Day 19 - Joy in the In Between

That phrase makes me roll my eyes sometimes. Joy in the in between. It feels like a quick way to brush off the troubles you are living amidst and force yourself to just "be happy" instead.

But, I think I am missing some of the sentiment of the phrase when I let my jaded heart get in the way.

When I look back at pictures from the days between Jack's second surgery and when his soul left this earth, I do see joy. I see the faces of my family members who came to see him for the first time. Like my grandparents meeting their first great grandchild. My friends coming to swoon over him even with all of his tubes and unable to hold him. I see photos of us with Jack, holding his hand, enjoying every moment we had with him knowing it was a gift, a miracle.

There was pain and sorrow during those days, of course. But essentially joy in the in between is life. We are living right now in the "not yet." We live among pain and sorrow daily (often not as grave in severity) and yet we are to be hopeful. We, as Christians, hope and wait expectantly for the day we go home to be with Jesus for eternity. We are given mercy and grace and joy along the way. The bible is flooded with verses about waiting on the Lord, God meeting people in the waiting - in the in between.

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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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