Tuesday, December 27, 2016

Run Kenley Run Playlist #1: Inner Ninja

When I went on vacation the summer after Kenley died, I made a playlist for some of those days full of songs that spoke to my grief or my healing. I did the same thing in the days leading up to Piper's birth. So, it seems fitting that I create a blog series of songs that are getting me through to February 26th, 2017.
As my running distance increases each week, I have to find more songs to fill the time. This song has been in my iTunes for a while now, but I have only recently added it to my runs. Obviously, the title was what grabbed me first - and the beat is catchy and uptempo - but it's the words in the second verse and the chorus that really make this song meaningful.


Hey yo, I've been high and I've been real low
I've been beaten and broken but I healed though
So many ups and downs, roughed up and clowned
We all got problems, but we deal though
I'm tryin' to do better now, find my inner peace
Learn my art form, and find my inner Chi
When my backs on the wall, I don't freeze up
Nah, I find my inner strength and I re-up
Here we go, I know I've never been the smartest or wisest
But I realize what it takes
Never dwell in the dark cause the sun always rises
But gotta make it to the next day
It's a feeling that you get in your lungs when you run
Like you're runnin' outta air and your breath won't come
And you (uh) wheezin', gotta keep it movin'
Find that extra (uhn) and push your way through it

I've had bad habits but I dropped em, (I dropped em)
I've had opponents but I knocked them out
I climbed the highest mountains
I swam the coldest seas
There ain't a thing I've faced that's been too much for me

Grief is hard work.  Yeah, it looks like a few years makes it easier, but that's not true.   I have worked harder than anything in my life to get through the coldest sea imaginable.  I continue to work every day to keep myself afloat.   I am proud of that.   It isn't just because time has passed.  Time does nothing to heal.  WE heal OURSELVES.   We do whatever we can to climb that mountain of grief every day.   We learn the mountain.  We learn its crevices and cracks.  We learn the shortcuts - oh wait - there aren't any.   We push through the day with everything we have and some days are definitely more victorious than others.   But, we find that part of ourselves that WANTS to make it through and we hold on to it hard and tight.  That part of me that wants to be happy - that wants to face her day with joy - that wants to triumph over the cold, dark days of February (and many others) - she's my Inner Ninja.   

Chorus:
Nobody's gonna see me comin'
Nobody's gonna hear a sound
No matter how hard they're tryin'
Nobody's gonna bring me down

Nobody's gonna see me comin'
Nobody's gonna hear a sound
No matter how hard they're tryin'
No stoppin' me since I've found
My inner ninja 



Monday, August 8, 2016

Reasons to Run

I've started my training for the Princess Half Marathon. Slow and steady, I've been following the Galloway method and running and walking in one minute intervals. So far, I feel like I am being successful. I've only worked up to 3.5 miles, but I can keep a fairly good pace - a full two minutes ahead of the required max. You all know that I am running it in honor of Kenley for her 4th birthday. That is true. However, there are deeper reasons to why I am running this race. It's more than just remembering my daughter on her birthday. It's about forgiveness, reconciliation, and survival. I'm running this for her - but I am also doing it for me. Because I have to. Besides honoring Kenley, there are two main reasons why I am running this race.


Reason 1: Surviving February


It's no secret this past February was really hard for me. If I'm going to be honest, it was absolute hell. Every day was a flashback to horror. Every day felt impossibly heavy and painful. I really wasn't sure I was going to make it through without losing my mind. My fellow loss moms helped immensely. Other people in my life did their best to be supportive, and I am extremely grateful for all of the notes and messages and gifts. But, all of that really just kept my head above water. I was still drowning.


I can't do that again. I can't continue to do that every February for the rest of my life. I am not strong enough. Her birthday was simply a countdown of pain, and that's not fair to her. She doesn't deserve for her birthday to be filled with pain. She deserves to be celebrated. She deserves to be remembered with joy. And, as of this last February, I am completely incapable of doing that.


When I was at the Princess Half waiting for my sister to cross the finish line, I noticed there was a buzz in the air. Excitement. Anticipation. Triumph. Joy. People crossed the finish line and threw their hands up in the air. They smiled and laughed and hugged each other. As I watched them finish, I could tell which runners had just accomplished something meaningful to them. Sweaty and exhausted, they still had the energy to dance with joy. They had done something amazing and were celebrating it - and everyone knew it and celebrated with them. As I recall these moments and write them here, I am crying. I am literally crying right this minute because I desperately need a reason to celebrate in February. I need to feel that joy like I need to breathe. Grief is suffocating. It pushes all the air out of your lungs and squashes you flat. It makes you feel like you will never be able to breathe again. And I need to breathe. Most of the time, I can keep grief off my chest. I have my bad days here and there, but I have gotten to the point where I can shoulder this weight. Not in February. In February, I feel like I am dying. And, really, parts of me are. February is so horrible, I am willingly running 13.1 miles at one time to make it more bearable. I need to reclaim February for something beautiful and triumphant. So, I run. I run to have a reason to breathe again. I run to celebrate an accomplishment I NEVER would have accomplished otherwise. I run because I can't continue to face February without something amazing in my pocket.

Crossing that finish line will be something worth celebrating. Months of training down to that moment of triumph. I will cross it with a victorious heart - a heart full of love and joy, as it should be.


Reason 2: Reclaiming My Body



For most of my life, I seriously struggled with body image. I remember thinking I was fat as early as 7 years old. I remember thinking I was disgusting and fat around 12. I remember feeling unworthy of human affection due to my disgustingness around 16. I never developed an eating disorder. Honestly, it was simply because I didn't have the willpower to not eat and I hated throwing up. There were actually times when I was angry at myself for not being able to go a whole day without eating - and days when I tried to think about what would be the most comfortable way to trigger my gag reflex. It was a serious issue. An issue I never really talked about with anyone. I struggled with horrible body image well into my twenties. Around 24, I just got tired of hating myself. I came to a crossroads where I could either stop living - or find a way to bear being alive. I chose to live. I journaled. A lot. I filled pages and pages of journals with automatic self-conditioned words of hatred and slowly and consioulsly, turned them into words of self acceptance. It took me years. YEARS. It wasn't until I was around 30 when I finally got to the point where I liked what I saw in the mirror. From 7 - 30. For 23 years, I hated my body with a firey passion. Then, I had a happy 4 1/2 year span where I actually felt comfortable in my own skin. I was beginning to appreciate my body. I remember thinking "So, THIS is what it's like to not want to claw at your own thighs. Nice!"


