Don’t Save The Good

The “nice” napkins.

Mrs. W came over to meet Elise shortly after her birth. She brought the most beautiful outfits- soft white organic cotton sleepers, a delicately embroidered ivory dress, and some other things that should be ten feet away from a baby.

These elegant pieces looked perfect, expertly wrapped and nestled in a box. Mrs. W must have known what I was thinking (that I would never put a newborn in white, there would be poop and barf all over them in minutes, who is going to see these beautiful clothes since we aren’t going anywhere because this baby needs to eat every two hours and I feel like my shirt is always off so we just sit on the couch topless and watch reruns).

She looked me in the eye and spoke with a firm voice. “Don’t save the good.”

She’s right.

The wedding china isn’t used for leftovers or pizza. There is a piece of jewelry, forever sitting in a box (because it’s only appropriate for a black tie event that you’ll go to on Saturday, the 5th of never). Our wedding memories are allowed out on the anniversary. The special handwritten note is tucked away. And that air hockey puck we may or may not have taken from the boardwalk arcade to remind us of someone? It’s in a drawer. Some drawer, maybe. Maybe?

My grandmother also subscribed to the same theory. Why wait? And, for what? For who?

We are worthy of the nice, even if it’s just us. Every day. And the people we surround ourselves with are most deserving of the good. It’s counterintuitive to let your children know what it feels like snuggle in the delicate quilt that has been passed down from generation to generation. But who better than them?

The extraordinary moments in life come without the foresight of knowing when they will happen. Don’t wait for the right moment, only to open the drawer of life and find that baby romper, two sizes too small, with the tags still on.

Shrooms For Days: Food for 2020

I’m a victim of the quarantine 19, and I’m blaming my husband.

He’s a chef. When someone makes food for a living, really really good food, and they live in your house, you don’t stand a chance. When you have no place to go, you give in to the kitchen.

When we first were home, in mid-March, my husband started a spiral notebook. The left page was a menu for the week, with recipes at the bottom. The right page was the grocery list.

We always meal planned (if you don’t, you really should). But, Noah took it to a whole new level this time. What else was there to do? It also gave the kids more foods to add to their gross list.

We’ve reached the end of the notebook. We jokingly asked if that meant covid is eliminated (we can only hope).

Maybe one day, Noah will publish his spring/summer 2020 volume. In the meantime, we’ll get a new notebook, start into a fall/winter edition, and keep looking ahead.

Below is one of the surprisingly best things that he’s made. Enjoy!

Mushroom Burgers

  • 1 lb mushrooms (we did a mix of white and brown)
  • 1 cup panko crymbs
  • Two shallots
  • 2T. Tamari
  • 1/4 c. Balsamic vinegar
  • 1T. Maple syrup
  • 1/4 cup flax seeds
  • 1/2 t. Smoked paprika
  • 1 cup cooked rice (sushi or risotto)

Slice and cook the mushrooms and shallots over medium heat. Add the tamari, vinegar, and maple syrup. Add the paprika. Cook until shallots are translucent and soft, and the mushrooms are soft. In a food processor, lightly pulse the shroom mix, flax, rice, and 1/2 of the panko. Transfer to a bowl and fold in the rest of the panko. Shape into burgers, and brown in a little olive oil in a pan.

Normals

I tried yesterday to figure out why I was so anxious. It really helps that my friends are therapists. They ask the right questions and allow my answers to tumble out. Only then do I stop and realize what I couldn’t articulate has become a defined, organized thought.

I didn’t realize what my normal really was until it was gone.

My social media feeds are full of mommy-loves-wine jokes, how to keep your kid busy suggestions, and streaming yoga at 2pm (Can’t! Representing the new work at home mom!). One thing I haven’t seen on Facebook is how to explain all of THIS THAT IS HAPPENING to yourself.

Who would have known that my new normal would involve coaxing my kid into watching Mo Willems draw an elephant at lunchtime while I make a PB&J with one hand and type emails with the other? I do love Mo, though.

