Grief 101: The Question

Not long ago I had two very good friends ask how people could best walk with us in our new, unwanted reality. One answer came to me several days later during a conversation I had with Ray.

The great grief of losing children seems to be pretty unpredictable to me. I'm up, I'm down, I'm (in the words of Matthew McConaughey) "like a frickin' one woman circus" (name that movie).

People who know me, probably know I have not been gifted in the art of masking emotions. I am who I am and feel how I feel and I rarely, if ever, have the ability to hide that. I'd be a horrible Brit and find myself deeply envious of those who have this masking talent. Possessing this gift would make being a pastor's wife so much easier y'all. What I would give to be able to plaster a smile on my face, say "I'm good," and have people believe it! Seriously - jealous of all the masker-masters out there.

One thing I find hope in, concerning grief, is that there isn't a rubric on how to grieve. Yes, of course there are the dangerous, unhealthy and/or unhelpful ways to grieve, but for the most part - it is how it is and goes how it goes. No wrong way or wrong time - it just is.

I'm learning, everyday, how to grieve. What's good for me may not be good for my husband or sister or friend. It's different for everyone - everyday.

As I learn how to walk this road, many of you learning how to walk it with me (us).

So - how can we best walk this road together? I've had a few thoughts on the matter.

Our own Grief 101 class.

We can learn together.

The Question

It's one of the most difficult moments to navigate - for many reasons.

Who's asking the question? What kind of relationship do I have with him/her? Do I have time or energy to be honest? And then the worst internal dialogue of all "Oh no, what is the answer to the question?"

You know the question - the simple question that Ray and I have discovered is nearly impossible to answer.

"How are you doing?"

The four most difficult words to, at this point, try and form an answer to.

First of all - which Sarah am I in this encounter?

Numb Sarah is probably fine. Numb to world and going through the motions - so probably not an awkward or uncomfortable encounter there. Whoo - safe.

Sassy Sarah (also known as angry, anxious, or depressed Sarah) just wants to fight. Fight with the world, fight with an inanimate object. Heck - sassy Sarah wants to join a MMA gym and beat the junk out of something or someone. Forget flighting - sassy Sarah just wants to fight. This is the most frightening mood to be in when receiving the question. Poor, unsuspecting person who just wants to love on me but everything inside me is screaming "my girls are GONE - how do you think I'm doing?!!" These moments are the most difficult for me as I awkwardly stumble around for a kind and appropriate response.

Genuinely OK Sarah - Will probably smile, shrug, and say "I'm OK today."

"So, Sarah, what am I supposed to follow 'Hello' with?"

Great question, my friends, great question.

It depends on the depth of our relationship and how brave you are :)

Sticking with "it's good to see you," and a hug is wonderful. We never tire of hearing you're still praying for us. We need it, friends. Or just celebrate that we chose to get out of bed, get dressed, and keep living that particular day. It sounds comical, and we'd probably respond with a laugh, but let's be honest - some days making those three choices is a huge victory.

Want to talk about Maggie and Ellen? FANTASTIC! So do we! They are our children. We are proud of them and love them dearly.

We created identical twin girls.

That. is. incredible.

Maggie and Ellen were beautiful and precious and we love to talk about them. Don't fear that speaking their precious names will suddenly remind us they are gone and make us sad. Their absence isn't something we ever forget and the sadness comes when people are frightened of saying their names, not when they do.

Grief. It's unpredictable. We will continue learning how to walk this road together. Grace for me. Grace for you. All the while deeply thankful that even in grief, our God is with us. Emmanuel.

Grief: I'd Rather Not

Grief.

It's hard and weird and annoying.

It's like its own version of the movie Groundhog Day. 

You wake up every morning and for one glorious second you don't remember the painful reality that is your life.

mmmmm. What's today? What's on the schedule? What should we eat for breakfast?

And then . . . BAAM . . . it hits like a taser to the chest. 

oh yeah . . . my kids are dead.

Who cares about a freaking schedule? What does it matter what day it is? Every day brings the same unbearable reality; I should be pregnant with identical twin girls and I'm not.

I'm not pregnant. They're not here.


Grief.

It's the unwanted gift you get to unwrap every day. The gift you'd give anything to not receive upon waking every morning and yet it's the one you have to open lest you ignore it and suffer the severe consequences months down the road (think an unopened howler from Harry Potter).

Well hello, Grief.

Which version of you will I be in for today?

Numb Sarah? Angry Sarah? Anxious Sarah? Depressed Sarah? So-fatigued-id-rather-stay-in-bed Sarah? Or genuinely OK-for-the-moment Sarah (who probably feels a bit guilty for feeling OK. Is it OK to be OK? Who knows.).  

