September last year I got the official diagnosis of Nicolaides Baraitsers Syndrome Disorder for my three year old son Iman. This was the third one but the most devastating.The Epilepsy and Autism diagnoses have nothing on his Nicolaides Baraitsers diagnosis. It is a very rare disorder, there are less than 100 cases reported in the whole world, it severely impairs his cognitive and speech functioning and has shaped my experience of parenthood in a very different manner than I imagined. This last diagnosis was the rainfall that dislodged my life and caused an avalanche under which I lay buried. I was in a desolate and terrifying place. The feelings, the pain, the heavy weight to be carried came so suddenly that I wasn't prepared. Iman has had nine seizures in total and every time he seizes he fights for his life. If for some reason oxygen doesn't go to his brain he will have permanent brain damage or if a seizure lasts too long it can be fatal. Not knowing what might trigger his next seizure or what his future holds has been the root cause of my anxiety and my panic attacks. Simply put, my well being is forever connected to the well being of my son's because he means the world to me.
You know that commercial about an anti depressant pill where a person who is slumped over is being followed by a gray cloud that is consistently raining on them, yeah well that isn't what depression/anxiety looks like for everyone. If that commercial was made about me it would show someone smiling, joking, laughing out loud and loving super hard. You'd also see me cry tears not just frustrated and defeated ones but also ones of joy, awe, and surprise. Anyone who follows me on social media would just assume I was fine, because my snaps have been of me galavanting all around town, no slump shoulders in sight. Depression doesn't always have visual clues, that's why it is so important to be kind always, others might be fighting a battle you can't see or understand.
On some days it's hard for me not to dwell on sad and morbid thoughts. I have to will myself to focus on joy and its not always easy to shake off the gray cloud that insists on following me. I used to try to find relief solely by spiritual means ie. prayer. Although prayer is very important, and calms my soul I have learned that I need to restore a healthy balance in all aspects of my being, the spiritual, mental and physical. So far some of the things that are aiding me in climbing out of the dark hole I have been dwelling in are:
1. Talking to professionals who understand my struggle and aid me by providing tools and coping mechanisms.
2.Exercising daily, making sure I am doing right by my body and therefore by the people who love and support me.
3. Going to sleep at a decent time, even if it means I don't get to write during the golden hours after Iman has gone to bed.
3.Clearing negative notions from my mind. Regulating my thoughts is no doubt a difficult task but with willpower it isn't impossible. I have to force myself to focus on the blessings I have, to ignore that desperate voice in my mind that tells me there is no hope and end in sight.
4. When I feel ready, share with others my raw and honest experience to increase awareness and help others empathize with mental health struggles that are invisible to the naked eye.
Add a dash of shopping, makeup, extra hugs, good news from Iman as far as his health and milestones go and tada Im managing the gray cloud a bit better
Story by Faria Khan,
Follow her journey on instagram, @faith_no_doubt