It is not possible to return to a pre COVID-19 world. That makes me scared. I’m afraid that I will lose people I love and the life I have with them. We take our current normal for granted.

My hope is that relationships will go on, kids go back to school, and I will go to my office to work. We will pay bills, pick up dry cleaning, cut each other off on the highway, and hold doors. We will high five and hug.

I’m also going to hope that all of my people and relationships stay put. These are the important things and if you’re lucky, you take them with you as you move through phases of life, no matter how normal or abnormal those phases are.

“The Body Keeps The Score”

This is an open letter from me to you, and I hope you read every word. What I have to say is important.

We have a marriage like Alec and Kim, or Sean and Madonna- we love each other but we also love to hate each other. We carry on with our tempestuous relationship because we have no other choice. We’re stuck together.

Yes, body, I’m talking to you. Sometimes your heaviness leaves quietly, without me having put forth a declaration that things will be different this time. Other times, the weight of you is a mental and physical sandbag on my waist, pushing me down. You bring tears of anger and frustration to my eyes when you do this. I question why you don’t do this to seemingly everyone else.

I try to tell myself that you don’t define me, that you don’t make me who I am, and that you’re simply a vessel to my mind and heart and my essence, which is what REALLY makes me who I am. When I do this, you are in the back of my head, telling me negative things. I hear the faintest whisper from you, and it pulls me into a place where I detest you. I sometimes find pleasure in punishing you.

Other times you’re loud, and obviously there, all of you, taking up much more room than I want you to. You make me defenseless, and I have abused you. Sometimes I think you deserve it.

Maybe I will get to a place one day where I unconditionally give you the agape love that you deserve. You’ve done many wonderful things for me, but you’ve also disappointed me. This is life- yin and yang.

Since we are together for life, I’m now trying to take care of you. I’m mindful of the anxieties around what size you make me. I’m trying to include you in pictures. I’m trying to show my daughter that I am comfortable with you.

Until we get there, body, know I’m trying. Know some days will be easier than others. Please realize that cycles and habits are hard to break. I will try not to judge you as much as I do now. I will not to starve you one week and then push you physically the following week.

Deep down I do love you, even though most days I don’t like you. But we will never be unraveled, and I promise that for the duration we are intertwined, I’ll appreciate the roots you’ve given me to someday grow into my own graceful tree of acceptance.

The title of my essay is from the title of this book, by Bessel A. van der Kolk, MD

Paying It Backward

Tried to pay it forward today. It didn’t work at first. I was stunned. Through tears, I tried again with someone else. It worked.

Maybe sometimes you need to be persistent with kindness before it’s received. Maybe it’s never received. That doesn’t mean we should stop trying.

At lunch, I saw this sign. A literal sign. Maybe the two men this morning- the one who rejected goodwill in Hank’s name, and the one who heard my ten second story of why I was giving him a gift card- both ended up paying it forward and this means it’s come back to me?

The Blade

I have this occasional but reoccurring thought that my house is on fire. I have two items I need to get to- Hank’s ashes, and his memory box. I try to go back in but either someone won’t let me, or I can’t due to the size of the flames and thickness of the smoke. I lose both.

A few weeks ago I panicked. I needed to see his pictures. I get this urge maybe once a year. The urge is so strong that I will race home from work, tear through the closet, rip the lid off, and just stare. I cry and apologize to him for failing him. I put the pictures back, get myself together, and go back to work.

No one is my office is none the wiser as to my actions over the last hour. I pretend to have that post- productive-lunchtime-errand-running-glow when I walk back in to my office. “Dry cleaners AND Home Goods!” I will sometimes announce this triumphantly.

The last time I tried to see the pictures, I couldn’t find them for about sixty seconds. I couldn’t find them because they were face down, in a sealed sandwich bag. I panicked again. What if they got stuck together and I couldn’t get them apart unless I ripped them? What if they got wet? What if the fire scenario came to fruition?

