A Love Letter to Love

I must admit to being overwhelmed by nostalgia these days. Autumn, Thanksgiving, Hart-all come together to make me wistful for the past and fiercely aware of the ephemeral nature of days, seasons, and life. I long to have all my loves here with me, all the time (in other rooms maybe, but definitely under one roof 😉).  But thinking about and pining for the people I love fills me with gratitude for those who love them too.

There is no better feeling than knowing that someone else sees and appreciates the special that I see in my children. Seeing someone look at one of my children with pure, unadulterated love makes my heart skip a beat. I am beyond grateful for those people. They are our family. They are love! It is such a gift to see others loving your children and I know other parents feel that way too-that there is no such thing as someone receiving too much love.

There are people, to whom I didn't give birth, who I love as though I did. There are friends who are family, not by blood, but by choice and I couldn't love them more. I am both awed and inspired by this love. It is true, the more love you give, the more you have to give.

My parenting goals have always been for my children to be kind, to act from love, and to love others well. My prayer is that they see those they love with Mama-like "love goggles" so they are availed of all that is special in that person and that they are seen the same way. I pray they don't miss it or settle for less. One day, (hopefully-natural order and all) they won't have their parents to look at them that way, and I would hate to think that there wasn't someone there to see and appreciate all that is special in them!

So today, I want to tell those I love, thank you for teaching me how to love, for making loving you so easy and so fulfilling. Thank you for allowing me to see what is special in you. And to all those who love us so well, thank you for that rare, amazing gift! Thank you to those who see something special in us that others may miss and thank you for allowing us not to have to settle for those who miss it!

But, sometimes, barista love is best!

Was It Worth It?

When I was about 8 1/2 months pregnant with Hart, I ask my friend, whose son had died when he was 16, what it feels like to lose a child.

She said, "I didn't know this kind of pain existed. It is bottomless. It is constant. This pain has no boundaries or limitations. It has no end."

I was quiet for a few minutes as I tried to work up the courage to ask the question I desperately needed the answer for, "Was it worth it? If you had to do it again, knowing you would only get 16 years, would you?"

"Absolutely, I would do it again if I only got one day."

Throughout Hart's life, I thought about this conversation often.
"Was it worth it? Absolutely, I would do it again if I only got one day," became sort of a mantra for me. I would repeat these words to myself as a way to refocus my thoughts when they began to spiral. This conversation brought me great comfort after he died and even today when I'm feeling especially lonely in my grief, I find great comfort in these words.

The Ridiculous, The Unexpected and A Liquor Store Parking Lot: An Anthology

On March 26, 2004, I received a phone call from a woman I knew,  Frenny, (not her real name 😉). I will euphemistically call her my frenemy, but in reality-Frenny wasn't even that. I was not at all fond of her and wasn't great at pretending otherwise. I'm ashamed to admit that my lack of enthusiasm and confusion at hearing from Frenny was probably audible. She quickly told me that God told her to call me to let me know everything was going to be all right. She said she had no idea what was going on with me or why God entrusted her to  make the call, but that He did and so she did. She continued, "I will be praying for you, but most importantly, God asked me to let you know that everything is going to be okay, great even. At times, it's going to feel like that's not possible, but it is. Trust Him." She said a quick prayer and hung up.

Now, I've got to tell you, God could have used any other person, any other person, to give me that message and I would have been happy to hear from them and behaved much more graciously. But, as it turns out, Frenny, was the perfect messenger. I didn't doubt what she said-there was no way she could have known what was going on (we wouldn't even know I was pregnant for a couple of months), and she wasn't close enough to get any "vibes" from me anyway. I would not have chosen to get a message from God through Frenny, but that's exactly what I got. I've thought of this call many times throughout the years and I always get chills. I am awed by this first peak at God's work through Hart's life and how very unprepared I was for it. It also serves as a good reminder for me to see God wherever He is revealed, which probably isn't where I'm looking.

I was extremely sick while I was pregnant with Hart. I became very skilled at vomit-drving, vomit-walking, vomit-sleeping, vomit-playtime-everything I did, I did while vomiting. (Unfortunately it's not a marketable skill, but I'm proud of it nonetheless.) I also became adept at gauging how much time until the actual regurgitation commenced. One morning, I was on the interstate and felt like I was about to get sick-but I knew I still had about 4 minutes. I took the first exit, drove to the nearest parking lot and was able to grab a bag and step out of my car before getting violently sick. (Because it was always full-throttle aggressive, rage puking.) When I was finished I looked up and realized I had an audience 😳 and was standing in front of a liquor store. It was 10 AM, I was visibly pregnant, and I'm sure my new friends thought I was just clearing some space for my next bender. I just didn't have the energy to try to explain, so I just started laughing, threw the bag in the trash, got in my car and drove away.

