The Cottage Cheese

Clinging Tightly to My Love and Memories

2023-12-08T09:02:00.006-05:00

This morning, I woke up crying. I do every December 8th. Usually, it’s after a vivid dream of getting somewhere a moment too late or the inability to grasp something just out of reach. Last night I had a new version of a recent dream that Baby Girl was falling and her friend caught her. In last night’s dream, I was supposed to catch her and couldn’t get to her (fortunately for dream Baby Girl, her friend caught her again!) You don’t have to be a Freudian to interpret these dreams, but while my dreams may argue, I actually find so much peace and love in my sadness.

To be clear, I wish I hadn’t had to find the beauty in my grief. I miss the version of myself that I once was. That « before » me felt lighter, freer, expectant. Decisions and simple tasks didn’t feel hard or disproportionately weighty. I was naïve in so many ways, with boundless hope and unfettered joy. It didn’t occur to me to not put things off until tomorrow, because time was predictable and plentiful. Not that there weren’t hard times, disappointments and losses, only that I possessed the optimistic confidence that good always wins in the end. The shift isn’t one I think about often, but I do recognize it’s presence. It seems like boundaries and limits just appeared where once there were none—or maybe I finally saw the perimeters that were always there.

While these boundaries are limiting, I think there are some really amazing things that come from them. Often people who experience great loss live life with an eye on the fleetingness of it-they find an urgency to love more, celebrate bigger, try harder, show more compassion, forgive quicker, and linger a little longer. They also are more likely to limit time spent with people who drain them, are more selective with who they let into their circle, and deny access to those who chip away at their hard-faught joy.

So today, as I remember and cling tightly to all my love, I rest in the hope that we all can learn to live our lives a bit more urgently—because we simply do not know what time remains.

Love Will Find A Way

2023-11-11T11:20:00.004-05:00

It's the time of year when my grief bubbles to the surface. As always, I am caught off guard by just how viscerally it strikes. I feel it in my heart and body before I'm cognizant of the emptiness in my arms and the longing in my soul. Some years are harder than others, but this year has been different, not harder necessarily, but deeper, longer and more intentional.

I’m walking alongside my dear friend as she grieves the loss of her incredible son. It is such an honor when someone trusts you with their grief, allowing you to hold their person in your heart while you hold them in your arms. It is intimate and messy and beautiful and hard and big, overflowing with every emotion.

One of the most beautiful parts of sharing her journey is revisiting and honoring my own early grief. Experiencing loss from this perspective has helped me remember and revisit things from the first year after Hart died. I was so numb, terrified, heartbroken and desperately trying to keep from succumbing to the herculean strength of my grief, that much of the year remains just out of reach, blurry shadows of memories. But, although many details are fuzzy, the feeling of being cloaked in so much love-unimaginable, active love, grace, support and innumerable acts of kindness and thoughtful gestures-is etched in my soul.

I have loved thinking about the incredible people who showed up and climbed into the trenches with me, holding my hand, holding my heart, and holding me up. These loves let me ugly cry, uncontrollably laugh and then cry again. They allowed me sleep, or try, and stayed up with me when I couldn’t even close my eyes, they listened when I needed to talk and sat with me in silence when I couldn't-all in love and without judgement or (obvious) discomfort, these amazing friends walked with me as I found my way through another day. And there simply aren't words to define this kind of love.

How brave and loving it is to stand beside someone who has experienced what is arguably every parent's greatest fear. People are seldom taught how to talk about such an unimaginable loss, let alone, how to support someone who has experienced it. It is scary, confusing and difficult to navigate, and trying to anticipate what someone needs is an exercise in futility, but the truth is, it feels that way for the person grieving too, and the best, most love-rooted thing you can do is show up and keep showing up as they travel this mapless journey.

Grief is tricky. It's full and empty. It's timed and timeless. It's joy and pain. It's fear and bravery. It's awesome and awful. It's fluid and unyielding. It shreds your heart to pieces and causes it to grow ten-fold. It's everything and nothing.