For the most part Ray and I do our best to welcome each day understanding that some level of grief will walk with us.

The trick is to welcome grief while walking with grace. Grace for ourselves, grace for each other, grace for those trying to figure out how to walk with us or at least not be too awkward in their avoidance of us.

Grief is rough. It's unpredictable, always present, and usually (at least this early on) painful.

Grief is a gift. It reminds us Maggie and Ellen were here. They were here and they were real. Real girls, apart of a real family, who really really loved them.


I had someone, who loves me very much, not too long ago ask - beg me really to consider a medical procedure that would prevent me from ever getting pregnant again (don't worry - this wasn't my husband).

"I'd rather not see you go through this pain ever again."

I get it. I really do.

7 children - only one living; the grief just seems too much.

But great grief means there is great love.

As  I write this, a tiny, nearly three-year-old had rests on my chest.  This hand is attached to the life that has taught me about love. This love, this life-altering, never-ending, I will move heaven and earth for you love, comes with great risk.

The risk is grief.

This grief - the one I wake up to every day and reluctantly walk with.

Even though I'd rather not walk with this great grief, one look to my left and the beautiful sleeping face next to me says it all . . . She's worth the risk.

Maggie and Ellen : A Birth Story - Part 3

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I once heard a midwife speak of labor as a woman’s greatest battle. Each woman approaches and responds to labor differently. We bring different hopes, fears, and experiences to this life-changing event. We stand at the edge of this painfully beautiful moment and decide who we will be as we birth little lives into the world.

Here it was, my moment to choose.

Who would I be?

How would I respond?

“What?!” Ray says.

“There’s no way. How can that even be possible?”

An understandable question my husband raised as I explained several days postpartum that I spent the first 20+ minutes faking my pushing efforts.

“What do you mean, how is that possible?” I smile.

“I’m a doula. I know what a pushing momma looks like. You hold your breath, tuck your chin, and pretend to push.”

I can’t help but laugh. He’s totally scandalized and a bit impressed.

A little more than 20 minutes - that’s how long it took for me to choose to surrender my girls.

I hadn’t eaten in over 24 hours. I was sick and exhausted and knew what working with rather than against my body meant.  

My doulas gently reminded me that pushing was my choice, though the girls would be born no matter what. Ray showered me with encouragement. Taryn turned the Beauty Will Rise album back on. Brandy placed Valor on my neck and chest (thank you, Young Living Oils).

And that was it; that mix of moments.

Something clicked and I starting pushing.

Ellen was born breech, thank you love, at 7:31pm.

Dr. Eppard held her up, the neonatal Dr. looked at me, and I sat there in shock.

 “That’s all? That’s all of her? She’s the big twin?”

No. There was no way she could possibly survive. She was long, but tiny – not even the width of the palm of my hand. 

Ellen went straight from Dr. Eppard’s hands to my chest. She snuggled in and sucked her thumb.

You would think the second babe wouldn’t hurt as much.

Totally. Wrong.

The pain. Wow. Just wow.

Maggie was born like Ellen, breech, but in her bag of waters (which is a pretty incredible sight) at 7:44pm.

Just like her sister, she was transferred to my arms.

They lay face-to-face, holding hands, surrounded by peace, and held with love.

They were beautiful and identical and had what’s lovingly referred to in my family as “the Chisolm chin,” bless their hearts.

The room stayed silent, peaceful, and reverent. Our incredible nurse Samantha, who had now stayed passed her shift, gently lifted the blanket covering the girls to check for heart tones.

How lucky I feel to be the one holding them for the both the first and last beats of their hearts.

Have I mentioned how amazing my medical team was? Yes? Good.

The Dr. waited patiently for the placenta to come. Even though it took longer than he felt comfortable with, my bleeding was not excessive and he wanted to give my body the chance to do things on its own.

Nearly half an hour after Maggie’s birth the placenta finally detached and was delivered. As a birth professional I am fascinated with placentas. They are incredibly powerful and beautiful organs. Usually a healthy placenta is a nice dark purple color. Mine was bright red. Dr. Eppard took the time to exam it with us, showing us where the blood vessels that created the TTTS connected. How crazy - all this life and death and pain thanks to a few blood vessels.

Life is beautifully fragile.

My body continued to be strong and responded exactly the way it needed to. As soon as the infected placenta was out my fever began to break, my blood pressure and heart rate stabilized.

And seemingly all at once, everything became quite, everything became still.  