And then, my body betrayed me in the most awful way it could. It killed my baby. And just like that - I was back to square one. I plummeted headfirst into a deep, dark abyss of body hatred. I couldn't look at myself anymore. Everything about me was wrong and hollow. I ate to fill the holes that were left behind, but obviously, those holes can never be filled - and definitely not with food. I gained weight. I got pregnant again and gained more weight. Even giving birth to a healthy baby girl couldn't restore my trust. My body was not my own. It was a foreign object. A meat suit I wore - a meat suit I hated. I didn't buy myself new clothes. I didn't wear make-up. I didn't care about looking good or feeling good. I lied and blamed being a new mom. I could feel myself barreling towards that crossroads again - and I wasn't sure if I would make the same choice this time. So, I decided I had to take action. I had to take my body back. I had to reclaim it for myself. First, I had to forgive it. I have been doing A LOT of work on that. I will always feel guilty for her death. I know I can't do much to help that. But, I can no longer blame myself. I need my body to be mine again - not this dull glob I hate so much. Reconciling with my body is one of the reasons I run. I run to feel the power in my legs and the air in my lungs. I run to push this cluster of cells farther than it's ever been, to know that it can accomplish great things. Every time my foot hits the pavement in my training, I feel a little freer from the shackles of self hatred. I run because crossing that finish line will be my victory over it. I will be me again. I NEED to be me again. So, I run.



We all do what we have to do to heal. Right now, what I have to do is to run 13.1 miles on February 26, 2017. I am determined to make this happen. For Kenley. For myself.


It is time to take it back. Her birthday. Feburary.  My body.  My joy.
I will do this.


Run, Kenley, Run.

Sunday, June 5, 2016

After Boston: Why Choice Matters

This post is a guest post written by Boston's Mom, Jaye.  She had something to say and nowhere to say it, so I offered her this space.   




Another day, another abortion restricting law passed.

Generally speaking, I get a little frustrated, a little ticked off. I will repost the article on social media, queued up alongside a hastily written, often profane-laced half-rant. I will note the “likes”—and, now, the sad or angry faces—and respond in kind to the WTFs and the SMDHs. And then I move on. Not because it doesn’t matter—it matters infinitely—but because I feel that, at the end of the day, I can do nothing.

“All I have is a voice, to undo the folded lie…”

I have often thought of telling my story in the context of abortion, but other than offhand conversational moments, it has never happened. I think too much and I feel too little, and my story is a little too personal, a little too raw—even after all this time (yes, “Always”)--to spread myself so thin. We know how it works—if you can’t handle others’ opinions, don’t put yourself out there to begin with. To open up something so devastating and so intimate for it to be judged, mocked, ridiculed by those “That hoard, and sleep, and feed, and know not me” seems almost unbearable. But then, I have braved the unbravable a time or two. And my own person notwithstanding—women’s lives are on the line. My voice might change very little, if anything, but I’ll be damned if my silence contributes to another woman’s pain.

It broke recentlthat Governor Nikki Haley signed a bill into law that denies a woman an abortion after twenty weeks gestation. CNN reported that “Abortions may be performed after 20 weeks only if the mother’s life is in jeopardy” (cnn.com/2016/05/25/politics/sc-abortion-bill/). Reuters reported that the bill does include a second exception “if severe fatal abnormalities will mean a fetus would definitely die at full-term birth” (mobile.reuters.com/article/idUSKCNOYG2XA).

I am not here to go over the usual abortion arguments. They are already out there, written upon extensively and far more astutely than I ever could. I am here to tell my story. 

To begin: I have never had an abortion. I have also never needed an abortion.

Nevertheless, access to safe, private abortion care is a very real concern for me. Not just because I am a woman and not just because I have daughters. But also because I had a son.

His name was Boston Wilde. 

Our first wedding anniversary was the day my husband, father of four daughters, found out that he had finally made a boy.

I had a normal pregnancy. Some placenta previa, which corrected itself. A nasty bout of pneumonia. Boston had a cleft lip, but we had fought that cleft battle before with my second daughter, so we were ready. In short, everything was fine. There was very little, if anything, drastically abnormal about my pregnancy.

I fantasized about my little boy. Would he be bold and headstrong like his big sisters and mother, or more demure like his father? What would he be like as a teenager? Who would he love?

We bought all the baseball things. His baby shower invitations sported a big Boston Red Sox “B”, announcing the celebration of he who was “joining our starting lineup.” Baseballs sat atop the shower cake. We served popcorn, peanuts, hotdogs and nachos, and, of course, Cracker Jacks. My oldest daughter, nearing four at the time, told everyone she met that she was finally getting  brother, something she had requested since she was eighteen-months-old.

A week after my baby shower, everything began to implode.

On August 7, I checked myself into the hospital. I will not get into the treatment I received that day—nor in the weeks to come—because that is another story. Nonetheless, my water had broken at 34 weeks. The next morning, just before eight a.m., I started having contractions. Hospital staff moved quickly to prepare me for an emergency caesarean, for which I had need to be put under since I could not have an epidural or any significant pain medication. I was scared. I was only 34 weeks, after all but 34 weeks was better than 24 weeks. Pushing down the extreme paranoia, it never occurred to me what I would wake up to.

I awoke about 45 minutes after surgery to excruciating pain and to the nurses marveling with my husband about the baby’s soft, fire-kissed hair. They had allowed my husband to carry our son from the operating room to the NICU. Though he didn’t know it then, my husband would be the only person to hold an alive Boston not attached to life-preserving devices.

Time passed and though I still hadn’t seen my boy, I was reassured he was alive—and big! Thirty-four weeks gestation and he weighed 4 lbs., 15 0zs. and measured 17 ¾”. 

The NICU doctor visited us, a grim look on his face. Boston was fine, looking, but something was wrong.

I still remember his face, that doctor’s, as if this had all transpired just this morning. I locked eyes with him and asked for a matter-of-fact, no bullshit answer. The doctor dropped his pretenses: “50/50 chance of survival. If that.”

In that moment, a mere ninety minutes into my son’s life, I knew my baby would die.


