Wednesday, November 30, 2022
The Long of It
Saturday, November 12, 2022
Bandwidth
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…
Monday, November 7, 2022
Grief is the Price We Pay for Love
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.
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.”
Sunday, November 6, 2022
The Grieving Season
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.
Tuesday, December 8, 2020
REMEMBERING HART
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.
Sunday, April 12, 2020
It Occurred to Me, His Mother Wept
Friday, November 22, 2019
A Love Letter to Love
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!
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But, sometimes, barista love is best! |
Tuesday, November 19, 2019
Was It Worth It?
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
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

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.
(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.