Ten days after Baby Hart died, our dog, Emerson died. I believe that if our story were a piece of fiction,  the editor would recommend removing "the dog dies" part because it is just too much-and they'd be right. It was too much-I was done! Fortunately, my sister, who was in the country (she was living in Beijing at the time) for Hart's funeral, sat up with him that night and was with him when he died.

Receptivity to Grace

There are days that I really struggle to be the person worthy of being asked to "authoritatively" speak about grace to a group of religious and medical professionals. I find that offering grace is something that I have to continually practice and consciously choose or I'll break the habit. I try to always remember that not extending grace is actually putting impatience, unkindness, or intolerance between me and another person, that it is allowing space for lack of compassion, understanding, or empathy to take hold. And that is not the person I want to be. 

Rereading what I said that day serves as a great reminder of what's actually important and puts things back in perspective when they get dislodged.

A Beautiful Hartbreak

On my way to Barnes & Noble to write the eulogy for my grandmother's memorial service, I stopped at Target to purchase a pregnancy test. They were on sale, which I took as a sign-of what? I'm not sure.

When I got to Barnes & Noble, I seriously contemplated conducting the test in the bookstore's restroom (I'm not very good at waiting), but the thought of Tiffani, the store's cafe' barista walking in on me, along with my desire to enjoy what what might be my final, (for awhile) caffeine-filled caramel latte convinced me that the privacy of my home was a much more desirable location!

Maybe it was the grief, maybe it was the caffeine, or maybe it was the desire to perform chemistry experiments in my bathroom, but my grandmother's eulogy came flowing out rather quickly and eloquently.

When I returned home, I ran upstairs to my bathroom to take the pregnancy test. As the positive line became clearly visible, delight and anxiety overwhelmed me. Suddenly, hormonally charged tears were burning my eyes and I began laughing. I was so excited, but the thought of raising 6 children seemed overwhelming.

I found John and out of a perverse joy, said those 4 little words designed to send a rush of adrenaline surging, "We need to talk." Of course the smile on my face along with the tear stains on my cheeks had him completely confused.

(John's response)

We decided to keep the exciting news to ourselves for a while.

The Tuesday before my grandmother's Saturday memorial service, I went to the doctor and she ran a blood test to confirm the pregnancy. On Wednesday the nurse called to tell me that my HCG (hormone) levels were low and that the pregnancy did not look viable, so she set out to schedule an ultrasound for the following week as they were already booked for Thursday and Friday. I told her that the thought of waiting almost a week was unbearable, especially given that I would spend the weekend saying good-bye to my beloved grandmother and asked her if they had any openings that day. Forty-five minutes later I was on the ultrasound table looking at a 15 week gestation baby! I was MUCH further along than I expected. And let me tell you, when you are prepared to see some tissue and are silently praying for a flicker of a heartbeat, being asked if you would like to know the sex of your baby is a bit of a shocker.

Lisa, the ultrasound technician, was a friend of ours and not just because we had bonded over countless ultrasound hours, but she was also a neighbor, so I thought nothing of it when the exam went on for a very long time. She then showed us one of a couple of anomalies she was seeing on the the screen. These "markers" indicated that I would need further testing. Then things became fuzzy and I only heard bits and pieces of what Lisa was telling us. "Everything is probably fine." "These things usually turn out to be nothing." "Amniocentesis." "Advanced maternal age." "...one in a million of something actually being wrong." I felt John holding my hand and brushing a tear away from my cheek.

We went to my grandmother's memorial service with more questions than answers.

(John's response)

The following Monday we met with the genetic counselor, Jennifer. She went through a litany of statistics and probabilities. Chances looked pretty slim that there could be anything wrong, but there was a need for further testing. Each test result we received, brought with it a higher chance that something was mortally wrong with our son.

On July 9, 2004 we got the phone call we had been anxiously awaiting and dreading. Jennifer, our amazing genetic counselor, told me that our son had full trisomy 18. I set the phone on the kitchen counter and walked out of the room, fortunately John picked it up, since Jennifer was still on the other end.

(John's response)

We went into fact gathering mode. We searched the internet, called my OB, our pediatrician, a neonatologist friend, and every other person we had ever met, and many we hadn't. The general consensus was that we should end the "non-viable" pregnancy. That was certainly an option, but in Indiana I only had 1 1/2 weeks to decide if that was the choice I wanted to pursue, and the one thing I knew for sure, was that wasn't enough time.

