I am becoming more and more aware that there are many major losses, besides just the death of my child, that need to be appropriately grieved through this process of losing Judson.
Clearly the most significant and obvious area of grief is my personal loss of my little buddy with whom I spent the majority of my waking hours: playing, chatting, teaching, laughing, learning, singing, and living life together. With his absence there is a huge vacuum in my everyday life. Very little I do and very few places I go are void of memories of Jud. Everything feels incomplete without him.
Yet, separate from his death, I am also grieving the intense suffering that Jud had to endure during his last months on earth. Completely powerless to help, I had to watch my son, who was very aware of his deficiencies, experience the most wretched affliction. These mental pictures are so severe that they send me writhing in pain with each thought. My inability to rescue my Jud Bud from the disease that consumed his body causes such acute grief.
I am grieving the loss of Jessie’s big brother. In all my playing, chatting, teaching, laughing, learning, and singing with Jessie, I imagine what it would look like if Jud were present too. Of course she will grow up knowing she had a brother, and may even have a sense of him throughout life, but I grieve that she will never tangibly experience or have lasting memories of true relationship with her older bro’ who loved her deeply.
I grieve that I am a carrier of this vicious disease. Though it was completely out of my control, I hate that this offensive gene mutation/deletion resides in my body and was passed along to my offspring. I despise the fact that this physical symptom of evil was unknowingly in my chromosomes. I mourn the horrible consequences of this genetic defect and grieve the fact that I cannot eradicate it from existence in my, Drake’s, or Jessie’s body.
I am grieving that the very nature of this genetic disease makes the possibility of having more children too risky. Though we would desire to have another biological child, it would not be prudent. So much like the barren woman longing to be with child, I must grieve that having another baby would put our family at too high a risk of being afflicted with Krabbe again.
I am also grieving spiritually. After praying and believing that God was going to heal our son, I deeply mourn the fact that He did not. In the wake of Jud’s death, I am trying to reconcile the character of God, the truth of His Word, my experience as we beseeched him for healing, and the reality that my son is now gone. I don’t know why God chose not to heal Jud, but I experience profound grief over the fact that He didn’t exercise His power in this manner.
Each one of these losses is significant and requires real mourning. There is much to grieve. I am learning to accept that this road to healing will be long and arduous.