      
     

It took hours to stabilize him for the inevitable transport. We lived in nowhere East Texas, and Boston needed to be life-flighted to Dallas if he had any chance of survival. Twelve hours after his birth, I finally got to see and touch him, this beautiful little boy of mine, for whom we had waited so very long. The flight medic team was there and we were told, repeatedly, that Boston was so weak they were not sure he would survive being moved from one hospital bed to the next, let alone the flight. But he had to go, if there was any hope.

There was no hope, of course, and had I known then what I know now, I would have disconnected everything and held him on my chest until he died. But I didn’t know, and what was can never be.

Boston did make the flight to Dallas, but we were all in for a night of terror.

The NICU nurse from the Dallas hospitals called my hospital to inform them the baby was dying. My doctor consented, and, twenty-four hours after emergency surgery, I found myself sitting in the passenger seat of our beat-up minivan, blazing down I-20.

Doctor after doctor. Nurse after nurse. Call after call. “He’ll be dead before you get here. We’re losing him right now. Can your aunt hold him?”

Please, don’t let my baby died alone.

At one point, my aunt held her phone to Boston’s ear so he could hear my voice for the first time since he had been ripped from my womb. I told him it was a lot for me to ask of him, but could he please hand on just a little while longer.

He did, and we made it. I was broken physically, running on sheer desperation, adrenaline, and August-in-Texas heat. I couldn’t walk, so I was wheeled to the NICU where I finally held my baby for the first time.



     
   

Everything happened so quickly. We were moved into a larger, more private room. The doctor visited. The prognosis was bleak. There is no reason for him to be alive. We have him stable, but we have no idea what is the matter. We intend to keep trying, everything we can, but the reality is…

A photographer came to give us the gift of memory. The nurses worried over me, far more than my own doctors had. My aunt stooped down to put socks on my frigid blue feet. I held my boy.

After things had settled, my aunts, who had kept vigil all night, left for food and coffee. My husband went in search of Advil in attempt to curb the onslaught of pain raging through my body. It was just Boston—Archimedes Boston Wilde English—and his mother. I twiddled his touch-me-please peach fuzz hair in my fingers. I marveled at his size—his tiny fists, black and blue from IVs, his face—so like his big sister’s; his Daddy’s nose. His little body was swollen and yellow-hued, pumped full of the elixir meant to save him. As I whispered everything and nothing to him, he struggled to open his eyes, those mud-colored, jaundiced eyes, desperate to see me, but so fucking tired. 

“You don’t have to fight anymore. I am here now.”

His blood pressure dropped immediately. The nurse and doctor rushed in and I relayed to them what I had said. The doctor met my eyes quizzically but knowingly, nodding. “Let’s get Dad and the aunts back.”

I knew what needed to be done, but I was terrified. I had never watched death live, and everything in me wanted to pass that burden of Boston’s last breaths on to someone, anyone, else. But I held on. He had held on for me, I owed that much to him.

The staff hovered at the door quietly. As a nurse worked to remove all the wires save the heart monitor, I hurriedly asked about organ, tissue, any donation that could make some sense of losing my only son. There was nothing. He was just too broken. By what, we still didn’t know.

Death wasn’t as dramatic as I had anticipated. Four short bursts of air rattled from his lungs and he was gone, like blowing out a small flame, the only evidence of its having been? The soft trail of smoke it left behind to waft in the air.


                             
 

We consented to an autopsy. He was cremated and, two weeks later, we held a memorial service where everyone who came to say goodbye sang “Take Me Out to the Ballgame.” I had no idea how haunting the refrain “One, two, three strikes—You’re out!” could be, until my third strike left my family shattered. Then, my husband and I, along with our little girls, had to get on with the hardest part of death—living without him, Boston, our son and baby brother.

I know you are wondering by now why this is taking so long—it’s the internet, after. And what, exactly, does any of this have to do with abortion?

It took four months to get the autopsy results back. In those four months, we prepared for what we thought would be the worst possible outcome—that the results would be inconclusive and we would never know why our baby died. We never anticipated that what caused his death might be just as devastating as actually losing him.

It’s called Neonatal Hemochromatosis. You have never heard of it. I had never heard of it. Most medical professionals have never heard of it. In fact, most of the time, it can only be diagnosed via autopsy. I am a liberal arts type, so science is lost on me, but the general course of the disease is as follows: there’s nothing wrong with the fetus. It isn’t a fatal anomaly, N.H. In fact, the pregnancy progresses perfectly and the very limited research into N.H. indicates that the fetus is not even impacted until late in the second trimester, potentially even into the beginning of the third. In short, about the time, or after, all these abortion bans passing through state senates like wildfire. Basically, the mother’s immune system rejects the fetus as if the fetus were a bad organ transplant. The mother’s antibodies cross the placenta and attack the fetus’ liver with fatal deposits of iron. This, again, takes place in the latter half (or latter third) of pregnancy. As of today, there are no prenatal preventative measures or even diagnostic techniques.

Some N.H. babies have survived after liver transplant. Almost all die before birth or shortly thereafter. For all intents and purposes, it’s a fatal disease. And it is at least 85% recurrent. Some estimates put that percentage even higher.

Imagine, for a moment, my devastation. As a woman. A wife. A mother. A scholar. A freethinker. A redneck-born, Harry Potter loving, baseball obsessed, liberal girl with no name from nowhere, Little Hope, Texas. Not only have I lost my only son; now I know that my body killed him. 

I am the atheist who ate her baby.

At first, we were told there was no treatment, signaling that we could never have more children. Later, we found out there was a treatment: IVIG infusions that would need to occur weekly, beginning at 14 weeks gestation and culminating just before delivery. Replacing the mother’s antibodies with a donor’s has proven as, or more, successful than the rate of recurrence. Still, IVIG treatments for Neonatal Hemochromatosis are not yet FDA approved (meaning insurance can deny the treatment) and it is costly—some $10,000 per treatment according to one physician I questioned (multiply that by at least 14 weeks).

You might be beginning to see how my story plays into the abortion debate, but I will elaborate.

I could go have my tubes tied. I could get on birth control. My husband could get snipped. We could take all the precautions—and every one could fail and I could become pregnant.

