This is an email I wrote to my friends and family 1 months after my baby died.

The goal was three-fold: to update everyone all at once, to assure them that we were taking care of ourselves, and also to ask for support.

It has been slightly redacted for overly personal details.

One Month Since Tepley

Hello everyone -

(We heard that this note was helpful for some of you, and since in some ways the grief is expanding from the initial shock, we wanted to update you. That said, we'll understand if you don't read the whole thing - it's long.)

April 28 is one month since Tepley died. On this day we both want to stop and celebrate our angel, and we also wanted to reach out to all of you who have visited, emailed, texted, prayed, and supported us in so many ways.

First, we are grateful to be Tepley's parents. Almost every day sitting on the floor in the morning with our coffee and tea - and sometimes every day - we would say to each other how lucky we were. That after waiting to have Tepley, we had this perfect, fun, curious, loving little person. People would tease me that I almost exclusively bought her navy, blue, and grey clothes, and I would say (without irony) that we just didn't want anything to distract from her face and her personality. We named her Tepley because it was my unique nickname from childhood, and she seemed to relish in being her own namesake right from the start. We were - and are - so proud of her and the joy she brought to the world.

It's still a shock that she is gone - we close our eyes and see her, we hear her sweet voice. Sometimes she feels like just a beautiful dream. We love the memories of her that you have shared - of her hugs, of her jokes, of her laughter, of her (clear) preferences, of her shenanigans, of her splashing with her friends and teachers at Trinity.

As parents, you literally do everything you can think of to keep your children safe, so to do those things and lose your child is a moment of reckoning that is hard to describe. If you have young children or have friends who are new parents, please encourage them to know all the basic symptoms of childhood illnesses and watch closely for when things don't feel right. List those symptoms before you head to the doctor, and call out ones that are outside the norms for your child. Keep pushing for the needed testing until you feel satisfied. Although in Tepley's case the outcome would very likely not have been different (cytokine storms are not treatable in toddlers), please go to the best pediatric ER, if there's any question.

Most importantly, we appreciate the overwhelming and palpable support that we are getting constantly from all of you. We outlined below where we are and how you can help when you have time - thank you!

Sheryl Sandburg, in a moment of overwhelming grief when her husband died, wrote that a friend told her, "Option A isn't available. So let's kick the shit out of Option B." There's something kind of clear and important in her words. I literally rack my brain on what I could have done differently, over and over again, every day. We will always been mourning a life with our sweet Tepley, the Option A we cherished and waited patiently for. We're talking often about Option B, but we're not there yet.

In celebration of Tepley today, please light a candle and/or share special love today with someone you know or someone you don't - and text or email us, if you remember. Tepley loved the men and women at the grocery store and her favorite coffee shop. She loved her friends, team members, and teachers at school. She loved meeting all of you (except, maybe, when she was tired). She loved her grandparents, aunts, uncles, and cousins on Facetime. And she loved us.

We love Tepley more than anything in the world.

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1) How we're doing so far

  • We cycle through all the phases of grief - Denial and shock, Anger, Bargaining, Depression, Acceptance

    • Anger - I, in particular, feel overwhelming anger at the situation, at the fact that no one can tell us how we could have helped her more than we did, at the fact that our beautiful life is destroyed. It's 2019, a baby dies in 2 days, and you said she had a cold? The rage wells up daily and explodes, so if some of you experience it, please tell me so I can manage it better.

    • Depression - We are both deeply sad, feeling her absence as we felt her life - in our arms, our hearts, and our bodies. I have 2-3 big, deep episodes a day with all the tears, chest pain, etc.

    • Bargaining - There are so many what if's, and they come every few hours disrupting whatever peace might have settled in. What if she caught the virus at the park and she had gone to the museum that day? What if we had taken to the ER even though the pediatrician said she would be fine? What if, even though we keep being told the pace was so rapid that the outcome could not have been changed, the right hospital could have created a miracle?

    • Acceptance - And yet some moments, it feels like we are deeply grateful for our time together and can just live cherishing her memory.

    • Shock - Then we'll go back to, 'how can this be happening?'

  • We are starting to see the unique aspects of losing a toddler - Losing a child is said to be the worst thing that can happen to you, and losing a little princess is a specific category.

    • 20 month olds don't use full sentences; it's not like having a five year old who is becoming a little best friend or a 20 year old with whom you have built a full lifetime of memories.

    • But toddlers are just blossoming after all the work of having an infant, and every day, every little moment is a new discovery. Our hearts ache but we also smile in telling stories of the little routines and inside jokes we were building as a family every day. We were daily brightened by all her new words and her amazing empathy, even at such a young age.

  • We're still trying to understand what happened to her - Right now, given the pace of what happened, the belief is that she suffered from a cytokine storm. This condition is currently untreatable in toddlers.

    • The working theory is that she got a virus and had an aggressive over response by her immune system (the cytokine storm). At the same time, she was developing interstitial pneumonia but it was not heard or seen by basic exams yet.

    • We've been in contact with the medical examiner since Tepley died, but they may have to work with the CDC to track what the virus was.

  • We love our baby and we're trying to think of ways to celebrate her - It's hard to express how proud we are of Tepley.

    • I am posting one picture a day - she was just so beautiful and joyful. We still can't look at her more recent pictures during the day.

    • We talk to her in the present and about our wonderful memories. There are so many.

2) How you can help right now

  • Remember Tepley in small ways - Both on her Angel Day (the 28th monthly and March 28 every year) or every day.

    • Share Tepley's love - and your love - with the world and tell us about it - Extra hug? Little community service project? Write a card to someone you have been meaning to, but haven't gotten around to it?

    • Light a candle - Just lighting a candle for her at home or at church means so much.

  • When you think about Tepley, keeping texting us / post about it - We are so grateful when people are thinking of us.

  • Please keep texting and emailing and coming to visit - We are overwhelmed by your love and support, and it makes such a difference to know that we are not alone in this pain.

    • Please keep sending texts and emails when you think of us - We love to hear from you every day or every week - that you are thinking of us, about something you are doing, that you are thinking of Tepley. etc.

    • Please come to visit - Ask about how we're doing today, say you are thinking of something about Tepley, then tell us about you

    • Keep sending feel-good ideas - Articles, massage people, vacation spots, books, etc.

  • Know an immunologist or a pediatrician who works in infectious disease? Looking for a couple of referrals! - We want to find out more about what happened to Tepley and what we can tell other parents in the future.

    • Ideally, when we get the final report, we'll be looking to connect to a few people to understand and share this experience.

      • There are US researchers looking into flu deaths and, if that's the virus, we'll be trying to connect to them to build a case report on Tepley's death for other pediatricians.

  • Pray for us / send us good vibes depending on your spiritual perspective (this one is the same as before) - To have strength, to find ways to live with joy again, to be connected to people who love us, to have peace, to connect to Tepley every day

    • We believe that God / the universe channels love and joy through all of us to share with others, and Tepley was the clearest manifestation of that in our lives.

3) What not to say or to do

At this point, the only thing not to do is to stay away. We need your support. We are trying to find the balance in grief of our overwhelming love for Tepley and our devastating loss of having her in our arms and our lives every day.