10/10/2026
Special needs parenting comes with its own guilt package. Well it has for me.
These school holidays I have realised that I have not allowed myself to feel joy for so long, like real deep joy.
I constantly feel like I donāt do enough for our girl, like itās so ingrained in me to ensure she is happy all the time. And when she isnāt I blame myself, I think what do I need to do to fix this for her. Itās like I have surrendered living because I canāt fix it for her. I canāt fix her life the way I want it to be, I canāt change that she has good days and bad days, donāt we all. I feel like I have been holding my breath for so long, running on if I fix every micro detail I wonāt have to feel the pain of watching her live with Rett.
Itās so fā¬cking hard on my heart. Iām so hard on myself. Like this kid is tracking just like any other tween wants to listen to her music,
Wants to hang in her room, has a crush on a boy in a music band, living her best life and I still feel like itās never enough. So here is the kicker literally, I am starting to want to live life again, I am starting to feel joy that I canāt control, like my heart bursts with joy lately and I have been feeling so guilty about it.
I created a rule that if I live as a martyr I can live with the pain and guilt. The bible talks about martyrdom, I have taken a personal vow to give my life, but to be honest itās not a healthy vow, for her or me!
It is no longer sustainable.
I feel guilt for having support, like I donāt deserve itā¦but the reality is I have to let go, I have to let new life breathe into our lives, I have to accept what is and have faith that as my joy returns she will also benefit.
Our ankles are said to represent moving forward and accepting joy. Ironically my ankle has been playing up for a few weeks, I do believe in the psychosomatic connection of our bodies and our mental and emotional state. I also believe spiritually I am being shown that I need to move forward, move toward joy and life. It is time to let go of my martyr identity.
For her, for me and for the life that we have, not the one I had wished we had, had! šš©·