I was alive but empty.

Grateful but heartbroken.

The fight was over.

Our girls were gone.

We have been deeply moved by and grateful for the amount of support and love we have received from our family, friends, and community. You all have been Christ to us. Your cards, calls, donations, prayers, meals, etc. have given us the strength to wake up every day and keep breathing. 

We know this pain will be something we live with on some level or another for the rest of lives. We will carry this ache forever – always longing for the day when we will be united once again, in the presence of The Lord.

We are grieving and broken, yet we find peace and healing in knowing that even in our darkest moments, our God is with us – Emmanuel. 

Maggie and Ellen : A Birth Story - Part 2

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(The following may not be totally accurate – but it’s what I remember. Another reason it’s good to hire a doula – or two – they record all the details)

By 5:15am we were in labor and delivery triage. I was running a 102-degree fever, my blood pressure was 84/47, and my heart rate was in the 120s. That’s not good.

I can remember being freezing cold and so frustrated that the nurse wouldn’t give me a warm blanket or any blanket for that matter (which is exactly what she was supposed to do. Can’t cover up a person running fever). They took blood, started the first of what would be multiple IV ports, and tried to find the girl’s heartbeats. Every time they thought they found it – it would turn out to be mine. It was finally decided that the sonogram machine would have to be pulled out to detect the girl’s vitals and check their positions.

At some point in all this triage business my doulas arrived. I can’t give them enough praise. Let me tell you – this is not what they sign up for. Dying babies, sick mothers – this is the exact opposite of what they’re in this line of work to do. And yet they served me, my husband, my family, and my daughters with such grace, courage, and professional wisdom. Always hire a doula.

Our nurse found the girls, both head down and with strong heartbeats. A sigh of relief. At this point I’m still operating under the delusion that we’re all OK. We are nearly 23 weeks. Smaller babies have made it. In fact Ray met a father of a 21 weeker our first hospital stay – surely our girls had a chance.

6am(ish), the high-risk on-call doctor comes in to talk with us. Clearly I’m infected, but how badly? What kind of infection? Things we need to find out before we can proceed. “I’m sorry, shouldn’t we be in surgery? Shouldn’t we hurry this along and save our girls?” I was confused at the slow pace in which my situation was being handled. Surgery? Nope. Not an option. The infection was so bad opening me up would be dangerous. I would be giving birth vaginally.

I’d been psyching myself up for a c-section for what felt like months now. I should be celebrating a vaginal birth – I’m a doula for crying out loud. But I wasn’t happy. This wasn’t right; a vaginal birth. The girls were so small and so sick and so much could go wrong. They must not think the girls will make it.

7am – shift change. It’s at this point that I’m moved from triage to a laboring suite. Our nurse, Samantha, hooks me up to fluids and antibiotics. I know the drill. The drill. How bizarre? I shouldn’t “know the drill,” I should just be a normal pregnant woman. My head is getting fuzzy. She checks my vitals. 80/40 - heart rate in the 150s. That’s really not good.

8am – Dr. Smith comes in. She’s one of the head honcho high-risk docs. She’s wonderful, but is pretty dry and has always seemed a bit melodramatic to me. She tells me I’m very sick (sure, sure, I think to myself). My white blood cell count is 18,000 (only 8,000 higher than it should be). I’m clearly getting worse.  We need to get me delivered. She tells me I’m at a high risk for excessive bleeding, needing a blood transfusion or surgery. She tells me we need to start pitocin. She tells me the girls won’t survive and she isn’t going to bring in a neonatal team.

I have found there’s a big difference between being devastated and being traumatized in birth. Devastation involves sadness and mourning a situation; trauma involves things happening to you against your will. Sadness imprints itself on you and changes you. Trauma scars you in a way you are never really free from.

I will forever be thankful for my birth team. Because of them I walked away from a life-changing day devastated but not traumatized.

Doctor Smith allowed us time to talk and process and gave me the power to start the pitocin when I was ready. She also had the neonatal doctor come see us, per our request.

I am terrified of needles. You’d think I’d be good by this point. Thanks to a blood culture I now had two IV ports (one in each arm) and multiple blood draws. The idea of an epidural makes me want to pass out. But at this point I’m wondering how much I can handle emotionally, physically, oh, and emotionally. Maybe it would be good to not feel so much? Yes, it’s decided, I’ll suck up the fear of needles so I don’t have to feel the pain. I let Samantha know I do want pain meds and she goes to get the anesthesiologist.