On the other hand, say we did try to have another child (I suspect that I am infertile from the c-section, but that is also beside the point). Say we took every necessary step to ensure we had healthcare and that the insurance company has assured us that the treatment will be covered, so we press on, conceive, but only to meet that 14 week treatment commencement deadline just to be told the treatment will not be covered. Even if there are recourses we can take against the insurance company, that takes time, and while the bureaucrats fight over the red tape, this fetus inside me is actively being murdered by the body of its host. 

What if everything works out perfectly and I am approved the treatment, but I react negatively to it, or I simply cannot physically or emotionally handle the treatment? Am I, an adult American woman, going to be forced by my government to undergo invasive treatment to keep alive the fetus in my body?

Do you see, yet, the problem here? The nuances of the circumstance(s)? The Pandora’s box of devastation these abortion restrictions open for women like me?

Where do I fit in these Carolina restrictions? Where’s the slot for Neonatal Hemochromatosis? There isn’t one, you say? You have never heard of it, you say? It’s a minimal factor, you say? I say that almost all late-term abortions are for nuanced reasons the government and its lawmakers will not, and simply cannot, account for.

According to this new law, what happens to me? My life is not in danger—treatment or no. My fetus, on its own, is fine. Technically speaking, there are no abnormalities or anomalies within my fetus. At 22 weeks, it’s fine. Perhaps even at 32 weeks. But every single day that that fetus is in my body, without treatment, it dies. 

I don’t want to hear about the precautions not taken that got me in this position. We are already there. Some woman, somewhere is already living these nuances. Now what? Do I petition the government? Who decides my fate? Who foots the bill once the government steps in? Who tells me that I must undergo treatment, that I must put my body through it, that I must buy a product I do not want? Or who tells me I must become a walking tomb to satiate your religious zealotry and bloodlust? Where does this fanatical, absolute regime end and reason and poetry begin?

My doctor. My husband. My daughters. Myself alone, if I so choose. We should be making these decisions. It is not the government’s job. The government isn’t set up to account for individual circumstances, so it should not be in the business of passing sweeping legislations over undeniably critical and nuanced situations. This is why we have a Constitution. This is why we have a Bill of Rights.

Neonatal Hemochromatosis is the monster that fosters life while it takes it away. The very body that would carry and sustain my fetus to birth is that same vessel that would see the same baby drown. At some point in my pregnancy, my body would become life support. The fetus will die, before birth or shortly thereafter. These are the fact of N.H. without treatment. There is no praying or hoping that those facts might change, and that, on its own, as a reason to carry a pregnancy to term, is a religious implication borderlining on violating my freedom of—or FROM—religion.

The government was not there when Boston died. There was no lawmaker present when I signaled to the doctor that it was time, no Senator or Governor spouting off about the sanctity of life. I got to make that call. It is both my daily burden as well as the only gift I was ever able to give my son—letting him go gently into that good night. The government wasn’t there, then, when I pulled the plug on my already born son. How in the actual hell is it okay for it to intrude in the same scenario if my son were still in my womb?

In case you haven’t realized, all these hypothetical situations are deeply troubling to me. I am still grieving my son—my brave, beautiful, sweet, summer boy who comes flickering back to me every time I watch a baseball game, see a lightning bug or BB-8 from The Force Awakens; that amazing little man who should be celebrating his second birthday soon. Any pregnancy befalling me at this point would be so desperately wanted—and so achingly hard. Neonatal Hemochromatosis notwithstanding, there would be no easy outcome. Abortion would be devastating. Treatment would be devastating. No treatment would be devastating. Only one scenario would give us hope for a living infant, and even that treatment, successful as it has been, isn’t foolproof.

Please, please, Citizens, lawmakers, Governors, Americans. Please understand that this abortion issue has been as easy as “adoption or abortion.” It has never been about trite, bloody signs. Abortion is a deep river whose nuances are extreme and limitless and as vast as the multi-faceted face that is Woman. Please stop legislating grieving women into boxes that only contribute to their dying. You don’t know. You never did know. You aren’t equipped to know. You are too big to know.

I am not here to argue about early abortions or those later abortions that aren’t because of medial issues (those I support as well, as I unequivocally support a woman’s right to choose to do whatever she will with her own body). Others have argued those and, again, far better than I ever could. I am only here to speak for myself—one solitary woman—and to advocate for myself, my son, and other women and fetuses like me and mine who do not fall into the neat little spectrum state after state is legislating. N.H. is just one of any given number of diseases that you haven’t accounted for because you have never heard of them. Not being educated is the worst possible place from which to pass laws that have very severe, very immediate, very real, very devastating consequences for real women like me.

The party so concerned with big government’s intrusion into private lives is awful quick to tell me what to do with my womb.

You don’t want to hear my story. You don’t want to face the very real nature of infant mortality. I have heard that since the day Boston died. It is a study in disbelief, though, that, in my experience, those ardently pro-life are those who tend to turn themselves off to any discussion of Boston, telling me to pack up the Boston Box and move on. Whereas those who lean pro-choice are the first to remember him, say his name, ask about him, love me right where I am in my grief.

Because the latter know that there is more to life than living, and there is more to death that an end.

Let’s be real here: the reason I do not fit into these abortion restriction laws is because these laws are passed under false pretense. Lawmakers pandering to the radical pro-life right aren’t really concerned about fetuses, neither are those who claim to be “pro-life.” Those who claim these labels are nothing more than pro-birth. Would the government, after forcing me to carry a dying fetus to term, cover his medical costs, a transplant, his or her funeral? Where does it end? At birth. It ends at birth. Laws such as these are misogyny spray-painted with gold and wrapped with a bow. They look good on the outside, and they sound good on Sunday morning, but the real stories within reek. These laws aren’t about saving babies—they are about restricting women. You aren’t important enough, smart enough, educated enough, man enough to make your own decisions.

You cannot legislate religion and you cannot keep women as second class citizens forever. And that is all this really is.

To my sisters who have had abortion(s): I joy with those of you for whom it was the best choice. And I weep with those who had to make a bitter, heartbreaking decision but for whom abortion was necessary. Don’t let the world tell you that you can’t grieve. To both of you—your reasons, if any there are, are valid.

To the lawmakers: we will not be broken by you. Our grandmothers fought this battle before us, and we will continue the war. Because women are worth it and because, contrary to the dogma surrounding the debate, their fetuses deserve dignity as well.

