Wheel of Fortune (Rueda de la fortuna)

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Tere Jimenez, mother of Santi – Mexico

(Editor’s note – this has been translated from its original Spanish version, Rueda de la fortuna.)

I have been in psychological therapy for approximately 4 years. I started going when my child entered elementary school. It was a difficult change for me – along with being a mother, I am a teacher at this educational level, and I know what it entails.

I started therapy at the suggestion of my mother, who at that time noticed that I was already tired and unable to manage my emotions well. My mother has degrees in human development and thanatology. I mention this because, despite the fact that I said I felt fine and that I worked hard for my Santi, undiagnosed at that time, my mother asked me to talk with the psychologist. I refused many times until I was finally ready to go, even though I still didn’t feel the need.

I remember that first meeting. I cried for the entire time. The second time, I was able to talk a little more about why I was there. Thereafter, though I still cried, my tears were different.

During one of my many sessions, he asked me what kind of music I liked, and I answered. Later, he asked me when I last listened to my favorite music. It took me a while to answer, and I burst into tears because I didn’t have a date… It broke my heart to realize that I was forgetting about myself. I no longer painted, I rarely went out, I had not visited the stylist in years. The simplest thing to enjoy for myself was to listen to music.

Mothers of children with a disability must give more of themselves to see our children advance, to take care of their siblings, to be aware of home, and work. Many times we forget who we are – our minds, dreams, or tastes.

In therapy, the time came when I felt very good. I was making progress, and I could talk more openly about many things. My psychologist told me that for moms like me, therapy can become like a wheel of fortune. He commented that I might need therapy through each new stage of my son’s life. At that time, we still had not received a diagnosis for Santi or whether it was degenerative; whether the advances I was making would become smaller and smaller, making me have to return to therapy in later months.

And so it was, when I came to believe that now I had to take more time for me and that somehow things were progressing … the pandemic began! It brought situations that were no longer in my hands to control. I returned to therapy but now to learn how to cope in the midst of my unconventional family in the midst of a global pandemic….

I have returned to therapy multiple times for different reasons. Each time, I come to know myself better. Every time, I learn to manage what surrounds me. As a SYNGAP1 mom, I ride on that wheel, enjoying the view when I’m up there and trying not to despair. When things change and I’m down, as when my little Santiago doesn’t sleep or when some stronger symptoms of epilepsy appear, I know I’ll have good times and I’ll try to create them even in difficulties.

Also, I understand that it’s okay to not be okay sometimes. The important thing is to move on.

I have been learning everything with my psychologist, but there are still things that I must handle better.

This message is to invite you, the reader, to go to therapy, meditate, or do some kind of activity that keeps you focused and helps you feel more and more fulfilled.

Being SYNGAP1 parents has put us in a place that is little known or explored. We feel (or at least that’s what happens to me) that it is up to us to solve everything. Sometimes I feel lost since there is no treatment for the disease. I feel that I have little scope to continue making the disease known, and I get frustrated.

That is when I place myself on my imaginary wheel of fortune. If I feel that I am going down, I try to find a way to think positively and take myself back up.

SYNGAP1 parents and also to others:  if we want to have resilient and courageous children, we must first be well ourselves. This can be achieved in therapy. Lose your fear, recognize that we cannot handle everything on our own.

Many times a little help makes life easier.