All that matters

The early morning began with a care partner taking Ryan’s blood pressure at 4:30 AM. In my mind, I grumbled about how sleep is required for healing and that there needs to be a charting option for the number of hours the child has slept, in addition to the thousand other boxes that require filling in. In the middle of my internal rant, Ryan cheerily said: “hi.” I knew that was the end of the night’s sleep and replied, “Good morning, sweet Ryan.”

By 7AM, Baba Ella (Titus) and Senge (Titus’ sister, Linda) had arrived to the hospital with Geoffrey and Sharon. Our dear friend Mel, who we lovingly refer to as Baba Micah, chauffeured our small tribe yet again down the 405 to UCLA while Mama Micah stayed at home to care for Ella. There is absolutely no way to do all that is required of our family right now without a village, and we are overwhelmed with gratitude for the gift of ours.

We ate a quick breakfast with the kids in the hospital cafeteria before heading to their hematology appointment at 8AM. Sharon needed to have an EKG, chest x-ray, physical exam and to give assent for the harvesting of her bone marrow. No small ask of anyone, let alone an eleven year old. By 11AM, I laid beside and held her tightly as tube after tube of her blood was drawn to complete the screening process leading up to transplant next week. As I laid with her, I was moved by all of the sacrifices required, the beauty and brokenness of this journey.

Geoffrey’s doctor’s visit revealed his scans are showing increased risk of him having another stroke. Sigh.  The doctor explained that Geoffrey needs to start receiving frequent blood transfusions to reduce his risk until his transplant can be completed. In addition to the weight of this, Geoffrey’s labs are showing that something is wrong with his liver and so an abdominal ultrasound would need to be completed later in the afternoon. More labs were drawn from his little arm, in the hope of understanding more. At 1 PM, I laid beside Geoffrey on the “airplane bed” as the technician put jelly all across his belly. Thankfully, he wasn’t afraid and draped his arm across my neck to hold onto me as the study was completed. When we finished, he told the technician, “thank you,” and was given a sticker.

Baba Ella and I sent Sharon and Geoffrey home with Baba Micah and Senge and headed back up to be with Ryan as he received another exchange transfusion. This process involves a fancy machine and skilled nurses to take out Ryan’s blood while giving him two units of someone else’s. The goal is to reduce the percentage of sickled cells in his body leading up to transplant. At 2:15 PM, as this transfusion began, I climbed up into Ryan’s crib and laid beside my restless toddler. When the treatment was finished, Ryan was discharged from the hospital and was allowed to go home for the first time in 10 days. It felt good.

We know we are going back soon, but the few days break was most welcome.

We reached our temporary home at 5 PM. It was so good for my heart to watch of our little one’s faces light up as they saw each other again.

At 7:30 PM, while Senge took care of Ryan, I put Geoffrey and Ella to bed. I like to refer to these two as my four year old twins. I laid down beside my Ella and listened to them say their prayers. May the grace of our Lord Jesus Christ, and the love of God, and the fellowship of the Holy Spirit be with us now and forever more. Amen.  Oh, let it be.

After everyone was asleep, I crawled into bed and was sleeping myself in about 30 seconds; but one final phrase flooded my mind: the only thing that counts is faith expressing itself in love. It felt like the kindness of God putting a period on a long day, whispering a reminder of all that matters.

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2 thoughts on “All that matters

  1. In the future, you must write a book, my friend. Your ability to find and express gratitude in the midst of chaos has a contagious impact! Your beautiful, your family is beautiful and I am amazed at your strength and endurance. Praying for God’s hand to continue to guide you, the doctors and all the specialists involved! Love to you all!

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