Sep 12, 2020

The Woman My Husband Married

I'm not the woman my husband married. I feel a long way away from that carefree, long-haired, faith-full girl. We said our vows that sweltering day roughly 14 years ago, not having a clue what was coming.

I have been thinking about vows in an "and" sense instead of an "or" sense. It's really not for better or worse, richer or poorer. If you're married long enough, it will be and.

For richer and poorer.

In sickness and in health.

For better and worse. 

We didn't know that richer and poorer are more about mindset than money. It doesn't matter how much we make if we have the mentality that money is scarce which means we'll never have enough. 

We didn't know that in sickness and in health may not be ours, but our child's, our parent's, our friend's. 

We didn't know that sometimes our better is our partner's worse. 

When we said "'til death do us part" we didn't know that navigating the death of one's partner alone might be easier than navigating the death of a child together.

We didn't know that we'd fight about sex, parenting, politics, church, extended family, money, movies, furniture, pets, hobbies, end of life wishes, holiday traditions, 

and it doesn't matter how much pre-marital counseling we got because


we all change. 

Here's the marriage advice I would give to engaged couples, newly married couples, couples that have been at it for decades: 

Get used to disappointment. You'll have to work harder on yourself than you ever have before. Happiness is possible in any relationship as long as we realize that happiness is completely dependent on ourselves. We cannot make someone else happy, let alone have someone else's actions make us happy. I have been trying to teach my kids to not say, "He made me mad!" Go ahead and say, "I'm mad" but recognize our own responsibility in how we feel. 

Also, don't look for the evidence to confirm our "justified" annoyed feelings. It's easy to notice the things our partners do that piss us off. Dirty socks one foot from the laundry basket? Check. Checks their cellphone right in the middle of a conversation? Check. Grounds the kids from TV right before leaving for work? Check double check. If we're determined to find reasons to be mad, we will. 

So we work at finding reasons to be grateful. We open up when we feel like closing off. We divulge secrets. We talk when we feel like keeping it in. We walk, hand-in-hand into the unknown, knowing that we've got each other's backs. 

I'm not the woman my husband married, 

and thankfully, we're both okay with that. 

If you are in an abusive relationship, mentally, spiritually, verbally, or physically, you can still love that person and leave. There is no shame in breaking vows when they were first broken by the one who vowed to protect you.

Sep 6, 2020


I think about death a lot.

I've thought about it in the last 118 months since I heard my daughter would die young.

What is it going to be like for her? What is it going to be like for me? Am I going to know when the last kiss is the last kiss?

I know I'll regret a lot. I acknowledged years ago that regret is inevitable, a close companion of grief. I have made a point of not torturing myself when I make decisions based on the "am I going to regret this later" thought process. It doesn't do any good to prepare because there will be regret regardless.

I hope that I can somehow keep her from pain. That is my biggest fear. What is it going to be like? Is she going to struggle to breath? Struggle to swallow her own saliva? Is she going to drown in her own fluids, terrified, scared and desperate to breath?

Is she going to look in my eyes, pleading for help when there's none I can give her? Am I going to run away? Will I be brave enough to stay with her through all of it?

I asked a nurse what the end was like. Not morbid curiosity, but for help. Help me not be afraid. Help me know what is normal, help me know what can be helped, what can be soothed, what can be done.

There is a desperation in grief. Wanting so badly to be out of it, but knowing in this situation, getting out of the grief of watching her die is no relief at all because on the heels is the grief of her being gone.

What should we do with her body? Her shell once she's not there anymore? I think I want to keep her ashes somehow.  I think having a piece of her would be magical. A solid something to hold on to when everything else was just hers and not her. I'm desperate to keep her with me and I hope that heaven, whatever that is, keeps her for me until I can be with her again.

Waking up from the nightmare of death is the nightmare of living without. Without her smile, without her kicking legs, without her golden hair, without her perfect stare, without her wet hands, without her tiny feet, without her fuzzy arms, without her bruised up knees, without her sharp finger and toe nails, without her ear dimple, without her crooked smile, without her gulpy giggle, without her straight-legged stair descent, without her stinky diapers, without her noisy eating, without her sipping sounds, without her soft belly button, without her beautiful forehead, without her delightful eyebrows, without her little button nose, without her full pink lips, without her knobby knees, without her big tummy, without that little knob on her spine, without her skinny shirt-slipping shoulders, without her leaning into me, without her grabbing my hand, without her pulling her knees up into the chair.

It's true that I think about death a lot, but I think about life a lot more.

Sep 2, 2020


The person I was couldn't possibly be the person I am now. Grief has changed me, more than once. 

There are depths to this anguish of losing a child I thought humanly impossible. When I say "losing a child" it sounds like she's already gone, even though she's still physically present. I've lost parts of her every day since her diagnosis nearly 10 years ago.

I didn't drift away.

I clawed and scratched and wept and prayed and clutched white knuckled to the only faith I'd known. The faith that told me who I was, who I am, who I will be. The faith that told me who God was and how I was supposed to relate to Him.

I can envision what others say, because I have said the same.

"It's because she stopped going to church."
"How long has it been since she read her Bible?"
"Who is she listening to?"
"Maybe she was never truly saved."

I know the lines, I know the thoughts, I know the horror and more importantly, I know the fear  of hearing that someone you love, someone you thought you knew,  leaving.

