Joy & Grief

I've known Heather Harper longer on social media than IRL. I've always admired her sense of humor and authenticity that shows up through her photos and short statuses. I felt bonded to her after we both gave birth to children born after our youngest was much older - 'big gap' babies.

Infant loss is not new to me; I often feel strange that I have never experienced the trauma when so many of my friends have. Heather's willingness to share on about feelings of deep sadness amongst the loveliness of everyday life reminded me that we can experience two true feelings at the same time. Heather bravely shares about the grief that engulfed her after losing her son, Desmond.

Joy & Grief

When I was five months pregnant with our fifth child, a boy we named Desmond, he became tangled in his own umbilical cord, which cut off his supply of oxygen; he died inside my body. I only knew something was wrong when he stopped moving. I delivered his nine-inch long, nine-ounce body on July 10, 2016.

Today, I should have a busy almost three-year-old boy running around, and instead have a three-year-old grave to visit.

Desmond’s death was my first foray into intimate, soul-crushing loss. I had lost grandparents and other loved ones, and then three months after Desmond, my sister (and only sibling) died. None of those experiences were like the death of my unborn baby.

It didn’t just happen to me; it happened inside of me. It wasn’t only a death I had to emotionally accept. I had to physically carry out the act of delivering his body into this world, even after he had left it. 

My grief was not linear, nor did it follow any predictable path. Shock for sure, but even days and weeks later, shock would hit me over and over again, is my baby really dead? My son can’t really be dead.

Guilt weighed heavily on me - as any parent must feel when their child dies. Even when your brain knows there was nothing you did or didn’t do to cause the death, you try to find a way to blame yourself. I had too much sugar or caffeine and that’s why he was so wiggly and got tangled. I wasn’t happy to be pregnant, and I wished him away. That one hung on a lot. I wished him away. I wished him away.

I had both physical and psychological grief reactions. My arms ached. I read somewhere that this happens in the postpartum period to remind a mother to hold her baby. But I had no baby to hold. These aches in my arms gave me nightmares of being at his grave and digging up his tiny casket with my bare hands just so I could hold him again.

In my waking hours, I tried to appease these instincts by visiting the cemetery almost daily, and pulling up clumps of grass to bring home, just to feel some closeness to him. Thoughts came into my mind that sounded like my own voice, but were not my own. For a long time, the most logical thought I could have was that I should also die.

I understood starkly that death is a one-way door, and that he couldn’t come back to me, but I could go where he had gone. 

In the midst of our overwhelming sadness, we started trying to conceive again pretty quickly. At almost 38 years old, I didn’t have the luxury of taking a year to sort through my feelings. Beyond that, I yearned to be pregnant again as soon as possible. I needed to recreate different memories in that hospital.

I needed to carry a living child out of there, not kiss the cold tiny forehead of my dead baby goodbye and leave empty-handed. Terrified of going through another loss, I once even joked, “If we ever do get pregnant again, I just want to go live in the hospital so if anything goes wrong, they can take the baby out immediately.” My doctor assured me that umbilical cord accidents are freak and to have it happen again “would be like being hit by lightning twice."

Eighteen months later, we conceived again. At my eight week ultrasound,  we found out we were having twins. There was barely any time to react to that news before learning they were an extremely high-risk type of identical twins who share one placenta and one amniotic sac.

Twins sharing one sac (called MoMo twins) die just about as often as they survive; up to 24 weeks, their risk is a steady 50% either way. They almost always die of the thing that had killed their older brother: umbilical cord entanglement.

Because they are so likely to die in utero, all moms carrying these types of twins check into the hospital 3-4 months before their due dates to be continually monitored. That way, the moment anything gets scary, they can be delivered and then continue their development in the NICU.

MoMo twins are always delivered at least 8 weeks early for their own safety. Should one baby decide to pull on the cords, or even turn a certain way, it could cut off the oxygen supply for one or both. My wish to “live in the hospital and be monitored 24/7” had come true.

This time, the odds were in our favor, and our girls did survive long enough in the womb to be born alive.

Indigo and Violet, our rainbow babies, came three months early, and spent four months in two hospitals before coming home. I was able to be awake for the surgery and had a quick glimpse of each of them as they were whisked off to another room. My doctor photographed their twisted umbilical cords and it became part of my medical record; a true knot at the top, and then twisted together all the way down.

An hour after surgery, they wheeled me into the NICU to see them. They looked almost exactly as Desmond had: perfectly formed, tiny little features, very dark red skin. It was excruciating to see them that way, and impossible to separate my joy that they’d been born alive from my dread at their appearance. In my mind, a baby who looked like that was close to death. 

What followed was four months of numbness, anger, depression, and exhaustion between two different hospitals in two different cities.

