There Will Be Another

 I've been reminded lately about those first few days, weeks, months after E died. So many of the moments surrounding the death of your child become the images that play over and over again in your mind. At first, they play on a loop, so frequently that you're not sure you have other thoughts. It's like they become as commonplace as your breath, as your heartbeat. And you despise those thoughts as much as the function of your body that kept going when he didn't. 

Others can conceive of the next steps following a child's death, or at least they believe they can. There are funeral arrangements, conversations with your other children, and paperwork that you couldn't read if you tried. But that isn't the part that's been playing in my brain lately. It's the IMMEDIATE moment after that last breath, that last heartbeat that plays on repeat. Because what is that moment? What is to be done right after? You just cradled your child on your lap, set aside your own searing pain, and told him out loud that it is ok to let go. So what's next? You get up off the bed? Do your legs work? Why would they work? HOW would they work? Do you eat? Will food ever go down again? Do you just pick up your purse and walk out?

I still don't remember going down, don't remember what it felt like to hit the pavement. I just know that when I opened my eyes, that's where I was. Also, I could hear screaming. It was a sound so deafening I wanted to also call it silence. When I tried to make out its origin, I realized that it was coming out of me. The guttural, foreign sound wasn't foreign at all. It was mine. My voice. My pain. I know that my sister and my brother-in-law helped me into the car so that we could make the 2-hour drive home. I'd made that trip so many times before, but this time I would both ignore the landscape outside my window and etch it in my mind forever. My chest would burn with aching loss, and my thoughts raced as I tried to make sense of what would come next. What would I do with his toothbrush? Would I keep it? Would his room remember the little boy who just a short month ago had crawled along its carpeted floor and emptied its dresser drawers with the destructive expertise that only a toddler can muster?  Would it be expecting him to come back? Was I expecting that, too? 

I remember the people who showed up, the people who stayed. I remember the ones who would still look me in the eye and the ones who no longer looked at me like I was human. There was a tribe of women who gathered around me, and let me scream and cry and lose myself more and more. They came under the guise of sisterhood, but what they were doing was keeping me from ending my life. And at times, that was certainly warranted. It's not that I WANTED that. I just didn't know how a body and soul so utterly broken were supposed to go on living. I couldn't comprehend it. That's when those who had gone before me entered the chat. Those mothers whose brokenness had left them screaming and burning with their own pain were turning back to hold out their hands to the one who'd just fallen on the pavement. Held their hands out to me. How were they doing that? Were they breathing again? Did their hearts beat like they once had? Would I breathe one day, too? 

While I couldn't conceive of such a possibility at the time, I've come to learn that when the light does start entering again, it fills in the cracks. Nothing is solid or whole, but it is filled with something more, something bigger. And there are times I think of him and only smile. There are times that I'm so unbelievably grateful for the experiences we shared because it allows me to do my own turning back and reaching. It's my hand that's able to reach across the abyss now. It's me who's breathing in without the burn. And instead of being surprised by the ache in my own voice, I hear myself telling the next broken mother there is a next step. And though you can't see it, there is a next breath. It may not be today, or tomorrow, or next year, but it's out there. Maybe we'll take that next step together. Maybe we'll trade who does the leading and who does the following. But if we allow for the belief in that one next breath, there will be another...

I'll Take It

 When my E left the world, I assumed that I'd never again have a fully joyous moment in my life. And I didn't feel that with a sense of pity for myself, but as more of a fact about my new existence. I would think about the day that my other children would reach milestones like graduations, weddings, and worst of all....grandchildren. I love kids, but the thought of the amount of potential loss that grandchildren could bring was too much for my grieving heart to handle. I just "knew" that each of those milestones, although happy occasions, would always be tainted with pain, with the ever-present "someone is missing."

I've absolutely felt his absence in times of joy. It still amazes me that my boy, who never got the privilege of growing up, could leave such an enormous hole. That little 2-year-old leaves a gaping adult-sized wound in places I didn't know possible. However, what I have noticed in the last two years or so is that while I notice his absence, I'm also able to recognize joy in moments I might have missed had I not had the experience of loving that kid. One such moment was my adult son calling my husband and me on the phone while we were driving a long distance. He shared with us that he was happy. "So happy with my life right now", he'd said. He described his job, his new proximity to the woman he loves, and the friends he'd made at work. He talked about playing pick-up basketball games and rounds of golf with new and old friends.  In that moment, I felt this warmth all through me. I felt the excitement of a child on Christmas morning. Nothing was missing. Nothing in my chest felt heavy. I could feel warm tears stinging at the brim of my eyelids and threatening to spill over. Not one of those tears that fell was carrying pain. After that moment, I started noticing more "moments." I could experience that "Christmas morning joy" sitting alone in my backyard as the sun was going down and shining on my blooming flowers. I could feel it when my oldest daughter described her walk to work as she studied abroad and took in new cultures, new friends, and new adventures. The joy came again when our college freshman passed her EMT certification exam. And another time when our twins secured spaces in an incredibly promising high school course for which they'd applied. One of my very favorite pastimes is listening to them giving each other hell and laughing so hard they can't breathe. It's the best sound in the world. 

Of course, those first few times would allow for brief seconds of guilt associated with being joyful as somehow "forgetting" him. What I've learned since then is that I take him with me during these times of joy. When I'm able to do that, I get to have all of my kids at once. It's not in the way I wanted to experience them, but it's something. 

And let me tell you something about adult kids...they can be super cool :) First of all, they can wipe their own asses. Big plus. But also, adult kids who can drink with you kind of rock. Kids who pay their own bills? Hellllllll yes! I get such a kick out of watching them "adult". The gift of E is that I don't take credit for any of my children's successes, so I'm sure as hell not taking the blame :). What I mean is, I don't NEED for my children to be anything other than exactly what and who they are. I'm genuinely content getting to watch them simply reach their next birthday. The rest is details. I get to watch them learn, to love, and to share their compassionate hearts with the world. I've learned so much from each of my children. They each offer unique perspectives and opinions. Some are more opinionated than others, and I'm here for it! ;) All of my kiddos have some crazy, dark humor because we have SEEN SOME SHIT. And while that makes some question their sanity, to me it just makes them mine. We understand each other in a way that others will never be able to comprehend. Don't misunderstand, there are moments that I'd give back every lesson learned to be able to bury my face in those curls again. To drink in his scent, completely oblivious to the reality that children sometimes leave this world before their parents. But that's not what happened in this life. I don't get him in the way I wanted him. I get him in the way I needed him. And you know what? Today? Today, I'll take it. 

Dead Kids Club

 Dead Kids Club. 

That's what we call it. For advertisement purposes it's called Bereaved Parents Support Group, but for those of us who are in it, that's too soft. The word "bereavement" is too pretty. It's too gentle. It can't do justice to the visceral, guttural anguish we experience over and over again as parents whose children never age. 

It's been a heavy week. It could be the weird moon. It could be because it gets dark too early and we're all gearing up for our collective seasonal depression. But the truth is, when you're in this club, you don't really need a reason for things to be heavy. No special anniversary has to be on the horizon for it to be harder to breathe. You don't have to be "reminded" in order to feel that white hot surge of pain deep in your chest. It just comes. And eventually it's as natural to our existence as walking. 

As a nurse, especially in my current role, I have lots of opportunities to meet patients in some of the most trying times of their lives. As a grieving parent, I often find myself among new "club" members far too often. This was a week where all parts of me seemed to have been highlighting the heaviness of grief. It's odd as a grieving person when you're able to take on difficult conversations and do so with such clarity and purpose because sometimes random, ordinary days will come along and a slight breeze will push me to my knees. I'm often surprised by the body's response to grief and the way it holds it, almost as if to "keep it safe" until later. 