Jennifer, went to work finding out the laws in surrounding states, but by the time we learned the nuances of regulations in Ohio verses Michigan, we had decided to continue with the pregnancy for however long that may be. Chances were very slim that I would make it to term.

Journal entry from July 24, 2004 (A letter to my son)
The thought of looking into your face and justifying any decision is overwhelming. I long to look in your eyes and connect with you. Is that possible? I don't know. Will you ever take a breath? I'm not sure what to do. I'm also scared to look in your eyes, to hold you, to love you- but it's too late for that, I already love you. I feel like you are a gift from God and our family was chosen to be touched by your life-whatever that turns out to mean. I feel like we'll be okay, but what if we aren't? What if faith isn't enough to carry us through? I know I am unable to grasp the gravity of the grief I will experience upon your death, but I believe with all my heart that this is of God and He will make it not only okay but better than we could ever imagine. How will your brothers and sisters deal with your death? Your life? I can't risk their well being, but they also have strong faith. Do they know this is all of God? Do they feel His hand? Do they know He will catch them if they fall?

Journal entry from July 25, 2004
How am I ever going to deal with my baby's death when I am struggling so much through his life?

(John's response)

Early on I realized that baby Hart was a miracle. Not the obvious-You're healed- type of miracle- I never really felt like that was the plan, but I felt like his presence in our lives would bring many whispered miracles. One of the first things that happened was the freedom we felt after we accepted that there was nothing we could do, meaning we couldn't cure Hart, there was no cure. We couldn't even help him make it through the next day. At first the thought of this was very frustrating, but once we embraced that there really was absolutely nothing we could do, it enabled us to let go of our need to control the situation, and just be.

We did a lot of praying. We prayed for peace, we prayed for clarity, we prayed that our other babies would be okay and accepting, we prayed for the chance to hold our son and I prayed for God to, please, take away the sick in my stomach feeling that was becoming unbearable. It was leftover from waiting to hear results of tests and I couldn't stand it. I prayed and it was gone!

Apparently baby Hart didn't get the memo that he was supposed to be getting weaker and eventually fade away. Each doctor's appointment his heartbeat was strong and rhythmic and he was very active. As my pregnancy progressed, many of the "markers" that were apparent in early ultrasounds began to disappear and we began to have hope that Hart would be born alive. We continued to prepare for what is not possible to adequately prepare for, but held on to hope that we would maybe get a minute with our son before he passed away.

In September it became evident to others that I was pregnant and I started hear, "congratulations," and, "when are you due?" I had to practice saying thank you and giving my due date without going in to a litany of the real gift I was receiving. I quickly realized that it is not easy to convince the gal at Target that you are walking around experiencing God's glorious grace after you've said the words, "Actually my baby is going to die, but....no wait up, seriously, you want to hear this."

(John's response)

What would this miracle have looked like had we decided not to continue with my pregnancy? I don't know, but I do know there would have been one. People often assume that I am not pro-choice based on our decision. I'm not sure why I am so offended by this, but it's so important for me to let people know this was my choice. I don't know how things would have felt had I been "forced" to carry Hart without the choice, but I do know that I don't like to be bossed and the situation is too big to enter into without carefully, thoughtfully, prayerfully choosing to.

The Books, The Celebration and The Gratitude

Thank you to everyone who remembered Hart yesterday! I am grateful beyond expression to know people are remembering him or thinking of our sweet, baby Hart on this special day. To hear from people on his Birthday, fills my soul. Thank you to those of you who honored him by performing acts of love. I hope you will join me in trying to continue to make love the default.

Singing "Happy Birthday" (plus 2 behind the camera and 2 on FaceTime) 

Each year in honor of Hart's birthday we buy a book (or several) published during the year. There's always a debate about whether we should buy him a younger children's book or a book that would be age appropriate. We've never really settled on a solution, so, like most things in our lives, we're all over the place. I envision grandchildren at different ages choosing Hart's books to read, so we need books for various ages. But, I also imagine reading the books to Baby Hart, which leads me to younger book choices. This year we got three books-each for different ages, because...choices, and my inability to make them!

Last night, after a very late dinner (As in-usually in bed, for sure in pjs by now, late), we opened Hart's gifts and sang Happy Birthday. It wasn't our most vocally solid effort, but thanks to an 8 hour road trip and FaceTime, most of our heart was in the room and that was everything!

This year's books:
Finding Orion by John David Anderson
Who Did It First? 50 Scientists, Artists, and Mathematicians Who Revolutionized the World by Julie Leung, illustrated by Caitlin Kuhwald
Let the Pun Shine by Teo Zirinis

Celebrating With Acts of Love: Hart's Birthday!