Grief is an ever-moving target and it is hard and raw and lonely-so, so lonely and every bit as terrible as you can imagine-more, actually. I've discovered you never miss your child less and that you can cry just as hard 19 years after they die as you did 19 days after. But sometimes, just knowing someone is there beside you is the only thing that gets you through until you find your footing again.

Changing Seasons of Grief

2023-09-30T11:57:00.001-04:00

This time of year is always hard for me. It’s the season of a complicated dance between beautiful grief and difficult memories. The past couple of weeks in Virginia have felt like a typical autumn in Indiana and it has stirred visceral memories and acute longing. Some years are harder than others, but I can't remember a year that felt so like the year Hart was born and died. It feels strange and familiar-a sort of déjà vu, making the discombobulation of grief time even more disorienting.

I am so grateful for the privilege of loving and missing my sweet Hart, but longing for something that will never be, that, suddenly, weirdly, feels so near I swear I see a shadow, is tough.

My 2023 New Year's resolution was to go out more often, spend more time with my friends and make those relationships a priority. Staying cozy at home, in my pjs, is my default, so I had to be resolute in my goals. And I am so much better for it.

As I enter my grief season I know I will struggle to against my inclination to isolate and get lost in my grief. I know my tendency to decline invitations, to go inward, and to walk alone with this beautiful ache is strong, but I know my people's ability to reach in and pull me out when I start to withdraw is stronger.

This year has taught me that, while the pain doesn’t lessen when others travel with me, the incredible souls I am blessed to call friends, hold me when the weight of things is too much to bear and that makes the journey a little easier, enabling me to find the beauty along the way. And for that unbelievable, incalculable gift-there are simply no words big enough to express my gratitude and love.

Shaped by Grief

2023-06-09T10:23:00.003-04:00

Three weeks ago today, a glorious and gorgeous light was taken from this world entirely too soon. This young man was really just starting his life and those of us who loved him like our own, were shocked and devasted by his sudden and unexpected death. It was an honor to watch him grow from a little boy through his tweens and teens and finally into a young man starting to make his mark on the world. As a part of our circle, he had more "mamas" than he knew what to do with, but there were a few of us who were fortunate to spend more time with him and felt even more of a maternal draw towards him. After news of his death, a group of us "mamas" came together as we processed and grieved and cried and raged and tried to wrap our heads around this enormous and shocking void. Unbelievably, five days (five days!) later, one of these dear "mamas" also lost her son. When I say unbelievably, I mean that in the very fullness of that word. My dear friend lost her beautiful son, Luke, suddenly and unexpectedly. Luke was such an amazing young man, also just starting out into adulthood. He loved so fully and completely. His light so bright others could find their way out of the darkness. And it is utterly unbelievable. When I heard about Luke, I rushed to my friend's home and wrapped her in my arms, trying to take away the tragic reality. She asked me if it ever gets better, and I said, "I'm not going to lie to you, it doesn't get better, but you will find a way." In my experience, you never miss your child less, but you somehow find a way to live with a hole in your soul. For these past three weeks many of us have been walking around in a fog. We have surrounded my friend, Luke's sister, his beloved partner, and their family and friends with love, support and service. We have held their hands and held them up. Encouraged them to eat, sleep, and stay hydrated. Tended to as many of their day to day needs as possible. We have done what you do wnen someone you love is in unimaginable pain, we loved them with all we have to offer. And it is hard. It is so, so hard to watch someone ache to their very core. After Hart died, I remember people telling me they felt honored to be by our side as we grieved. Now I know what they meant. It is such an honor, an intimite, raw, personal walk of love. I would be lying if I said this hasn't triggered some really big feelings and unearthed some memories that had been deeply buried. I'm trying hard not to project or insert myself into her grief, but have offered my friend some of my experiences, my mistakes, things I feel I got right (or right for me, anyway), "permission' to feel any and all ways, to change her mind, to not change her mind, to make decisions, to not have to make decisions. I told her that I know there are things that bring comfort to some and deepen despear for others. So much of grief navigation is trial and error and it is constantly changing. What worked yesterday may not work today. Everyone who has walked this walk knows that grief is an individual, solitary, neverending act. It clings to every part of your life, sometimes as a hardly noticible shadow, sometimes as a giant obstacle blocking your path. There are some similarities, "universal truths," of course, but every experience is unique, nonlinear and life-long. The thing is you want people to understand, you want them to say the words that will ease the pain, to offer grace and healing. You want them to know how losing a child impacts every aspect of your life, every decision, every action. You want them to know you are absolutly doing the best you can, even when it looks like a complete mess. You want everyone to understand the weight of life, because it is so heavy and oh so brief-so, so brief. But really, you don't want anyone to understand or experience the unfathomable anguish of losing a part of your soul and you know there is no other way to understand. It's interesting how grief creeps in without invitation, without regard for time or space and before, even, thought can form. In the past few days I've wiped my cheek countless times to find tears I didn't even know I had shed. I've been surprised how fresh and raw grief can feel-even 18 years later. In an alternate reality, Hart should be graduating high school this spring, but instead I feel like it was yesterday that we were saying goodbye. I'm not sure how much of this fresh grief is because I keep thinking of what could be-what should be, and how much has been stirred by the heartbreaking loss of these two amazing young men. It doesn't really matter, it is part of my journey, one that I cannot avoid or protect myself from, but honestly I wouldn't want to, because the joy is always worth the pain.

