missing her. 

with love, lissa

i'm sorry, I know

There are some situations in life that people use "There are no words," to describe how awful it is. Instead they say, "I'm sorry," over and over again. And they really are. Its a genuine feeling of sorry. And yet you only say it when you haven't lived it. When you live something like this it changes from I'm sorry, to "I know."

I'm sorry is sympathy. I know is empathy. 

- "It’s not that sympathy is bad, not at all. It’s just that empathy invites a connection sympathy simply can’t. Sympathy says, “I feel sorry for you,” while empathy declares, “I am you.” Sympathy requires you to find compassion, from a distance, for another’s misfortune. Empathy demands that you revisit your own pain in order to relate to someone else’s." - I love this description of the difference between the two. You can read the full article here.

When people say that I have a way with words right now, its because I have so many flowing through my mind. I would rather try to express them in hopes that someone out there that has been told "there is no words," finds mine. Finds that they are not alone. That there is definitely a lot of words that can be strung together to describe grief. And although there is no grief that is ever the same, its the most unique experience in life. There are people who are feeling the same feelings. And sometimes just being told, "I know," is enough. 

There is one video on youtube that I share more than any other. A good friend showed it to me the first time I saw her after Kimmy's accident. {I never know what to actually call this event in my life, nothing sums it up quite what it is. Accident that wasn't accidental, loss even though she is still living. Its so complicated. And right now it also compounds my grief.} I find so much comfort in Brene Browns words and voice. I watched this video that was able to voice what I wanted to tell everyone around me. I love advocating the difference of sympathy and empathy, because it makes a difference to people that are deep in the experience that needs empathy.

She says "Rarely can a response ever make something better, what makes something better is connection." Nothing is truer than this statement. Here is the full video that I beg you to watch. Its 2 minutes and 34 seconds that felt life changing to me the first time I watched it. 

While writing today, I opened fb and saw a message from a friend that I have never met in person. But we have been through some shit together. We met over the internet because she had a little boy and had just gotten the craniosynostosis diagnosis. And I was the person in her life that could say, I know. 

The messages between us started on deep empathy. And we have followed each others lives through happiness and further heartbreak. Because life is never all one direction. It's full of ups and downs, and it seems the best people I know, know those really dark deep downs. We are each others supporters, because we remember when we were the ones needing that same support. There are many of my friends who fall into this category. And there will be so many that years from now message me and say, I'm sorry, I know. 

And I will be there to walk them through that passage, like people are doing with me now. 

I know. 

with love, lissa

Self Care Sunday 07.01.18

Self Care Challenge #1
Find someone in your life, or a stranger, or yourself, who can use a life changing, simple, profound hug. <3

You might think this idea was a thought out therapeutic way to add to my healing. Instead, I was just looking at a photo of my kids hugging, and posting it at midnight, came up with a caption and realized it was turning into something much bigger in my head.  

The blood drive is behind us. With it came so much healing and community. It was eye opening to me to see deep connected caring in the world around us. It made me feel so much comfort that we have already begun planning the next one, an annual event to look forward to, instead of a painful anniversary. 

There are other anniversaries. Much smaller ones, that come once a week. Grief is like sitting on a deserted island and counting the weeks off. One line for each week, scratched into your life, gone. They pile up fast. The more there is, the further away you get from that last moment that you were happy. Sunday is that day of the week for me.

It used to be Tuesday I would wait for each week. The pregnancy weeks marked on my calendar. We have just passed the last one, 39 weeks. I am no longer counting down. I am counting up. I have collected 6 tick marks on my cave of grief. And the collection grows each Sunday. 

I dread this day of the week. Its the day I usually don't leave bed at all. But that can't last forever. So in an effort to try and change Sundays into something I can plan and look forward to. At midnight tonight, an idea was born. I had planned to get up tomorrow and do some things that make me feel a little more human. And as I was scrolling through my phone, drowning out my mind, begging it to go to sleep already, I saw the photo. 

My two living children - ugh I hate that I can't say 'all my children' anymore, that there is a distinct difference, not in gender of boys vs girls, but in living vs gone. - A simple photo of them hugging. There is SO many I have of them hugging. Always in a way that adults just cannot seem to usually do. Unconditionally. Can you imagine what a better place the world would be, if we loved each other as unconditionally as children do? 