I have felt in a desert, a true wasteland, for years. I remember before we left our home church, our church that had seen all three babies just weeks after they were born, being passed around from person to person as we stood up front and led the church in singing mere weeks after the birth, the only church we had known as a married couple, the church that stood with us and wept when we told them our daughter was dying, our church that cried with us as we told them we were leaving. Before we left that family, I had sat at the piano for months and months, feeling like I shouldn't be there. I would hold back tears, knowing I didn't belong there any more.

Those feelings came unbidden. I didn't welcome the unease, the discomfort, the unsure-ness of it all. I fought it all. I fought the doubt, I fought the unknown. I knew the authors I should read, the podcasts I should listen to, the verses I should memorize, the prayers I should pray, the Bible studies I should be in.

But I couldn't.  I could not do more of the same. The small box I had put God into had a long fuse that was woven through all areas of my life, and it was near enough now that I could see the sparks and smell the flame.

When the flame reached that box, it was irrevocably obliterated.

In the years that continued to roll in, my faith shifted over and over and over again. I learned new phrases like embodied, and deconstruction and mystical. And while these phrases would've scared me as a Bible college graduate. a worship leader, a stand up example of the full-faith wife and mother and woman, those phrases now felt like home. They felt like an introduction to me.

New faith doesn't feel scary now as it did when I was still clinging so tightly to my old faith. I gripped my native faith so tightly not because I believed, but because I thought I still should. I thought of the people I would disappoint, the people I would repel, the people who may feel like they couldn't hold a conversation with me about anything anymore because who is she?

I'll tell you who I am, though it undulates and flexes and roils like the ocean as more is uncovered and examined and allowed.

I love my children. I love my husband.

I have faith. I have hope.

I know my body better now than I ever did before. I trust it. I trust my feelings. I trust my physical cues. I listen to my thoughts. Yoga has been intensely helpful in unlocking physical and emotional blocks. I'm no longer disconnected. I believe in the power of meditation, from a scientific and spiritual viewpoint.

I am growing more and more fearless all the time.

Beliefs are thoughts that we think over and over again. I choose what I believe. My aim is to love God more and love other more so I choose to believe things that help me do that.

I believe in the beauty of humanity and I choose to look for it.

I am open. I am more interested and curious to learn about others' experiences, beliefs, ideas and ideals than ever before. I can listen with a desire to understand without the weight of witness on my shoulders. I desperately want to talk with others who have similar experiences to mine, regardless of their native faith.

This sojourn into the unknown has been lonely, lovely, disconcerting, freeing, exhausting, exhilarating, and destined. I have no term to attach to my beliefs. Nothing seems to quite fit right now, and that's okay. 

I didn't drift away. I'm still here.

May 29, 2020


Anni. My Anni. Twelve. Not long ago, you were 11, and 10 and 2, and fresh out of the womb, squirmy and simply perfect.

While birthdays are wonderful, they are also desperately painful.

I'm so grateful for another year with you. Another year we had to work our hardest for one of your dimpled grins, and even harder for a giggle. Another year of reading books and playing music loudly and snuggling. Another year of staring into your big blue eyes and brushing your wild hair. Another year of you.

Another year watching you lose skills. This year it became unsafe for you to walk by yourself. This year we risked surgery to give you a feeding tube, hoping it would be many years before we had to rely on it, and it was this year that we inevitably did. It was this year that your seizures picked up the pace and new damage to your brain started showing up in other ways.

As we sang happy birthday to you I couldn't help but think about when you chose your birthday dessert yourself, and told us what you wanted for presents. You would blow out your candles and devour every crumb of your piece of cake.  This year, we took care of the candles and you couldn't eat any dessert.

Even as I painfully lose you more every day, I promise to make each day as wonderful as I can. You are living life well, my beautiful girl.

Happy birthday to you.

Jul 1, 2019

"You're so strong."

"You're so strong."

In the last 7 years since our daughter's terminal diagnosis, as we slog our way through a disease that is formidable, I have heard that phrase too many times to count. I wonder why people think I'm strong. Does suffering preclude strength? Does "being strong" just come with the territory?

Before you think I'm a superwoman, holding it together all the time with joy and strength and great courage, I'll let you in on a little secret: I'm just like you.

I lock myself in my bathroom because I'm maxed out on noise and fighting and dishes and will someone please take out the trash already? I sometimes say "no" to social stuff, not because I don't love my friends, but because the amount of energy it requires to get myself ready, get things set at home for me to be gone, figure out a time that works for everyone is just exhausting enough to make me want to stay in my comfy clothes and watch episode after episode of Parks and Rec.

Jun 4, 2019

Are you safe with her?

Are you safe with her?

Do you know that she will speak kindly and gently to you? Will she respect your story?

Will she brush aside your experiences, or tell you they're not a big deal?

"Stop being so emotional."

"Yep, you're a failure."

Will she tell you you're not strong enough for this world? Not pretty enough? Not smart enough?

Will she look you up and down and pinch and poke and point out your "flaws"?

Ah, dear one. Be gentle with her. She learned this behavior over a lifetime. For she listened to the story that said she was broken and she believed it. She heard she was worthless and she tucked it away. She felt she was different and alone and on the outside and she felt it had to be true.

Are you safe with her?
For she is you.