Rare Mom Health Story: Irritabilità - un sintomo dell'essere una caregiver rara
By Annie Harper
The most surprising aspect of my mental health journey has been my quickness to irritability. I’m still very frustrated with my lot in life: my child has Joubert Syndrome; he has no mobility or speech, life expectancy is unknown, and it’s unlikely he’ll enjoy an independent life during adulthood.
Allora perché mio figlio? Questa sottile domanda scatena l'irritabilità e può manifestarsi involontariamente nelle interazioni con i miei figli normodotati. Perché il loro fratello? Sento che dovrebbero capire, ma perché dovrebbero? Come potrebbero, se anch'io sto ancora elaborando la cosa?
Loro sono ragazzi che si comportano da ragazzi e io sono ancora un lavoro in corso, che cerca di dare priorità alla mia salute mentale attraverso un appuntamento bimestrale con un terapeuta gratuito, grazie alla June Jessee Memorial Foundation (JJMF).
Mental health can take on many different forms. Irritability is what I am managing now, but in the beginning, it was anxiety and PTSD. When our youngest son, Joe, was diagnosed with Joubert Syndrome during his 20-week ultrasound, we were very unsure about the viability of the pregnancy. We prepared ourselves for the possibility of not meeting our child. This was the first time that I experienced a panic attack. Shortly after Joe’s arrival, we suffered another traumatic experience that landed him back in the NICU due to breathing complications. After many weeks of uncertainty, Joe left the hospital. However, I experienced many post-traumatic stress episodes while learning to transition into a pandemic world with a newborn on oxygen.
Fortunatamente per me, la June Jessee Memorial Foundation e i suoi fondatori hanno percorso questo cammino prima di me, rendendosi conto della necessità di fornire servizi di salute mentale gratuiti a chi si occupa di bambini neurologicamente complessi, in modo che i genitori come me non debbano sopportare l'onere finanziario associato alla consultazione di un terapeuta.
Annie Harper is the wife of George and mother of George, Mac, and Joe, and a board member for the June Jessee Memorial Foundation.
Learn more about the June Jessee Memorial Foundation here.
