Raising a challenged kid is a blessing not a burden

Five years ago I watched a movie called “127 hours”, based on a true story of a mountaineer who got trapped in the mountains when a boulder fell on his arm. He was stuck there for five days.

In the movie, James Franco said something that stuck in my mind ever since. He said, “This rock has been here waiting for me since I was born, and everything in my life has lead me to it; lead me to this moment”. I was fascinated by this epiphany, and it came to my mind when I had Tala. When it was really dark, and everything seemed impossible, this thought popped in my mind.

Tala has been waiting for me since I was born; she was a floating soul waiting for me to grow up and have her. Everything I went through in my life has lead me and prepared me to have her.

Then I went deeper into this thought. I thought of my mom. How she raised us. My mom taught me independence since I was a child. If I had a problem at school, she would sit and talk to me and advise me, but she never took matters into her own hands. She guided me to handle my own problems myself. She encouraged me to enroll in any school performance –stand on stage and talk confidently, loudly and clearly. She used to practice with me how I will stand in front of the whole school, and say the morning words without shaking.

My mom encouraged me to work when I was in high school. My mom encouraged me to read a lot. If I want to know about something, then I go to the library to look for a book that covers this subject and read about it. My mom is the biggest reason I’m prepared to handle Tala. I learnt ever since I was in grade one to take matters into my own hands. I learnt to find a way to solve my problems. I learnt not to be scared to ask, and to face anything that comes in my way.

I learnt to look up information and research; not only depend on what people tell me. This made a world of difference with Tala. My mom had her share of challenges herself. I watched her rise above her problems and be the fun, loving mother that she is. Not only that, but she is successful at her work as well. So I too will rise above Tala’s challenges and have fun with her, and love her and be successful at my job.

I studied pharmacy. Back then, I knew I wanted to be a teacher; it’s my passion ever since I can remember. So a lot of people asked me, “Why trouble yourself with pharmacy if you want to be a teacher?”

Back then, my answer was I loved science, and specifically chemistry, which wasn’t really a satisfying answer. Now I know why I went to the faculty of pharmacy. I have a slight medical background. I used to read a lot of books about medicine, which made it easier for me to understand medical terms used by Tala’s doctors. I know how to ask them questions. When I read an article about genetics, or any medical journal that will help me in understanding Tala’s case more, it’s easy for me.

I work as a teacher now, and sometimes people wonder, why leave pharmacy and become a teacher? Being a teacher taught me patience; taught me that there are a million ways to reach a person’s mind. It helped me a lot when I work with Tala. I have the capacity to handle her slow ability to grasp certain concepts, because I deal with that every day with my students.

Being a teacher taught me scheduling and managing time, and any mother needs these skills with her kids. Then I took a homeopathy course, which is a holistic approach of alternative medicine. This course taught me that each person is unique in their own way, and that you have to deal with every person’s symptoms like it’s their own set of symptoms. Don’t put your expectations, or your beliefs, or what you learnt into the patient’s experience. Listen only to what they have to say.

This made me look at Tala the same way. She is unique. She is literally unique. She’s the only reported case in Egypt, and number seven in the world with this genetic disorder. But I learnt that I don’t put my expectations, or my vision, of the perfect child on her. I learnt to see her perfect traits and enrich them. I learnt to see her the way she is, and not the way I want her to be.

It’s a lot of work and not a walk in the park, definitely. There are a lot of days when I feel like I’m in a whirlpool, being sucked down and not able to breathe. But then, they are days that pass by like any other day. Life has to go on, and the earth will never stop turning. So enjoy your ride while you’re on it, because your whole life has lead you to where you are now. So be sure that you are well prepared to handle whatever comes your way. Allowing yourself to break down and cry and feel miserable is part of handling it. Just be sure to get back up and ride the wave to the top again.

This is how I saw my life and how it took me to my beautiful Tala, who was hanging around the corner the whole time waiting for me very patiently. I encourage everyone to look back at their life, and I’m sure you will discover a lot about yourself that you didn’t know, or maybe you knew but didn’t really realize it at the time.

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