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Posts tagged as “Family”

Sarah’s Address to Olive.

Sarah wrote a powerful piece on the loss of Olive and her experience of grieving over on Facebook. In the interest of storing it for posterity, I am reposting it here.

Losing a child feels like the whole entire universe is reduced to a grain of sand.

Empty, yet somehow filled with so much energy all the same. An unpredictable kind of force that will blind you. Grief is a tricky thing— it’s not linear. It sneaks up on you, and it doesn’t care if you have plans. It’s absolutely ruthless and there is no map.

Things still come in threes. As the days and months go by, I find myself sifting through gifts sent in three, gifts sent with love and without the unthinkable notion that we wouldn’t be bringing all three of our baby girls home. I cycle these gifts in and out as the girls continue to outgrow them. I always know when they’re wearing something that has a third, and it’s painful but I also find it comforting. I find myself desperately holding on to these moments— because it’s a reminder of the time before, the time of “is” and not the now of “was” that breaks my heart daily. It’s a reminder of a joyful time when we were just thrilled by our new reality of raising three little girls. And while it’s hard to see the third onesie or the third set of eating utensils, I’m actually more terrified of reaching the day when things start coming in two.

Moments like these have a particular kind of sting. They make me feel farther away from the time that Olive was here, and more thoroughly a part of the now where we exist without her.

I know by now that nothing will actually keep me from Olive, that there is no without, because she’s with me every moment. When I wake up and when I go to sleep, and in every step I take. Even still, I feel like I’m desperately hanging onto right now because I don’t want to keep taking steps that move me forward, creating this inevitable distance from the time that I last held her in my arms. I want that time back, I want to be back there. It was hard, but it was so beautiful.

I still hear the sounds of monitors in the PCICU, in the streams of the shower, the dishwasher, in traffic— everywhere. I often wake up expecting to head to the hospital, just like I did every day for months. I realize that’s not the case, and it just reminds me of how impossibly hopeful I was that things were going to turn out okay. I long for the time when there was still a true flame of hope. But honestly, I can still feel it burning in my heart months later. Even though Olive is gone, it persists. It’s as though that hope hasn’t completely caught up with reality. Hope doesn’t know how things are going to turn out, it exists regardless of outcomes.

I can’t express how badly I wish I could see Olive again, boop her nose, call her muffin. Some days are just more painful than others, but every day I’m considering every moment in terms of what it would be like if Olive came home. What would this whole experience of parenting feel like with Olive here too? Would she need a million hugs like Bea? Or would she be more independent like Penny? She would absolutely be something entirely her own, something 100% Olive. Ask any of the amazing staff at Johns Hopkins, Olive was not to be messed with— she was a sass machine, and she was also the sweetest baby and delicate in so many ways. She was little but not without personality, her impact vast and infinite.

I constantly feel the absence of her, I feel it framing my every experience. I feel it so deeply that sometimes it’s hard to breathe. I miss her. I just really miss her.

There’s a lot of not saying things throughout this process. There is a lot of skirting around the darkness with new acquaintances and coworkers. Almost every day I’m meeting new people at work and answering questions about myself, that’s kind of how it goes in a small town. People are interested in my life, my story. Do you have any children? What are their ages? Inevitably, I find myself answering the question I dread: you had twins?! I hesitate, I hope they can’t sense my hesitation. People are excited to share in the wonder of twins, I get it. It’s something that stirs up joy in just about everyone. But my mind travels to a hard place. I’m still figuring out how to navigate this loss. I tell myself that when it feels right, one day I’ll tell the whole story. Or maybe they’ll find out some other way— they’re actually triplets, not twins.

At their check-up, both nurse and doctor asked if Penny and Bea have any other siblings— we say no, but we think something different. I wonder if they “know” and how it feels for them to ask a loaded question that they are simply trained and required to ask.

It’s been a little over three months since Livvy passed. Last month the girls celebrated their six-month birthday. It’s a complicated celebration, a messy jumble of sincere joy for our two little ding-dongs, combined with feelings of great loss and immense aching for the now that could have been— the now of three and not two.

I’ve been hesitant to speak on or with anyone concerning Olive for the last few months because I’ve been too scared to move forward. I’m still just so scared and so unbelievably sad. But I do believe that the steps present themselves organically.

Just last week a coworker heard about our loss and asked a question that helped me turn that corner. She asked me, “What was her name?”

Olive. Olive, I told her.

It felt so good to speak her name. And I realized that my fear is that people will be too nervous to say her name— when all I want is to hear it. Olive. Never be nervous to ask about Olive, and please continue to say her name.

