Shickel Family

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...

 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...

 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 ...

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 ...

 Yesterday we celebrated Ike's 32nd birthday. When we celebrated his 30th birthday, Jack was still here on this earth (at UVA). It makes July a mix of happy and sad emotions for us now.  It was a long but fun day yesterday celebrating Ike so I'll cover two topics in this post: the joys of watching your spouse become a parent and the lows of watching your spouse grieve the loss of your child.  Ike has always been the dad type. He is a kid magnet, probably because he really is a child at heart and isn't afraid to be a giant goofball. He, historically, is the responsible and considerate one amongst his friend group. He can anticipate other people’s needs and is quick it act on it. It was my greatest honor and privilege to watch Ike become a Dad. To watch him melt when Jack looked at him. To watch him intuitively know what he needed or how best to do things for him. To watch him read books to him (even when he was in the PICU, sedated/intubated - didn't matter to Ike). To s...

 Today was the first (week)day of family vacation and we ended up in the emergency room with our foster son after the bridge of his nose met the coffee table edge and it was not pretty. A three hour visit and the hard part (stitches) was done in the last 10 minutes.  Your mind does funny little things when it remembers. Sounds and smells are probably the most jarring for me.  A few months ago, we had friends whose newborn had to go to UVA briefly for an infection at about a week old. I ran food up to their room (down the hall from Jack’s room actually) and the dings of call bells, the beeps of monitors, the sliding of med drawers, and the scary ding for the medical response team. The smell of medical cleaner. It floods my brain with memories.  I felt a little bit of that today. The sound of the glass doors sliding open and shut. The heart monitor beeps. The sound of the portable x ray machine going by. It’s stuck in my brain and somewhere deep it connects the dots be...