I wasn't sure what I needed tonight. Did I need to talk through the week's experiences in detail? No, that didn't feel right. Anytime I tried, I felt like the energy required to open my mouth and speak was more than I could handle. Did I need to cry? Not necessarily, although sometimes that's helpful. So what was it that I needed? I needed my people. I needed that group of hearts that were just as shattered as mine is. I needed to say "out there", unhinged, heinous shit and watch them not blink an eye, but instead nod along in silence. There is such a strange gratitude for your fellow grieving parents. While you'd give literally anything not to know this pain and wish they didn't know it either, there is this deep, lasting comfort in being held in the gaze of another broken parent. 

I don't know why any of us had to belong to this bullshit club. I'm not sure our paths would have crossed otherwise, and while we cherish our connections, not one of us would give up the opportunity to go back, change the past, and NOT be one of the people sitting in those chairs tonight. Because that isn't possible, we'll continue to cling to one another. We'll continue to fully understand when one of us talks about how life is too long and that if tomorrow never comes we'd be ok with that. There are no concerned looks. No embarrassed faces. None of them avoid my eyes and try to pretend like I don't exist in an "uncomfortable" moment. It's them that I needed. I needed my people. I needed...

The Dead Kids Club. 

Birth, A Team Effort

 My role in nursing has changed in the last couple of years and one of the things I find myself doing relatively frequently is teaching prepared childbirth classes. I really love this aspect of nursing and I'm grateful to have had the opportunity to meet patients before delivery and to discuss ways in which we can work together to get them the experiences they want. 

One of the things I mention in every class I teach is the role of social media in birth experiences. I actually love social media in many ways because it gives people access to information that wasn't available in previous years. However, like most things, you have to know what to do with that information when it's received. Is the content creator credible? Is the person trying to sell you something and using fear mongering to do so? Do they acknowledge and recognize all parts of the healthcare teams/support entities as being important? These are things I stress to new parents. For some reason, it has become acceptable and even expected for people to tell you all about the trauma they experienced during their own births. We do that at an alarming rate in the U.S. And don't misunderstand, I very much believe that there is a time and a place for those who have experienced traumatic birth to share those experiences, if for no other reason than to find community and comraderie among their fellow survirvors. That's incredibly important. 

The other piece that I think maybe needs to be a little louder is the one in which we champion these delivering people and the capabilites of their bodies. Stories of empowerment and strength even in the face of deviation from a birth plan is equally important. It takes incredible strength to experience a c-section and then stand up hours later to sustain the life of another human. The resilience and selflessness it takes to do that is amazing. 

And maybe the thing that is missing most is the desire to work TOGETHER to effect real change in birthing stories. It takes a village, from the very start, to truly support and encourage new life. The patient/delivering person/mother is first of course. The desires, fears, and plans of that person must be paramount to the decision making. Next is the family/friend support for that person. And then equally as important to a birth experience are the doulas/birth advocates and healthcare team. The thing I see most often in the "fear mongering" mindset is the idea that those of us in healthcare desire forcing things on our patients. And in my experience that simply isn't true. We want what you want! We want a healthy and happy family. We want skin to skin, delayed cord clamping, cultural practices acknowledged to the best of our ability. I believe in order to effect true, lasting change in maternal healthcare in America, it is going to take significant bending and learning from one another. It isn't enough to simply rely upon healthcare to professionals knowledge and practice. It also isn't enough to completely disregard the science, education, and experiences obtained by those same people. It must be a multi-faceted conversation, and all parties need to be willing to listen and learn. 

Birth stories are some of the most important in our history. They're the beginnings of every person you'll ever meet. No one on earth escapes a birth story. My hope is that the future of birth in America is one of collaboration, setting aside of ego, and effecting change in a way that honors those who bring us into the world. 

Come On In

 She gave a speech that brought tears to my eyes and also made me laugh. 

He graduated college and is starting a job for which he's very well-suited. 

She stayed true to herself and cheered on her team until the bitter end, and then shed real tears as the last pitch was thrown. And they were both there to support her as she left the ball field for the last time. 

He has his own apartment, a relationship that truly makes him happy, and a future that keeps him smiling. 

All of this happened while you were supposed to be turning 15. You were supposed to be watching them move those tassels. You were supposed to be making fun of your mom for tearing up from time to time. But just as each of their milestones have been met, you've been missing. 

Your absence has often made it impossible for me to become emotional in the "normal" way moms do when their kids move on in life. I can't be upset that your siblings leave for college. I'm so unbelievably excited for them and I always know where they're going. I can GET there. I can't get to you. And no matter how much I try to be normal in those moments, I can't. It makes for yet more lonely experiences in a motherhood that has been fraught with them. 

That's why I was surprised by my tears as I watched your sister put her softball glove away for the last time. I didn't expect it. I looked to your dad and saw his tears, too. I realized in that moment how unbelievably grateful I was for a "normal reaction" moment. We were kind of like the other families for just a breath. We felt the sting of "loss" and "never again". I felt a brief sense of relief washing over me as I realized that maybe, just maybe there would be moments in our future together that we could feel real joy. Joy that wasn't tainted by pain. Maybe we'll shed tears again when chapters in our lives are simply closing. Could we be healing in ways I didn't think possible? Does the healing mean that we've forgotten? If I'd experienced this a couple of years ago I think I would have chastised myself incessantly. I would have assumed that the fact that my grief and my joy could live side by side was a sign of failure. But then I think about the way that people who never got to meet you say your name. I think about the cupcakes shared this week in your name, and the way that my friend always honors my grief. She said your name to new people this week, and instead of the pain in my chest I felt such a sense of pride that you're still so "present". We did that. Your family. The people who love you with a fierceness that transcends death. We did that. 

And Sara holds your birthday as a sacred day in the same way I do. She, too, refuses to work and gives attention to you in a way that somehow keeps you with me. 

As they grow and become people on their own, I feel like our strengthening bonds are a tribute to you and how "present" you still are in our lives. We have an appreciation that others can't know in the way we do. While that can feel isolating, it's also something that draws the five of us together. I didn't see that coming. Parenting you still comes with surprises and gifts. Yes, grief lives here. But now we pull up a chair, invite it in, and it brings love with it. Thank you, E. Happy Birthday ❤️ 💙 💛 

It Stings

 It stings. I couldn't put my finger on it for the longest time. Why did the sun hurt so badly? I wasn't sure why the change of seasons weighed so heavily on my heart. I think maybe I've discovered at least part of the reason that the tears sit so close to the surface these days. It came to me when I put my face to the sun. I needed it, just like every other Midwesterner after a loooonnngg, unbearable February. But like everything else in my life now, it stung a little. 

I remember when I was about 11 or 12 years old and I was taking a walk in my very small, sleepy town. I was alone and it was the first truly beautiful day after a long, cold winter. I was so happy, so "filled" in that moment that I thought, "this is the height of happiness. This feeling right here is what it's all about. I needed this sun so badly and I didn't even know how much until it had gone." I felt a very similar feeling every time Christmas would roll around. I had the magical childhood Christmas experience described in books. I also felt the minor let down of that first season after I'd discovered the "truth" and I wondered if I'd ever feel that same Christmas joy again. It stung a little. But then my own children came and that feeling was bigger than I could ever imagine. No Christmas morning or first day of spring all rolled into one could have captured what it felt like to be a mother. Of course I experienced the moments that I thought were tough in my early years of motherhood, but ultimately, I'd found my calling. My children were my reason. Life made sense. 

