F’in Facebook

These days, most of my time on Facebook is spent in the various support groups I belong to, because once you’ve lost a child, so many social media posts seem just vapid and pointless. Also, it’s hard to stomach the inevitable pregnancy announcements and updates, when people are cracking jokes about labor and gushing about how their baby is a size of a grapefruit, and I just want to comment, “My baby was the size of a bowling ball, and HE DIED. Also, I DELIVERED A DEAD BABY.” You’d think the loss of your full-term baby would be enough to let your circle of friends and acquaintances know that stillbirth is a thing, but no, apparently most women will just blissfully go about their day thinking it will never happen to them.

Hence, in the two years since Luke died, I’ve whittled down my friends list quite a bit, removing people who have consistently failed to acknowledge my loss in any way, or who have shared insensitive posts, or who have otherwise just proven difficult to tolerate.

There are some people, though, whose names give me pause every time it seems like a good time for a purge. They aren’t adding anything to my life, and in some cases have been downright hurtful, but I just can’t seem to bring myself to push the delete key. These include:

• Family members who have never once acknowledged my loss—but they are nonetheless family, and they live far away, and this might be the only way I will ever know what is happening with their lives

• An old college friend of my husband’s, who has basically done very little to support him, and whose wife said to my husband’s face, in response to a blog post I’d written about all the ways people weren’t there for Zack, that anger is just a stage of grief and he would have been angry no matter what they’d done

• An old college friend of mine, who now lives in another country, recently got married, and is now pregnant, and has never acknowledged Luke’s loss, despite the fact that we were once close

• Someone who I’d unfriended at one point years ago for unrelated reasons, but whose friend request I’d recently accepted, only to run into her in the gym and have her say, “I saw it was your son’s anniversary the other day.” (Birthday, but whatever.) “I didn’t know what to say.” (Ummm, I gave everyone a script on what to do. I told people to take a nap, for f’s sake.) “But I’m glad you had another one!” (F you. Just f you. He’s my baby, not a totaled car that my insurance thankfully colored.)

So I wanted to put it to you, blog readers and baby loss moms: Who from the above list would you keep, and who would you delete? Is there anyone on your friends list you can’t bring yourself to delete?

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Total eclipse of the heart, placental results, and other ramblings

Luke’s second birthday is on Monday, the same day as the eclipse. We’re packing up the kids and our stuffed turtle and heading to South Carolina to hopefully witness the moment of totality, since in our area the eclipse coverage will only be about 80 percent. I ordered matching custom T-shirts for all of us so that we can represent Luke among the eclipse watchers.

When I first realized that Luke will be sharing his day with the eclipse, I was honestly kind of pissed, because I thought, how can he possibly compete with a TOTAL SOLAR ECLIPSE? An event that most of the US hasn’t experienced since I was in seventh (eighth) grade? But then I realized the power of merging the two occasions, of asking people to remember Luke, and all the babies gone too soon, as they are looking up and pondering the cosmos. I hope they take up the call.

Borrowing an idea from Sidney’s mom, I have also asked people to perform an act of kindness that day, for themselves or others, be it sleeping in, smiling at a stranger, buying someone’s coffee, donating to a cause they find meaningful, planting something for pollinators, lighting a candle, or writing his name on a special rock. And I’ve asked them to use his name, either to say it out loud or offer it silently as an intention as they perform their act of kindness. I picture these acts rippling out into the world with my baby boy, his sweetness and innocence and purity, at the epicenter. Especially in light of recent events, it’s a comforting thought.

It is, of course, hard to believe that it has already been two years. In that time I have quit my job, completed several semesters of community college, entered grad school, and became a master naturalist. Honestly, I am not sure that I would have done any of it if I hadn’t lost him. His death jolted me into reevaluating my entire life. It made me realize that there are way harder, scarier things than changing careers. That we have too little precious time to go after what truly makes us happy. That my family comes before everything.

In that two years I also had a miscarriage and somehow, by the grace of all that is good in this universe, a second living child. I lived through the most terrifying, the most anxiety-ridden, the most sleepless 37 weeks I have ever experienced. There is no fear like the fear of the unknown. Kick counting became so ingrained into my every moment that I thought for sure I would be reaching for my phone to log movements for weeks after Wyatt was born. But now, that all seems like a distant memory, though it does come flooding back if I reach deep enough. For months I injected myself with blood thinners and took supplemental folate. In the weeks after Wyatt’s arrival, it seemed like a milestone when I was finally able to stop those treatments. Now they, too, are a distant memory, though I still have the bruising on my belly to remind me of what I went through to bring my child into the world safely.

In May we received the results of Wyatt’s placental pathology. His placenta was normal! It was above the 75th percentile, and there was no evidence of an immune response. Either the treatment worked, or there was no immune response this time. We will never know.

One of the projects on my plate this fall is to add a section on this blog specifically for the resources I’ve gathered on these immune conditions in pregnancy (the MPFD/MFI/VUE/CHI spectrum). I’ll also be sharing the stories of other MPFD/etc moms. I’m contacted several times a month by readers who stumbled across the blog after experiencing an immune-related loss. There’s not much out there that’s written for the patient; it’s mostly dense journal articles full of despair, and the readers are seeking information—and hope. So I’d like to make this blog more of a resource, as one way to amplify the meaning of Luke’s life. Stay tuned.