 

       
    

 

Saturday, May 14, 2016

Stages

Anyone who has been through the loss of someone they love knows the traditional 5 stages of grief (denial, anger, bargaining, depression, and acceptance) don't actually happen in that order and often occur over and over, often at unexpected times.   I suppose from a clinical perspective, the 5 stages can help some understand grief a little better.   However, I came across a picture recently that I think explains the stages of grief pretty well.  
 
                         

Let's break these down, shall we?

The Beginning: 
If you've been reading my blog since March 4, 2013, you have seen my beginning.  The beginning is darkness.  It is pain and confusion.  It is heart breaking and soul shattering.   In the beginning, you can't breathe without the jagged pieces of your heart slicing you to bits.  You feel like an elephant is sitting on your chest while the world carries on without you.   You don't want to leave your house, let alone your bed, but you often force yourself to, and when you do, you are bombarded and overwhelmed by things that never bothered you before.  Every minute of every day is spent hurting.  There is no relief.  No break in the constant battering of your heart.   You are drowning.  You spend half of your time wishing to die and half of your time fighting to live, and some days you aren't sure what side will win.   But, you don't die.   Slowly, slowly, slowly, you muster up enough strength to start gathering up your broken pieces to put yourself back together.   You can't always hold them all, and the sharp shards often slice right though you, forcing you to take a break and heal some more before carrying on.   You have no idea what you're supposed to do with all of these pieces.  You just know you can't continue to have them scattered everywhere, covered in your blood.  This brings you to The Middle.  

The Middle:  
You've figured out how to hold all of the pieces of your shattered self.  You've polished them up and wrapped the really sharp edges in fabric so they don't cut you as much.  They slip and slide around, and you still get sliced up pretty often, but you're not the bloody mess you used to be.  For a while, you just carry them around with you because you're not really sure what to do with them.   You realize that many of those pieces are too smashed to be of any use to you now, and although it hurts to see them go, you start leaving pieces behind.   You take what's left and fashion them into something presentable.  You fill the holes with what you find along the way.   As you go, your old pieces, already weakened, start to fall away, leaving even more holes.  So, you continue to patch yourself with new pieces.   You keep doing this until you realize you are made up of entirely different material than what you started with.   You have discarded every fragment of your old self and have rebuilt who you are from the core.  You spend time trying to understand this new person and how she fits in to your old world.   Sometimes, parts of your old world are discarded too.  You just don't belong there anymore.   Every day, you learn more about who you are becoming where you need to be.   The ache in your bones becomes familiar and you begin to walk with less of a limp.  Even though you are covered in cracks and scars, you are stronger than you were before.   Not a moment passes where you don't hurt, but the hurt has become bearable for the most part.   You still have moments where it knocks the wind out of you and brings you to your knees, but those moments aren't constant.   You've learned how to breathe again.   And you come to realize that this is the way it's going to be for The Rest of Your Life.  

The Rest of Your Life:
This is where I am now.  I am not drowning in grief.   I get knocked out of my boat every now and then, but I have taught myself to swim and I know how to navigate this ocean.  I have pieced myself back together into this new person that I am just now learning how to love.  It's been three years.  It's no secret this third year has been really hard for me.  It is in this stage where you realize that it will always be hard.  It will always hurt and you will always have to fight.  But, you've learned super secret ninja skills and you know how.   Most of the time, you are okay.  You still hurt, but you know how to carry it.  Your day to day life isn't consumed with surviving and you're able to focus more on actually living.  Sure, you still get knocked down.  You always will.   But, you'll always get back up.  Because, this is the rest of your life... and you have a long way to go.


Thursday, April 28, 2016

Lost in a Legacy

Yesterday, I presented at the First Coast Neonatal Symposium.   This was my third time speaking in front of a group regarding stillbirth education.   Each time I speak, the presentation goes well.  People pay attention.  No one is on their phone.  I don't fumble for words.  I just talk about each slide and show the video at the end.   I have received a standing ovation every time.   There are always people who approach me afterwards to thank me for speaking and to tell me how important this message is.  I love feeling like I made a difference.   There's a tiny little bit of healing that takes place on these presentation days - a little piece of my heart's gaping wound that seals with some scar tissue. 

But, the few days leading up to the presentations and the mornings of are an emotional mess.  I don't really have difficulty speaking in front of large crowds - that's actually not a big deal for me. As a teacher, I have a lot of experience talking to people in big groups.   I do get nervous that I'm presenting in front of medical professionals.   I have no background in medicine and I feel very out of place trying to tell this community how to do their job.   I realize that my perspective and experience are what make my presentation so important, but I still struggle with feeling worthy of being listened to.  I am guessing that will come with time and more presentations.   As I do this more and get more positive feedback, I will probably start feeling more confident in the importance and validity of my message. 

What I don't think will ever get better, though, is how my heart feels as I prepare to present.  The hardest part of these presentations is the reason why I am doing them.   I organize my slides and I think of those days in the hospital.  I think of all the things I was able to do and all the things I missed out on.   I think of the living baby I didn't get to have and the silent one I didn't get to bring home.  I write out notes on what I am going to say, and I miss her so much it physically hurts.  Honest to goodness pain in my chest - an empty ache that radiates from the hollows of my heart.   The morning of the last presentation, I was given breakfast before the symposium began.   I sat there, alone at a big round table for ten, trying to will my hand to bring the fork to my mouth.   I couldn't do it.  The few bites I got in sat in my stomach like rocks.   I could only think about how broken I felt.  How absolutely empty.   I was about to speak about stillbirth because my daughter was stillborn.  The death of my first daughter brought me to that point in my life.  It took everything in me to keep the tears clouding my vision from running down my cheeks.  It took all of my strength to hold myself together and not crumble to pieces right there in Banquet Hall 2.   As much as I love to bring a voice to our children, it takes a lot out of me.

It is hard feeling proud of something you do in direct relation to the death of your child.  It's a really tough concept to come to terms with.  Every speech, every email, every Facebook message related to the Letter to My Doctor Snowball, is both a stab and a salve, a paradox of pain and passion.  People often tell me how strong I am to do this.  To write about this journey.  To speak about it so openly and publicly.   And, maybe I am.  But, it sure doesn't feel like it sometimes.  Putting myself out there like I do, I just feel cracked open.  An egg on the sidewalk trying to ooze myself back into my shattered shell while everyone stands around and watches.  