DearHart

2022-12-07T19:49:00.006-05:00

Eighteen years ago, our beautiful, beautiful baby boy died. When I talk about Hart’s death I try to articulate what a beautiful experience it was. It’s hard to believe through the most heart-shattering occurrence so much beauty grew. But it is in those shattered pieces that true beauty lies.

Usually when someone dies, our emotions are complicated. We are sad. We miss them. We long for them. We relish in their imprint on our lives. We celebrate their accomplishments. We love them. But, often, there are other emotions as well. We have regrets over cross words, hurt feelings, unfinished conversations. We long for do-overs. We chastise ourselves for the times we could have done better, been better. These are all perfectly normal feelings, the expected path that grief takes. All of these things that wove the fabric of our relationship while the person was alive continue to drive our grief for them.

The thing is, Hart wasn't tethered to any complications. He was only love. He was in the arms of someone who loved him every minute of his life (every minute). Because we knew our time with him was short, we relished in each moment. We were able to (for the most part) put our lives on hold while we celebrated Hart's very existence, for the entirety of his existence. His whole life carried the magic of Christmas morning. We loved him and continue to love him, so fiercely and so purely.

The gift of knowing his life would be so short helped us prepare (or at least think we were prepared) for his death. We were blessed by incredible people who shared vital information and walked with us every step of the way. We knew what to expect physically. We knew what we should do during and immediately after his death in order to bring us comfort later. We were told how to talk to our other children and how to involve them in his death. We gathered every piece of information that we could in order to lay a solid foundation for our grief.

The only problem was, of course, you cannot prepare your heart. As Hart died (peacefully, painlessly and beautifully) I kept thinking, "Okay, this is it. This is what you've been preparing for. This really sucks, but you're prepared. You've got this." I went over my mental checklist countless times. As I type this, I realize how completely asinine that is, but I definitely thought I could prepare myself for his death. We had about 15 hours from the time we realized the end was near until he took his last breath. We went to the in-house hospice located at the local children's hospital and were drenched in the love our family, friends and caregivers (who had become family).

I was holding Hart, inhaling his sweet baby smell like a junky about to be cut off from her source. Believing if I inhaled enough, his smell would be with me forever. When he died I let out an achingly primal groan. I felt it bubbling up inside me, but was so disconnected from the sound, I couldn't quite figure out where it was coming from.

People often say that when they lose someone, it leaves a hole in their heart. That's not what it feels like to me. I feel like part of my heart is now made of crystal. It is beautifully filled with all of my love for Hart, nothing can diminish it, but it also can't grow like the rest of my heart. There are no new memories to make, no new strands to weave into our relationship, no need for that part of my heart to be able to expand, but it is solid and beautiful and light shines through it and reflects in me.

