Blog

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.

 

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…..

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.

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.

I’m writing about boobs and breastfeeding. If you don’t like this topic, don’t read it. I’ll be back soon to write about something different.

I don’t know if it was my postpartum depression and postpartum anxiety when I had Elise, but I never LOVED breastfeeding. Sure, I liked looking down at my daughter, watching her eat. I liked knowing that she was getting the best- because breast is best, right?  I also felt small moments of victory when she gained weight, when we started to get a routine down, when we figured each other out. 
 
I did not like her latching on and instead of feeling this euphoria, I felt probably every other feeling. Disconnect, anxiety, anger- not at her, but in general. It didn’t help when, in the beginning, I had to wake myself, and then wake her to feed her. My alarm would go off at 2am, I’d wake her and it would take sometimes 45 minutes to feed. I’d put her back to sleep, only to have my alarm go off an hour later. Sometimes I didn’t even fall asleep. I couldn’t take my husband’s snoring. It made me even angrier that he got to sleep away, while my shirt got wet, my head pounded, and my heart raced.

Eventually, though, those early nights gave way into the months that followed. I pumped at work. I pumped at home. I even pumped hands free while driving.  Thank God I didn’t get pulled over, Medela whirring away, plugged into the cigarette adapter.  Elise stopped nursing at maybe 6 or 7 months, and I exclusively pumped for another twelve weeks. 

 I was so worried about having to wean her- I was afraid of the emotional let down that I’d get, like everyone says, how they wish the last time they nursed they knew would be the last. But when she turned from me but would greedily suck down a bottle, I was all too happy to oblige. My emotional sadness never came. I was finally getting my euphoria. She was still getting my milk, though. Breast IS best, right?

At ten months, I was tired of it all. I was sick of exclusively pumping.  Formula was looking awfully appealing. My production had slowed down. I wondered who I was doing this for. I told my husband I wanted to stop. I was prepared to be met with opposition. Instead I got an “Ok, yeah, I mean you did it for ten months. So, that’s cool.” 

We promptly joined Costco and I bought those glorious, glorious cans while putting my own ones back into a real bra for the first time in a year.

I breastfed Elise because I could. I encourage others to do it if they can. I also encourage others to formula feed if they want to. The goal is to get your baby fed. However, if there are guilty feelings moms get for not breastfeeding, well, I have them too.  I’m wrestling with taking my own advice and deep down inside I still feel a tiny bit of stigma attached to all of this.  And, pregnant again, I’ve got a choice.
 
Sometimes I think that adding water to powder and shaking it up in public is more taboo that whipping out your breast in a restaurant. We try not to judge. But we do end up judging, silently watching and pulling our own child closer to our breast like a badge of honor. It’s those subtle digs that other moms make with babies, either passive aggressively or openly- natural labor, c-sections aren’t really giving birth, if you’re not breastfeeding you’re really just lazy/not trying hard enough/you don’t like your old child enough to give them the best, going back to work not because you have to but because you want to means you can’t be a good nurturer.

The choices we make are not indicative of the love we have for our child.  So why do we (or at least me) feel like society tells us this stuff matters?  As our children grow, those pressures never stop.  We are our own worst critic, with the mom guilt, but we feel it externally, too.
I’m not sure what I’m going to do. I still have that wholesale club membership (because, diapers). I’m waiting for my pump to be approved through insurance. I bought some nursing bras. I’m also going to ask what my company policy is about shipping breast milk home when I travel. And, I’ve calculated the price of formula for a year. I’m overwhelmed by all of it.
Maybe this time around will be different. Now I know about PPD/PPA, D-MER, and I have solid proof that giving my child formula doesn’t make them any better or worse off than any other kid.  Or, maybe I’ll finally take my own advice and do what is best, no matter what the answer is.

*picture in this post is from Pregnant Chicken’s Instagram account, and sums up my feelings until my daughter was about four months old.
 

Traditionally, October has not been the best month. Both my grandmother and grandfather died in October, along with my son five years ago. Some days it seems like an eternity since his passing, and other times it seems like it was last week.