And then I held him as he drew his last breath. In that moment I was a lifetime away from the young girl with her face to the sun. I was light-years beyond the mother of excited toddlers running toward the magic of Christmas. That was the moment I left my old body and entered one completely foreign to me. This new body didn't hold the same memories. It didn't FEEL with the same enthusiasm the old one had. It was like shrugging on a coat that wasn't mine, but that I was never allowed to take off again. This "coat" couldn't conjure up the feelings of blissful nostalgia I'd once known. Instead it hung heavily, unforgiving and immeasurably unkind. I didn't want it, but it's what I was given. It took so long to learn how to feel anything but pain beneath weight of that coat. It was a painstakingly long time before I realized that joy could exist there. Not in its entirety, or in the form I'd once known it, but it was there nonetheless. It was just sunshine that stung a little. Christmas magic that burned a bit. 

So that's where my love for those things has gone. It's still there. I still long for the green that shoots up out of the ground in March and I absolutely lift my face to the sun once again. But I must also allow for the sting. I have to heed the weight of the unwanted coat. I don't get to decide that it no longer exists. And as many grievers know, in a way, I don't want it to ever leave. But in those first few moments of sun, that first sign of Christmas magic, that sting that I can often so expertly hide, is the only thing I feel. It's like my broken momma heart feels I OWE her this pain. I must acknowledge her existence, even in the sun, maybe especially in the sun. 

I don't know if this is a feeling that grows smaller with each passing decade. So far it's still strong enough to pull me to my knees. However, you'll likely find me smiling or going about my work while pulling that unwanted coat a little tighter around my shoulders. So if you see me with my face to the sky, believe that I too am grateful for the sun, while I'm also feeling the sting. 

Empty Chair Graduate

 There were no invites. There has been no scolding regarding the 8th grade cap and gown that you need to hang up to avoid wrinkles. There was no last minute trip for a dress shirt that fits. We won't dress up and cram our exceptionally large family into an uncomfortable pew. There will be no moving of a tassel from right to left. 

But there will be an empty chair. 

They'll display your chair. It's a chair for a toddler who never got to require something bigger to hold him. Your big brother's bookbag will sit in it signifying something I needed to see. Signifying what, I don't know. Why does it need to be there? I honestly don't know. It just does. I need for the emptiness to be acknowledged, even when I won't be there to see it. You won't be there. I won't be there. But it will be, and that will have to be enough. 

The familiar burn in my chest has been there in all its cruelty and comfort. It's you. My connection to you. I hate it and need it. It takes my breath and gives you life. I can walk and talk and even smile through it. But it's there. It's heavy and makes everything slow. I remember the first time I had to don a lead apron again at work after you'd gone. I thought "that's it. This is exactly the heaviness I feel when grief is loud." But I can't take this heaviness off and hang it back up. I just keep carrying it, through work, through talking, through smiling. Can others not see it? I can't believe they can't see something that causes so much pressure, but they can't. If they could see it they'd ask why I was carrying such weight. They'd want to know why I didn't just lay it down. You and I know that can't be done. It must be carried. It cannot be ignored by the wearer. At some point it will be acknowledged and given credit for its immense weight. 

I spent an incredible amount of time today wondering what favorite restaurant you would have chosen as your 8th grade graduation meal tonight? I laughed when your big brother had his choice of anyplace he wanted and we all huddled around tall tables at Jimmy John's. I'm almost certain we'd have a main dish of ice cream tonight if you were to decide. Maybe if grief allows me to eat later, I will make that my dinner. 

That chair. Instead of registering you for high school with your classmates, I sent a message requesting that one of the freshman teachers please allow me to set your chair in their room for the year. That's not how this was supposed to go. I wasn't supposed to feel so heavy, to be walking through air that feels like deep water. I'm not supposed to be lying next to your garden, listening to my coveted "pain playlist" and writing to you in this way. That chair shouldn't exist. A smelly, curly-headed, goofy boy should be in its place. What I wouldn't give to see that boy/young man today. 

I can't watch them walk down that aisle. I can't listen to their names being read from a podium. I can't sit there and know that I won't see your face in that sea of classmates you never met. There will be no Mom. There will be no sisters and no brother. No grandpa and grandma. No aunts, uncles or cousins...

But, there will be a chair. 

There Will Be People

 A letter to my 2012 self,

I know that everything is upside down today. I know that there is a deafening static in your ears as the realization of what you're experiencing washes over you. Right now, and for the next year, you'll be in the tunnel. You'll have no idea what you're supposed to do with yourself in the coming days. People will ask why you're out and you won't know how to answer. The static stays. And it stays loud. It drowns out any rational thought. 

This past week has been a veritable Hell for you. You were alone in that room when the unknown doctor came in and confirmed what you'd known in your heart for quite some time. He stayed for awhile but you didn't hear him once the first sentence left his lips. The static replaced his voice. 

You made an impossible decision. You told your babies and they hit you and screamed at you to fix it and give them their brother back. You just took it. You let them pelt you with their little fists and their big feelings and you held them closer, almost as if you could keep them from breaking through sheer will and love. 

You held him. You sang to him. You cradled him in your arms for the rest of his life. 

Right now it seems that everything from breathing to walking is impossible. It feels like they forgot to pronounce you gone at the exact same time. It's impossible to even begin to imagine any kind of "life" after this...

But...there will be people.

On that first day home, your neighbors, who are also grieving parents, will carry you into your house. 

For the first few months a tribe of women will gather over and over again, despite having their own lives, to sit with you to let you scream in pain. 

One of those women will literally pick you up out of the snow. And she's still holding on, 11 years after this day. 

People will honor his life with kindness and love for others. Hundreds of people. 

Your closest people will listen to the pain. They'll hear the stories of these final days and they won't back away. But instead, sit with you in your brokenness. 

A friend, and fellow broken mother, will be a lifeline on more days than I can count. 

Every year at this time, your "people" will see your fragility. They'll handle you with care and love you in the most beautiful ways. 

At some point you'll take breaths that don't crush your soul. You'll reach for others who have experienced this pain and you'll hold onto them as much as they do to you. 

You'll still want to leave this world. And you'll explain that you only mean to see him, to be his mother, to want what all mothers want. And sometimes that desire will wash over you with a force that you're sure you can't withstand...

But...there will be people.

Your babies who once pounded your chest in pain, will grow and thrive and look at you with different eyes. 

Friends will gather to bring you meals, and a clean home so that all you have to do is to remember and to grieve. 

The static will soften and be replaced with a different sound. It will be the voices of those who continue to love you despite your brokenness. You are surrounded with such an overabundance of love that it will almost fill those cracks made in your heart so many years ago. Almost. You still get the odd comfort of your grief. You will remain broken and some days, shattered. But you'll breathe again. You'll even smile. And all because...

There will be people. 

Fragile

 Today was a "fragile" day. I call it that because that's how I feel. I don't really know exactly how to describe the extent to which my fragility affects me. It's said time and time again that grief comes back again and again like a "tidal wave". And while that's true, that isn't the only thing that happens. 

I'm always surprised at how blind-sided I am by this tsunami of grief that washes over me. It feels like, that at this point, I shouldn't be so caught off guard. But I am. Every damn time. This is a rough time of year, which may seem obvious given upcoming holidays, but this season is particularly tough for me in relationship to my timeline of loss. The thing is, I "know" that, in my brain. I could tell you that if you asked. However, it still somehow sneaks up on me. And my body knows first. Every time, my body feels the pain, the anguish, the weight of grief before I'm consciously aware. 