They shall grow not old, as we that are left grow old:

Age shall not weary them, nor the years condemn.

At the going down of the sun and in the morning,

We will remember them.

-Laurence Binyon

"The deeper that sorrow carves

into your being, the more joy

you can contain"

-Khalil Gibran

The Long of It

2022-11-30T17:08:00.006-05:00

I keep telling myself, everything is going to be fine. I’m sure she’s fine. Then the anxiety creeps in, softly at first, but quickly crescendoing into a cacophony of fears. I take a walk, go for a run, take a bath. Calm returns. I know it’s absurd. I know chances are, it's nothing…. and still, before long, the cycle begins again.

This time of year I am acutely aware of life and death. I know, even though we shouldn’t, sometimes parents have to bury their children. Would I be this emotional any other time of year? I don’t really know, but I do know, I’m really raw this time of year and unfortunately, it's this time of year.

On top of navigating Baby Girl’s concussion protocols and managing the treatments, appointments, and medications, worrying over the results of the looming MRI has become the tipping point for all of us.

The concussed version of Baby Girl is not my favorite version. All the symptoms she’s experiencing add up to a grumpy, less patient, indecisive, weighed down version of the girl I know. The less like herself she becomes, she becomes even less like herself and the more depressed it makes her. The neurologist told her, “Of course you’re depressed, the concussion is preventing you from being you.” (Narrator-“It was precisely at this moment the mother fell in love with the compassionate, genius who is going to help her baby heal.”)

Anyway, I could deal with not best version of BG better if I didn't have the nagging unknown of the other thing going on in her brain making me grumpy, less patient, indecisive, and weighed down. It could be nothing, chances are it's nothing. I’m an impatient, information gatherer-I can’t help but search for information. I’ve read more medical papers over the last few days than I can count (and am convinced the ones that you can only “access through your institution” are where the real answers lie), have read many anecdotal cases, and have watched countless brain-side (is that a thing?) TikToks. It’s not great-I know it’s not great. But I can't help myself, I've got to know more. I don’t want to know, but I don’t not want to know. I need to know all the possibilities.

I keep telling myself odds are in our favor, odds are it’s nothing, of course it’s nothing. But see, that’s what’s tripping me up. I’ve played those odds before. I’ve lost to those odds. Is that why I can’t pull myself together? Is that why I keep searching and reading and watching? When you know, first hand, the other side of the statistics, can you never put faith in "odds” even when they’re in your favor?

In the mean time, lack of sleep is leading to frayed nerves, short tempers and regretful text messaging-including, but sadly, not limited to, an embarrassing voice text of me singing my own versions of “Chu-Chi Face” (from Chitty Chitty Bang Bang), “Hush Little Coco, Don’t Be Mad,” and “Dear Winter” (AJR) to calm her disrupted, stormy sleep (another concussion symptom), on Baby Girls phone, to Baby Girl’s friend, which I thought I deleted, but sent instead. Lessons learned-sleep medicine can be tricky, don’t leave phones in the middle of the bed, don’t ever try to delete, send, read texts without your glasses.

While we wait, I will continue to pray, and read and run and bathe, take pictures of my sleeping Baby Girl, hold her hand, try to keep myself from doom scrolling and place my faith in hope and maybe the odds.

Bandwidth

2022-11-12T12:48:00.000-05:00

I’m out of bandwidth. I just am. I’ve drained all my reserves and even my secret, emergency stash is depleted. On the one hand, I’m glad I realize this, on the other hand, it makes me feel like I’m failing.

I guess it’s an unrecognized privilege that I’m usually able to indulge in celebrating, honoring, remembering and missing Hart this time of year. It takes a lot out of me and brings me every conceivable emotion, but the emotions settle in peace, and that rights my soul.

But right now I feel like my emotions are a moving target I can’t quite hone in on, continually moving just beyond all the other, more pressing, responsibilities I need to focus on. And selfishly, I wish I could pause everything else to refill my tank and indulge in my feelings.

