Day 32 - How grief changed me

I obviously missed quite a few days - I took about 2 weeks off - turns out blogging about heavy stuff is draining and I probably bit off more than I could chew by aiming to do 35 posts.

I have been reflecting on how grief has changed me over the last two years.

In many ways, I am not the same person I was when 2021 began. Grief has changed my thought life, my friendships, my work.

First - My world got tiny. I often felt myself looking inward (at my usually crappy situation) and feeling a lot of pity, sadness, anger and occasional shame. In those seasons, it’s so hard for me to be an engaged friend. Essentially grief has made me selfish. When you are going through so much stuff, you don’t have capacity to extend yourself to be there for your people. There’s nothing wrong with that - that’s the reality of grief: other people are checking on you for a long time - for good reason. But that’s hard for me- I wasn’t built to be needy, to mope or even be able to answer “how are you doing” over and over when most days I didn’t know how I was doing at all - I was just being. Accepting help and being able to accept that I don’t have the capacity to care for others right now - that was/is challenging.

But eventually you reach a point of “ok I’ve gotta get out of my pity party phase and move slightly back toward normal.” Normal is an illusion because grief changes you forever but back to a new normal. The timing that each person desires that turning point is of course different. And of course grief is not linear, some days I think I’m back in that pity party but the number of days has become fewer and fewer.

In friendships, I occasionally feel this invisible divide. I have experienced something none of my friends have experienced. In a satan-driven evil way, I feel very “other” sometimes. God has graciously not let those thoughts prevail. God has also graciously given us people who intentionally remember Jack, recognize that it happened and want to help us understand the person we have become since he died.

In my work: I work in end of life care. We often reach a point when we have conversations with families about “doing things for their loved one vs doing things to their loved one.” That’s a shitty conversation but it’s a real thing - necessary but terrible. We’ve had that conversation with doctors about our newborn. How wretched!! But I have a tinge of compassion for families as they process that and I can give them a tinge of normalcy that this isn’t new for me - they aren’t so “other” from me.

Grief has changed me. Us. I don’t recommend it HAH but we don’t get to control who experiences what or when. I’m trying to lean into who this has made me to be instead of leaning away from it.

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Day 1 - July 12th

I have desired to write about Jack and our child rearing experiences in general for a while and I frequently push it off and it just simply isn't a "right now" priority. Starting today, on what would have been Jack's 2nd Birthday, I am going to write daily (or try to) for the next 35 days in remembrance of the 35 days he lived on this earth. It will likely be unedited, imperfect, and intentionally raw - partially for the sake of time (I work, do school and we have a toddler in foster care ok?!) and partially because that is the theme of our story, imperfection (made perfect through Christ). Today, I want to talk about birth. More specifically, medically complex birth. I get asked often if I had to have a mandatory c-section - thankfully no I did not. But I also did not expect to go into labor at 35 weeks and 5 days either and I am certain that is the worse option here. We came home from a week at the lake with Ike's family and as we are getting into bed Ike s

Day 2 - The NICU

The NICU is a place you are extremely grateful for but you also dread its existence. You are so thankful that your fragile baby has around the clock expert care but you also hate that your baby has to be there without you. And then when you are there you feel awkward - you’re the mother but his caretaker is the nurse - you have to ask permission or for help to hold the baby (so many lines/drains so it’s not easy to pick them up). It’s also just heartbreaking to see the other babies that have been there for weeks or even months. Jack’s isolette/crib/bed was next to a baby born at 24 weeks (on April 8 actually) and it was July 12… he was still tiny with a young mom who we witnessed have hard conversations about her capacity to care for such a tiny fragile baby. The baby on the other side was born via c section because his organs were on the outside of his belly (omphalocele) and he cried and cried and cried. (We actually had a mom bring a baby with this same diagnosis to our house in Ug

Day 6 - ECMO

After all that surgery talk, this seems like an appropriate time to talk about ECMO. ECMO stands for extracorporal membrane oxygenation - basically an exterior heart and lungs. Only a few hospitals in Virginia have trained teams and adequate machines to run ECMO. We learned a lot about it because there had to be someone in Jacks room 24 hours a day to monitor/run the machine. Like for bathroom breaks or lunch breaks - they had another trained ECMO person come and sit in the room while they took a break. We met almost every ECMO worker (a few didn’t do peds) and we talked with them a ton. They were present for many hard conversations with doctors, surgeons, nurses, chaplains, etc. They did things like get us lunch when the free lunch carts rolled by, bring us honey from home, update us on medical rounds that we missed. They felt like a second family. We wrote down almost all the nurses and ECMO techs Jack had - we wrote down 15 names for ECMO and I know we missed a few (like the night

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