9am (I think – who knows) - The anesthesiologist comes in. He is kind and serious. Says he’s been discussing my case with 6 other colleagues. They are split: half say it’s safe for me to have an epidural, half say it’s not. He’s more on the not-so-safe side, but doesn’t want me in pain. He’ll take a look at my newest white blood cell count and see if it has gone down. Maybe we can figure something out.

It’s at this point I have one of the most important and momentarily frustrating conversations of my life. The doctor leaves and one of my doulas boldly steps up to talk with me. My doulas are there to support my decisions, and me, and under normal circumstances, with a non-doula client, this conversation would probably never, ever happen. But I’m not a normal client and this isn’t a normal birthing day.

 “I’m worried when you look back on this day there will be holes in your memory,” she says. “I’m concerned that if you numb the pain you won’t have everything you need to work through this and grieve.” I know she’s right, but I’m tired and terrified. “I’ll support you no matter what, but I don’t think you should get an epidural. You can do this. We will help you.”

I agree with her even though I don’t want to. I know she’s right. I decide against the epidural.

No idea what time it is at this point. I’ve given the OK for pitocin, it has started at 1 unit, and I’ve begun walking around a bit.

It’s an odd thing to watch your mind and body relearn how to work together. I’ve been walking less than 50 steps a day for six weeks; now I’m halfheartedly lunging across the room.

The neonatal doctor comes to see us. She is brilliant. How anyone can give such horrible news with such grace is beyond me. She can’t medically give us a 0% chance, but in all reality, that’s what Maggie and Ellen have for surviving - a 0% chance. She explains that even though I’m 23 weeks they are closer to 20. Having been without fluid for so long, they never would have had the chance to practice breathing. They will not survive.

Pain. My biggest fear is the girls being born alive and being in pain. She assures me that if they go straight to my chest and aren’t passed around and prodded by the neonatal team they won’t suffer. Nevertheless, she promises to be there with her team just in case Ellen is big enough to be saved.

Ray goes to get lunch. When he returns we send our doulas, my mother and sister to eat as well.

1pm the anesthesiologist comes back in. It’s not good. My heart rate is still in the 150s, my blood pressure still 80/40s, my fever still 102 and now my white blood cell count is nearly 38,000. He tells me if he were to give me an epidural the infection (which they now think is in my blood) could go to my brain. If I begin to bleed out or need a D&C (surgery), he can’t put me under because my body can’t handle it. The only thing he could do in an emergency is a spinal, and that in itself would be very risky.

“Sarah, I’m so sorry for your girls, but you are my patient, not them. You have a little girl at home, right?” I nod yes. “We need to get you delivered. I want you to go home to her.”

That’s the moment. That’s the moment everything shifts and it sinks in that I’m really sick; that this is serious and doctors are concerned about keeping me alive.

The rest of the afternoon and early evening was spent laboring. Steven Curtis Chapman’s Beauty Will Rise album played as I did squats, lunges, had acupressure done, rocked on the birthing ball and labored on the toilet (which, by the way, is pretty much torture).

Pitocin. That drug is the freaking devil. Thankfully, I never thought to ask how much pitocin was being pumped into my body. I think if I’d known I was up to 16 units of pit I would have panicked. It was later explained that the dosage got so high because an infected uterus only works at half strength, if that.

I had been warned that once active labor arrived things would progress quickly. It was true. The pain was intensifying and becoming increasingly difficult to handle. Pretty sure I wouldn’t have survived without my doulas doing hip squeezes and Ray’s constant encouragement.

Then the pain changed – worsened – unimaginably so. My nurse was alerted that delivery was fast approaching; the room became active as the staff prepared for multiple possibilities. Dr. Eppard, the on-call high-risk doc arrived. I don’t remember him arriving; it was more like he materialized out of nowhere. He came in quietly and set the tone for the room – peace. There was no chaos or confusion, just peace and reverence. I will be forever grateful for this man and his peace.

7pm – Dr. Eppard tells me I can push whenever I’m ready.

That’s when I begin to weep.

Pushing is good. It means the pain will soon be over. It means my life will not be in as much danger. It means rest is coming.

Pushing is awful. It means my girls will be born soon. It means my girls will be born too soon. It means death is coming.

I can’t do it. I won’t do it.

Maggie and Ellen : A Birth Story - Part 1

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We had begun to accept that Abigail was going to be our biological miracle. 5 pregnancies, one living child; we felt lucky – we had Abigail. We had given up “trying” and had begun the process of adoption.  And like so many other stories we had heard and read - start adopting, get pregnant.

Walking into this pregnancy I was excited. This go around I knew what I wanted; knew what I needed. I began planning and preparing for delivery right away.