Fifteen years ago, a beautiful baby boy fought his way into this world and against all odds spent the next 24 days making it a better place. Hart had a huge impact on so many lives. I say this, not pridefully, but as an awestruck witness. It is an unimaginable blessing to hear from so many people who have been forever touched by Hart’s brief, but perfect life. 

Fifteen years later, Hart continues to make an impact. Often I hear from people sharing ways that Hart has touched their life. I am humbled to be used as an agent for so many good things that come from Hart’s life. 

Holding and looking into the eyes of a newborn baby, you experience the most pure of loves. When you know that your time with that baby is limited, you begin to realize that that love actually resides in all of us. 

Today, in honor of Hart’s golden birthday, I am asking anyone who would like to celebrate with us choose love. Act from love, speak from love, and react from love. Start at love and end at love. Let love win.

Choose love over prejudice, anger, impatience, confusion, frustration, the desire to be right, or resentment. Show others grace, justice and mercy. Treat each other gently. Just LOVE-the rest will sort itself out. 

Perform an act of love or kindness. Bridge a divide. Swaddle them in kindness and understanding.

Today, see only the love inside them and act as if you know that your time with them is limited. Cherish and love others today the way we cherish and love Hart. Today, let love win.

Thank you for honoring our precious Hart and allowing me to share him with you!

The Soundtrack of my Soul-A Mixed Tape

While I was pregnant with Hart, I would go for long, aimless drives. I would turn the music up full blast and drive and drive, trying to outrun my thoughts. While I could never quite escape my introspection, the drives did bring some comfort. Maybe because, while the rest of my life was completely beyond my control, when I was driving, I was in control. So, when it came time to plan the post funeral reception line, I wanted to play the songs that had brought me comfort (or at least distraction). Here are a few of the songs that played as we thanked everyone who came to celebrate Hart's life.  

Accidentally in Love-Counting Crows

All For You-Sister Hazel

  Angel Mine-Cowboy Junkies 

Camera One-Josh Joplin Group

Everything Falls Apart-Dog's Eye View

Everywhere-Michelle Branch

Follow You Follow Me-Genesis

Fool in the Rain-Led Zeppelin

Hanging by a Moment-Lifehouse

Hear You Me-Jimmy Eat World

Hemorrhage (in my hands) (acoustic)-Fuel

I Bid You Goodnight-Aaron Neville

I Got You Babe-Sonny & Cher

Jesus Loves Me-Aaron Neville

Save Tonight-Eagle Eye Cherry

The Boys of Summer-The Ataris

This Little Light of Mine-James A Smith

You Are My Sunshine-Norman Blake

We let the moppets choose most of the songs for the funeral. 

Including:

Here I Am, Lord-Dan Shutte

I Danced in the Morning (Lord of the Dance)-Sydney Carter

Amazing Grace-John Newton

O Come, O Come Emmanuel-John Mason Neale (translated by)

What Child is This?-William Chatterton Dix

Warning: Cuteness Alert!

As I was sorting through pictures of Hart yesterday, these two pictures happened to fall out of the box next to each other. I hadn't noticed before, but he clearly had a favorite resting position. I can't even express how tickled I am by these sweet pictures! My heart, my Hart! (yeah, I know that's super cheesy, but that's my current state of mind! #sorrynotsorry)

                                                                                                                                                                      

Poignant, Humorous and Mostly Coherent

I’ve been rereading my journals from when I learned I was pregnant with Hart through about a year after he died. I love being able to read what was happening in our lives and how I felt.

There are a few things that, upon rereading, are really embarrassing-which explains why I destroyed all of my childhood journals every few years growing up-but I'm so happy I didn't get rid of these-even though:

1.    I left out a lot of context, so many of the entries don’t make sense

2.    My handwriting vacillates between typewriter neat to serial killer scrawl

3.    I was frequently terrified by my ineptitude 

4.    I was at peace often

5.    I really should just use one journal at a time!

Here are a few highlights:

August 2004-I can tell my friends feel bad telling me that they are pregnant or talking about their babies. It’s as if some cosmic calibrator only allows for a certain number of healthy babies and mine is the “sacrificial” sick baby. I feel so bad that they feel uncomfortable. It brings me so much happiness for anyone to have a baby. I pray that everyone experiences that joy if/as many times as they want to.

November 17, 2004-The look on (my oldest son’s best friend) Nick’s face when we brought Hart home was priceless.

He said, “What baby is that?”

“It’s our baby.”

“I thought your baby was supposed to die.”

“He was. Isn’t it awesome?”

December 18, 2004-Hart lived a complete life. His complete life. There’s never enough time. I kept thinking just one more day. But if he had lived 25 days, I would have wanted a 26^th.