More doctors, therapists, surgeons, dietitians, and empty bottles for me to fill with my breast milk than I care to recall. Finally they came home just before Thanksgiving, 113 days after they were born. It felt surreal to have them at home at last, and so much better than having our family split between home and hospital. 

As I have watched Violet and Indigo grow and become healthier and stronger, I still find myself struggling to love them for who they are, not resent them for who they aren’t. That’s a very hard thing to admit because I feel like a better mother would never have those feelings.

People tell me so often, ‘They are miracles!’ It is true, they are miracles. They are one year old now, they weigh 20 pounds (ten times their birth weights). They no longer require feeding tubes or any medications at all. 

Their sweetness has brought immeasurable joy to our family.

Yet I will always know that they are only here because their brother did not get to live his life. Having these rainbows-after-the-storm did not give me the redo experience I wanted so much, but has healed me in ways I wasn’t expecting. Having been through the hell of losing Desmond, I was not so scared as some are when they get the MoMo diagnosis.  I knew very well my girls could die, and I knew I held zero control over it.

When your child dies within the safe confines of your own body, it makes you realize how futile it is to pretend to have any control over their safety: car accidents, choking on grapes, falling down stairs, running with scissors, any of it.

The only thing I did have control over was whether I chose to get attached to the babies and be a little excited about it, which I did. I was cautious at first - didn’t even purchase car seats until months after they were born - because hope is scarier than despair. Hope can be crushed.

I was foolish to think I could smooth over Desmond’s loss with a new baby.

A person, even a tiny person, can never be replaced once they are gone. But I am getting better at balancing joy and grief. I experience both on a daily basis. I’m really good at micro-breakdowns and have at least one every day. Washing the girls’ laundry and thinking wow they are growing so fast, and suddenly sobbing because there are no little boy clothes to wash. Remembering him on his birthday and then celebrating theirs 20 days later.

I don’t try to ‘get over it’ anymore. There is no getting over it, and I’m finally ok with that.

Regret

Your kids get to be a certain age and regrets just pile on.

It is unavoidable, really, especially when you are trying to do a thing really well. For a lot of reasons, it felt like heavy work to get our oldest two into young adult mode.

It had not much to do with them, and a lot to do with us.

Teaching kids to drive, navigate adult settings, form meaningful relationships, listen to their intuition, is a complicated endeavor. In fact, I found that I poured so much of myself into that occupation that when they were gone I was shocked.

I imagine a mother bird's immediate response to forcing her baby into flying is, "Oh, crap!"

Then life yells "NO TAKE BACKS!"

I imagine this mother is contemplating all the trips they should have taken.

You are left with just your memories and thoughts. Suddenly everywhere you go is a family with four children, two girls and two boys, and they're doing the things you used to do with your family.

Or worse, they're doing the things you wish you had done with your family.

Poor Spencer and Liam. Determined to not make any mistakes with them I forged back into angry homeschooling. Fortunately, once I caught my jaw clenching I stepped off that train. My motto became, "When all else fails watch a documentary."

Still, at night, I would think of all the choices I should have made. I regretted not working more when they were young, I regretted not doing a different math curriculum, I regretted not taking them all camping more, I regretted not ever making sushi with them.

I regretted.

I regretted.

And I regretted some more.

Make the most of your regrets; never smother your sorrow, but tend and cherish it till it comes to have a separate and integral interest. To regret deeply is to live afresh.

Henry David Thoreau

Unfortunately, as I tended and cherished my regret I found that I was disappointed in me. In who I was. Wondering why I didn't do better, know better, needled at me silently throughout my days. Replaying difficult parenting moments kept me trapped in a place that brought me down in my present.

Regretting who I was then, the choices I made ten, fifteen, and twenty years ago, was doing real damage, because who I was led me right to where I am. Seeing things more clearly is the curse and the blessing of regret. I see now that my younger self was doing her best

If I was doing my best then, then it's fair to say that I'm doing my best now.

And my best needs to be good enough.

Through conversations with other people I realized that, while not everything that happened in my children's lives was as it could have been, they have turned into pretty amazing people. "Kara, your kids love spending time with you. What else do you want?" a friend asked.

Nothing. That seems pretty perfect.

Our kids, generally speaking, enjoy spending time with us. Even better, they enjoy spending time with each other. Each of them are unique, and their path is their own, but they share a generosity and kindness that I appreciate.

The things we lived through forged us in good and bad ways. Moving forward is the only way through. It goes back to radical acceptance.

As our new homeschool year begins I feel a freshness I haven't felt in a while. I can tell the boys feel it, too. I think that's how 'to regret deeply is to live afresh' is coming to fruition in my life. I can see that sometimes my feeling overwhelmed my ability to move forward. So I'll just stop that now.

