Gratefulness in the Midst of Grief

It's been another fairly uneventful day, and we are thankful for that. Samuel has been pretty stable for the last day or so. He had some irreguar heartbeats this morning, but they have stopped. They weaned him just a tiny bit on the oscillator, and he continues to get a small amount of breastmilk on a constant drip. When we called at 3 am last night, he had just had a poor blood gas result, and Bryan and I spent an anxious 15 minutes waiting for the nurse to call us back with another test. Thankfully the next test was much better.

This morning Mom came to the hospital and spent a few hours at Samuel's side while Bryan and I spent some time with Caleb and Joel. We had "Pancake Saturday Morning" like usual, and Bryan was grateful the boys requested easy shapes -- a "Z" for Caleb and a "pop-pop" (lollipop) for Joel. We played with the boys and tried to get some quality time with them. After lunch, our friend Libby picked them up to go to a birthday party. Caleb didn't want to go -- he wanted to stay with us. But both boys had a grand time at the party, and Bryan and I headed to Egleston for the rest of the day.

One of our favorite nurses was on today and caring for Samuel. I was asking him about Samuel's pulmonary hypertension, and he told me that on rounds this morning, the doctors were taking about the likelihood of a child having both a heart defect and primary pulmonary hypertension. Apparently 1 in 50,000 live births has a heart defect, and 1 in 50,000 live births has primary pulmonary hypertension. According to nurse Richard, that means 1 in 2.5 million babies (though Bryan thinks it is 1 in 2.5 billion) are born with a heart defect AND primary pulmonary hypertension. That doesn't even take into account the coronary fistulae which the doctors have never seen in an infant or his hemangioma (we haven't mentioned this most recent theory yet) which they have never seen on a heart. Yet again we see the uniqueness of Samuel! Everyone here comments on how Samuel likes to do things differently -- different treatments, different results, different diagnoses, etc. He's one of a kind, for sure.

Bryan's two bosses and special mentors, Bill Willits and John Woodall, came to the hospital today to pray over Samuel. It was comforting to have someone stand over Samuel's bedside with us and see a glimpse of our days and our precious boy. It was great to have them pray with hands on our little one. It lifted our burden a little today and made Bryan and I both think of Galations 6:2, "Carry each other's burdens and in this way you will fulfill the law of Christ." We saw that in action today.

Today also marks the 17th anniversary of Bryan's mom's death. His memories of that day are more tangible as we sit by the bedside of our sick son. As we reflect on death and life, we find our faith being stretched and our hearts heavy. I was telling Bryan this morning that God is asking a new kind of faith of me. In my story, my heartbreak and woundedness has all been from people's choices, and though I can't understand what motivated them to make those choices, I can understand sin and how God's gift of free will can result in pain and suffering. This time, however, there has been no sin, no betrayal, no human choice involved. God simply made Samuel this way, and though God could have made him differently and could even now heal him, so far God has chosen to give Samuel this sick heart and these sick lungs. It's requiring me to trust God in a new way -- to trust that He is good even now and even in these circumstances, even in this design of Samuel. God is growing and stretching my faith for sure.

One other nice thing about today was something I think I can thank nurse Richard for. I broke down crying to Richard earlier in the day while Bryan was walking John and Bill out, and I had a splitting headache this afternoon. Richard noticed my less than stellar status, and this evening a woman came over to our area and asked to borrow me for 20 minutes. She said she needed to give me a neck and shoulder massage! It was the most restful 20 minutes of the last week for sure. Apparently it's her fulltime job to give massages to parents in the hospital. What a wonderful thing it was to be cared for in that way and so unexpectedly.

We're about to head home for the night. It's easier to leave our sweetie when things are steady and he's looking well. We're crazy about this child. In the midst of all this trial and heartbreak, I am repeatedly struck by how much I have to be thankful for. I spend my days beside a son I love, I walk this road with a husband who loves me and our family and who points us heavenward every day, I have my mom at home taking better care of Caleb and Joel than I could at this time, and I know my God as we travel down a road I wouldn't wish on anyone in the world. I often look around me at the hospital and hurt for the other parents with sick kids. How many of them don't know the peace that passes understanding? How many are walking without the love of a spouse? How many are lacking the firm foundation of Christ under their feet? Though I would never have chosen this road, I find much to thank God for as we journey down it. I pray I continue to remember His goodness regardless of what is ahead.