There’s still so much to uncover and learn in this process. I’m still figuring it out, and I’ll probably always be figuring it out. But I feel ready to start. I feel embraced by the love I have for Olive, her sisters, and her father. My heart got bigger because of Olive. It got stronger too.

The world is better for having had Livvy in it for whatever amount of time. Not enough time, that much is certain. But time feels different to me now. When Olive died time changed completely. The short time that Livvy was on this earth was enough to expand and fill an entire universe ten times over, absolutely crushing the trivial meaning of time. A few months, a few years, or a hundred. The love we have for Olive is infinite. My heart is a lifetime. To the moon and back, Livvy bear.

“We are photons released from a dying star
We are fireflies a child has trapped in a jar
And everything is distant as the stars
I am here and you are where you are”
— Nick Cave

Olive Shields Dillingham 1/20/2021 – 5/09/2021

My dearest Olive,

I am sorry.

I am sorry you spent your brief life sick and hurting. I am sorry for the tinkering and experimentation and discomfort we put you through. All your mom and I wanted was for you to have a shot at a normal life and we were willing to do whatever we could to give that to you. We would have done even more, everything and anything, if we would have thought the pain you lived in was going to be fruitful. But it wasn’t, and suffering for suffering’s sake is no life.

I am sorry you don’t get to grow up with your sisters and your mom and me. I am sorry you never had a chance to leave Johns Hopkins to be warmed by the sun on your face. I am sorry you never felt the wind or saw the moon. I am sorry you only met your sisters a single time. I am sorry you never met so much of your huge family and that they never got to meet you. I am sorry that your stink-eye is something you only ever shared with your nurses, not your siblings. I am sorry I only got to hear your tiny cry a single time. I am sorry for all the onces and nevers, in all their terrible shapes.

I am sorry you will never get to experience all the joys of life, both regular and exceptional. Eating pomegranates outside during the summer. Listening to a great song that connects with your soul for the first time. A perfect cup of coffee on a cold morning. The pride of knowing you did a job as well as you could. A warm blanket and cool feet as you sleep. Falling in love and fighting to keep that love alive and healthy. A visit with a friend on a lazy Sunday. Christmas morning treats. Silly photoshoots. Blankets. Warm fires. Mountain tops. Birthday dinners. Late night karaoke. Chocolate chip cookies. Making art. Hugs. All the silly little and big important happinesses that we take for granted. I’m sorry I cannot share them with you.

And I am sorry for all the sadness and annoyances you will never endure. Heartbreak and loneliness and embarrassment. Being kept awake at night thinking of some stupid thing you said to someone a decade ago. Seeing an ex on the street and quickly deciding if you are going to be polite or pretend you didn’t see them. Annoying work e-mails. Saying something unintentionally rude and having to own up to it. The shame in knowing you failed at something because you half-assed it. Fights with your sisters and your parents and your friends. The feeling that no one understands you. All the stupid little miseries that make all the silly little happinesses so much sweeter. I am sorry I cannot comfort you through them.

I am so, so sorry that I don’t get to know what kind of woman you would have grown up to be. I would give anything to know you as a child and adolescent through your awkward teenage years and into your formative young adulthood. And then as an adult and potentially as a parent. And if you didn’t want to have kids, that would be ok too. I wanted you to have a life that was your own—Olive’s life—to make decisions on how and where and with whom you live it. Olive’s choices and Olive’s mistakes. Olive’s triumphs. Olive’s failures. The tapestry of a life that should have been uniquely yours.

I am sorry you don’t get to grow into the old lady name we gave you. I am sorry you only ever got to experience the little girl version, even if “Livvy” is an especially cute nickname. It was such a perfect plan: strong old lady names with adorable little girl versions. Your mom and I were willing long lives for all three of you to allow you time to make the most of the names we gave you and to become the perfect, distilled versions of yourselves. I am sorry you will miss that.

I am sorry your sisters will grow up without their middle triplet, the filling in their sibling sandwich. Since we learned that there would be three of you, your mom and I had a thousand ideas about what sort of life you girls would have as a trio. We imagined you all growing and learning together, experiencing life as a unit. What would the dynamic have been like between you all? Was Penny going to be the protector and Beatrice the quiet accomplice to Olive’s adventures? Would you all be friends or not? What secrets would you have shared together? What tales would you have told each other? I am sorry they don’t get to have that and that you don’t get to be a participant in our lives. I am sorry that they will only ever know you from photos and stories. I am glad your sisters are spared from our current sadness, but I am still sorry we couldn’t share you with them.