Most everything that is material in life can be replaced, except your deceased child’s stuff. I have so little of it that it can fit in a shoebox. I have no opportunities to grow this pile of his things. They’re not tangible or material things. They’re as important as a living person.

After I put Alex to bed last night, I had to get to Fedex. I couldn’t sleep until I made copies. Two copies, and one more copy on waterproof paper. I handed the pictures facedown to the woman across the counter and told her what I wanted. She nodded and flipped the pictures over.

Only one person outside of my husband and parents have seen his pictures. Now make that two. By the grace of God, the Fedex woman didn’t miss a beat. I was bracing myself for every question. None came. For this I breathed a sigh of relief that everyone in that store probably heard.

I asked her to trim them up, since she put two pictures on each page. She said I can do it myself, and walked me over to this paper cutter that cleanly slices through probably everything. She helped me get started. I thanked her.

“These pictures are really important to me,” I whispered.

“My pleasure. Glad I found that waterproof paper for you. Let me know if I can help.”

I’m doing great, on this satisfying paper cutter, it’s smooth blade effortlessly moving back and forth. Its like a safe mandolin, or deli meat slicer. I line up the edges and move the blade. It’s calming and satisfying, until I remember the autopsy.

Without going into too much detail, after almost seven years after Hank’s death, I got up the courage to ask for a copy of his autopsy from my doctor’s office a few weeks ago. When I left, I took it out to my car and read it. I got about halfway through.

My heart jumped when I saw the words FINAL AUTOPSY REPORT written across the top, on hospital letterhead.

Hank was not Hank, or Henry. He was “BB Mathay, Anne”. My baby boy. No identity, just a body.

The autopsy was not great. It has some things I never knew (blonde hair! 2.88lbs!). It also had some things I thought I knew and a whole lot I didn’t. It was hard to read how my body had failed him. It was hard to read that summary at the bottom where the medical examiner ruled his cause of death.

I sliced away on the fancy paper cutter as I thought about how the medical examiner looked at him. He looked at him scientifically and objectively, and without emotion. That’s his job, and he’s excellent at what he does. It’s not his fault that he’s labeled my son BB Mathay, Anne. Did he slice a blade cleanly, with precision, like me? Was he methodical and efficient? Did he think that there would be a mother out there, almost seven years later, slicing away at the pictures of this BB Mathay, Anne?

I left and came home. I held it together until I couldn’t. I heaved big sobs on the bedroom floor for a few minutes. I channeled my inner Annette Bening from American Beauty (remember her breakdown that ended almost as quickly as it started?) and moved about my evening. It didn’t stop the tears from my eyes.

We all find out things that we don’t want to know, but we are glad we have the answers to what happened. It doesn’t make those answers easier to swallow- it can make them sit in your throat, rising up and down for a few hours, snarled with sorrow and bile and anger. We are able to eventually push them down and get on with life, but it never goes away. Every time you swallow you feel it.

Not The End But The Beginning

One of the things I’ve been working on in 2019 (well, like to THINK I’m working on) is being nice to myself. I want to treat myself how I treat others, and figure out what is important in life- to not be jealous, to not value material things, to be thankful.

This is very long so thank you for reading any and all of this.

 

We founded Hank’s Hope officially in 2015. We started before that, though. In 2013, we unofficially formed, and tossed around ideas and thoughts. We had a GoFundMe to raise money for incorporation and took the plunge.

 

Amazing friends and family members volunteered for board positions. I held a volunteer meeting. I had nothing to actually tell these volunteers what they would be volunteering for, but no one seemed to mind. The support was overwhelming.

 

In these four years, we’ve done a lot. We moderate a peer to peer pregnancy and infant loss group each month, where women and their families come together to share, laugh, listen, and cry. We commissioned an original piece of artwork that now hangs in the chapel at Nanticoke Hospital, in Seaford. We paid for bereavement education materials for the staff at Bayhealth, in Dover and Milford. We’ve helped to fund projects at A.I. DuPont Hospital and Delaware Hospice.

