Tomorrow is Wayland's Heavenly birthday. It is always an excruciating day for us, but honestly I experience more painful memories today, August 8, because that is when we realized Wayland was beginning to die. We saw his dying breath on the morning of August 9. That was painful for us to say goodbye, to live in a world without our son, but at least we knew that his suffering was over. This day 4 years ago, Wayland awoke from a restless nights sleep to shortness of breath. He could only perform small movements with his hands (he would sign his requests because he could not talk), the rest of his body was too weak to move. He begged for food and drink, but outside of a strategic syringe-full of fluids to the back of his throat (to activate his swallow reflex) we could not feed him because he would only choke. He was anxious and in pain and it took hours for hospice to find the perfect meds and doses to get him comfortable. He suffered an intense fever of 104 - 105. We begged to God to release him from his suffering. We begged Wayland to just let go so he could go play in the great playground of heaven. After 17 hours of Ben and I taking turns holding him, he finally let go. The suffering I remember from that day leaves me hallow. It takes my breath away. The promise of heaven is my only consolation.
I know there is suffering greater than ours out in the world and parents who stand by their children with lifelong and chronic suffering, but I still believe that witnessing your child's death is one of the greatest forms of pain a parent will ever have to endure. And Ben and I are not alone with this experience. New cases of DIPG happen every day with extremely dismal chances of survival. That causes my suffering to multiply a hundred fold. That this continues to happen day after day. There are so many days I want to give up on trying to help researchers find a cure. What can we do? I think, I'm not good at raising money. Our foundation is too little. Everyone seems to be too busy to care about one more need or cause out in the world. But then my mind goes to Matthew Chapter 5: "Happy are those who know they are spiritually poor; the Kingdom of heaven belongs to them! Happy are those who mourn;God will comfort them! Happy are those who are humble; they will receive what God has promised! Happy are those whose greatest desire is to do what God requires; God will satisfy them fully! Happy are those who are merciful to others; God will be merciful to them! Happy are the pure in heart; they will see God! Happy are those who work for peace;God will call them his children! Happy are those who are persecuted because they do what God requires; the Kingdom of heaven belongs to them!" To me, the beatitudes are one of the most mysterious teachings of Jesus. How will all those things make me happy? All I know is that God's promises are always fulfilled, even if not in the time frame I would prefer. So, I continue with the hope of God's blessing. We may not be the most successful foundation in the world, but in Wayland's name we will make ripples and the ripples can make waves someday.
In my pain today, I send a prayer up for the 150 children who will be diagnosed with DIPG this year, with very little hope of survival and who have very little support from the outside world. #hopeforacure