Those deeply compassionate hugs seem to only come in times of hurt. When we see someone so broken, we feel that holding them can somehow hold their brokenness together for even a short time. And if the hug is a genuine hug, sometimes it can magically do that. So I felt compelled to tell everyone who has given me one of those kinds of hugs in the last 6 weeks, how much they meant to me. And how they should come more than just when life is dark. 

It spurred the idea that other people would be able to benefit from this idea of a challenge. Knowing that it would help me in a vain way of feeling that Anna's death will continue to bring some light into this dark world. Knowing that I need to start caring for myself in the same way again too. The last 6 weeks I have not recognized myself physically and mentally, and I can work on things to change that.

So if you would like to join me, you can follow along for the weekly idea. Some might seem profound, and some might seem so simple. A hug may sound like a simple challenge, but for me they have been on the profound side. And I wish for everyone to feel that kind of human compassion. I think we hold ourselves back in today's world of social media connection, instead of face to face humanity. 

If you would like to join me with this same weekly self care challenge, you can leave me a comment about your weekly act. You can also follow along here, or on instagram. My account is @lissables and I am using #GiveLoveForAnna & #SelfCareSundayChallenges to document each week. 

With love, lissa
 

PTSD

I feel like I cant use that term. I felt I wasn't worthy of it. Post Traumatic Stress Disorder. I just googled it. It has 10 signs. They are as follows.

1. Physical Chronic Pain - I suddenly realize why my back is so incredibly painful. Knots that a professional massage therapist cannot even alleviate at all. The headaches, but those are probably from not eating, constantly crying, and not sleeping enough or too much, depending on the day. The immense heaviness that is physically in my chest. Heartache that is manifesting itself all over my body. Pain, check.

2. Flashbacks - It hits you so suddenly, turning over to lay flat on my back, on a hard surface of the massage table, I should have seen it coming. But suddenly I was back, laying and dying on that table in the ER. The first time I drove the car, I took it on the freeway, and had to pull over because I realized the last time I drove the car, it was this same road, and I was driving to the hospital. I almost died that day, she did. This is the road I will have to drive every single day now, with that reminder. Flashbacks, check.

3. Depression & anxiety - I think since I've been fairly open about being on anti depressants, and xanax, this covers that. But if losing a child did anything to my brain the most, its that I am aware of children dying. And how I have two living children, who can die too now. I had a crazy panic attack while Brandon was coughing in his sleep one of the first nights after Anna's death. I was sure it meant he had some hidden cancer, and I would lose him next. I am aware that this could still be, not the hardest thing I deal with, and its definitely the hardest thing I can deal with. Depression, anxiety, check & check. 

4. Withdrawal from society - Some days I can't leave my bed, much less the house. On days I do, it often leads to intense emotional ramifications. So I retreat back to the only place nothing else can hurt me. Under the covers, with drugs letting my brain turn off again. Because it's all too much. Withdrawal, check. 

5. Avoidance - After being in a car crash, you would avoid driving. This is much trickier. I have learned that facebook has a snooze button, and instagram has a mute button. Every one I know that has babies or is pregnant this year has fallen to those. I wont go to Target anymore because the baby section of the store haunts me. I can't chance running into another mom there carrying an infant daughter, wearing the exact outfit I had just bought. I know I can't chance it again, because the ONE time I set foot in target to buy a black dress for my daughters memorial, it happened. Avoidance, check. 

6. Repression -  Some of the memories from May 20 are so vividly burned into my mind, I didn't think there was possibly things I was repressing. But talking to other people about their experiences from that day makes me realize there is more that I don't remember. I don't remember talking to people on that day. I don't remember conversations that I wrote and can reread. They are not me. A nurse contacted me after the fact and I didn't know who she was. She was the nurse who handed Anna to me. She is one of the only people who met my daughter, and I don't remember. Repression, check. 