Let’s just be honest – Abigail’s birth did not go as planned. Looking back there are many reasons for this. I didn’t use my own voice and instincts and allowed myself to be directed by others. I was young and so concerned with laboring “right and well;” like it was a test my worth would hinge on. Bath, bed, natural, medicated – I had no clue what I was doing. Labor was going well, then it wasn’t and that’s when things became frantic. The hours that followed were rushed, poorly communicated, and ultimately did not turn out the way I dreamed or planned. 

So this birth – this birth was going to be different. I am older, wiser, and know what is most important to me in birth – peace. Above all else I (we) wanted peace, clear communication, and an environment in which I called the shots.

We live 5 minutes from a hospital and thus made the decision to birth in the safety and privacy of our own home. We got to work, searching for the best birth team we could find in Oklahoma. Yet, before we could sign contracts with anyone, at 10 weeks pregnant, we got the shock of our lives – twins – identical twins.

I was never a girl who wanted twins. It wasn’t something I prayed for or thought would be awesome. In fact, I sat in the car and cried after the sonogram, because I knew my hope of having the birth I longed for was gone.

Boy was I wrong.

It took us weeks to decide where we were going to give birth, but we felt increasingly confident in our choice and team. Brandy our doula and Taryn our monitrice put me at ease, as I began to prepare for a hospital birth in the OR.

Twin-to-twin transfusion syndrome. Who’s even heard of this? Who knew it only occurs in one type of twinning and only 10-15% of those. I read a paragraph about it in a book, I think. I’m sure I skimmed over it, because who prepares to receive the news your babies are sick? No one.

August 20, 2014; the third time in a matter of weeks we received news that our lives would forever change – but this time it wasn’t a good change. I’m lucky ray was there, because as soon as the doctor said, “there’s a problem,” all sounds went wonky and I was lucky to catch a phrase here and there. I can remember hearing something about 80-100% death rate for one or both twins; a life-saving surgery in Houston. That was about it. I was given 5 days to eat as much protein as possible (the only thing known to naturally help TTTS). We would then be sent to Houston, assuming we met the standards for surgery (that day we were 1 once off the surgical requirements. One.). On day 4, my water broke.

The six weeks that would follow were a quick eternity.

I once heard a story of a mother who pushed a car off her child who was crushed beneath it. A car. It’s amazing how powerful our mind and body can be. It’s amazing how much strength our children can summon from within us.

August 24, 2014. With as much as I have submerged myself in the world of birth over the last several years you would think I’d know a bit about premature rupture of membranes or PROM. I didn’t. So when Ellen’s bag of waters broke that Sunday afternoon I thought it was over. I assumed I’d be giving birth at 17 weeks 2 days, but I didn’t. The body is an incredible thing.

The doctor told us with broken waters it wasn’t a matter of if my uterus would become infected; it was a matter of when. We were in a battle against time.

Chisolm – my maiden name. We are a Scottish Clan, the Chisholms, known for fighting. “I am fierce with the fierce;” the saying on our Clan’s crest. Glad to know I still have some fight in me.

Ellen, Maggie and I fought for six long, hard weeks. 9 days of hospitalization. 24/7 horizontal bed rest. 6-8 liters of water a day. 3-4 glucose control boosts. Protein. Protein. Protein.

The beginning of the end arrived with shocking speed. It was 3am, Thursday morning, October the 2^nd. I woke up to house-shaking thunder and the sound of pouring rain. It wasn’t unusual to wake in the middle of the night, as all pregnant women know, but this night was different; I felt off, weak, heavy. I lay there for nearly 20 minutes, arguing with myself about if I really needed to go to the bathroom; it was so much work to get out of bed.

The moment I relented and my feet hit the floor, the infection I imagine had been brewing for days exploded with ferocity. My body began to shake and I noticed my hands were blue (a symptom of Raynuad’s phenomenon – a condition I haven’t struggled with for many, many years). The chattering of my teeth was so loud it actually woke Ray. He led me back to bed and checked my temperature (something we did every few hours), 100.1. The contractions began the moment I laid back down.             

 It’s funny how women in labor always deny they are in labor. This was indigestion; surely not labor. Ray woke my mother (who had thankfully arrived on Tuesday) and called the doctor. Not long after 4am we were in the car headed the hour to Mercy Hospital. It’s a wonder we got there – a storm, me contracting and shaking with fever, and my husband who’s nearly blind in one eye and isn’t legally supposed to drive at night.

We drove mostly in silence; praying – begging God to prepare us for what was to come.