Going to bed at night is such a dreadful part of life for me now. The moment my head hits the pillow my mind starts going and my heart starts hurting. I think about all of the nights Payton slept with me for the 6 months post diagnosis. We had a routine. Jason would tuck Payton in first then I would untuck his feet to rub oils on them. Then I would put his oils on his head and neck before making my way to my side of the bed. Some nights we watched a movie or half of a movie, other nights we watched Blue’s Clue’s. We watched every “Air Bud/Buddy” movie ever made. We’d laugh together at the talking dogs and say which one was our favorite. We would compare each movie to the last and point out the diffrences. If there was a sad part, Payton would say “Awwwwe”. I miss that “Awwe”. Payton was such a sensitive and caring boy. While watching Blue’s Clues, we would try to figure out what the blue dog wanted to do, eat, say, etc each episode and discuss whether we thought the dog “Magenta” would be in that episode or not. I played along and Payton got so into it. I loved seeing him get so excited to point out a clue in the show. Then he would sit up and take his shirt off (with his mommy’s help), then give me a grin and roll to his side for me to scratch his back. He never went to sleep until he told me goodnight and gave me our special goodnight kiss and a great big hug. I made it a point to hug him as long as he would hug me. I miss those hugs so much it hurts, physically hurts and makes me sick to my stomach. Then we’d argue who loved who more before settling to sleep. Most nights as he was going to sleep he would hold my arm or my hand. I think it was comforting knowing I was close by. Sometimes after a few minutes of silence, I’d hear his little voice, “Mom?” and he’d ask me something or tell me something like “you forgot to turn the closet light on” or “Where’s Paisley?” or sometimes something deep like “Do you think Grandpa’s mom knew who he was when he went to Heaven?”. The last 2 nights of his life, our routine was abandoned. He was sleeping so much off and on, it was almost like bedtime all of the time. I hold onto guilt for this in some ways. I wish I had rubbed his oils on his feet…that is the one thing that really bothers me. It seems sort of dumb but I feel like I should have done that his last 2 nights although it didn’t cross my mind those nights. Things were just changing too fast and my thoughts were a mess. I miss my baby so damn much. Night time was our 1 on 1 bonding time and although I talk to him every night, before I even talk to God, it’s just not the same. His time ran out way to fast and I find myself so angry at this. I see other children running out of time because of DIPG too and it literally sickens me because I know the deep pain that comes after watching the child you carried in your womb suffer, then leave this earth too early. 7 years was not enough. It will never be enough.
Payton Strong 