December 25, 2004-Middle Daughter’s letter to Santa- Hi. How are you and Mrs. Claus? I’m doing all right. Do people in heaven get gifts from you?

Santa’s response-Heaven is God’s gift to us. There they celebrate Jesus’ birthday every day, so they have no need for anything from me.

Best. Santa. Ever.

December 31, 2004-Everyone says that each day gets better. Actually for me, day 23 is the worst one yet.

But my very favorite journal entry is from July 18, 2004: I am pregnant with a baby boy who suffers from Trisomy 18. There is no chance he will be born healthy and live a long/healthy life. He will likely die in utero before his due date. Or if He is born alive, he will die shortly after birth. I’ve requested privacy at this time. 

What the actual heck?!? I'm pretty sure that was in the official press release, but maybe it was just on my fan page.🤣 In my defense, I was on (pregnancy safe) strong painkillers for a spinal tumor. But seriously, what does that even mean? Every time I read it I am equally embarrassed and amused! 

Brotherly Love!

Toward the end of November in 2004, my middle son asked, "When is baby Hart going to be dead?"

"I don't know." I answered.

He then whispered to me, "I asked God to let Hart live with us forever."

"I did too," I confided.

You're Everywhere to Me

One day, soon after Hart died, the song Everywhere by Michelle Branch, came on the radio. Hearing it, I got chills. Suddenly it wasn't a romantic love song about unrequited love. It was a beautiful love song about losing a loved one. Any time I listen to this song, I am filled to overflowing with love and remembrance for sweet baby Hart.

Everywhere

Michelle Branch

Turn it inside out so I can see

The part of you that's driftin' over me

And when I wake you're, you're never there

And when I sleep you're, you're everywhere

You're everywhere

Just tell me how I got this far

Just tell me why you're here and who you are

'Cause every time I look, you're never there

And every time I sleep, you're always there

'Cause you're everywhere to me

And when I close my eyes, it's you I see

You're everything I know that makes me believe

I'm not alone

I'm not alone

I recognize the way you make me feel

It's hard to think that you might not be real

I sense it now, the water's getting deep

I try to wash the pain away from me

Away from me

'Cause you're everywhere to me

And when I close my eyes, it's you I see

You're everything I know that makes me believe

I'm not alone

I'm not alone

I'm not alone

Oh, whoa, whoa

And when I touch your hand

It's then I understand

The beauty that's within

It's now that we begin

You always light my way

There never comes a day

No matter where I go

I always feel you so

'Cause you're everywhere to me

And when I close my eyes, it's you I see

You're everything I know that makes me believe

I'm not alone

'Cause you're everywhere to me

And when I catch my breath, it's you I breathe

You're everything I know that makes me believe

I'm not alone

You're in everyone I see

So tell me

Do you see me?

I Am Raw and Vulnerable: Be Nice or Go Away

This is the tattoo I need to get...on my forehead!

They say that true character is revealed not by how you act when things are going well, but how you react when the bottom falls out. My bottom has fallen out, and I feel like most people who know me have seen my true character. At any rate, I’ve seldom been in a position to have to defend it, and it turns out, I am really bad at it.

I recently had someone question my character and my parenting. These two things define me, so it definitely cut me to my core. I know it wasn't really about me, but actually about their unwillingness to accept their own situation. Still it hurt, a lot.

During any other time of year, I would be hurt and rage-y over this, but during November I'm deflated. 

I know that no one's words can take away your character. I know that believing what is untrue does not make it true. I know that willful ignorance says nothing about me and everything about them, but still...my need to get through to them is overwhelming me.

We had a discussion, it made no difference to them, (of course) but it made me feel like a complete failure. How can you not convince someone who you are? How can someone be so unwilling to know the truth? How can someone question that your motivation is anything but love? Not that they made me doubt my character, parenting, or motivation, but I felt like I failed to persuade them and it has left me wilted.

The point is I just need people to leave the November me alone (for the record, the November me is actually all of November through mid-December). I can barely string a sentence together, let alone have a reasonable, thoughtful discussion about something with which I could not disagree with more.

Battles I’m fighting:                                       Battles I cannot fight:

Sending texts to the correct recipients           Anything else

Remembering to feed my family

Staying focused on ANYTHING 

Something pesky always seems to happen this time of year-my fragile time of year-I get sick (like blood infection sick), need surgery, or face some sort deeply emotional conflict. (Full disclosure, I'm not great at conflict any time of year.) I am vulnerable and raw and have realized some people are like sharks and can smell blood in the water. But seriously, can people please just save their ugly behavior for any other time of year? Or better yet, just keep it to themselves!

