Day 7 - The why behind these posts

Here’s a brief list of why I wanted to share more of our story through these posts:

- When we tell our stories, the little details and the big details, it reminds us how significant that story is. Someone else hears it with new ears and helps you realize your story holds weight, deserves a spot in space & time, it is powerful and should be told.

- It also shows the listener more of God’s glory and beauty and sovereignty. Our story in many ways is not written by us. It feels even more magnified as we had very little control over all the events that took place during Jack’s 35 days here on Earth. In some ways that is frustrating - in other ways it gives light to the story He wrote - not the story I had planned.

- it’s cathartic for me. Sometimes keeping a story in my head makes me distracted - I spend mental energy on trying to remember every detail and it would just be easier to get it all out on paper and then breathe. It’s like it’s busting at the seams in my brain and wants to get out.

- it’s a way of remembering. Reliving feelings and thoughts and sitting in them a little longer. Rewriting the narrative - in a season of grief, I often need that. I need to sit and digest in the remembering and remind myself of the truth.

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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 “...

Day 16 - Surgery day #2

I have already shared that Jack had heart surgery on his fifth day of life, then was unable to come off of ECMO (heart and lung machine) a few days later, then palliative care was offered to us. In the days that followed that we were mostly just waiting. Waiting to see what the doctors were going to decide and do, waiting for Jack’s heart to show any signs of improvement that could mean he would tolerate coming off ECMO. At this point he was still fluid overloaded and making plenty of urine so he was losing fluid everyday, looking more and more like a baby and less like a sumo wrestler. The surgeons didn’t really have an answer as to why his heart couldn’t pump on its own. They never said the words “we should have done the other surgery” because all of the measurements of his heart told them they should not have done the full blown HLHS surgery. But essentially that’s what we assume should have been done. They discussed Jack’s case in grand rounds at length. They decided to take ...

Day 17 - Joy

Sitting in a hospital is a bit of a time warp. The hours pass slowly some days and other days they fly by. We had a lot of visitors which passed time quickly but only one could come in at a time (COVID rules) and one of us had to leave because only two people could be at the bedside at a time. The rules had actually loosened up about 3 weeks before Jack was born and they tightened back up again at the end of August. The timing was a sweet gift from God. After Jack’s second surgery we did a lot of sitting and waiting. We waited to see if his kidneys would start working again. We waited as the dialysis machine slowly pulled excess fluid out of his body. We waited to see if his heart function would improve after they repaired his arch again. It is an agonizing type of waiting. We were helpless to change the situation. We waited for miracles. We searched for any tiny sign of improvement each day. We eventually were told that Jack’s heart may not ever pump on its own ...

Shickel Family

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