Today I woke up and my son was dead. I actually panicked. My chest burned like it was on fire as the bastard that is PTSD coursed through every inch of my body. I don't just "remember" the pain, the fear, the guilt. I'm actually THERE. I'm transported back to the smell of the hospital room. I'm being asked to make that same decision again. I feel the immense guilt and searing pain of signing on that line. My arms are actually heavier. My lungs unable to take on air in the way I could just moments ago. At one point I was pretty sure that if someone even accidentally brushed up against me that I'd crumble to the ground. I felt as if my skin was not enough to keep me from going everywhere at once. Fragile. I feel fragile. 

Grief Apple

 Sometimes I wake in the middle of the night, and my son is dead. That's the best description I can give for being slapped with reality in these moments. It's odd to me that after years of grief and very much "knowing" this fact, that it would continue to hit me SO hard at times. 

It's mentioned frequently that grief is like a tidal wave when it hits out of nowhere. I can't believe the accuracy with which that describes the absolute blast of reality I experience. There is no special date or anything right now, and I've found throughout my grief life that these waves can be even more damning when the latter is true. A random Tuesday will hold so much pain and so much reality that your chest is crushed with the weight of it. Sometimes I'll be seemingly oblivious to anything but mundane tasks and I'll reach for an apple in the produce aisle of the grocery store and that sneaky bastard, Grief, will deliver a blow so devastating that I simply have to abandon that grief apple, as well as my cart and walk out of the store. 

He isn't here. He isn't physically ever going to be here again. He won't see his siblings graduate, begin their careers, maybe marry and have children. That's real and right now it's so raw. My babies feel it too. I've seen it in them. Two of them recently left for college and the reality of who  isn't here has hit, at times, with a new vengeance. I wish I could take their pain. But I also know that it is my grief, my pain, that connects me to that boy sometimes. It's the thing people can see. They can't see him, but they can look into our eyes and recognize that he was here, that he IS here. The dichotomy of raging against that grief while also pulling it close and holding onto it for dear life is something I couldn't have imagined if I'd tried. 

As I get older, maybe wiser, certainly more grateful for the gifts in my life, I recognize that my grief has shaped this skin I'm in. It has tormented and twisted me inside and out. It has found me on a couch at 2am, listening to the sobs of my now teenager as he/she laments the loss. Grief has added lines and scars. It has shoved me to the depths of human despair, and has also raised me to a height I would have never known possible. I often don't know what to do with the absolute tsunami of grief I sometimes experience. All I know, is that sometimes, in the quietest dark, I wake suddenly and realize in the screaming silence that my son is dead.  

MIZ...I'll see you

 I don't fit again. The loss of a child changes so many things about the way you used to fit into society. When that piece of you dies with them, and a new you fights for life again, the end result is a person who no longer recognizes the you that you left behind. 

Confused? Me too. My oldest two children are leaving for college on Wednesday.  We've been packing and planning for a couple of months now, but official move in day is in less than a week. I've talked to each of them separately about how I'll miss them, and that I'd love it if they'd send me a text every once in awhile. But there are no tears. There is no longing. I'm not sad that they're in this place in their lives. In fact, if anything, I'm really excited. 

I know I've talked about this particular sentiment before in that I've mentioned that I don't have typical "mom" feelings anymore. That's probably to be expected. But there is a sense of guilt, or almost like I need to hide how I'm feeling because it doesn't meet the social norm. And that's why I chose to write today. As always, I write to process difficult emotions. I write to heal. And I needed to see, in writing, that what I'm feeling is ok. Maybe someone else needs to see that, too? 

I don't begrudge you your feelings about your children leaving for college, or starting kindergarten for the first time. I don't hate your posts about your worries and fears as they make their way into the world outside of you. I guess what I need, is for my feelings to be ok, too. I need for it to be ok that when I DO read the posts lamenting college drop off, that it's ok that I don't feel that. I need for it to be acceptable that because I don't feel that, I hurt a little inside. 

Once, early in my grief, I tried explaining to a worried coworker why I mentioned wanting to die in such a nonchalant manner. It wasn't that I wanted to take my own life. I just wanted college drop off day, like everyone else does. Why do you drop your kids off? Because you want to see their new home. You want to meet some of the people with whom they'll now be spending their time. You want to make sure they're comfortable in their new surroundings. That's all I want as well. But, for me, in order to do that, I'd have to go to heaven, right? I can't see his "room". I can't see his "friends". I just wanted what we all want. 

I'm so proud of the two young adults I'm "dropping off" next week. I only take so much credit for them, but I believe they're pretty good humans, and that was always the goal. They're kind and compassionate. They're accepting and loving. And they're both going to love this next adventure. So though I'm not at all sad, and I likely won't have any tears for them, what I will have is an overabundance of gratitude for getting to witness this day. I may not have a map to heaven, but I can sure as hell get to Columbia...go be awesome, my babies! 

Grief Gratitude

 I haven't talked about grief in awhile, and there's a reason for that I suppose. It's just always there. It shifts and changes. It teaches and torments. It causes darkness and provides clarity. But one thing remains steadfast through all the changes, and that is simply that it never leaves. 

When I used to think about a lifetime of grief, it made me nauseous. I would physically react to the thought of carrying the weight of this burden for the rest of my life. However, in true "what-the-hell-is-grief-gonna-do-next" fashion, that thought has shifted once again. 

Christmas felt different this year. It's felt different every year since Easton died, of course, but this year's differences struck me as more unexpected than normal. This year I noticed my gratitude for Christmastime was greater than even before our loss. The family time and togetherness I was able to experience felt deeper and richer than I've previously felt. And that's not to say that I didn't appreciate Christmas when my earthly family was whole. I did. I just didn't understand fully, exactly how gracious I could be for that specific time. 

Christmas used to be my favorite time of year. I, like many, would get swept away by the magical feeling it brings. I loved decorating. I loved buying the perfect gift. I loved the family time. And I THOUGHT I knew what it meant to be grateful for that. But I didn't. Even though I knew in my head that not everyone enjoys the holidays, that some experience depression, and that some people don't have loved ones around, I didn't ACTUALLY KNOW the depths of that pain. You can know something, and not KNOW it. If grief has taught me nothing else, it has taught me that! Although I could articulate that I was grateful for family and friends, somewhere in the recesses of my subconscious I felt OWED those things. Almost like it was whispering "well sure I'm grateful, but of course I have a happy, healthy family. Of course I have a loving partner and kids opening presents." That sounds ridiculous even as I write it, but ultimately it's true. So, after Easton died, I mourned many things, obviously. One thing I was really PISSED about was that grief had taken my love for Christmas. I couldn't breathe on what used to be my favorite holiday. I resented family members who could still enjoy moments of Christmas. It opened an already bleeding wound that I was sure would never heal. My grief, my pain, my agony, showed up in sheer anger. And I've felt this way for MANY years. 

The past few years, while anger has certainly been my companion at Christmastime, it has softened, slowly. The addition of two children whose Christmas experiences needed to be good ones, certainly softened some edges. My best friend being a professional gift giver and lover of making a big deal out of birthdays and holidays was a huge part of my ability to sort of hold pressure on that wound, at least long enough to mimick her process. The past couple of years, I've overbought for my children. And it isn't because I think they need THINGS. It's because I was trying to heal a portion of myself I assumed had long since died. Despite the fact that my children are older, I still choose wrapping paper they've never seen. I hide their gifts from them, and I put them out the night before Christmas after they've gone to bed. They humor me now, as a way of honoring both my grief, as well as their own. Even if they don't realize that's what they're doing, it most certainly is a part of the healing process. 