 

We have bags that live at almost every hospital in the state- they’re full of comfort items, nice toiletries, and personal items. These bags are given to women who come to the hospital for an emergency delivery of a stillborn- women who don’t have time to go home and grab their hospital bag. Each bag has a handwritten note from a loss mom or dad. We let these women know that they’re superheroes. Maybe one day they will realize they really are.

 

The thing, though, that I am most proud of, is when we held Delaware’s first and only Wave of Light, on Pregnancy and Infant Loss Awareness Day (October 15). We had a magical space at the Delaware Center for Horticulture. It was lit with twinkly lights, lanterns, and live music. We paid tribute to our babies at dusk and lit the space with candles. We pushed the wave of light through Delaware so it could continue around the world.

 

But, I’m tired. REALLY tired. Work, home, kids and activities, travel for my job, maintaining relationships with my friends. I fall into bed every night, spent, knowing I’ll be up in a few hours to give the baby a bottle or to tuck my daughter back in bed after a bad dream. I have help in my husband who pretty much runs our household, and my mom, who is at my house two days a week to watch my youngest. She also helps to run my household, too. I don’t think these two people will ever know how grateful I am for their help. They do it so I can do what I do. They do it for me, for Hank, for our family.

 

I thought it was time to let go of Hank’s Hope. It was time to focus on something else. Do I become more active in my board role with Pregnancy After Loss Support? The guilt was overwhelming. The fear of giving up Hank’s Hope represented the fear of getting to a point where I was giving up on him, and moving on. No one gives up and moves on from their child. Why did I feel like it was ok to do this?

 

I ran this by a few board members and close friends. I didn’t want to tell anyone else. I was disappointed in myself to even have these thoughts. Maybe this was my self-care, though. Maybe it was to grieve through something else. I had everyone’s support to make the choice I wanted to make.

 

Fast forward to last week, when we were notified that Hank’s Hope will be one of six non-profits in Delaware to be recognized by the Lieutenant Governor for outstanding contributions in the health and wellness space.

 

That email hit me- I wasn’t ready to give up. A refocus was needed to refocus. I needed to figure out what our core mission and services are, and do them really, really well. There is no race to do the most. There is a moderate balance to grieve my son, help others, and be able to breathe at the same time.

 

We will be making some changes at Hank’s Hope- enhancing some things, partnering with other things, scaling back and doing what we do WELL. I will ask for help (volunteers, I now know where I need your help) where I need it. I will delegate (I did it this morning!). THAT is my self-care. Delegation is not a sign of weakness. Asking for help is not an indication of failure. Side note- if you know how to handle these feelings, let me know.

 

In the last month, two women we work with have each had another loss. I sobbed for them. God is NOT fair in my eyes. But you know what IS fair? Having Hank’s Hope for these women. This is my purpose. This is what I should be doing every day (sadly, it doesn’t pay the bills- or anything!). I wanted to call out today and run to the hospital and sit with one of these women, who gave birth too soon last night to a perfect but too early baby. I didn’t- but with permission I told our core group of women. One of them stepped up and is organizing something. I asked her to run with it. I delegated.

 

My mom had the best response for this:

“If you didn’t have big dreams your life would be pretty empty and not too meaningful. You’ve never given up helping friends, even those you’ve not met yet, and God know they’ve never given up helping you. Time is such a precious commodity. It’s like elastic, you can stretch its capacity, reshape it, rework it, and it goes back to its original shape. Much like the management of your time. Reshape, rework, then move on.”

Thank you to all of those who have helped me, with their hands and hearts and ideas and hugs and money. Hank’s Hope will go on, just as loss moms do, every day.

Hope is what we live for.

 

Self(ish) Self Care

My Real Simple magazine cover screams out from my mailbox today. Take time for you, it says, on a photo of dewy roses or peonies or some other equally beautiful flower.