Baby Girl (BG) is suffering from the effects of a concussion. Which means lots of doctors appointments and countless PT sessions, endless headaches, confusion and nonstop grumpiness. As I try to help her feel better and (un)gently guide her as she navigates school work, cheer and relationships all while in a perpetual state of grumpy annoyance (both of us), I am reminded that when I’m out of bandwidth, I am of no help to others or myself.

Today we are heading to BG’s teacher’s memorial service. I know this would be terribly difficult under any circumstances, but everything is exacerbated . The dread and fear I’m feeling is just…so much. Too much. While I know neither of us are as emotionally armed as I’d like us to be, I also know how important it is for her to be able to honor and remember her beloved teacher.

So, today, I’m praying for peace, strength, wisdom and courage. I’m also praying that I don’t word vomit (or real vomit), run out of tissues, nervous laugh or embarrass myself, Baby Girl or anyone else.

And tomorrow…

Grief is the Price We Pay for Love

2022-11-07T21:34:00.003-05:00

Today, I was working on a project, and getting distractedly rage-y thinking about people who throw hate and prejudice around like shrapnel, (agitated and impatient are my default emotions this time of year-but to be fair, hate and prejudice make me rage-y all year) when I was suddenly overwhelmed by these feelings and burst into tears. Because grief sometimes disguises itself when it brushes against me, it can take a beat before I register its presence. When I sorted through the muck in my mind, I found the center of my meltdown—my Hart love surrounded by my heartache.

I'm surprised by how intrinsic grief is. It is without thought or reason, yet somewhere deep inside, suddenly, every piece of my being becomes saturated with a longing for my baby boy.

On November 15, 2022, Hart would be turning 18. As always, it feels like both yesterday and a lifetime ago that he was here, with me, in my arms. But I've learned grief and time don't exist on the same plane.

People often ask me, when I think of Hart, how I do I envision him. Is it at the age he would be now or as we knew him? My heart almost bursts with their desire to find a deeper understanding and the enormous empathy they show our family. The truth is, it depends. When I'm remembering Hart, my memories are of him as he was when he was with us. I have a mental Rolodex of memories from our time together, and pull them out to examine and enjoy. When I indulge in magical thinking, it is the age Hart would be now. I try to envision what he would look like today. A strong family resemblance runs through all our children, so it's pretty easy to envision what Hart would look like at every age.

I think about what he would be doing now— how he would change the dynamic of our family, what his friends would be like, what his interests would be. Would he get rage-y at hate and prejudice? Would he be loud and boisterous or quiet and reserved? I wonder if he would enjoy school and love to learn. Would he write? Would he be artistic? Musical? Would he love math? Science? History? Language? Every year on the first day of school, I envision him climbing up the stairs of a school bus and I wonder…

Hart is ever present in our lives. We miss him terribly, everyday. But our love for him is greater than our grief. I love the quote by E. A. Bucchianari, “So it’s true, when all is said and done, grief is the price we pay for love.”

The Grieving Season

2022-11-06T18:34:00.000-05:00

It’s my grieving season. This time of year always feels heavy, sentimental, reflective, important. Some years the feelings creep in slowly and unevenly. Some years, like a wrecking ball, fast and all at once. But always the grief precedes thought, the feelings come before the realization. This year was a creeping year until it wasn’t. Seemingly out of the blue, the ball dropped.

It has been a year filled with trying to support my children as they navigate grief. My beloved daughter-in-law lost her mother earlier in the year and shortly after, she and Oldest Son suffered a devastating pregnancy loss. Oldest Daughter lost a treasured friend, mentor and purveyor of unconditional love and support. And Baby Girl lost a beloved teacher and fierce advocate. As I held hands and hearts, cried and dried tears, I worked to not allow my grief to seep into theirs.

While it felt like the right and obvious thing to do, I realized it wasn’t the selfless act of love I believed it to be. Trying to dodge my grief was not only ineffective, it took so much effort, I was distracted from being who my children needed me to be. I was reminded that I can’t predict what will open the spigot of grief, but I can make plans for coping and manage expectations.

