LAILA KAYUM

FAMILY OF THE HEART PRESENTATION
BOOK READING WRESTLING WITH THE GODDESS
A PERSONAL ODYSSEY By Azeem Kayum
January 15, 2005 at the North York Library
LAILA KAYUM
Over the years, many people have asked us how we have coped with the trials of caring for a child with special needs. All of us here have dealt with some sort of challenge and I am pretty sure that you will agree with me that when life deals you a hand, you have two choices:
1. Make the best of it. Or
2. Wallow in self-pity and hope the problem disappears.  
 
We were still in our twenties when Azeem was born and I can tell you that there was absolutely no way we were prepared for this journey. We were given a choice by the doctors – place him in an institution. In our minds, that was not a choice. After going through the initial shock, we quickly regrouped our thoughts and accepted the fact that God has his reasons for choosing us to cope with what, in our minds, seemed insurmountable.  
 
The guidance, strength and knowledge came from a powerful force. There were times my faith faltered, but that force pulled me back in line. Azeem’s prognosis was grim will never walk or talk – if he survives, he’ll be a vegetable.  
 
Friends drifted away. Were they really friends? Friends stick by you in time of need and so does family. We learned very quickly that our immediate family unit had to do whatever was necessary to nurture our child.  
 
Doctors counseled us on the impact a clinically ill child has on young couples. They told us it was normal to experience anger at each other, which could fester and cause separation. Instead, our trials brought us closer together. 
 
 
Before Azeem was discharged from hospital, we had to learn a great deal of medical procedures. Initially, we felt that it was difficult. The doctors tried to discourage us from taking our son home because he required around-the-clock attention. Night time ventilation, physio and occupational therapy and later on, speech therapy.
 
God gave us that courage, expanded our knowledge and gave us the strength to persevere. Household chores had to be shared. It was never your job or my job. Surely, fatigue stepped in. Yet, that strength came the next day to continue.  
 
Having a child who is brain-damaged is not easy to deal with. Coping with one who is normal and one who is challenged is even more difficult. With Azeem, many areas of his brain were affected. The very basic thing became an unreachable mountain peak. Learning was very difficult.
 
Things were repeated a zillion times. Concepts had to be simplified and taught. Most teachers had no hope. But, through hard work and God’s help, we have been successful. 
 
If we tap into the power we have within us, we will defeat everyday problems. By using that power and stimulating it with God’s power, we can create success.  
 
We know that Azeem believes that God is helping him. He faces a great deal on a daily basis – the mere thought of having to tell himself to breathe deeply during his waking hours is tough. However, he thinks success, he thinks of being the best he possibly can and he tries to think positive thoughts.  
 
If you sit around and believe that your life is about what happens to you, you are heading along the wrong path. It’s really how you react to what happens is what is important.  
 
A positive attitude and the desire to move ahead will create a chain reaction of more positive thoughts and results. You will ignite a spark that will create extraordinary results. We have seen it happen and we try to encourage both our children to think positive, look for positive  
outcomes and good things will follow.  
 
Today, Azeem seems normal to most people. However, he continues to need life support whenever he goes to sleep. I will end with a reading from his book. In my mind, he captured the true essence of what it feels like to retire each night with the chugging sound of his respirator.
 

Send questions or comments to Pervaiz Salahuddin