I told myself I’d never work on his birthday. I don’t work on Elise’s birthday, so why would I work on his? This year is different. I’m working.

One, I need the distraction. Two, my co-workers are supportive. Three, I need normalcy this year. Four, last year I witnessed a horrible car accident on October 16th that crosses my mind every time I travel through that intersection (almost daily).

Another reason, and probably the biggest- I need to watch the time I’m taking off work before our new baby arrives. I need to use my precious vacation time for maternity leave, and then I need to come back to work knowing those days I’ll be home with sick kids are inevitable. With an 8 week leave, I will feel it in my pocketbook and my PTO bank, sadly.

Hoping Hank will realize all of it this time around. Hope he knows we still will have cupcakes and sing, and still light a candle. Hope he is ok with me taking 8 hours and paying it forward to his soon to be born sibling. I hope he gets the hope.

As we begin the long, slow, arduous effort that is packing up to sell your house, I’m opening boxes and tubs that I haven’t seen in years.  There is that glass amaryllis build forcer!  And look, over there!  It’s that Christmas wreath I thought I trashed.  

If you know me by now, you probably know the hardest part- these bins in the attic.  I went through the baby bins briefly, just before Elise was born, and took out all of the unisex clothing.  I didn’t touch anything with tags.  Those bins were never opened.

I literally pulled the tape off that wound this week, opening up lids of memories I’ve tucked away.  They’re not his clothes, they never were.  He never wore them.  They were bought for him and he never used them, just like he had a life in my mind that he will never get the chance to live.  

I wanted to take those clothes with us to the new house, not in case of another child (which by choice there won’t be), but because I have so few things that belonged to Henry.  I stopped myself, though, as my husband told me that they weren’t ever his. He didn’t say this in a get-over-it way, but in a gentle way.  He helped me say goodbye to these things that to some seem so insignificant but to me meant so much.

Not sure what I’m doing with his clothes.  I’m thinking of donating them to women who have little boy rainbow babies, or consigning them and tucking the money away for Elise’s piggy bank, or a Hank’s Hope donation.  I am no longer grasping at everything I can but holding tighter to things with more meaning, and that is a big step in my grief process.

Our new home won’t have had a room ready for my baby that never left the hospital.  I’m bittersweet about leaving these walls behind.  This is where I prepped and prepared, cried and screamed, and then finally brought home a tiny baby girl and went through every emotion on the postpartum spectrum.  

I’ve written before about how memories for me are tied to places, and it’s hard for me to leave some things behind.  Funny enough,  I’m ready to leave this house, and I’m ok with taking the memories.  I still can’t do that to the Avalon house, but I can now.  I’m ready to pack and move.

I had Elise’s conference this week.  Let me set the scene.  She’s two (almost three).  This is a two year old program.  This is a program that is designed to enhance social skills.  This is to help sharing, engaging play with others, and learning the very basics of being a friend.

I sat down at the table with Elise’s evaluation in front of me.  I couldn’t help it- my eyes immediately scanned down the row of numbers.  On a three scale, with three being Developing Appropriatey, two being Emerging, and one being Needs Growth, I laser focused right in on those twos.  And that one.

She’s two.  She’s learning.  It’s good for her to have room for improvement, right?  It’s not like I was expecting all threes.  I was expecting that one.  But a two?  A few twos?
We walked out of the conference.  My husband turns to me and says “I think that was so spot on.  They really know her!  I’m really impressed!.”  I didn’t say much.  My heart was racing.

In these few days after the conference (which I may remind you again, she is two, this is preschool, these are not the SATs, we do not live in NYC, and she adores school), I have watched those twos.  School is right.

Does Elise have trouble asking for help?  Yep.  Does she sometimes have trouble initiating play with others?  Yes.  Are all of those other twos pretty accurate?  Sure are.

It’s hard for a parent for someone else (even someone who really knows your child) to tell you that your kid isn’t perfect.  I’m imagining parents who work so hard with their children to get them to develop appropriately or even into the emerging category, and the frustration and stress that must come out.

As a parent, we can do everything right and our children will still be a one, two, or three, always.  Aren’t we as adults?  Show me a person with straight threes.  That person doesn’t exist. 