7. Emotional Numbing - On any given day you might be surprised how not emotional I am. I bounce between numb and sobbing so much, that sometimes I can be laughing and crying at the same time. Or the complete opposite, no emotion AT ALL. I have watched at least 85% of netflix, because my brain does better when I can concentrate on anything that has nothing to do with this. The tv is on all day and night, the more complex the show is, the better. Not thinking is the only way to not think about Anna every second of the day. Emotional Numbing, check. 

8. Hyper Arousal - This is classified as jitters, on edge, unable to concentrate or relax. 5 weeks after, I made dinner for the first time. Something I used to do daily. I made a meal I was used to making at least once a week. I could not remember where the pot was in the kitchen, in the house we have lived in for 4 years. I forgot to put the noodles in the pot of boiling water for a solid 10 min while I made the meat sauce. Brandon found me crying in the kitchen, he thought it was because a sad song was on. But it was because I can't make spaghetti on my own anymore. Check. 

9. Irritability - constant stress can cause indecisiveness and anger. The unfairness of stillbirth creates such intense feelings. I cannot make a simple decision to save my life. I am sensitive to everything. I turned the tv brightness down and it still feels glaring. Sounds seem like screams. The idea of being in public makes my skin crawl.  Words that used to be words are now neon signs. Someone told me something was a "labor of love," and what used to be a term to describe something, is now just a reminder of birth. And the lack of life because of my birth. Everything, every little thing, hurts. Check. 

10. Guilt & Shame - what a way to end the list. I wrote this post while reading the symptoms and writing about them. One at a time. Why didn't I see this one on the list coming. Guilt is always the biggest symptom. It's all of the previous symptoms wrapped up in one. I have guilt for so many things. But to put it most boldly, I will feel guilt for the rest of my life, that I myself, my body, is the reason my daughter is dead. Don't try to tell me anything different. Thats the only fact I do have. It was my body, and it caused her death. Check. And then shame. This, this is why stillbirth isn't a more talked about topic. Its 1 in 68 births. It's staggeringly common. And yet, I feel shame in talking about it daily. Even though it's all I want to talk about, its all I CAN talk about. But I feel shame about it because who else would possibly want to discuss such a horrific thing? Empathize and go to those deep dark places of life with me. Who would willingly do that? And yet I continue, and I do it with shame most days. But I can't stop it either, so full circle, guilt again. Check, check, check. 

I don't know why I thought I wouldn't see those signs in myself. Why I thought that my situation didn't qualify for PTSD. Post Traumatic Stress Disorder.

How did I think
losing my baby,
holding a still,
not breathing,
cold child,
in my arms,
while coming as close to death as possible myself,
wouldn't fall into this category.

Why do I think that I should be doing any better than this level of living. It is barely living. It is living past a trauma. It is PTSD and I didn't realize it. I wasn't allowing myself to see it unfold around me. It has been 5 and a half weeks. And I have only just begun to realize the magnitude of what is happening to me. 

This is grief
This is PTSD
This is childloss
This is stillbirth
This is me

with love, lissa

it wasnt supposed to be like this

I woke up to an email this morning. Reminding me that we were 3 days away from the blood drive. Seeing the number somehow changed it. I have been working on and planning this blood drive for so long, 5 weeks. That until today, its not really sunk in. 

On June 23 I would have been picking my mom up from the airport. So she could help me get the house in order before we brought a baby home. I would have been packing my hospital bag and putting that special outfit inside. I would have been making everything perfect, the last stages of nesting. I would have been going out for dinner with Brandon, talking about all the fears of the upcoming week. Adding a 3rd child to our family. Talking about the excitement of a girl. I remember all of these feelings from the days before Sawyer & Max. I was so ready to do them again. 

It wasn't supposed to be this way. 

I am supposed to be days away from a baby. My brain can't reverse that thought. The last weekend as a family of four, has turned into grieving as a family of 4 only. I can see my empty stomach in the mirror but my mind keeps thinking maybe it's all a mistake. That feeling of wondering what other parallel universes are out there, I am trapped in one. I want desperately to get back to reality. My reality where none of this happened. 

On my calendar in big black PERMANENT marker, "Baby Arrives 3pm!!" 