The reality of loss is draining.   I often feel like the only way I can do her justice is to give this blog and the loss community everything I have, but then I have nothing left for anyone else.  Today is Piper's birthday.   I have nothing planned because I spent the last week and a half organizing myself for my presentation yesterday.   We will have her birthday party Saturday, but today is just another day.   She's only two - she doesn't know.   But, I just couldn't get it together because the symposium took everything I had.   It's hard living in two worlds - shouting for my child who can't speak for herself while still giving my full love and attention to the daughter here beside me.  The middle ground is thin and shaky and so hard to balance, and I am really tired.   

I don't really have a point anymore to this post other than to just tell you that what I am doing is equal parts rewarding and painful.  I guess I just wanted you to know.

       
           





Thursday, April 21, 2016

We are ALL Mothers

Mother's Day is right around the corner.   Three years ago was my first Mother's Day.   Two years ago was the first Mother's Day most people actually recognized me as a mother.  Around this time every year, articles and blog posts circle the internet regarding honoring "all types" of mothers.   Posts about single mothers, kids with two mothers, mothers who are veterans, mothers with disabilities, adoptive mothers, foster mothers...basically, all types of mothers are talked about and celebrated.   Except one.   The Heartbroken Mother.  Of course, people like Carly MarieAngela Miller, and Lindsey Henke write beautiful articles celebrating mothers who have lost their children.  They are moving and inspiring and we share them with the members of our community in solidarity.  Right now, the "I See You" movement is swirling through our ranks, lifting us up and helping us feel a little less broken.  We even have an International Bereaved Mother's Day the first Sunday in May, which began in 2010.  All of us work so hard to heal, to feel like a whole person.   We strengthen the bonds in our community with ways to recognize the mother in all of us, regardless of whether our children are in our arms or in our heart.   To a Heartbroken Mother, being recognized as a mother of all of her children is so important.   The Loss Community does a stellar job in doing that.   The Mainstream Community?   Not so much. 

All of the things I just mentioned only exist in the Loss Community.   I didn't know about any of these things before I lost Kenley.   When I became a Heartbroken Mother, an entire world of sorrow and support opened up to me.   And while I am beyond grateful for the undeniable validation and voice this community gives me, I still wish this could translate into the world beyond it. 

I have the luxury of a Rainbow.   Because she was born alive, I get wished Happy Mother's Day.   I am included in the celebration of motherhood, even though it will always be bittersweet.  But, what about those mothers who are still waiting for their Rainbow?   Or those who never get one?   Are they not Mothers?  I know too many women who are completely ignored on the second Sunday in May year after year.   Too many women who never get wished Happy Mother's Day because they have no living children.   They want someone to remember their babies....and usually it's another Heartbroken Mother.   Every once in a while, it's a kindhearted friend or family member, but more often than not their only recognition is within our own community, and while that doesn't make it less meaningful, it still stings.   

International Bereaved Mother's Day is great.   It's a wonderful way to include the mothers who don't have all of their children with them.  It's a way for them to have a day of healing and recognition.  But, it's not the same.   We don't always want to be "Bereaved".   We don't always want to have to turn to the Loss Community to feel like our children matter - that we matter as a mother.   It shouldn't be too much to ask to be included in a standard holiday for mothers when we ARE mothers.   

This Mother's Day, take a minute to think about the mothers who may be living that day in silence - who are spending that day hyper-focused on what should be happening but isn't.   Take a minute to recognize that mother for who she is.   Remember her children with her.  Wish her a Happy Mother's Day.   Here....I'll even give you the words:

"Happy Mother's Day to a wonderful mother.  I am thinking of you and your children today."

Second to the fear that our child will be forgotten is the fear that our motherhood will be fragmented to only include our living children, or will be ignored altogether. 

Regardless of Rainbows, every mother deserves to be recognized.  Every mother deserves to be included in Mother's Day.   It's hard work living with pieces of your heart scattered across the stars. 









Thursday, April 14, 2016

Rainbow Road

If your formative years were in the later part of the last millennium, you are familiar with Mario Kart, a video game that pits players against each other on a split screen as they race their character's car over a racetrack.  While there are several tracks, often racing over lava or under water, the final course of most games is Rainbow Road.  Typically, Rainbow Roads appear beneath a starry sky and contain few, if any, railings.   Because of this, and other obstacles unique to the course, Rainbow Road is often considered one of the most difficult tracks.   It's also usually one of the longest.   Rainbow Road is a hard course to master.

Someone watching a player nagivate Rainbow Road may think, "Oh...that doesn't look that hard. I could do that."  In the same way, many people seem to think that Rainbows make life after loss all better - that they are the magical fix to a broken heart.   While Piper has indeed been very healing to me, her existence doesn't make the difficulty of living without Kenley just go away.   Like the colored turtle shells that send Mario's race car careening off course, there are a multitude of unexpected issues that arise when parenting a Rainbow.   Some that even send us over the edge.  

Turtle Shell: When you're holding your infant on a park bench, how to you answer the kind little old lady who asks you "Is this your first?".   Do you lie?   Do you say yes and sit there while she goes on and on about the joys of parenthood you should be experiencing for the second time?  Do you carry on a conversation while your heart is screaming out in betrayal?  Do you vaguely tell the truth, give a short "No", and hope the conversation doesn't go from there?  Or, do you tell this well-meaning stranger about your first baby - the one who died?   Do you sit there and watch her warm eyes shrink into her skull with uncomfortableness as she wishes she'd never asked?  No matter what plan you have, it will never go the way you want in that moment, and more often than not, it's a sure-fire day ruiner. 

Turtle Shell: You buy your Rainbow "Little Sister" t-shirts because she is one - and you feel that it's a nice tribute to your firstborn.   But, you only dress her in them when you're not going out - or when you're headed to a remembrance event because you're scared of the conversations that might occur otherwise.   "Where's your big sister?"  And you feel terrible because you can't bring yourself to be comfortable with being so "in the world" about the fact you have more children.   In the morning when you're dressing your Rainbow, you see that Little Sister t-shirt sitting in the drawer.  You want to put it on her, but you don't because you know you have errands to run that day and you're just not in the mood for what might happen.

