My heart is broken, shattered to pieces. I miss my sweet boy so much. School is coming to an end for summer break soon and it’s been really hard on me emotionally. The loss of our youngest child mixed with the emotions of our other 3 growing up have had me very sad lately. I could never stand the thought of my kids not needing me a lot. Now I’m not saying they don’t need me, but they are all becoming very independent and self sufficient. Payton still needed me to reach the plates for him, help him cut up his pork chops, pour the milk for him, double knot his shoes, style his hair a certain way, tell him how to spell a word, remind him how to write a “b” and “d” the correct way, tell him if the Uno card was a 9 or a 6. He still needed me to pretend that Santa and the Easter Bunny were real. He still had 25 baby teeth to lose. All of that is gone. Before he got sick, I was struggling with him going into first grade, learning how to read and write, and being able to dress himself and make his own toast. I was having a hard time with my baby growing up. Now all of that is gone and I just don’t know what to do with myself.
Our oldest will graduate high school around this time next year, our middle son is going to be a sophomore this fall, and our daughter starts middle school. It feels like we missed out on 4 years of “little kid” life, that we will never get back.
Keeping busy feels like the only way to cope but then it’s like I feel guilty for “trying not to think about him” and wonder if it’s unhealthy to grieve this way. It all hurts so much. I remember him saying, near the end, “It hurts too bad”. I asked God to give me Payton’s pain. As much as I want him back, I wouldn’t want him to be in any pain and I sometimes tell myself I am living with this pain so he doesn’t have to.
Being in this position teaches you so much, as well as changes who you are. I have developed new characteristics to my personality, some good, others not so good. I have always had empathy but my empathy for child loss has become deeper than I ever wanted to imagine it could be. My relationship with God is stronger than it’s ever been (even with the anger towards him at times). I have been asking God to help me to not become a cold person because of my loss. I’ve found I have no time, nor care for “bullshit”. I have become a more “to the point” person who could deal without details…not because I don’t care but because my priorities for what is important have changed so much. Living this nightmare makes things that may be “big” to some, seem so small. I’ve become less sympathetic to others who have lost a parent or spouse, especially if they lived a long life. I don’t like this new characteristic, but it’s there and the reason is because I would have traded my husband or my mom for my son, in a minute (they both know this and understand completely). It would not have been easy by any means, but it would have been more natural in the cycle of life and I could have lived with that with a little peace of mind. This loss is so wrong, and unnatural.
DIPG just keeps taking babies from their families, leaving them to try to survive the unthinkable. I know God did not give Payton cancer, and I keep praying God will put the right things/people into place to end DIPG. Several friends have asked me “how are you doing it?”. I really don’t know, I just am, I have no choice. My husband and I love each other and our kids, love keeps us alive. I know 100% we would no longer be a part of this earth if we did not have 3 living children who need us. I do wish they needed me to reach the plates or pour the milk for them, but I’ll take driving them around, being there for them to talk to, loving them, and teaching them to be good people for now.
Photo: 1st day of school this year. Payton’s last “First day of school” photo 😭 This was before he was diagnosed, but he had the “head tilt”… we weren’t sure why he was doing it. We know now it was the tumor.