I'm typing this as I sit at Children's Hospital of Wisconsin with Jack, passing the time as I listen to the pump that is delivering his monthly IVIG treatment into his veins. Jack is busy watching a Baby Einstein DVD of all things, and I'm left to think.
Next week marks the three year anniversary of our first infusion. It was the day before Thanksgiving when we got the call alerting us of Jack's immune deficiency and informing us that we had to come to Milwaukee immediately and spend the night while Jack received his first treatment. Imagine our horror, not even three weeks after burying our oldest son (whose cause of death and autopsy results had not even been made known to us yet), to learn that our other son also had a potentially life ending disease. I was numb. I never wanted to set foot in this hospital again, but I had no choice. In a matter of hours I would be walking that same skywalk that I walked out three weeks earlier to a car that still held two car seats though only one of them would ever hold a child again. I cried as I turned off the highway and saw the building come into focus. I cried as we walked the skywalk to the desk clerk who told us which room we were being admitted to, and then again when we passed the large bank of windows that looked over the helipad where Henry's little body was resuscitated the night of November 1. Needless to say, it was a difficult trip.
We learned at that visit that Jack had Bruton's x-linked agammaglobulinemia, and that these visits would be required every three to four weeks to build up and maintain a sort of false immunity in him. Though they would no longer require overnight stays, they would still be all day endeavors and required a good number more visits to Children's Hospital than any parent ever hopes to make. I felt sorry for Jack, who would have to endure these treatments and pokes for the rest of his life. I felt sorry for my husband, as I saw the emotional strain this placed on him and, I'll admit it, I felt sorry for myself. I didn't ask for this. I didn't *want* this. This is not what we signed up for when we decided to have children and start a family.
All of these visits though - I'm estimating about 40 so far, as we started coming every three weeks and then switched to every four weeks - have given me perspective. I am not alone. I am confident that every patient and patient family that walks through those doors wishes they didn't have to. I've also learned that despite how devastating our situation is, it could still be worse.
Today's treatment is winding down, and I will walk out that same skywalk as we return to the car. I still think of Henry, and mourn that loss every day as I will until the day I draw my final breath, but I know that he is with me both now and always and there will be no tears today. I don't feel the overwhelming sense of loss anymore when I walk through these hallways. I feel hope, comfort, kindness, and empathy. Time has eased nothing, but the perspective God has granted me these last three years has afforded me the opportunity to adjust the weight of grief and make carrying that weight a little less burdensome. For that, I am grateful.