(First published on CaringBridge, December 2018)
Today was the best and the worst.
Chip and I went to see Chandler at the hospital this morning, then we came home to "do" Christmas with the fam. Chase and Karen brought posole, and Chip made beans, so we had a New Mexican Christmas lunch of chile rojo, chile verde, posole, and beans. Then we opened gifts -- not quite the usual experience because most of our shopping and wrapping would have normally taken place in the last 10 days. After we had all exchanged gifts, I realized we hadn't given Chance his gift from Chip and me. I had to wander around the house asking myself, "If I were Chance's present, where would I be?" until I remembered where I had put it a month ago. I grabbed the gift out of the office and then threw it in an empty box before presenting it to Chance. We were all just so grateful for each other and to be together today. Gifts were really an afterthought. The unspoken sentiment was that the gift we all want this Christmas is Chandler home and fully recovered.
After the gift exchange, Chip and I fell asleep on the couch while Chase and Karen made homemade sopapillas with habanero honey and whipped butter. They also made cookies and "good" coffee to take to the wonderful people taking care of patients at Mission Hospital this Christmas day.
The best -- our family. I could not ask for more. We are imperfect like every other family, but we love one another, and we LIKE one another. It is so easy to be together. We are honest, we cuss, we hug, we cry, and we leave room for each other to process however we need to process. It sounds incredibly strange to say this, but this has been one of the most meaningful Christmases ever.
The worst -- seeing your son afraid, in pain, and confused. On the up side, he now has only 8 tubes attached to his body, and they have reduced his sedation medication. On the down side, they have been unable to get him to respond to any commands, and when they try to further reduce the sedation, he comes agitated and restless. They suspect that he is not responding to commands because of the sedation, but less sedation means more agitation and restlessness, a Catch 22.
So here's where I'm going to tell you how I honestly feel. When I see my son's eyes open wide, staring at the ceiling of his room, his arms pulling at the restraints, desperately trying to spit out his breathing tube and speak, everything in me screams, "This is TOO much!" My heart feels crushed. But I have to find the strength to stand there and hold his hand and tell him he is doing so well. Or I leave the room and cry and come back in to try again. That's just what we do when shitty things happen. We don't crawl in a hole and hide.
Of course, all the while I'm praying for God's peace, His presence, His healing, His strength. And I will continue to do so. He is WITH us. I know that. But prayer and faith and God's presence are not magic. This still hurts like hell. That's where all of you come in.
God showed up big time for us this Christmas through people visiting Chandler at the hospital, through texts and calls, through a homemade Christmas turkey dinner last night from a family who doesn't even know us, through cookies and goodies that showed up today in Chandler's room while we were home "doing" Christmas, through hugs from friends who were there when Chandler's heart rate went through the roof and I lost it (thank you Dan and Linda). I know Jesus is with us, with me, through this. But sometimes you really do need Jesus with skin on. You have all been that for us.
Please pray that tomorrow as Chandler transitions (they call it a "bridge") from being fully sedated to being more awake he would have less restlessness, agitation, and pain and be much calmer. Pray that they will be able to get a good baseline on his cognitive function. Pray for wisdom on behalf of the doctors as they decide when/if to move him from a breathing tube to a tracheotomy. PLEASE pray for God's supernatural peace to keep our hearts as we watch our boy struggle. It is the worst.