I cannot reshape their memories, but we are able to build new ones. Lee and I can also be honest about our mistakes, the things we would like to erase. Sometimes that's the bravest thing a person can do.

Be brave, misfits. Just be brave.

Don't Push It Down

Brave Misfit welcomes emerging writer Angie Bernard. She lives in Evansville, Indiana, which is where we met. Angie and I connected through homeschooling, but also as writers, and more recently as women going through big life changes.

Two years ago, at the age of 49, Angie lost her Dad suddenly. He had gone for an outpatient surgery that resulted in his unexpected death. For Angie, who was with him at the hospital, she had the double trauma of witnessing her Dad's passing but also losing her Dad. Angie, an only child, and her Dad, who was single, were a true team.

Angie bravely shares what she has learned on her journey through grief.

---

Don't Push It Down

Literally from the moment my dad died, I felt like this grief was something I had to get past. In my mind, there was a certain path to travel that required a certain pace, and I constantly seemed to be failing at both.

I fought my grief from the very early moments, trying to push it down and control it.

On the day of his death, still at the hospital finishing all that had to be done, I was falling apart, inside and out, but kept trying to pull it together. Days later, in the moments before the funeral was to start, I pulled our pastor into a side room and confessed that I wasn’t “handling this very well”.

Although he assured me that I wasn’t supposed to be handling it well, because it’s hard, I continued to try to push it down and move on.

Looking back, I realize that this has been my mode of operation for many stress-filled events in my life. Not just grieving in my father, but also grieving many of life’s other inevitable ups and downs.

I used therapy and medication to deal with the trauma of the day that he died unexpectedly. As soon I was past the one-year mark, which everyone said would help, I stopped the therapy and medication. I told myself it was time to move forward.

I did make progress in dealing with the events of that day, but I hadn’t done much to process the loss of my dad in my life.

I pushed it down every time it cropped up. I denied it to those who loved me, kept the inner battle a secret and even tried to hide it from myself.

When feelings would creep up, I would tell myself that it wasn’t a good time to deal with them, that I would think about it later. Or I would tell myself I should have adjusted to this facet of grief (there are many), so I would quickly try to change my thoughts to something else. I decided to bury myself in busyness.

This battle began to take its toll on my mind, body and spirit. I gained weight, and was having multiple physical symptoms. I was exhausted and sad and grouchy and frustrated and overwhelmed much of every day.

I was beginning to feel hopeless.

A few short months before the two year anniversary of his death, it all fell apart. I couldn’t keep going and contain the pressure of holding it all in. I first confided in my husband, who of course was not shocked by any of it. Then my physician and I talked. Finally, I reestablished with my therapist.

The most simple, yet most difficult, and most important thing that I learned was that denying my grief was making me sick. Trying to push it down, step past it, and ignore it, was tearing me apart. The thing that I was doing to supposedly make me better was actually the root of the problem.

Many days I doubt the value of Facebook, but one post, one quote set in plain block letters, helped change my life.

“He cried. He knew Lazarus was dead before he got the news. But still, he cried. He knew Lazarus would be alive again in moments. But still, he cried. He knew this world was not his home. He knew his death here is not forever. He knew eternity and the kingdom better than anyone else could. And he wept. Because this world is full of pain and regret and loss and depression and devastation. He wept because knowing the end of the story doesn’t mean you can’t cry at the sad parts.” ~ Stevie Swift

Jesus took time to grieve. So eye opening for me.

In addition to restarting my medication and therapy, I learned to sit with my grief. One Saturday morning I was home alone. An upcoming family event was making me think about how much I hated that Dad wasn’t going to be there for it.

Instead of pushing it down and moving on to something to distract myself, I stopped. I went to my office and dragged out pictures of my dad with the family. I remembered how wonderful that was and said, out loud, “Man, this sucks. I sure miss you Dad.” I just breathed it in and felt it. After a bit, I was ready to get up and finish my day.

Some times the grief hits, and it truly is inconvenient. One day I was at work and came around a corner and saw a man who, from the back, looked just like my dad, ball cap and all. It caught my breath. But I really didn’t have time or energy to sit in it right there at work.

I took note of it, knowing that I needed to revisit it when I had time.

So that evening, as my husband and I were at home relaxing, I told him about the moment. How seeing that man was a split second of familiarity followed by that recurring pain of emptiness.

He sympathized with how hard that must have been and discussed similar moments that he has had. There is a truck in town very similar to what my dad drove and he said it catches his breath slightly every time he sees it. We took moments to sit with those feelings. 

Recognizing these moments, and acknowledging them, has done wonders for my mental health.

I am no longer fighting with my internal self. This has been applicable across all aspects of my life. As a person with chronic “push it down and move on” syndrome, I learned that sitting with grief, or really any sort of disappointment, is not just acceptable, it is necessary.