When my oldest daughter lost her beloved friend, someone dear to all of us, I knew I needed to be there for her, and wanted to be by her side as we honored the memory of someone who loved her like his own.

But I was scared. Scared that I wouldn’t be able to find the words to comfort her. Scared that I would be inappropriately emotional, unemotional or completely disconnected. Scared that I would myopically, hyper-focus on my grief or deny my grief altogether.

I honestly didn’t know how I would feel and react, but I did know not acknowledging these feelings would be a mistake. Before the memorial, I told her, “I’m here to support you, but grief comes before thought and I need you to know that I don’t know when and how it will manifest. I may not be 100% who you need me to be, when you need it, but that’s my goal. And I’m here for you and with you, and I always will be.”

And just saying those words aloud helped. I reclaimed a little power from grief's grasp and faced the fear of disappointing my girl. It was very liberating. The memorial service was beautiful and moving and filled with so much love. And the ability to be fully present felt so much better than playing hide and seek with grief.

I will never grieve the way I once did. I'm incapable of it. I don’t have the same tools I once had, but I've gained some new ones. In some ways, I feel better prepared, in some ways just differently equipped. But I continue to strive to learn more and do better--for myself, but more importantly for those I love.

Grief is fickle. Grief is hard. Grief is ever-changing. Grief never ends. Everyone’s grief is unique. The only universal truth I’ve found in grief is doesn't wait. So, this year, as my grief season begins, I'm remembering that grief will lead, but I don't have to follow blindly.

REMEMBERING HART

2020-12-08T12:10:00.004-05:00

Today is the day, the day I dread all year. It comes now as it did then, expectedly unexpected.

I remember every detail about that day, or every detail of the reassembled shards that I've pieced together from memories that were shattered by grief. I'm sure there are things I’ve forgotten and things I misremember, but the feelings of my memories come every December 8 as acutely as they did on that day.

I remember it was late at night. Our other children were in bed and Steadfast Husband and I were in the family room "watching tv" which during Hart’s life meant the tv was on and we were actually watching our sweet baby.

I remember SH was holding Hart and I was watching as my baby began to turn blue. Instinctively, I grabbed him, yelled at SH (because fear = irrational behavior) and started vigorously rubbing Hart’s back. I can’t remember who we called, but I remember deciding to take him to the hospice room at the children’s hospital to die rather than foisting an unshakable memory onto our other children by holding vigil at home.

I remember rushing to the car but stopping short as we contemplated putting Hart in his car seat. The thought of him dying alone strapped in his car seat was unbearable, but I am a rule follower by nature, so it took me a minute (and my husband pointing out the reason for car seats is to save lives and that didn’t actually apply here) to make the obvious choice.

I have no memory of making our way to the hospital, but I remember the amazing Hospice doctor who greeted us. He talked us through what would unfold with such gentle kindness. I still tear up thinking about how he delivered such harsh news in the most comforting way.

I remember our hospice team coming to the hospital one by one. I had been told to take tons of pictures, the worth of which I couldn’t possibly understand at the time. I asked our child life specialist to take as many pictures as she could of whatever she saw-nothing was off limits.

I remember watching family members, who were taking turns bringing my other children to spend time with Hart, say goodbye. I remember that watching my children say goodbye to their brother was both the most beautiful and the most heart-wrenching thing I’d ever seen.

I remember our minister coming and blanketing us in love and prayer. I remember many friends coming to pray with us and say goodbye to Hart.

I remember calling my dearest friend, who was out of town and not being able to get the words out. I finally whispered, "Hart.....it’s time. Hart is dying now."

I remember thinking, I’m prepared, this is really hard, but I did all the work, and it’s really going to pay off.

I remember someone listening for his heartbeat and hearing it very faintly, then listening again a few minutes later and not hearing anything. They said, "He’s gone."

I remember hearing a strange sound that came out of nowhere. I couldn’t figure out what it was or where it was coming from. I remember realizing it was me.

I remember realizing that no amount of work could have prepared me for his death.

I remember cleaning him up after he died and putting a fresh diaper and clean outfit on him.