And please know, my little Tapenade, that we did everything we could for you. We pushed you as hard as our hearts, modern medical science, and the counsel of the medical team in the PCICU at Johns Hopkins would allow. We spent every single moment we had with you in the hospital to advocate for you in the busy times and love you in the down times. We thought long and critically about what the best path was for your care. We subjected you to serious risk with some of the things we allowed, some of the things we pushed for. But all of it was with the hope that something would break through and allow you to get better so you could come home to us. So we could be a complete family. Olive, Penny, Bea, mom, and dad. All your mom and I ever wanted was to have all three of you home, together, and safe.

I hope, my heart, that we made your last few days as lovely as we could. We strove to fill your hospital room with as much color, brightness, and love as possible. We wanted every second of that limited time to be free of hurt. Everyone in the hospital who knew you and loved you came by to say goodbye and make a memory with you. There were photos and hugs. Nurses and doctors cried and shared stories with us. We had three days of photos and decorations. We smelled your little head and kissed your cheeks and played with your funny little poof of hair. We held you as much as we could in those final days to try to make up for all the time you were in the hospital when we couldn’t and all the time after the hospital when we wouldn’t be able to.

And I hope, in the end, as you passed away in our arms, that it was gentle. You were surrounded by people who loved you so much and cared for you so hard. I had my hand on your chest and felt your heart slow and then stop. I watched you take your final breath, and then we knew you were gone. I will never know what it was like for you in that moment, but I hope it was as easy for you as it was terrible for us. I would have traded your pain with you in a heartbeat. I would have given everything of myself for you, if I could have.

My sweet little Livvy Bear, I don’t for a second regret the horrible decision your mom and I made to let you go. Given the same set of circumstances, I would make the same decision again. We chose your comfort over our own. But I am forever, forever sorry that you didn’t get the chance you deserved to live, to thrive, and to be. I love you, Olive, and I am so very sorry.

Love always always,

Dad.

Today is the 10th anniversary of the death of my brother Nick.

I would write something, but I think my sister Elizabeth has already done such a lovely job that I will instead share what she wrote here with you.

I don’t have the right words I need for this so I will borrow some.

“I wish you could have been there for the sun and the rain and the long, hard hills, for the sound of a thousand conversations scattered along the road, for the people laughing and crying and remembering at the end. But, mainly, I wish you could have been there.” – Brian Andreas, Wish List.

Nick, time has betrayed me. Ten years have gone by in a moment and I’m left wondering how I got here.

The first time you were diagnosed, the news came through my mother and father while I sat with all of my siblings in my sister’s room. I was in first grade. A few days earlier, Joe had been sitting on you and punching your back while watching TV. You peed blood. Mom told us that it was because you ate too many red vines and I believed it. For the next week, I cried every time I had to use the bathroom because I was afraid. The truth was that Joe had aggravated a tumor the size of a football in your torso. They gave you a 40% chance of living 6 months and recommended hospice but you decided to fight. Soon your head was bald and we made sure to replace your lost hair with dozens of temporary tattoos. This was against the rules at our Catholic school but they made an exception, letting you be the only kid in third grade who could show off his Beavis & Butthead tattoos. One surgery and several rounds of aggressive chemo later, you were down a kidney but you were given more time.

The second time you were diagnosed, the news came through a phone call before basketball practice. I was a sophomore in high school. For the past few weeks, you’d been having back pain and didn’t know what was causing it. Your hair had been in and out recently as a result of alopecia areata. Though it’s benign, the combination of that with the unexplained pain had us all worried about what was going on below the surface. The truth was that there was a tumor the size of a grapefruit where your kidney had been. They gave you a good prognosis and removed the slow growing tumor a few days later. Soon you were having morning radiation and consistently treating your friends to weekday breakfast because and you knew you could get them an excused tardy. One surgery and several rounds of radiation later, you were given more time.

The third time you were diagnosed, I was in the room with you. I was a junior in high school. For the past few weeks, your back pain had come back and we were all nervous. We were told that we could get test results faster if we went to the ER so we spent a day in the waiting room and were told that the tests suggested that it wasn’t cancer but they would do a full scan to be sure. The truth was that they were wrong. The cancer had changed; it came back aggressive and unrelenting. Dr. Dahl wept as he gave you the news for the third time. I wept in the doctor’s office, and in the car, and when I told my sister what had happened, and every morning when I woke up and, for a moment, forgot what he’d said. A few days later, you and I were alone in your room and you apologized to me for having to have hear the truth of your illness. You were sorry that you didn’t have a chance to sugar coat it, to deliver it more softly, to find a way to make the tumors in your lungs, your hips, and your sinus seem smaller. You were the one who was sick and you were already looking out for the people around you, demonstrating a type of strength that it took me years to fully understand. I told you that I was grateful to have been in the room and that I didn’t want to hide from this. You got ready for your third fight and gave it your all for 9 months. A few surgeries and countless rounds of chemo and radiation later, you weren’t given more time.