This year, I not only looked forward to Christmas, I sat and listened to my now teenage grievers and asked them what THEY would like to see happen in relationship to their brother on Christmas. It was healing and eye opening, and only this year have I been in a place to even ask the question, let alone honor the answer I was given. And I make no apologies for that. I have done exactly all that I could in order to keep breathing each day of the past 10+ years. I'm so grateful for each agonizing step we've taken that has gotten us to this place. I've spent this year having HARD conversations about grief with my children. They've shared their current pain as well as their childhood pain that I wasn't able to hear about when they were young. I'm in a place now in my grief life that I can hold some of that for them. I can let them know that I realize they lost their mother for awhile, and that although I couldn't have done it any differently, that I'm sorry for the intense pain and fear that caused them. I'm able to do the same for my husband. We left one other while grieving. We had to. Not physically, but emotionally, and that's certainly worse in my book. We couldn't be what the other needed at that time. And so we're using our combined knowledge of our own specific grief to carry one another through this particular part of the journey. That's not to say that it won't shift again someday. We aren't naive enough to believe we have learned all things "grief". 

I guess this rambling is simply meant to highlight my gratitude for my grief journey. Would I prefer ignorance and having my son here doing all the preteen things that make a mother crazy? Sure. But that wasn't our soul plan. That wasn't what was mapped out for us. So, I'll take our mutual agreement to learn grief, longing, sacrifice, and gratitude, and I'll see things differently than I would have had I never known the honor of being his mother. ❤️💛💙

Woman Up!

 I've always loved my job. It isn't lost on me what a gift that is, to love the work you do. But these past couple of years have given new meaning to my gratitude. Suffering from long covid changed so many things about my life. As I get healthier and stronger, I get more and more of myself back. And getting more of "me" back means getting to be the nurse I strive to be. 

I'm back to work full time now, and have been for about three months. I never realized how much I truly needed to use the part of my brain that exists as a labor and delivery nurse. I always tell people I have the greatest job on earth. I believe that because I don't know anyone else who walks into work and meets a stranger, but by the end of their workday, is present for one of the most important moments in that person's life. Each delivery is a gift. And I don't take that for granted. 

Usually when you tell someone you're a labor and delivery nurse, you get one of two responses: "oh, I'd LOVE to rock babies all day!" OR, "oh that must be the happiest place to work!" While the first response is mostly just annoying 😉, the second one definitely has some truth to it. Am I happy where I work? Yes! But I'm happy because I love my job. I love my team of coworkers. And my bosses are the best. However, you know what the best part of my job is? I get to watch women empower women every single day. How many people get to say that? Whether it's a nurse or physician encouraging the mother, a family member or spouse, it's incredible to watch a woman realize her true strength in such an intense moment. I absolutely love it when  a patient says, "I can't believe I just did that!" Believe it, sister. And it was an honor to be here. 

I've been thinking a lot lately about the power of female relationships. I'm so blessed to be surrounded by incredible women. They've pulled me from some very dark places, and held me upright when I couldn't stand alone. I  currently talk to other adoptive mothers on a daily basis, and we reach across the country, across the world at times, to build one another up.  I look at the strength and resiliency of my four beautiful daughters as well, and I marvel at their tenacity. Is there anything more beautiful than women lifting up other women? I'm not sure there is. 

So, I guess what I'm saying is, if you find yourself hurting, or needing a change in your life...WOMAN UP! Find that sister that just brings out the beauty in you. I'm grateful to the amazing women I call mine. Thank you for the gifts each of you bring to my life. You're appreciated and loved beyond measure. ❤️

Twelve

 Twelve. You're supposed to be 12. I don't even know what that looks like. What does that mean? Anyone who knows me has heard me say that "I hate 12". As a parent, I've always felt like 12 is where I stop having the answers, and hormones kick in, and the craziness starts. But right now I'm so angry that I don't get to be annoyed by "12". 

Are you bigger? What kinds of things do you like to do? What do you want for your 12th birthday? I know what I want for all of your birthdays. I want to complain about how busy I am because it's the end of May and so many things are happening around us as we celebrate your day.  Instead, I'm doing what I always do the night before your birthday. I turn inside myself. I let the pain and the hurt wash over me. I allow my tears to wear me out to the point of falling asleep, only to awaken on that day and cry again. Everything else gets shut out, buddy. It's our day. Me and you. I can't let anyone else in, and I don't apologize for it. 

Still...none of that explains why you're not here. I'll never understand it. I used to be so very angry. I was even angry with YOU for leaving. I know that's not rational, but nothing with grief is ever rational. Sometimes I wonder what I had done to deserve this level of pain? What has anyone done to make them know the depths of Hell that are reached when you lose a child? But I know that isn't rational either. No one deserves this. No one. And ultimately, it doesn't even matter how it happened. The bed is still empty. My arms are still empty. 

I wonder if I were able to see you tomorrow, on your 12th birthday, if you'd be as tall as your big brother was when he turned 12. I know you saw him graduate recently. Were you a proud 12 year old brother, who showed his "brotherness" by poking fun of him and laughing at his expense? Or are you our sweet, loving, cuddly baby brother with blue eyes as deep as the ocean? Could I drink in your baby soft curls if I were allowed to visit for the day? 

These are the questions that won't be answered. These are the things that gnaw at my heart, and bring me to my knees in the strangest moments. I'll never know why you had to leave. I'll never know if my decisions were the "right" ones. I won't get to do it over again, and change the story. So, I'll do what I do on our day. I'll go to our place. I'll sit in the screaming silence. I'll let the burning wash over me. And tomorrow, I'll love "12". 

Tomorrow

 I had absolutely NO idea what I was doing. I was barely 21, and roughly the size of a house, and I thought I knew what to expect....kind of. Then I experienced this long, tumultuous labor and delivery. It was one filled with fear and uncertainty near the end. Little did I know, that was only the BEGINNING of the uncertainty. I thought my baby was tiny. I thought my baby was going to get here quickly and effortlessly, and that I'd be able to go back to finish my senior year of nursing school with no problem. Aaahhhh....ignorance, it truly is bliss. That September day in 2003, I was handed 10 pounds 12 ounces of uncertainty. 

While it took me awhile to figure out how to sleep, shower, cry, feed, dress you, dress myself, etc...you were a little piece of perfection right from the start. My big, "tiny" baby with inquisitive eyes from day one, you gave me the role of mother. I learned more from you than you're likely ever going to learn from me. You've always been so aware of those around you, so in touch with the emotions of other people. Your ability to read the human condition from a very young age has always inspired me. From your sweet, little toddler voice to those days when you began towering over me, each day, each moment with you has been a gift. 

Tomorrow. Tomorrow is the day that you officially leave high school. I know I'm supposed to be sad, or "happy/sad", but I'm just not. I'm so unbelievably grateful to have been the person who got to watch you get here. I got to see all of your "big" moments, and the little ones that were actually bigger than we knew. I've gotten to stand in front of you and reach back for your little hand. I've gotten to stand beside you, when you no longer needed that reach. And now I get to stand behind you as you go off to be amazing. The thing is, you already are amazing. You were that first day I saw you. You've been everything I could have expected in a son, but oh so much more. Our family life took a hit that no one should ever experience. And maybe that's why I'm not sad. I know what NEVER seeing this day looks like. But our loss of him does not define you. You are so much more than your losses. As you've grown into the man you've become, my proudest moments are the ones where you're not even around and a friend, teacher, relative, stranger, tells me what a kind, compassionate, and thoughtful young man you are. There is no greater gift than that. 