When First I Knew You

Baby Hart-when the ultrasound tech saw him, she said
he has those kissy lips that all of your kids have!

I didn't find out that I was expecting baby Hart until I was more than 3 months pregnant. (It's a long story...) Anyway, I just found this journal entry from soon after I found out that Hart had Trisomy 18.

The thought of looking into your face and justifying any decision is overwhelming. I long to look into your eyes and connect. Is that possible? I don't know. Will you be "born to Heaven"? or will you take a breath?

I don't know what to do. I'm also scared to look in your eyes, to hold you, to love you. But it is too late because I already love you.

What name suits you? How can we ever decide?

I don't know. I feel like you are a gift from God and our family has been chosen to be touched by your light.

I feel like we'll be okay, that our faith will carry us through.

I know I am unable to grasp the gravity of the grief I will experience upon your death, but I believe with all my heart that this is of God and He will make it not only okay, but better than we could ever imagine.

How will your brothers and sisters deal with your death? Your life? I can't risk their well-being. They also have a strong faith. Do they know this is all of God? Do they feel His hand in this? Do they know He will catch them if they fall?

And this entry from 4 days later:

I haven't been sleeping well, so my exhaustion exacerbates all of my emotions. All I want to do is sleep. 

How am I ever going to deal with my baby's death when I'm struggling so much through his (in utero) life?

Are John and I going to be okay? The stress of losing a child is devastating to a marriage and often ends in divorce. I think we'll be okay, but didn't all those other couples think the same thing?

My journals are filled with entries like these-stream of consciousness or endless questions. I'm so grateful that I have them. In my memories, I had so much conviction and confidence in all of our choices. In reality, I was terrified and unsure and was being held up solely by my faith, not only in God, but my faith in my family and friends. Strangely, that brings me so much comfort.

The Gift of Life

When we found out about Hart's chromosomal defect, we asked about organ donation. Because his trisomy 18 affected every cell, he was not a candidate for donation. Being a science girl, I pressed on-it felt very important. I asked if it was possible to donate tissue for research purposes. Fortunately, our outstanding genetic counselor was willing to research to see what we could do. To my surprise, there weren't many options, but The University of Miami was able to take a donation of brain tissue in order to further their research into chromosomal anomalies.

When it came time for the doctors to procure the tissue, we ran into a problem. They were unable to take tissue donations without an autopsy. Because it was so important to me, I became emphatic that if they needed to do an autopsy, then they should do an autopsy. I felt desperate to help other families. Hart's lovely doctor (who once even babysat for Hart ❤️) told me that we really didn't want to do that, but asked us to hold on for a bit. He came back a few minutes later and told us that it was taken care of. He had called to get permission to sign an affidavit confirming Hart's diagnosis instead. There would be no need for an autopsy and we could still donate!

Ten Ways to Support Those Who Are Grieving

I couldn't possibly list all the incredible things people did to support us during Hart's life and after he died. It humbles me to even begin to think about it. But based on my experience, I can suggest some ways others may be able to support those they love as they grieve.

1. Reach out to the bereaved. Even a text, email or phone call can make a world of difference. Knowing that people were thinking of us brought so much comfort.

2. Don't tell people that their loved one is "in a better place," or that, "they're no longer in pain".  If they believe that, they already know it. If not, it won't bring them comfort. The bottomline is that people want to be able to see, touch, hear, smell the person they've lost and they're envisioning their loved one from a time they were healthy and not in pain.

3. Follow their lead. If you pay attention, those who are grieving will likely serve as a guide to the best way to emotionally support them. Let them talk about their loved one. Memories are all they have, so to share them is to keep a part of the deceased alive. They don't get to make new memories, so even if you've heard a story 1000 times, just listen and let them bring their loved one to "life" for just a moment.

4. People who are grieving may stupid things, they may lash out, they may forget birthdays, holidays, important events in other people's lives (or their own). They may have a hard time celebrating anything. They may feel like the entire world has lost perspective and what is important to you seems trivial to them. Offer them grace over and over and over again. Know that it's not personal, that they are really doing the best they can. Somedays that's taking a step forward, and somedays it's trying desperately not to fall all the way back to where they started.

5. Look for ways to fill in gaps in their lives. People who are grieving are forgetful, distractible, preoccupied and often overlook even their basic needs. There is no respite from mourning. There's no escaping it. There's little room in a mourning brain for anything else. It is helpful to provide food (homemade meals or gift cards from restaurants or grocery stores that deliver),  to run errands, to pick up their children or take them to activities, or even to pick up their mail and take their garbage to the curb or mow their lawn.
       5. part 2- Saying, "If you need anything, just let me know," is such a kind, generous and sincere offer. I understand people often don't know how to help, but want to do something that will blanket the grieving with love. With a little effort, you will likely be able to find something that you can do to help. And when you find it, just do it.