I remember the doctor telling us we couldn’t donate Hart’s brain tissue without an autopsy, which he highly discouraged. Disappointment washed over me with such force that I had to grab onto the back of a chair to keep from falling to the ground. He then asked us to give him a little time to see what he could do. He later told us that he had convinced the board to waive the autopsy requirement if he would be willing to swear to the cause of death (which he was more than willing to do).

After they extracted some tissue, they brought him back to us to say our final goodbyes. I remember the funeral home woman emphatically telling us not to take off his hat.

I remember after what seemed like hours, but also nanoseconds, I asked my brave, steadfast husband to carry him back to the funeral home liaison, I couldn’t do it.

I remember not wanting to let Hart go... never wanting to let him go.

I remember them handing me a stuffed dog so I didn’t have to leave the hospital empty handed.

I remember feeling the ache of empty arms that I still feel today.

I remember every step of walking out of the hospital. Every. Excruciating. Step.

I remember being awed by the number of people who were affected by Hart's brief life. I am beyond grateful that Hart resides in the little pieces of him that remain in those whose lives he touched.

My relationship with Hart changed, but it lives on in the memories and stories that I share and the little pieces of him I see everywhere I look.

It Occurred to Me, His Mother Wept

2020-04-12T23:26:00.001-04:00

Each Easter, since becoming a mom, I cry. Easter reminds me of the enormity of God’s love. I think about how much I love my children and am completely overwhelmed by the realization that God loves all of his children so much more. It is both humbling and empowering.

The second spring following Hart’s death, as I finally emerged from the numbing chrysalis of fresh grief, I experienced Easter anew. I was still grateful and awed by the vastness of God’s love, but I was also experiencing Easter as a mother who had buried her son.

As I sat in church that Easter, listening to the familiar story of Jesus’ resurrection, my heart was drawn to Mary. I thought about her agony as she watched Jesus’ torment, her relief as his suffering came to an end, and the relentless sorrow as the reality of what that end meant washed over her. I thought about how the singularity of her experience must have felt so incredibly lonely. I hurt for her knowing that she no longer had Joseph by her side to share the burden of grief. I understood that, although she knew the importance of her role in fulfilling God’s promise, she would still ache with the emptiness of not being able to touch her beloved son or breathe in his sweet scent. In the midst of all the glorious Easter celebration, it occurred to me, His mother wept.

My heart ached as these thoughts flooded in. My traditional Easter crying turned into uncontrollable sobbing and I had to leave the sanctuary. I remember sitting in a tiny bathroom stall trying to pull myself together so I could rejoin my family. I tried to find comfort by focusing on God’s extraordinary spiritual gift instead of Mary’s human grief, but then I realized-the humanness, the incarnation, was the whole point.

Although I know God comforted Mary and that she was steadfast in her faith, I also know that losing a child is devastating, knowing ahead of time that you will lose your child doesn’t make it hurt less, and knowing you will see your child again doesn’t mitigate your sorrow.

Every Easter I am still overwhelmed with awe and gratitude for God’s love, I rejoice that His grace prevents us from being separated from Him, I celebrate love because God is love, but I also find comfort in understanding the human spear of grief. My heart still leads me to remember and honor Mary, to mourn with her, a mother who, so long ago, experienced the unimaginable loss of her child.

A Love Letter to Love

2019-11-22T16:31:00.003-05:00

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?

2019-11-19T20:26:00.000-05:00

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

2019-11-19T09:30:00.000-05:00

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

2019-11-17T17:09:00.001-05:00

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

2019-11-16T09:37:00.001-05:00

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!

2019-11-15T07:13:00.001-05:00

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

2019-11-12T22:26:00.000-05:00

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!

2019-11-12T06:13:00.001-05:00

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

2019-11-11T07:08:00.003-05:00

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!

2019-11-09T23:24:00.000-05:00

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

2019-11-09T07:36:00.002-05:00

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 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

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

2019-11-08T10:45:00.001-05:00

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

2019-11-07T07:45:00.003-05:00

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

2019-11-06T16:17:00.002-05:00

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!