River and Miller updates!

A lot of boys joined Boy Scouts when they were kids. Not me. Dad taught me most of the skills I would have learned in the scouts. He didn’t give out badges. The Scouts isn’t all about badges. Socialization, values, and experiences are also major benefits. I gained these benefits from my dad and the Baptist Boy Scouts equivalent, maybe rip off, The Royal Ambassadors(RA’s). Sure it was a little lame, but I still remember the pledge, and a few memories of my time in the RA’s have really stuck with me. The pinewood derby was cool. I had a car one year shaped like an arrow. It was fast. We won my age group at church, but it cost a lot. Specifically, my dad had to go to the hospital for lead poisoning. I remember watching him melt fishing weights and letting the molten lead drip into the spade bit drilled hole in the car. It smelled awful. The Pinewood derby was memorable, but it is more for parents than the kids. Another fun memory was my first camp out. We went to Cloudland Canyon state pa...

We talked to the doctor yesterday at 9:00am. River is stable. She had good urine output overnight, but it had slowed by the morning. I wish her kidneys would improve. Toward the end of our call he asked us if we were going to withdraw care today. I was angry. In hindsight, I know it’s his job to ask this question. I’ve already signaled we know the path we are on, and he is likely asking because we didn’t come the day before. He wanted a status update just to make sure we are not running from the decision.  We drove through Gwinnett and made a quick stop for lunch in the car. The ride was enjoyable. The atmosphere was somewhere closer to our first date cruise in the Red Ranger than like our emotional trip to Atlanta on Monday. We are better together. I’m so happy to have Carly with me again.  We talked about our questions, and wrote a list to ask the doctor. Hard questions. Carly loves lists, and I'm glad we wrote them down. We talked about our fears. One of our head-in-the-san...

I woke up this morning at 9:00 am. Wanda took care of Miller last night to give us some needed rest. However, rest escapes me. I’ve been tired all day. I had intended to spend some intentional time with both Carly and Fielder. Neither happened. Something about having a daily rhythm keeps you moving forward. We didn’t do any coping today. In fact I probably took a step back. I feel better when I get up at 5:30am. I need a sense of normalcy. I’m afraid I won’t have it for many months, maybe even years, to come. I got a brief sense of normalcy today when doing some research upstairs in my office. The computer time was unplanned and quite frankly was a chance to escape or retreat a little to the quiet darkness of my inner thoughts. I answered a few work calls and imagined that life was normal. I scrolled and clicked and meandered the internet for almost two hours before Carly burst into the room and exclaimed, “I’ve got the best news!” She held her phone close to her chest. I turned to her...

Yesterday was awesome for other reasons besides getting to hold River. I was reunited with my wife. The whirlwind we have been in for a week led us down different paths. We were apart for long periods and have a difficult time connecting emotionally the nights we do get to share a bed together because of physical exhaustion. Conversations have been more about logistics and physical care rather than emotional connection and healing.  My posts with updates about Fielder, Miller, and especially River have been detailed and specific. I’ve been trying to be so strong for all of them, but in doing so I’ve abandoned my wife. People are craving more from Carly. I hadn’t realized it until yesterday, but I am too. Everyone deals with grief in different ways. She has been on her own path, but yesterday our paths converged and for that I am thankful.  Being with her alone during the drive made me remember our first drive together; our first date.  We met in late summer 2004. I had ju...

Today was a great day. Not what we were expecting.  I felt pressure to make a decision today. I felt uneasy. The car ride to the hospital was quiet. Our playlist played and we didn’t talk much. It was weird.  Half way through the trip I looked at Carly and said: “We have to be okay with this decision. Please don’t feel any pressure from me to make any final decision today. We should continue to take each step and make one decision at a time. Today we have decided for you to see River in person.  I’m going to spend a few minutes with the doctor to make sure we have the best information. We know medical care can not save her. She is stable and the nurses have assured us that River is not in pain. Her dopamine levels are stable. Their goal is her comfort. She isn’t improving, but isn’t getting worse either.  However, we are still missing a few pieces of the emotional puzzle. If we need a few more days with River. I think that’s okay.” When we arrived, I asked the doctor...

Update 13: Thank you for your continued prayer and encouragement. Please encourage, think, and pray for us this afternoon. Carly and I will see River together at 1:00pm today.  It’s going to be hard.  We will get to hold her. It will be hard for both of us, but brutal for Carly. She knows Rivers true self. She did and incredible job gestating both the girls for 37 weeks. She has been holding sweet Miller for a week now. It has been a joy and a comfort for us both. I fed her this morning and she smiled at me. Maybe it was gas, but I’ll take what I can get right now. Her upper lip muscles hoist her little lip toward her nose. She still doesn’t have any teeth.  1:00pm today will be nothing like holding Miller.  River will not smile back at us, she twice size of Miller, and we will likely get tangled in her life support like the worm, bobber, and Hooke around Fielders fishing line on Saturday.  I’ve taken pictures and made videos of the walk into the hospital, the w...

I was swinging on the swing with Carly. I need to see River. I had just showered and needed to workout the schedule for the week and when is should leave today. Carly is recovering physically, and she has found her tears. Miller was sleeping peacefully, and Fielder played in the landscape around the house.  There is a medium evergreen tree that anchors the left side of the landscape and draws your attention toward the patio where we were swinging. When you are on the swing you look right at it. Fielder said, “dad that tree looks like the abominable snowman.” He loves Monsters INC. I encouraged him to go touch it and see what it feels like. Each bare foot was placed with surgical precision. He was avoiding the briars and weeds that surfaced since I’ve neglected the landscape over the last month. He said, “it feels like broccoli.”  As he tiptoed through the pine straw and weeds he talked to himself. Rather, he talked to his imaginary friends. “We got to be careful. There is mons...

After lunch the little guy was so tired. He often refuses to nap. Not in a roll on the floor kicking and screaming way. His tactics are more subtle and refined. He will say things like, “oh I’m a big boy and I don’t take naps anymore,” and then turn his back to you and continue his activity. Today it was, “daddy I want to learn! It gives me energy!” We use an app called Duo Lingo ABC each day. I shared it with April and Wanda on Monday so we could continue his lessons. For obvious reasons he has spent more time on it this week than normal. The iPad and iPhone are addictive. He tried to bargain with me. Everything is a negotiation. It’s hard to say, “I don’t want you to learn!” So I told him that if he would take a nap for his energy today that we could go to the pool when he woke. He got excited and ran up the stairs with nana for a nap.  Nana came down and said, “He is tired, but won’t stop singing.” I’ve seen this before. I pictured his eyes half rolled back in his head. His eyel...