We are working on that one that she got, and working hard.  Those twos will develop, and those threes will get stronger, just in time for a new set of challenges.  If there is no challenge or nothing new to learn, where is the incentive to grow?

I am very appreciative to my preschool for not only knowing my daughter (accurately), but helping an anxious, perfectionist parent see that all threes add up to nothing.  I’m grateful for the unbiased eyes to gently show me that perfect doesn’t exist, and if it did, then life would narrow a bit.  I’m also grateful to my daughter, for ALL of her numbers on paper.  She is her own person, controls her own independent mind, and has a loving spirit.  Those things will always count as being off the charts for me.

I was thinking this morning in the shower (as we all do).  I was thinking about the media, and the general coverage of things, and how many news channels there are, and how many different ways there are to get information besides television.
Some people are self professed Facebook creepers.  They never post, they rarely comment.  If they want to comment they will text you their comment.

 

Others are oversharers.  I’ve seen (not kidding) women announcing where they are in their monthly cycle, people posting a positive pregnancy test with urine visible on the stick, women (and men) getting plaster molds of parts of their bodies, and stained laundry.

I share a lot of my life.  A lot.  Part of it is because I am proud of my family, my accomplishments, and myself.  I know that in those moments when I don’t feel so great about myself, it’s ok, too.  It’s all part of who I am.  I am comfortable sharing that.  I’m neither a creeper or a period poster.  I think I fall somewhere in between.

There are things I’ve never shared publicly.  Some personal health issues, a scare when Elise was a few weeks old, and pictures of Hank.  Outside of my parents and husband, only my best friend has seen him.  These are things I keep private.  You won’t find me delving into details on Facebook.

I’ve seen the Broadway musical Cats a few times as a child. According to the story, cats have three names- one everyone knows, one only cats know, and one only they know. Even animals (or at least great playwrights) know it’s important to keep something tucked in your heart.

It’s ok if you want to share whatever it is that you want to share. That’s the beauty of social media, and online news, and how we live in a world of 24/7 coverage of just about everything and everyone.  While you won’t find me doing naked maternity pictures with strategically placed scarves over myself, if that’s you’re thing, then go for it.  I just hope that there is something else that you keep private (and I’m not talking about what’s under the scarf).  

I admire my friend Jenny in a lot of ways for a lot of reasons.  Mainly, she’s one of the most positive people I know.  She’s not just one of those annoyingly upbeat people who repeats things like “it’ll all be ok!!!” over and over.  She’s talked to me about her own challenges and the steps she’s taken to overcome them, and then finds the silver lining.

Her post on Facebook this morning was a good one.  Amidst all of the resolution setting, mimosa pics, and Mariah Carey memes, she wrote this:
Instead of resolutions I’m doing a series of challenges this year. The first one, first day is about posting something you are proud of. And there is so much in 2016 that I accomplished in a crackpot year. It was a bad year for many but if you’re reading this…. well, like me, you survived! Now it’s time to thrive. Cheers to 2017….. ?!!

It got me thinking…. because who doesn’t love a good challenge?
What did I do in 2016 that I’m proud of?
1.  I walked away from a friendship where I wasn’t happy.  2.  I went through the roughest point I’ve had in my marriage.  3.  I got a new position at work that seems custom made for me and my personality. 4.  Hank’s Hope is growing.  5.  My daughter.  6.  I lost close to 50lbs and am so much healthier, physically.  7.  I absorbed world tragedies and tried to do my part to raise awareness, spend time, or make a donation.  8.  I made some great new friendships.  9. I explored new cities on my own.  10. I felt confident for the first time in a very long time.

The last time Jenny and I were together, she suggested we all take a picture of each other.  My friend V and I (and Jenny) had just rolled out out of bed and walked a few miles.  Think no makeup, rough hair, you get the idea.  We had just talked, though, about how we need to accept who we are and celebrate it, instead of waiting for the perfect moment with the perfect picture to show everyone the finished product.  The real shot is often the best one.  

Jenny, can’t wait for your next challenge!