Turtle Shell: You see siblings at the mall.  A big sister holding her little sister's hand.   Their age difference is similar to that of your two and you instantly wonder what that would be like.   What a wonderful relationship they would have had.   Of course, they would have fought - all sisters do - but they would have loved and cared for each other like no one else.   They would have made mud-pies in the backyard and constructed blanket forts in the living room.  They would have been each other's partner in crime.   You can hear their giggles now, coming from the back of the house, as they pull each other in to their hilarious private jokes.   Every time you see siblings, you think of this.   You think about all the things your Rainbow is missing out on - and all of the things your firstborn never got to have.  The sadness over this missed relationship eats at you like acid, creating more holes in your already falling apart heart.

Turtle Shell:  You watch your Rainbow grow.   Every day, you are amazed by her more and more.   From her first breath to her first step to her first day at school, you celebrate each milestone full of so much love.   You are constantly thrown off guard by how much you love her - by how your heart skips a beat when you see her smile.   You hold her in your arms, nuzzle her hair, wrap her little hand around your fingers, and you can't believe how lucky you are to have such a wonderful child.   And then you remember why you do - and it rips you in half.   This beautiful and fantastic little human would never have existed had her big sister lived.   Every song she sings, every word she says, every picture she draws is because her sister died.  

Turtle Shell with Spikes:  The dichotomy is torture - and it's unavoidable.   You can't simply forget this reality.   This life exists because another does not.   It is hands-down the hardest part about parenting a rainbow.   Every. Single. Moment. is a reminder of what will never get to be.  And, how do you find peace in being grateful for your rainbow when you know the price you had to pay?  Even though you know in your heart of hearts you love your children equally, the only way to verbalize this struggle is to paint one life more visible than the other, which is so unfair.   You know your Rainbow deserves more than to live in her sister's shadow.  You are determined to keep her free of that - yet the shadow exists because only one of your children is still alive.  And your firstborn deserves to be remembered and honored, but a memory is hard to hold when it's coated in grief.  Some days, this duality seems impossible to maintain.  

Rainbow Road is a hard course to navigate.  On top of "regular" parenting challenges, you also have the challenge of finding that balance between two worlds.   You have grief complicated with joy.  Sadness mixed in with excitement.  Pain swirled with hope.    You are a walking contradiction, and no one would ever really know unless you told them.   You do the best you can every day.  You change diapers.  You potty train.  You cook vegetables.  You wipe vegetables off the floor.  You strap her into her car seat.  You lay her down for her nap.   Then, you look at her sister's urn.  You touch the necklace with her initial.  You lean into the ache she left behind and you wonder how you've managed to get through another day without both of your children. 

Parenting is never easy.   Clearly, parents who have never lost a child don't have it easy by any means, but there is an added level of difficulty that comes with parenting after loss.  It's a track with the railings removed - where a slight spin out of control can send us straight over the edge and back into the darkness.  A glance over at two girls laughing can be enough to shoot me into a cloud of grief for the rest of the day.   A flickering thought of whether or not Kenley would also be able to sing her ABC's before she was two like her little sister will spin me around in circles of sorrow for hours.   

There are some days when I think to myself, "I just can't do this."   I can't be a parent to both of them.   It hurts.  It hurts.  It hurts.   I am tired of hitting those shells every day.  I am tired of feeling I am leaving out Kenley while parenting Piper.  I write blog posts and raise awareness and admin Facebook groups just so I can feel like her life means something, and then, I get caught up in the world of loss instead.   I can't be in two places at once, and yet I am - I have to be.   And I feel so very unbalanced all the time.

There are more cars than people realize on Rainbow Road.   Not everyone will tell you the child you see is a Rainbow.   Not all loss is as visible and vocal as mine.   We all zoom around this track the best we can.  Sometimes we see those turtle shells in time to avoid them - and sometimes we don't.  Sometimes we can keep ourselves from plummeting over the edge, and sometimes we can't.  There's really no solution.  Having a Rainbow is hard.  I don't say this for sympathy, but for understanding.   I want you to know what a difficult daily struggle it really is - how it's not as cut and dry as some may want it to be.  

Life completely and irrevocably changes after loss.  Nothing is the same.  Especially parenting. 

Safe Travels to all my fellow drivers on Rainbow Road.   May your day today be free of shells...or at least the next few minutes. 






 

Friday, April 8, 2016

Don't Judge the Path

There is a phenomenon present in social media that spans almost every public page.   It is the need to assert one's own opinion.  (I realize I am writing this on my very own blog that expresses my very own opinion, but bear with me for a moment.)  Some posts call for an opinion.  An example being People Magazine asking their followers who they think should be the Sexiest Man of the Year.   All the people commenting would have experience thinking someone is sexy and base their answer on that experience.  That's an appropriate use of an opinion.   Sadly, opinions are not always used that way.  Most often, they are not.   The more common use is that of "hey, I know nothing about this topic, but I am going to assert my own thoughts about it because, you know, it's my opinion, man!"

This is everywhere.   From men commenting on women's health issues to people without kids telling others how to parent.   It's obnoxious.   Jef Rouner wrote a really good article about this called "No, it's not just your opinion.  You're just wrong."   Yeah, it's your opinion.   Yeah, you are certainly entitled to it.  But, you have to realize that your opinion - and your reasoning behind it - can be wrong.   "It's just what I think" isn't a good defense when you are talking about something you haven't experienced.   

To be clear, I am not talking about what type of pizza topping is the best or what television show deserves the Emmy.   I'm talking about actual issues and experiences of other people.   If you haven't been there, you cannot tell those who are how to handle it.  Period.

I see this all the time in relation to the Loss Community.   I am elbow deep in that community, both by fate and by choice, and I know the women who live there with me.   I know their lives because I live it too.   We are all a part of an unwilling sisterhood - a sisterhood that understands the deepest, darkest depths of each other's hearts.   We remember what it was like before loss - and we live each day in the after.  Not a week goes by where someone I know isn't told how they should be feeling by someone who has never lost a child.   Not a week goes by where I don't see someone with 100% living children make an assumption about what it is like to lose a child.   In the past few days, this has happened excessively - which is what prompted this post.  

You know, I've never dismantled a nuclear bomb, but....I think I'd probably cut the red wire first.

