After becoming the mother of two children with Down syndrome, I learned very quickly that I was supposed to be a superhero or a special being. The world had huge expectations of me, and among the many phrases, one of the most empowering ones was the one that calls the divine choice of God along with the words: “God only gives special kids to special parents.”
I guess I fell for the attention, and somehow, for the first time, I felt as if I was doing something great. They say that children don’t come with instructions, and in the case of children with disabilities, not only are the instructions missing but the whole system seems to be nonexistent. Being creative and determined, but also highly obsessive and hyper, gave me the drive to make things happen, and my children became my world. My whole world revolved around them and only them for almost two decades.
It’s such an interesting experience because at one point, it feels like the whole world looks at you with admiration. They don’t know how you do it, and so they congratulate you for absolutely everything you do, even the things you know you are not doing right: such as not taking good care of yourself or pretending that you are not as human and that you don’t need or deserve time to rest and breathe.
I think at one point I got addicted to the adrenaline. My life became a roller coaster of deep emotions. I always knew that no matter how low things would go, eventually I had the power to go as high as I wanted if I kept trying. What I didn’t consider was how these never-ending self-imposed challenges would eventually affect my mental health.
And one day I woke up and looked around, and everything was going well, and suddenly, I stopped being in control because my children grew up and gained control themselves. One of the most painful realizations was that they wanted to spend more time with their father. So from having absolute control and keeping my life busy while trying to make them happy, I lost control, and because I didn’t have much on my own, I started feeling incredibly empty and lonely.
For the first time in so long, I had time to myself but I didn’t know how to be myself anymore. And instead of feeling free or extremely happy, I started falling apart. My anxiety levels went through the roof, and I started dreading the silence and loneliness of the weekends without them. At one point, I had to start pretending that I was fine because I wasn’t, and the next step was to look for help. A couple of months later, after weekly therapy, anxiety medication, and a lot of hard work for rebuilding my life as an individual and not as the mother of Emir and Yaya, I am finally feeling okay.
Just the other day I had the opportunity to give a short presentation on self-care to younger moms of children with Down syndrome, and while talking about it I realized once more how all things connect in the end. This part of my story, one that has been terribly confusing and disarming to me, is another piece that I can share with other moms as I remind them that the worst thing we can do in this path is to isolate ourselves in the attempt to include our children. Whether you are beginning the journey, in the middle, or more advanced, if you are not taking good care of yourself, or you have fallen for the fallacy that you are a superhero or more special than the rest: Believe me, you are not, and this is the perfect time for you to stop, breathe, and work on a prevention plan. Love for our children is incredibly powerful, but love can also push our boundaries and break us into pieces if we don’t balance it with love for ourselves first. If we don’t take care of ourselves, we will not be able to be for them.