You have to acknowledge the pain before you can move on. Pushing sorrow down creates a weight that can only be released by setting it free. That can only be done by actually allowing the pain to exist first.

---

---

Angie can be found at www.lessonsfromthejourney.com.

What have you learned about grief, disappointment or sadness? Over the coming weeks we'll be highlighting more writers here. If you have something to add, we'd love to hear about it. Sharing is how we grow, and how we can let go of the weight Angie talks about.

Be brave, misfits, and don't push it down.

Sharing is caring, friends. If you like what you read use the buttons below to share. :)

All the Things

Lately, setting intentions feels like the surest way toward chaos.

We've had so many (wonderful) new things this summer, but also some significant changes. Because of the ages of my children, more changes are sure to come.

At the beginning of June Liam participated in a three week camp for students with dyslexia. It's called a camp, but it's really an intense academic boot camp. I worked to cover the cost of tuition.

We learned a ton but came away quite exhausted. The amazing news is that Liam is reading more smoothly than he ever has. He won't admit it yet, but I think it was totally worth the pain and suffering.

Anyway, in the weeks following camp I doubled my efforts with my tutoring business. I've made mistakes, like paying for a website. But I've also made progress, by finding mentors.

I am at a strange crossroads of having adult children jump from the nest, and beginning a new (yet not new) career. I'm learning so many new things at a time when I thought...

Crepe myrtle spied on our neighborhood.

Well, I don't know what I thought. I definitely thought things would be easier at 45.

I didn't think parenting adult children would be so difficult, for sure. It's not the kids that are the problem, either. It's me.

I think about them a lot. I wonder where they are and what they're doing, but I'm also relieved to not know all the things.

Lying in bed with headphones and my favorite playlist, giving my mind permission to take a break has to happen regularly. I feel like my junior high self as I listen, and sometimes cry, to the best songs.

It's the place where I don't have to think about:

• Did I tell them how to transfer prescriptions?
• Will they go to the cardiologist on their own?
• Will I go to the dentist on my own?
• Should we have made them practice changing a flat tire?
• What if I'm not cut out for working AND homeschooling?
• How many episodes is too many?
• What the heck is a dangling participle, and should I care?
• Have I scarred my children?
• Was leaving church a mistake?
• Was being in church a mistake?
• Is there such a thing as balance?
• Why do we get skin tags?
• What if someone gave me a baby?
• Could someone give me a baby?
• Was my wild youth wild enough?
• How can I be a better person?
• What is for dinner?
• How did I get here?
• Am I failing?

Lee sometimes asks why I'm so tired. When I tell him he doesn't have a lot to say, except, "Oh." I think our brains work very differently.

One morning he told me that I checked his forehead for a fever all night long. There is no memory of that stored away anywhere. But I must have worry on autopilot somewhere in there.

It's not even parenting stuff that takes up the majority of my thought life. I'm parenting me to my next phase in life. I've said it before, but it's like I'm a teenager in some ways.

I have to remind myself to wash my face and brush my teeth. Some days I even have to remind myself that showering always makes me feel better.

I have little pep talks with myself. "You can answer emails. You can make phone calls. You can learn new things." It's all true, too. I'm doing it all AND I feel fairly confident. Not overly confident, though, just the right amount.

I think it's just the right amount of confidence anyway.

ThredUp is helping me revamp my closet on a shoestring budget, so that's been fun. I'm all about a minimalist capsule wardrobe, apparently. My goal is to only do laundry once a week. I'll share some of that next week. :)

In other news, I felt sad that my sassiest black jeans developed an unsightly hole in the crotch/thigh region. But, I felt happy that my travelers notebook has turned my life around in ways that were completely unexpected.

This is me the day my travelers notebook came in the mail. I don't have a picture of the day the crotch wore out of my pants. You're welcome.

Laurel said I could not call myself Hot Krotch Kara when I turn to stand up comedy. #sadface I thought it was clever.

Guys, there are just so many things right now. Like, all the things.

I will say that learning to meditate has offered a huge relief from all the things.

At night, when I'm falling asleep, I always whisper, "Jesus, thank you for taking care of all the things. Amen." That's become my mantra.

But also, I'm thankful for all the things. A few years ago it all felt so hopeless and confusing. I found myself doubting the decision to stay home with the kids. I regretted not having an income.

It's such a surprise to find myself in this new place of being someone who knows a crap ton about dyslexia, but also learning in general. I'm loving it. It appears just the thing I needed because I find this excitement spilling over into other areas.

Officially, I'm excited to start our homeschool year!

So, tell me what surprises have found you as you turned a corner in your life, friends. I know I'm not alone.

Be brave misfits, and thank God for All the Things!