Hug your kids a little tighter tonight. I promise you no one will regret it. My idea to start this blog unexpectedly coincided with the declining health of my baby girl, Little Miss Junior. While not what I intended for my readers, this has given me a nice place to document what is sure to be a long journey.
Having arrived at the hospital on Sunday morning at 3am I never thought we would be here a week later. I have, in one week, become a hematology expert. I know about white blood cells (WBC), I know about red blood cells (RBC), I know about the serious – as low counts of these cells can indicate – neutropenia, leukemia, anemia, and the like. I know more than I hope you ever have to. To be as succinct as possible, LMJ developed an infection on her labia. It proved very hard to manage and in the process we discovered disturbingly low amounts of neutrophils, a type of WBC, in her blood. This week alone my less than 4 month old has been pricked for blood 9 times, sedated for a biopsy and bone marrow aspiration, on 12 different medications, been given two different IV sites and suffered multiple diaper changes a day that are so harrowing I have come to leaving the room at times to preserve my emotional health so that I can soothe her afterward.
I am heartbroken. She is just a baby – my baby – and this seems so unfair. At the same time I have had some very spiritual experiences this week. I am not a religious person, but I have, more than once, been struck with an awesome feeling of how lucky I am. In the midst of this living hell I feel blessed to be able to eventually bring her back to a loving home, a spunky sister and the most amazing husband and father. Outside of this nuclear family, not much else matters. We can be anywhere, doing anything and as long as it is the four of us I’m cool with that. There are so many people in that hospital that cannot say that.
I have been blow away by the teams of people with whom we are working. They are smart, respectful, good people who have had a calling to work with children and are realizing it at Children’s Hospital. My pediatrician is becoming a close friend and I have spoken to her on the phone no less than 35 times this week. She comes to visit my daughter every day, including weekends when she is not on call. She calls me from her cell to give me test results, talks me through difficult moments and has entertained every question that has popped into my head, welcoming me to call her day and night. She brought me tea and hung out in the hospital room for an hour to decompress, chat and just genuinely connect. Tell me that isn’t lucky?
I don’t want this to be happening but I do believe that adversity has the potential to create great strength and growth. LMJ has been so good-natured throughout this endeavor and I know that she has a lot to teach me. I make a vow right here and now to be open to learning every lesson right by her side.