6. Tell the griever that they don't need to send you a thank you note. Seriously, our child-life specialist told me that I didn't have to write thank you notes-and it was the greatest gift. It still hangs over my head a little bit that I didn't send thank you notes, but if others had told me this, it would have helped erase any guilt. The last thing people in mourning need is a task hanging over their heads. I know that it can be therapeutic to write thank you notes, and of course some people will write them anyway, but letting them off the hook is a wonderful gift.

7. Send them love, lots of it, often, especially after the initial period of mourning passes. After the funeral people go home and get on with their lives, because that's how life works-that's how it's supposed to work. But quick notes and small tokens sent over time can make a huge difference. It seemed like just when I needed it most, I would randomly get a card in the mail. Grief never ends. People never "get over" missing someone and to know that someone else is acknowledging that is so meaningful.

8. Even in a room full of people, mourning is lonely. Show up anyway. Be ready to listen or sit in silence. Even though mourning is a solo activity-having someone nearby is comforting and brings the mourner a feeling of security.
         8. part 2 Show up- unless, they want to be alone. Then respect their desire to be alone, because sometimes people need to be alone in order to recharge their batteries or to organize their thoughts. Sometimes being alone brings feelings of comfort and security.

9. Set up a network of support for your friend. The ability to be able to reach out with a simple text that says, "Today's a bad day," and receive immediate support is incredible. It's so helpful to have friends, who already know the backstory, who can meet your need, quickly, and without question.

10. Let your loved one express their many emotions when they need to. Know that their emotions can change on a dime. People can go from laughing to crying to shouting in anger within seconds. That's very normal and actually quite healthy. They don't expect you to fix anything, so don't try. You cannot fix it, you cannot take away their pain, you can only walk by their side and hold their hand and let them know they will not have to walk their grief journey alone.

Don't Squander Love

I am profoundly aware of how short life can be. A person's lifetime can be more than 100 years, but it can be as short as 24 days (or fewer). I'm still not a jump out of an airplane kinda girl, but I certainly have been affected by experiencing the brevity of life.

One manifestation of this is that I am quick to fall in love with people. I don't like people, I love people. If you're my friend, you're my family. If you're friends with my children, you're my children. It's not a conscious decision, it just is. Fortunately, I'm a pretty good judge of character, unfortunately, it makes it hard to navigate when there's a bump in the road.

Part of my "life is short" education includes a whole lot of grace for bumps in roads. Once you're in, it isn't easy fall out of our ring of love. But it does occasionally happen that the bump is actually a mountain that no amount of (my human limited) grace can transverse. This is hard for me to accept, because I genuinely believe that nothing is so big that it can't be worked out. I still believe that, but am learning (and trying to accept) that even if it can be resolved, sometimes it shouldn't be. I'm trying to understand that forgiveness doesn't necessarily have to include reconciliation-which is an equally important lesson to learn.

Knowing that time can be brief (and weirdly seems to move more quickly the older you get) has also "gifted" me with an impatience for trivialities and wasted-time. Especially in relationships-assuming things can wait until later can be a mistake-it's just not always true. The old adage, "never go to sleep angry," holds true. When you are lucky enough to be loved, you should treasure that and treat it like the precious gift it is.

When Hart was born, Steadfast Husband and I made a pact that we were going to enjoy whatever time we had with him without regrets. That we were going to do the very best we could and always remember that we did. And that if we dropped the ball, it was because our hands were full and that was okay. We were going to extend grace to each other and ourselves.  For the most part, that continues to be true.

But, unfortunately, as time passes, regrets are unearthed. I truly know that we did the best we could, but every once in a while, my mind wanders to a land filled with what ifs and why nots. It brings me immense comfort to know that Hart was literally held, snuggled or touched every minute of his life-because that was what was most important to us. How many people can say they were touched with love every moment of their lives? That is the balm that soothes any regret I expose.

But....I wish we had more pictures. I wish we had more video footage. I wish I would have been able to exhale just long enough to soak up the moments more. I realize that I was holding my breath while waiting for Hart to die which prevented me from being completely in these most precious moments. I wish I would have been more able to appreciate that life we had while we had it.

We were constantly surrounded by friends and family and, honestly, I can't completely remember who was there and when. I clearly remember feeling blanketed by love, but the faces attached to that love are blurry. I wish I would have shown the enormity of my gratitude for them more. My friends were remarkable. They anticipated our needs and took care of them. There were days that I was so exhausted I couldn't string a sentence together let alone remember to pick my daughter up from cheerleading. Knowing that my children were loved and well cared for was the greatest gift of all. Their gifts were so beyond comprehension that I feel like I couldn't have possibly expressed the magnitude of my gratitude. I'm still overwhelmed when I think of all the amazing, perfect things that they did for our family.

