Ryan has become a bit of an acrobat these days. He woke up this morning at 3 AM and propelled himself with a front flip out of his pack 'n' play then proceeded to turn on the lights. He was very proud of himself. While Ryan's speech is still limited, he masterfully said: "light!" We [...]
A year ago, I woke up to the news that Ryan was terribly sick. His liver was failing from complications of the chemotherapy. This was causing his kidneys to also fail. He was struggling for every single breath. To complicate things further, he had infection and no immune system to fight it. There was an [...]
On Friday, I attended a conference about sickle cell disease at Children's Hospital in Los Angeles. Sitting in a crowd of leading experts in the field, both from the medical community as well as patients and families living with the harsh reality of the disease - I had the unique role to represent both as [...]
One year ago, our family of seven boarded a plane from Kenya on the most unlikely of journeys. In search of healing, we left behind so much of what we loved for the hope of what might be ahead. What a wild ride it has been. Oh, the grace of God has accompanied us with [...]
"Sun-friend is following me," Geoffrey says with delight. A moment of play sandwiched between being "too tired" and another dressing change of his central line that is "too scary". Healing takes time. Patience. A waxing and waning between health and wholeness and just not quite yet. A hope of freedom to play outside with siblings [...]
On this Monday morning, Sharon started middle school. She sang, "I just can't wait to go to school," to the tune of Lion King as walked her into 6th grade. There is so much excitement and desire to learn within her. We prayed as we walked. When we reached the gate of the school, I [...]
I slept on my comfortable couch next to Geoffrey last night. We are in a new room to us with many windows and a courtyard view. We are quickly running out of rooms on the hem-onc floor that have not been a temporary home for one of our three kids. I am not convinced that [...]
Over the past few weeks, there has been need and space to feel much of what we have been living for the past year. The emotions are rich and complex. There is exhaustion and grief from the toll of chronic disease, from the frequent hospitalizations. There is the awe of two little boys who no [...]
"It's my happy birthday!" These words, with great delight, are about to be spoken numerous times today by our dearly loved little boy, Geoffrey. We don't know exactly when Geoffrey was born or how old he is, but this is the date that was created when a birth certificate was being made, July 10, 2014. [...]
By nature and by habit, I am a planner. I like to be organized, have things well thought through and coordinated. I pay attention to details. Procrastination makes me antsy. I like to follow rules. Most of the time this is a strength, but this season has not left room, physically or emotionally, to get [...]
Juli Mcgowan Boit 