Logan John, we know better than most that nothing is guaranteed, but I choose to believe that if we're going to be here to live life, we may as well LIVE it. I'll hold your hand when you need it. I'll stand beside you when standing alone feels too hard.  I'll stand behind you when you need a safe place to land. But no matter where you want me to stand, know that every part of you makes me proud. You are more than ready, more than capable of doing amazing things all on your own. I just happen to be the woman honored enough to watch what you do....tomorrow. 

(I'll love you forever, I'll love you for always, as long as I'm living, my baby you'll be)

Covid Survivor

 September 14, 2021

It has now been a full year since I contracted Covid-19. I remember those first few symptoms, and how sure I was that I was going to be the mildest of cases. I had BARELY a tickle in my throat, but because of my husband's positive test, my proximity to him, and the nature of my job, I chose to stay home an extra day after my initial negative result. I will always be glad I made that decision. Little did I know, the previous shift would be my last full time shift for at least the next year. 

I tested positive 4 days after my negative test, and the fevers had started. I was still able to walk each day with my husband and we made sure to move as much as possible. Living in our shed so that we could quarantine away from our children was a luxury that I realize many do not have. People started bringing meals and sending up prayers, and we were incredibly grateful, but still pretty certain that we'd come away from this unscathed. 

It was day 8 of infection when we went for our evening walk, and I remember looking at Jeff and saying, "you know what? I'm a little winded. That's weird." I was able to walk about another 100 feet for so before I decided that maybe I should go back and rest and try again later. That night the pain that overtook my body was horrific. My skin hurt so badly that touching the sheets of the bed felt like razors. I tried to get up and make the walk to our bathroom that only he and I had been sharing in the house, and I had to stop twice to try and catch my breath. The following day, I had a telehealth appointment with my physician and she all but begged me to go to the hospital. (Nurses are terrible patients...) I really felt like if I could just get through this little bump in the road, I'd come put on the other side just fine. I think I left for the hospital about a half hour after getting off the phone with her. 

The hospital stay was frustrating and long and really showed me just how little we understand about covid. The staff was wonderful. We just didn't know what to do with people who made no clinical sense. I spent 10 days there, and the massive amounts of steroids I received sent my pancreas over the edge, and I now get to experience being a true diabetic. 

I've spent the last year going to countless doctor appointments, as well as physical, occupational, and speech therapies. I've tried about every supplement available. I read about covid ENDLESSLY.  My physical therapist is incredible, and is truly the only reason I have good days with my breathing right now. His dedication to my health and his fascination with the body's response to covid has been invaluable to me. I'm extremely grateful. 

I continue to experience some shortness of breath. I still have dizzy spells, headaches, crippling fatigue, tachycardia, and vision changes. I'm down to about 1-2 fevers per week. I AM getting better. Each day is a new challenge, and I'm trying with everything I have to get back to being the mom, the wife, the nurse that I once was. 

I know there are those who believe I'm being dramatic, and that I'm making this up. And you know what? That's ok. Honestly, if I hadn't experienced this myself I probably would have never believed the extent to which one virus can transform your daily life. I have an incredible support system. My bosses and coworkers, my family and friends, could not be more supportive and understanding. I know how lucky I am. And thank everything that is holy that I have people to talk to who know exactly what I'm feeling related to long covid. I wouldn't wish this on anyone, but I'm so grateful that I'm not alone. Unfortunately, there are MANY of us. 

I'm grateful for each step forward. I'm grateful that with each fall backward, someone is there to help pull me back up. I'm grateful for good research and advances in medicine. I'm grateful for my vaccine and for those around me who are protecting those of us who clearly don't handle this well. And mostly I'm grateful that after a year of dealing with this, I can still say that I'm a survivor. 

TEENS

So, one of the things I've learned in my 39 years of navigating whatever the hell this life of mine is, that I always seem to do better when I can read about someone else's shared experience. Grieving parents, unfortunately there are many of us, but it is oddly helpful to be able to see that someone else has been where you are, isn't it? Covid long hauler? Nurse? Wife? Sister? Daughter? No matter what hat I wear, there is comfort in knowing I'm not alone. And it is that frame of mind that brings me to this blog...

Teen and tween moms....HOLY HORMONES, amiright?! I don't know why we spend so much time focusing on the "parenting we'll have to do when we have teens" revolving around drugs and sex ed. I mean, that's not even on the radar! We're too busy over here dealing with all the existential crises....good lord. I swear if one more kid says to me, "I don't know what I'm going to do with my life!", I'm gonna lose it. No shit, kid? Me either. And that's always met with,  "oh mom, why do you always say that?" Um, because it's TRUE! This isn't for your benefit or to make you feel better, child. I seriously feel like some days I'm still searching. And guess what?...that's ok. Sheesh. 

I've got 5 of these people in my house. Who thought that was a good idea? If we're not bitching about who stole the last tampon, we're complaining about who's using the most wifi🙄.  I have always said that my least favorite age to parent is 12-13. I stand by that. Yes I love all of my kids, blah blah blah, but come on, let's be honest....they be nuts. Somehow that bridge between childhood and teen years is the most difficult to cross. The fact that I can't do more to help them over it, makes me crazy! I feel like I spend an insane amount of time explaining that we all have insecurities in life, and that we all have moments where friendships shift and change, and that sometimes you're just going to have shitty experiences when it comes to other people. Good grief, I need a counseling degree for this stage, and *spoiler alert*, I don't have one! 🤦‍♀️

But let's get down to the real nitty gritty of what makes this stage of parenting life such a pain in the ass....HOW MANY EMPTY WATER BOTTLES CAN ONE PERSON STORE IN THEIR BEDROOM??? And why???? Phew, I feel like getting that off my chest is a real breakthrough. 

And parenting teens during a pandemic?! We should get medals. All of us. And free booze for as many months as we've parented a teen during this crazy ass time. I mean, we love them, right? But we're used to having days filled with activities and school (the kind where they actually leave your house), and friend dates, etc. Now, don't get me wrong, I absolutely saw the beauty in the extra time with my teens. Most of the time we're so busy with life that we miss out on these precious last years at home, but Lord grant me the serenity....we have HAD togetherness. I think it's ok to talk about both, right? I mean, yes they're great but I also need space in my own brain for my own shit! 

I swear it's like trying to live the lives of each of them FOR them as they figure shit out (because sometimes they really prove their "teen-ness" and you kind of wonder how the hell they walk and chew gum at the same time) while simultaneously letting them go a little more each day. Um, that's maddening. 

It's an endless loop of seeing your babies turn into young adults and being inspired by their growth and also trying not to strangle them for clearly misunderstanding how to change a damn toilet paper roll!! And have you noticed that each time you bring that simple task up to your teen, through clenched teeth, that somehow it is ALWAYS them that has to put the new roll on while their siblings apparently eat bon bons and sunbathe all day?? How is that possible?! Cause I've never seen one of you "apparently intelligent" children, EVER put the stupid thing back on unless there is smoke coming out of my ears.