I wish I was more appreciative of how much my other children loved Hart. I wish I would have paid closer attention to the beauty of the love they showered on him. I wish that Hart was still here with us. It is that wish that brings me back from my revery of regret and reminds me how grateful I am for every minute of his life and of that, I have no regrets.

Good Places to Cry

In the early days of mourning Hart's death, people were continually suggesting "good places to cry." I was incredibly grateful for the sentiment and their desire to help. I have compiled a list of some of those suggestions here:

At Home:
     In the shower
     While listening to REALLY loud music
     In a closet
     Into a pillow
     During a sad movie
     On the back porch

At Work:
     In a bathroom (preferably on a different floor)
     Under your desk
     In an empty office
     In a stairwell

On the Go:
     In your car
     On a run
     In the rain
     In the dressing room of a department store
     At a museum
     In a movie theater
     On the subway (or any public transportation)
     In the ocean
     In an elevator
     In a book store
     In a plant shop
     In a coffee shop
     In a hospital
     In a chapel
     Anywhere if you're wearing sunglasses

Some people are pretty criers, I am NOT those people!

But actually, why are people encouraging others to hide when they need to express their emotions? We shouldn't be ashamed of crying. Holding in emotions creates a culture that hides grief. It sends the message that grief isn't palatable for others, so tamp it down, box it up, keep it inside-you're on your own. It reinforces the idea that we should feel shame at the possibility of shedding a tear in front of others. Crying is beautiful. It is cleansing. It opens the dam and lets the pain out. It represents deep emotions. It is so freeing when you allow all those emotions to roll away from you.

My advice is there is no such thing as a "good place to cry," you should cry wherever/whenever you want or need to-it's both empowering and liberating-no matter where you are.

The 15th-A Golden Birthday

The number 15 has been on my heart and in my head a lot lately. While running yesterday, I realized that two of the most important days in my life occurred on the 15th of the month. I married my amazing husband on July 15th and gave birth to sweet baby Hart on November 15th. You would think that for as many children as we have, we would have lots of double dates ;) but actually we don't. Each of our children has their own birth month and day-and I'm too lazy to figure out the statistical probability of that right now, but it feels unlikely. (Although my daughter and son-in-law began dating on the same day-that many years earlier-my husband and I started dating, but that just felt serendipitous.) Anyway, it never occurred to me until yesterday that two of the happiest days of my life fall on the 15th.

Knowing that Hart did not live a long life and that we knew that was going to be the situation, people are often surprised by how much I love to celebrate November 15th. I certainly get lots of concerned, "How are yous?" and "Are you okays?" each year. The thing is, what should have, tragically, been both his birth and death day, turned into a miraculous day that we could never have anticipated. We were told if he survived his birth, we would likely only have a few hours with him. We never imagined that we would be bringing Hart home, and we certainly could not have fathomed having, holding, loving him for almost a month. This was a gift far greater than I even dared to pray for, one, that even today, seems beyond my wildest dreams.

I have two vivid memories that set the foundation for this. The first is, about an hour after Hart was born, a nurse walked in to the delivery room and said, “Congratulations!” in authentic celebration of the moment. She was the first person to say that. To be fair, the delivery itself felt like a battle, and we were all still in shock that Hart was alive... living! The amazing delivery nurse had to keep stepping out of the room to cry (which I didn’t find out until much later), my incredible doctor was hyper-focused on my health and what the next steps were for Hart, and the rest of us were just dumbstruck! But I hold onto the memory of the sweet nurse who knew the perfect, right thing to say. My heart is steeped in this love.

The other memory is when it was time to take Hart home. I cried to my friend, Ceta, who also happened to be a neonatologist, that it wasn’t in the “plans” to take Hart home. I told her I didn’t know how I was going to do that or what to do when we got home. To say I was overwhelmed with the thought is a gross understatement. She said, “Erin, you’ve done this five times before. Do it just like that.” It was truly the exact, empowering thing I needed to hear. I was still terrified (and ill prepared-our infant car seat was in the attic and filthy. Fortunately, (and embarrassingly) my friend, Jenny climbed in my attic, cleaned it and brought it to the hospital). I am continually in awe of how blessed I am in my friends.

Because this November 15 would have been Hart's 15th birthday, his golden birthday, I've decided to honor him by doing 15 posts to celebrate the joyful heartache that is my love for Hart.