That sounds like a pretty stupid statement, now doesn't it?   That's because it is.   That's because there is no validity when there is no experience.  

There is nothing more frustrating in the loss community than an "outsider" telling us how to feel or how they think a situation should be handled.   This happens a great deal on articles regarding memorial photos.   People call them "creepy" or "morbid".   People say things like, "If I lost a child, I'd never do that." Or, "This mother just needs to let go and move on."   Almost always, their comment is prefaced with "I've never lost a child, but..."    A recently written article, which I won't reference here because I don't want to give it traffic, included a statement from the author (who has only had healthy, full term pregnancies) that said she thought taking pictures and holding onto keepsakes from a pregnancy that ended in miscarriage would be a "painful reminder" and she wouldn't do it.  The community raged against her and she didn't understand why.   Here is why.

You don't know how this feels.  You don't know how it feels to break into a million pieces of pain and attempt to put yourself back together.  You don't know what it takes to heal from a loss.   It takes more than anyone could ever explain - and the only way you would ever know what this is like is if you had experienced it.   To make a claim about how you would act after losing a baby when all of your babies are alive and well is an insult to all of the mothers who are living every day with one or more of their children in an urn - or simply in their memory.   It's like sitting on top of a pristine white horse and telling the people trudging through the mud what you would do if you slid off.   You're on the freaking horse.  You're riding around all comfy and clean.   You don't know how this mud feels.   You don't know how it coats your skin and weighs you down.  You don't know how it dries inside your ears and between your fingers - how it seals your eyelashes together and tastes like death.   You don't know what it is like to wake up every day without your child and get through each moment with that hole in your heart.   You don't know. 

I am all for discussing babyloss.  I am an advocate for awareness and education - clearly.   I love it when people outside of the community want to open up a dialogue and discuss miscarriage or stillbirth.  I appreciate the desire to educate and inform.    But - educate, don't speculate.   Don't decide for Loss Moms how they should feel.   Don't presume how you think you'd feel or what you think you'd do or want in that situation - because you don't.   (When my nurse asked to take photos of Kenley, I gave her a horrified No.   What in the world?  Why would I want those?   Today, they are the most treasured keepsake I have because now I know just how important they are.)  When a Loss Mom comments about how maybe - just maybe - your opinion is wrong - believe her.   She has been where you have not.   She has been where you truly never want to go.    She has taken the pictures of her dead child.   She has baked a cake on their first, second, or twentieth birthday.  She has created an alcove for their ashes.  She has made a shadow box of the outfit they should have come home in.   She has done all the things you want to say you'd never do.  And yet,  the one thing many people say they'd most definitely do - she has not at all - because she is still alive.  She has fought to live in the face of grief - and she has done that by doing all those things she is constantly judged for.   

So, when it comes to judgement calls regarding how to handle loss, if you've never had to do it, take a seat.   Take a seat and listen to the voices of those who have.   Don't try to shut us down and tell us who you think we are and how you think we should feel.  This is not your life.   And if you simply can't refrain from offering your opinion about how we choose to grieve, wipe your brow with relief that you don't have to make these choices, get back on your damn horse, and walk away.   

      


Monday, March 14, 2016

Run, Kenley, Run



Saturday was my fourth time attending the Brianna Marie 5K. For those who don't know, Brianna Marie is the daughter of my friend Aran, who I had not met until the first year the 5K was held. Brianna died as a result of Fetal Hydrops, which is an abnormal accumulation of fluid in areas of the baby's body while in utero. Aran started the Brianna Marie Foundation after her daughter died to help raise money for awareness and research. She works closely with local doctors to help save the lives of babies affected by this condition. Brianna and I share the same birthday, and the first year of the race was also my first birthday without Kenley. Attending the 5K that first year gave me a sense of purpose for that day, and it has been a tradition ever since.


My first year, I attended but didn't participate because I was still healing from my C-section. The second year, I was pregnant with Piper and had just gotten over being sick, so I didn't walk because I didn't want to chance it. Last year and this year, I walked with Piper in her stroller. What I love about this 5K, besides its wonderful cause, is that friends of mine just automatically sign up to run it in honor of Kenley. I didn't really do a great deal of Facebook promotion regarding it this year, but still, my "regulars" were there - for the fourth year in a row. It really warmed my heart to know that I have people in my life who support me and remember my daughter. I never really had any doubt about this - but it's nice to actually see in action.


It was a good day for a race. The sun was shining and the temperature was warm. I did my best to keep a pretty good pace and finished with an 18 minute mile, which isn't too bad for walking with a toddler in a jogging stroller.

After everyone had finished the 5K, we released butterflies in honor of all the babies who are no longer with us.








My walking partner all ready to go.



Colleen, Susie, and Me after the race






My mother, the marathon runner, finished the race, and backtracked to take Piper's stroller from me so I could cross the finish line without it. She's pretty amazing.





My Little Ham





Releasing butterflies in honor of Kenley and all the other babies






Medal winners!



Confession time: The Brianna Marie 5K was the first step in a year long journey I am about to take. After the race, I headed over to Running Zone and forked over a kidney for a new pair of Asics. Once I got home, I pulled my brand new FitBit out of the package to charge and set up. Today, I strapped Piper back into her jogging stroller and took her for a two mile walk. I'm building up stamina. I'm researching the Galloway Method and am working on a good running playlist. In the beginning of July, I will scramble to get myself registered for my end goal. And on February 26, 2017, I will complete the Disney Princess Half Marathon for Kenley's fourth birthday, most likely in a Ninja-worthy tutu.




I have no delusions. I know this is going to be hard. I'm almost 38 years old. I'm an out of shape asthmatic. I have a toddler and a husband who works nights, and finding the time to torture myself with long distance running is only one of the many challenges I am going to face this year to meet my goal, but Kenley's Legacy is more than being a voice in the loss community. Kenley's Legacy is also about making me a better person - about making me stronger than I ever thought I could be. Three years ago, when she died, if you had told me this is where I would be, I would have never believed you. Three Years Ago Me would have been convinced that she would have been in a mental institution by now - or maybe even in a vase right next to Kenley. But I'm not. I'm here. I'm surviving. I'm creating a life where she isn't.




I am going to do this. For her. For me. For the sake of accomplishing something I never imagined I could.

I'll see you at the finish line.

 Run, Kenley, Run.