Yes we do chores. Yes my kids cook their own meals and clean the kitchen afterward. Yes they mow the lawn. But life gets in the way, and hormones, and emotions and feelings push their way into the forefront and those things get forgotten or ignored. So, we get back on track and feel good about ourselves for...about 2 hours, before someone else has some kind of crisis. I knew that running around after toddlers would be exhausting, although admittedly you can't know HOW exhausting until you have them. And I had of course heard about how "hard it is to have teens", but again...CLUELESS until I got here myself. I have great kids. They make good decisions for the most part and they have huge hearts, all of them. And someday, they're going to be incredible adults that change the world. But, for today, if they really want to bring that tear of pride to my eye...toilet paper is the answer!🤦‍♀️

Writing Therapy

 I had some more appointments for post covid syndrome today. I hate going to the doctor. I think most nurses do! We can be truly awful patients. :) Sorry, docs! I felt compelled to write today because something has been weighing on my mind, and writing is my best therapy. Now, some may say, "then get a journal and keep it to yourself." I know I could do that, and lots of times I do. I have a notebook and pen next to my bed for when my brain can't turn off at 3am. But I write this blog, and share with others because I've had some really special moments of human connection related to something I've written. When you experience something of significance in your life, whether positive or negative, you seek out others who understand. It's just human nature. 

When I wrote primarily about seizures and the life of a mother caring for a child with a mystery diagnosis, I was able to connect with many other moms in similar situations. We became a sounding board for one another. We shared our joys and triumphs over epilepsy, as well as our deepest fears related to our fragile babies. 

Years later, when I became a broken mother and my son was taken from me in the worst way possible, I belonged to another group. I still hate that this group exists, and I hate even more that its growth is infinite. However, I needed it. I needed the camaraderie. I needed to be able to say seemingly outrageous things and have them simply nod along, knowingly. There is power in that. There is peace....

So fast forward to today, and my desire to share my experiences with this damn virus that has stripped me of my "normalcy." This virus that has taken everything I know as a nurse and thrown it away in one fell swoop. Covid-19 has been a buzzword. It has caused rifts in relationships regarding it's very existence. It has literally stolen mothers, fathers, sisters, brothers, children, friends from their loved ones. But despite its fame, despite the differences in interpretation of this virus, for me, it's the thing that I continue to deal with nearly 6 months after initial infection. It's not something I can ignore or something I can "remain positive about and pull through." And that's maddening. I can't just wish it away. I WANT to. Believe me, if there were anything I could do to speed this recovery process up, I would do it! Yesterday! But there isn't. And I'm having to learn patience...patience at a snail's pace. I'm having to learn mindfulness, and breathing, and "practicing the pause" in a very real way. In some ways, I'm grateful for the experience, because there is literally nothing else I can think of that would have caused me to SLOW DOWN my life and take it in. I've been more present. I've been more mindful of the moments that I do get that feel more like "me". But, I'm also so very ready to be done with this lesson. 

I recently experienced someone questioning my illness and claiming that I am "attention-seeking and have likely hit the guiness book of world records with my number of covid days." Now, upon discovering that the coward making the comment was a fake name used on facebook in order to make unkind remarks on several pages, I was able to let it go more readily. But I won't lie, when I first read it, it hurt. I struggle constantly with guilt over not being able to work or to parent my children the way I'd like to. I'm not able to be the wife I want to be for my extremely supportive husband. So, reading that, and for a brief moment allowing even a fictional person to validate those deep fears was stomach twisting. I've since learned who the actual person is, and that too has helped to allay any fears of truth to the statements made. But it did make me think about how cruel and unkind people can be when they aren't standing in front of the person they intend to hurt. I think this translates well to pandemic life and this past year. I think we can do better in our efforts to meet someone where they are and to accept that their experiences, although perhaps not felt by you, have validity. It shouldn't matter that everyone you know "only had a cold." You shouldn't have to know me to care about the fact that I'm struggling with the after effects of this virus for so long. And it isn't even about me, or covid, actually. I guarantee you I've broken no records with my "supposed days of covid". I'd venture to guess I'm not even in the top 1,000 sufferers. People from all walks of life, from all over the world have been suffering far longer than I. But forget covid. This is the same for fibromyalgia, for multiple sclerosis, for Parkinson's, for depression, etc. There are people everywhere fighting silent battles all the time. Be kind. Be compassionate. And honestly if you can't do those two simple things, just be quiet. 

Today while in my first appointment with an occupational therapist, she was giving me tests to evaluate my cognitive abilities. I can't describe how different it feels to use my brain now as opposed to pre-covid. I have to look at things differently in order for them to compute in my head. That's a terrifying feeling. As she continued through her list of questions she asked, "do you have trouble stepping up onto a curb?" I immediately thought, "no". But I hesitated and described for her what stepping up onto a curb looks like for me now as opposed to pre-covid. I'm absolutely capable of stepping up onto it without falling, BUT I have to THINK about it before I do it. Do you make a conscious effort to think, "ok, now I'm going to have to raise my foot" in a way that interrupts other thought processes in your brain? I do now. And that thought rocked me. All of my previous guilt about "being lazy" or "not pushing through" seemed to melt away in that moment. I'm sick. I'm STILL sick. And that's ok. I have to do what I'm able to do when I'm able to do it, and not a minute sooner. 

And if I want to write about that, and share my experiences with others with the hope that even one person out there feels less alone, I'm allowed to do that. I have no hidden agenda. I have no "ideology" related to covid. I'm just a person who caught this awful virus and for some unknown reason, am one of the MANY, "lucky" ones who get to sort through the fallout of its negative effects on my body and mind. 

I don't know when I'll be able to do several tasks in one day and not have to nap. I don't know if I'll ever have another day where I don't have a fever. But I do know that a few days ago, I felt like myself again. I realized at that time, that I'd been lying to myself about feeling good before that. I'd accepted that "good" simply meant having only a few symptoms to deal with that day. But the truth was, this was the only day in the last 6 months that I have truly felt like myself. And THAT "me" is what I'm striving for. SHE is the person I'm working to get back to.  SHE is worth mentioning and sharing. I lost her once, when my sweet boy left my arms....I will not lose her again. 

We're not crazy....right??

 "How are you feeling?" I don't know. I don't even know how to begin answering that question. Are you asking because you're genuinely interested, or because that's just what we do as humans when we've heard someone doesn't feel well? Honestly, I understand either perspective. I do the same. But good god I have no idea how to even being to approach answering that question accurately. 

How am I feeling? Well, some days I feel so close to my normal self that I chastise myself internally for not "doing more" or ultimately "going back to work". Some days I just feel mildly crappy....like I'm on the verge of becoming ill, but not quite yet. And still other days I wake up and every time I move, I hurt. My lungs scream and burn with effort. My stomach rolls and rejects food. All food. Sometimes even water is questionable. My head feels like someone is squeezing it in a vice and just slowly twisting further and further into my brain. There are times that all of these symptoms last only an hour or two, and the rest of the day I'm relatively functional. If I do try to do too many things that look like living, it's like I pay for it in one way or another. 

I see specialists. I have labs and tests. Often. It is  so unbelievably disheartening to have test after test come back "negative" or "normal". That isn't helpful. Because I'm still sick. I still feel terrible. And I don't ever know when it will be so terrible that it's debilitating. I don't know how to plan life that way. Hell, I don't know how to plan an hour that way. I have a newfound respect for all chronically ill patients. This sucks. I'm sorry you've gone YEARS without relief. It's miserable and no one deserves to live like that. Every single time I go to the doctor, she has to prove to short term disability insurance that I can't work. The last time they asked, they called and followed up because we hadn't sent the lab and test results that prove that I'm still too sick to work. Well, you see, that's a problem because WE HAVE NO IDEA WHY I FEEL THE WAY I DO. When can I come back to work? No idea. Why can't I function for longer than a couple of hours at my normal capacity? I don't know. And the thing is, my employer has been incredibly patient. I can't imagine if I were someone who was feeling pressure to return when we literally just can't. It honestly wouldn't be safe for me to do my particular job in my current state. 