Instead, we will begin a blood drive and Brandon will be the first donor at exactly 3pm. I didn't think or plan it that way, and only noticed it this week. Poetic. And wrong. All of it is wrong. I did everything right. And it still turned out wrong. So vastly, unfairly, cosmically hugely WRONG. 

I would have been feeling so much emotion, joy, fear, anticipation, worry, love. I would have been expecting so much. 

I would have still been expecting. 

Now Im not. In every way. 

with love, lissa

GIVE LOVE FOR ANNA

We were still sitting in shock in the hospital. It was the first 24 hours. Nothing made sense, it still doesn't. We were asked to make the choices that no parent wants to make. Cremation or burial. Which funeral home. When would you like to see her, and when can we take her away. For the last time. There is literally not words to describe that experience. It is otherworldly. Like you are out of your body watching your worst nightmare unfold. And that doesn't even come close to it. 

She didn't even have a name when she was born. I was told I had time still. I had 4 weeks, lots of time to decide. Until I had minutes to decide what to write on a death certificate. Naming a baby is one of the best parts of finding out you are pregnant. And here we were only choosing her name, to lose it immediately. 

As we sat in that roomI became more and more unsure of life. What it was suddenly didn't, and will never make sense. I am living the unimaginable. Someone asked us about a memorial service, and I knew I didn't want to do that. To bring people together in sadness, for this life that never got to live. No one but us got to hold and see her precious face. See how much she reminded us of her siblings. the memories are both razor sharp and already fading at the same time. It's not fair, I cling to the memories of my worst day. 

I knew immediately that the only service I wanted to hold in her honor was a blood drive. They were still giving me transfusions at that time. My body trying to recover as much as my mind. I had lost a life that day, I had almost lost mine as well. In a time and age where we take childbirth for granted, a staggering amount of babies and mothers still die. I am half that statistic, I could have easily been both. A 120 second difference would have made me both. I would have died without blood donations already at the hospital waiting. I needed 8 transfusions, plasma, and platelets. I couldn't stop bleeding and entered DIC, a rare and often fatal blood clotting condition, as I arrived at L&D. Had I had to wait for an elevator, I could have died inside it. I had so many needles and transfusions in me within a min of falling to the ground. What happened to save my life is nothing short of miracles, and AMAZING nurses & doctors. Blood donors are a part of that. 

Just a week before this happened I posted about blood donation and thanking the miracles of medicine in discovering the RH- shot in someone's unique blood. I wrote the words "You never know when someone you love, will need it." That someone was me. 

Much like the outpouring of love we have felt after this loss, overwhelmingly, people have already joined our cause. We picked a hashtag to use on social media so we could see the stories and the reach of Anna's support & love. I posted about it on June 1 and people began donating the next day. The more it was talked about, the more it spread. I didn't think we would have enough pledges to fill the blood drive bus, but instead we have had to turn people away. A friend pleaded our case on a base in Germany, and 33 people joined her at the Armed Services Blood Bank. I get almost daily pictures of donations, stretching around the world. So far 4 countries, countless states and provinces. The world is small in comparison to love.  Each donation with a story about how much Anna has touched their life, each one a way that Anna brings more love into the world. 

As of today, plus the pledges for the bus, we have 88 donors. Each donation saves 3 lives. That adds up to 264 people that won't have to live the pain we are in. That don't get told the worst words anyone will ever hear, "Im sorry, we couldn't save them." I cannot donate myself for the next 12 months, having had a transfusion makes you ineligible, your body still needs to recover for that long. So I could not do this without YOU.

264 lives, and counting. Tuesday will be my personal hell. Living out the day I should have been handed my baby, instead we are having her memorial. Her Birthday celebrates her Death day. But we planned this blood drive on purpose. Bringing healing to our hearts, and healing literally to the world. I know so many people are committing to walking us through that day. In donation, in support, in love. 

Thank you for making it more than I thought possible. Thank you for continuing to support us in this journey in every way. Reading these words, providing us meals, dropping by for visits, sending thoughtful gifts, reaching out to say you care, and by making a blood donation in Anna's name. 

There will never be full healing. But this is a good place to start. 

With love, lissa