I just came out of the kids' room. Oliver was fussing and I was afraid he would wake Waverly. There is something magical about watching your children sleep. I love making sure they are all snuggled under their blankets with their favorite stuffed animal tightly grasped. The sound of their steady breathing is musical. Tonight the sadness overwhelmed me and I wept standing between their beds. This disease is so unfair, so cruel. I am still shell shocked that we are in this situation. One day, much too soon, my children are going to leave this life. The pain of losing both of my children will be with me forever.
On Friday I met with a woman from the county about a waiver for the kids. At one point she mentioned that they will age out at 21, but there are other programs that they will be eligible for at that point. Of course I didn't say anything and make this poor woman feel terrible for something she could never have known, but I froze. I nodded my head and the conversation came to a close. I just kept thinking that my kids aren't going to make that milestone.
As I watched them sleep tonight I felt like such a failure. I am supposed to protect them. I am supposed to keep them safe. I feel so helpless. My babies are slowly dying and there isn't anything I can do to stop it. I am so angry.