My physician is incredible. She continues to cling to hope that I'll actually recover someday. One of us should, so I'm grateful to have her in my corner. Thank god for my therapist. That poor woman needs the world's biggest raise. But this isn't just a bitch and moan post. I promise :). I'm actually writing because some days when I just can't take the disappointment anymore, I read accounts from thousands of other long haul covid patients and it makes me feel less crazy. It makes me feel less alone. I know it typically makes people feel better to think that they'll get covid and won't be me. That I'm some sort of outlier. But that just isn't true. I'm not a unicorn. There are millions of us, and we're all different races, genders, body shapes and sizes. I wish there were a rhyme or reason to why some of us become so ill and others don't. While we're on that subject, maybe refrain from talking to a long hauler and saying, "really?? I just had a sore throat for a few days." Oh yeah? Great. Truly. I'm happy for you. But....I don't know what the hell to do with that, so...let's just not. For those who need to know that they aren't crazy and that someone else feels the weight of this damn virus, here I am! Over here! Probably celebrating the fact that I can typically walk down a flight of stairs now...

You Are Not Alone

 Many may skip this post, and honestly I hope you do. We're all so tired of hearing about, reading about covid. And if you skip reading the rest of this post, I hope that it means you haven't experienced this beast firsthand. I've said it before, and I'll say it again, I don't wish the pain of this virus on anyone. However, many of us haven't been so lucky. I've realized that what has made me feel the least alone in all of this is my unfortunate connection to people I've never met, who also happen to understand the complexity of symptoms I've experienced. So this isn't going to be scientific research.  It isn't going to be published in any journals. And it probably isn't even going to make sense to those who are in healthcare, because COVID DOESN'T MAKE SENSE. But, what I'm hoping it can do is make one more person feel less alone. 

Let's talk symptoms....

So when you first become infected with Covid-19, you'll likely have no idea. For the first couple of days you'll feel nothing. But then you'll start to feel tired, like you just can't get enough rest. But who isn't tired, right?? Who isn't over life right now between the pandemic, family life that isn't normal, politics, etc, right? We all have reasons to be tired. Then occasionally you may notice a tickle in your throat. It doesn't hurt and it only happens maybe 3 times a day at random times. Who notices that? Someone must be burning leaves, harvesting crops, something to cause a little throat irritation. It's so minor and so sporadic, you'll all but ignore it. At that point you'll notice the beginnings of a headache. Unfortunately, this bastard will likely move in and set up camp for the duration. Now it isn't going to be like normal illnesses where you feel the symptom, take some pain medicine and get relief. It won't get worse, then better, and be done. This jerk isn't effectively treated with pain medications, and it does occasionally go away, but it comes back with a vengeance. There are some who have found minimal relief with prescription migraine medication and occasionally ice packs to the back of their head, but other than that, not so much. 

As I continue through other symptoms, I want to preface this by saying I'm not discussing them in this way in order to perpetuate negativity, or to discourage others. Believe me, I needed the moments of positivity, the goals I set for myself each day, and the belief that I'd get better. However, I also needed to not feel crazy. I needed my symptoms, experiences and feelings to be validated. So, it is that concept that compels me to continue. 

After the headache, or maybe along with it, will come the low grade fever and body aches. You'll have chills like your fever is extremely high, but it may only hit 99-100. This happened about day 5 or 6 for me.  You'll have body aches with this, that at times feel like if someone even touches your skin you'll cry...even your eyelashes hurt. Then you'll wake up the next day and feel like maybe you were making it up the night before because now you feel fine and surely that can't happen. Viruses don't work like that. Well, wait for 4pm...it will remind you that you very much did NOT make it up. 

Now let's discuss taste and smell. Not everyone gets this symptom, but if you do get it, you don't even need the test to confirm it. You're covid positive.  This one is so completely covid that it's the no brainer symptom. I say this because so many of the other ones can be mistaken for any other virus/illness. I noticed my complete loss of taste on day 10. It was odd, and honestly it was an emotional symptom for me because I already felt awful, and now I couldn't even taste my food. I do remember eating a lot of raw broccoli with no dip because why not??? Can't taste it anyway! May as well take advantage, right?? :) So for me, I could eventually taste very extreme sweet, salty, or spicy, but they didn't taste extreme to me. It was like everything was muted. It did come back eventually but it was slowly and sporadic. I have my taste and smell now for the most part, on day 57, but I also now have a very strange smell in my nose sometimes that I can't get away from, and it is accompanied by a fun burning sensation. Some have reported having these sensations for 7-8 months after infection. There are groups that specifically discuss ways to help with this and it involves retraining your brain and nose to smell again. 

The muscle aches and body aches are another off and on symptom. Many of us have experienced cramping in our legs, specifically in our calves. I tried to stay as hydrated as possible to counteract this, as I assumed it was mostly related to electrolyte imbalance. 

The breathing and shortness of breath aspect of covid is certainly the scariest for most people. For me it was infuriating. It felt like someone had wrapped saran wrap around my lungs and just kept wrapping tighter. It wasn't like I just couldn't take a deep breath, I couldn't "finish" any breath. I would breathe in and feel like I was being stopped. Covid-19 is different than most pneumonias in that you can be extremely short of breath and your oxygen saturation can look fine. That is the part that was infuriating for my nurse brain. It didn't make sense. And I knew I was short of breath. I was not making it up, but it made me feel like people thought I was crazy. Luckily for me, I have an incredible physician. She listened to ME, not numbers. She knows my baseline and I wasn't there, so she worked with me every day to help me get back there, even when we were both frustrated and had no answers. I will always be grateful for that. I know not everyone is that fortunate. 

The only thing that helped at all for the shortness of breath was lying in the prone position. I would spend 5-6 hours a day lying over a pillow with barely enough energy to lift my head, but it gave me brief moments of relief from the constant pressure. 

So basically, the symptoms can be all over. You will likely feel ok in the mornings and like someone hit you with a truck in the afternoon. You will often feel like you're "making it up." You aren't. And you are not crazy. And you do not have to do this alone. Find someone who understands. Ask questions. Believe you'll get better, but it's ok to also be over it. It's ok to say this sucks. And it's ok to be angry. Just uh...hey, use that anger and help us get people to mask and distance, ok? We can use all the help we can get. :) Love and peace to all of us as we navigate this beast.

Edit: So after I posted this I somehow forgot to mention the INSATIABLE thirst. I spent many nights filling up my 32 ounce yeti cup with water all night long. I had to drink constantly in order to get any sleep at all. I believe this had to do with the neurological effects of covid. One of the worst of these is not being able to sleep. The insomnia is horrible. And I'm not just talking waking up in the middle of the night. I'm talking like sitting up for 8 straight hours, unable to sleep. Then when that does get better, you can be woken up gasping for air and a racing heart. Those things are gone for me now, and I'm honestly grateful I forgot! I was pretty sure that would never get better. Now my neurological symptoms are forgetting words, losing my train of thought, and a brain fog...and yes Dad, that is different than normal. 🙄 Hang in there guys!!