Friday, November 22, 2019

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!

Tuesday, November 19, 2019

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.

Sunday, November 17, 2019

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." " 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, 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.

Saturday, November 16, 2019

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

Friday, November 15, 2019

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!

Wednesday, November 13, 2019

The Hot Mess Express Has Left the Station

As many people know, this is the time of year I swing my grief door wide-open. I celebrate an amazingly perfect life and a heartbreakingly perfect death. Tomorrow I will celebrate Hart's birthday. It is one of my favorite days of the year. 15 years ago, November 15 wasn't expected to be a happy day for us, but it turned into the most joyful of days.

Today, however, I am on The Hot Mess Express and am just going to lean into it. That isn't my natural tendency, but I've realized that sometimes it's cathartic to focus on the ugly and get it all out at once-it prevents tarnish from building up on the beautiful parts of grief.
So, today, I wallow in my grief.  Today, there is extra weight in the ever-present emptiness of my arms. Today, my heart feels shriveled up. Today, my soul is wilted. Today, my love feels completely inadequate. Today, I feel like nothingness. Today, I feel consumed by gravity. Today, I feel unworthy of grace. Today, I feel numb. Today, I feel everything. Today, I don't see joy. Today, I cry. Today, I feel like life is too short. Today, I feel like life is too long. Today, I am exhausted. Today, I cannot sleep. Today, I cannot breathe. Today, I cannot eat.  Today, I will not allow light in the darkness. Today, I see only what we've missed. Today, I focus on what might have been. Today, life is not fair. Today, is not okay. Today, I am okay. Today, I miss my son.
Everyday I miss my son.

Tuesday, November 12, 2019

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. 
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)


Monday, November 11, 2019

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 26th.

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! 

Saturday, November 9, 2019

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.