The day you died, I was standing at the foot of your hospital bed. I was a junior in high school. For the past few weeks, you’d been getting more sick and we were all broken. You’d had a surgery that didn’t go as planned and we knew we were down to a matter of weeks, if not days. It was a time of learning to put your comfort before our own deep desire to have you with us. We told you we loved you, we told you it was ok for you to go, and we waited. At 10:32am on 6.26.2005, you were gone and we experienced our first day in an incomplete world.

That’s where we’ve been ever since: living in a world where every day feels incomplete. And now it’s been 10 years and I wonder where the time has gone.

So today I can only say thank you and promise that I will keep missing you in every day to come and I will keep trying to make you proud. Nick, thank you for simply being my brother. The boy who told me he could read my palm to see my future house and then spit in my hand to show me where the pool would be. I cried and you told me you’d do it for real this time and then you spit in my hand again. Later, when we grew up and things got hard, thank you for teaching just how deep and complex strength can be. Thank you for teaching me that sometimes the odds are just numbers and that you can always try. Thank you for teaching me how to have a sense of humor even when it all seems pointless. Thank you for everything.

I miss you, brother. I love you.

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Yep.

Sarah Dances – “Monster” (feat. SJ and Corinney-binny), also, HAPPY BIRTHDAY SJ & THE BLACK LASER!!!

Today is SJ’s fifth birthday!!! HAPPY BIRTHDAY SJ!! Which means it is ALSO The Black Laser’s 5th Birthday!!! Happy birthday, The Black Laser!!!!!

What better way to celebrate than with yet another Sarah Dances, this time featuring the birthday girl and he sister? You’re right. There is no better way. We shot this bad boy WAY back in May, but for this reason and that, I didn’t get around to finishing it until September. Oops! But, the delay makes it a perfect way to celebrate this momentous occasion.

HAPPY BIRTHDAY SJ AND THE BLACK LASER!!!!

cakeisawesomesm

My great uncle Blase on MSNBC talking about Catholics

Screen Shot 2013-03-16 at 2.40.46 PM

My great uncle Blase was recently on MSNBC with Chris Hayes discussing the new Pope and Catholicism in Latin America. As a former Maryknoll priest who served in South America who has left the church, he is uniquely equipped to comment. He also happens to be one of the smartest, coolest guys I’ve ever had the pleasure of knowing and I get to be related to him.

Not bad.

Check out the video here or by clicking the photo above.

My brother is starting a whiskey company in Tennessee.

The arrow indicates the brother in question.
The arrow indicates the brother in question.

And the Tennessean has a profile on him and his business partner Sean’s efforts to get their company up and running.

A little clip from the article my dad forwarded to me.

Former Notre Dame quarterback Patrick Dillingham plans to join the growing legal Tennessee moonshine industry by launching the American Born Moonshine brand later this year through his Nashville-based Windy Hill Spirits.

The startup has raised $2.5 million of a planned $5 million fundraising round and has 18 investors, according to a filing with the U.S. Securities and Exchange Commission.

A California native, Dillingham, 29, was a walk-on quarterback for the Fighting Irish and played backup in the position during the 2002 season. He has since earned an MBA from Stanford.

Pretty sweet. I especially like that he’s decided to name it Windy Hill after a landmark in our home town. It seems like a stupid, generic name, but it holds some significance for our family on top of being a nod to where we grew up.

Patrick joins a strong group of booze producers on both our mother’s and father’s side of the family.

Best of luck, Patrick, and I want a bottle of the first batch. Well, two bottles: one to hold on to and another to drink.

My brother sent me this video last night in response to yesterday’s post.

If you don’t want to watch SJ working on her alphabet, skip ahead to 4:12 for the meat of this thing.

I really like this exchange.

SJ: “She has tissue around her like a ghost.”
M: “Why does she have tissue around her.”
SJ: “Because she’s a ghost.”

But the real heart-melter is this bit.

M: “Will you say hi to Uncle Joe?”
SJ: “I can’t see him.”
M: “Just say, ‘Hi, Uncle Joe!'”
SJ: “I want to see his face.”

I am a big fan of her gibberish song, too.