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Day 3 - Remembering

There is no right or wrong way to remember the baby or child you no longer get to hold or spoil or soothe or snuggle. There is no right or wrong way to grieve either.  The best advice I was given was “everything is optional except breathing.” That amount of freedom I have needed to remember - if that means I can’t go to a baby shower, I have the freedom to not go. Or to step out of church during an infant baptism, I have the freedom to do that. A wonderful podcast called The Joyful Mourning talks about milestones (#125 I think) and celebrating them (or not) - go give it a listen if you desire.  Tonight we chose to celebrate the week of Jacks birth with a date night. A bunch of friend gifted us a generous gift card to a local restaurant last year on Jacks first birthday so we used that finally and celebrated Jack.  Milestones are weird for me. Some parts of Jack’s story I am so proud of and others make me cringe that we (him and us) had to experience that. I am realizing t...
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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 ...
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Day 18 - prayer

 A few housekeeping things - I often write in the evenings and I think I ramble on sometimes from tiredness and poor focus. Second, I want to tell a cohesive story about Jack’s life but I tend to intertwine it with our current everyday life. Sorry if that means it comes out in choppy or scattered story telling.  I have struggled to feel encouraged by the Lord lately to be frank. I’m busy with work and school and a toddler and husband and social life - all blessings. But things that take up my time and leave little to sit with Jesus and ask him to work in my heart.  I was deeply encouraged by the sermon on a short and simple passage in Romans (15:30-33) at church today. Paul is preparing to take a gift to a Jewish church that was given by a gentile church. He’s asking for prayer that the gift would be received well, that it would build bridges, that it would bring the Jewish people to Jesus’s word. And then he asks for prayer that he would safely reach Rome with joy and be...
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