As women, all we hear about is self care. But, what really does that mean? What is MY self care? A pedicure? Ok, and then I will have chipped nails in three weeks and then have to find the nail polish remover I’ve hidden so my kid doesn’t get into it, take off the color, and then have ugly ass nails the rest of the summer.

Massage? It takes me forever to relax. Sixty minutes is up! So is $70, plus tip.

A friend suggested a girls night in. Sounds fun. But, who is hosting? That woman has to clean, make food (or we all make food), make sure there are face masks and wine glasses for everyone, and then….clean up. Self care is saying “don’t just put your plate in my sink. Rinse it and put it in the dishwasher.” But at the end of the night, we’re all “just leave it there, I’ve got it!”

And, is self care actually selfish? You can’t serve from an empty vessel, blah blah blah. There is a floor that needs to be cleaned. How can I justify a nap?

I’m having a hard time today seeing the bright side. It’s one of those days, I guess. It’s a day where I would encourage someone that I love to practice self care. I have no idea what that means. Is it just something to say?

I’d love to read, and nap, and relax….but that time ends. It always ends, and you’re right back in it. It’s like taking a day off work. It’s great at the time but you come back to a disaster of a desk and realize sometimes it’s just not worth taking that day off.

Maybe one day I will figure out what “take time for you” means, and learn that that time has finite limits and life is still happening. In the meantime, you can find me putting that Real Simple magazine on top of the growing pile of reading material I have. Maybe I’ll get to it someday…..

A Monday, And Children Fair Of Face

Saturday morning, while waiting to read in the Baltimore City Lit Festival, I had an overwhelming desire to see Hank’s picture.

We don’t display his picture at home. I’ve only looked at it a handful of times since 2012, and it hasn’t been viewed in at least eighteen months. It’s hard for me to see him without life.

Saturday, though, I needed to see him. I’m not sure if it was because I was telling his story (even though I’ve been able to do it a thousand times without getting emotional) or because I had been thinking a lot lately about baby loss friends integrating their lost child with their living children. It may have been because my co-worker was due to have her baby any day. Regardless of the reason, I needed to look.

I was damning the WiFi connection in the auditorium. Years ago, my Dad scanned the few pictures we have, and they’re saved to few spots, including a folder in my inbox. I couldn’t get any of the files to open, so I read my essay in the auditorium without viewing his picture.

I wondered on the way home if it would be a good idea to show Elise some pictures of her big brother. Was it time to stop hiding them, and let someone else besides my husband see?

Today is Monday, and as soon as I got to work I realized that I left part of my pump at home- every working and nursing mother’s nightmare. When I got back to the house, I immediately ran upstairs and got out the box where his pictures are housed.

I was hit with the weight that my new baby boy Alex looks like his brother. They have a similar face, long fingers, big feet. They share a nose. Eerily similar, except Alex breathes and is warm and chubby, and Hank has never taken a breath. Brothers, so fair of face on this Monday morning.

I started to cry. It wasn’t fair to have birthed this beautiful boy into a world forever silenced by his absence. I looked at this baby, my son, and told him I was sorry for failing him- I couldn’t get him to live, my body couldn’t sustain him. I was sobbing, and I had only a minute to grab my pump and head back. Good thing I can blame puffy red eyes on allergies.

On the drive back to work, I got a reality check from a friend and a fellow loss mom. She understood the feelings about seeing the pictures and mementos. It’s a fresh heartbreak for some, she said. She was right.

It’s not time for Elise to see those pictures. It’s not time for me to look at them regularly, either. The images in my mind of his love, legacy, and liveliness is what I need to see.

Countdown

A number obsession continues….

39 days until maternity leave.

43 days and seven hours until I check in to Hotel Christiana Hospital.

172 more blood sugar tests.

1,032 more units of insulin.

8 more biophysical profiles.

2 more holidays.

1 more big mental milestone to pass.

28,473 things to do before baby (not really, but this is a close guess).

1 more hair cut and color. Maybe 1 more pedicure.