A Letter from a Mother whose life is a Cliffhanger

Dr. Fozia Cheema is a pain management physiotherapist at Copenhagen University Hospital, Copenhagen Denmark.

By Dr Fozia Kamran Cheema

When I was a young girl, I once heard that in Japan hundreds of small earth quacks come every day. And I always wondered how people managed to live there, are they not always afraid of the next coming earth quack. A life with constant fear, from one earthquake to another.

Normally if you are afraid of something, either you hide from it or you face it. With epilepsy, you cannot hide, and at the same time, you do not want to face it.

The day Tusbeeha (my daughter) got her epilepsy diagnosis, was exactly the day I got admission to “the school of fear “. I learned many challenging things there and one of them was to live with constant fear.

Even your dreams are filled with fear. Normally if you are afraid of something, either you hide from it or you face it

All of us know fear in one way or another, but that was a very different kind of fear, one which does not go away. When your life is not divided into hours, months, or years. It’s from one seizure to the next one and then to the next. When you are sleeping, fear is there. Even your dreams are filled with fear. Normally if you are afraid of something, either you hide from it or you face it. With epilepsy, you cannot hide, and at the same time, you do not want to face it.

You do not want seizures (seizures represent periods of unusual behavior, sensations, and sometimes loss of awareness caused by epilepsy) to come but there is no other way to get over your daily seizures. Fear does not leave you on the ground, in the water, or even in the air. It becomes a part of your identity. This fear is a mixture of not being able to breathe but still suffer in every cell of your body.

Healthy children are blessings. But do you know what is better than that?, a child who was born sick but then by Allah’s grace becomes healthy again

When I was a young girl, someone told me that there is no bigger blessing than a healthy child, boy or girl, a healthy child is the biggest blessing of all. I believed in that till I got two sick daughters, big diseases, big diagnoses, big names to remember, long hospital stays, and then big miracles.

Both of them were sick, very very sick, and then they became healthy and happy, both of them. My life changed from packing medicines and injections to almost forgetting about those horrible nights and days at hospitals. I wanted to tell people that healthy children are blessings. But do you know what is better than that?, a child who was born sick but then by Allah’s grace becomes healthy again. That is a blessing only for the near ones, for the blessed ones, because then you can cherish every single moment of your life.

Every sentence, every step, every tone, every breath, every accomplishment, and even every failure becomes a joy. As you can only fail when you are facing the real world. You cannot fail in the hospital bed, so failure becomes a pleasure as well. Life becomes a real fairytale, and light feels much brighter after you have seen the depth of the darkness.

And I was not a very young girl anymore when I heard that children who were cured of cancer, and are finished with their last chemotherapy, ring a bell, and with that bell starts a new journey of hope and happiness.

In the last two years, since Tusbeehas brain surgery, I was waiting to ring that bell every single second of my life. Not that chemo bell, but Tusbeehas last tablet/medicine bell. Every single morning and evening. I was counting the tablets, from 18 to 17 to 16 and 15 and so on. With every tablet gone, I waited for an earthquake/seizure and it did not come. I hoped and prayed for that last EEG, last MRI, last lovely visit to the doctor, last ambulance tour, and then finally experience that last feeling of fear for one last time. I counted the seconds and nanoseconds without a seizure. Some nights I woke up and cried with joy. Then slowly I learned to live with our new normal. I almost forgot to ask Tusbeeha, have you had a seizure in school? One by one I left the epilepsy support groups. I stopped mentioning to people the hardships I and our family went through. Me and Tusbeeha also began to talk about the “forbidden word”—- epilepsy. I remember we even started saying sentences “if you still had epilepsy, then it was not …”

Then I did what everyone would do, no matter what faith they belong to. I started trading with God

I also sent Tusbeeha to her first three-days alone trip, we laughed and said “thank God that stupid sickness is gone “

One last, the only tablet was to go, rest were done.

In the last Ramzan, one-day Tusbeeha said to me,” Mama I have a weird feeling in my head“.

Even though it was the same sentence, she said in 2011 when she got her first seizure. I did not want to believe that. It cannot be true, doctors have removed that part of the brain, which created the problem. No no, it is not possible. Only one tablet and we are going to ring “the bell”, it cannot be happening, and not that close to the finish line.

When Tusbeeha was diagnosed with epilepsy first time, it was hurtful, it was new, it was painful very painful, but this time it was a punch in the gut. It hurt so badly, that I did not want to tell anyone.

Then I did what everyone would do, no matter what faith they belong to. I started trading with God. Give me seizures instead of her. I started crying again in my prayers and began with another petty bargaining I used to with Allah almighty all the time. “Give me all the pain in heaven and earth but pull my daughter out of it” Then I traded, and, in my negligence, I offered Allah “five times prayer whole my life, I will never miss a fast, I will do charity every single day, not a drop of sin ever.”

When I was in labor with Fatima, I asked a doctor,” why it is more painful this time, why it hurts more this time “ ..and her answer was,” you have scars from the last C section, and that’s why it hurts even more “.

When Tusbeeha was diagnosed with epilepsy first time, it was hurtful, it was new, it was painful very painful, but this time it was a punch in the gut. It hurt so badly, that I did not want to tell anyone. I just wanted to ignore the long list of scannings, EEGS, and from 1 to 18 pills journey again. I cried and I cried alone. I did not want to be the strong mother again, I wanted to be a regular one. I wanted life to be colorful. I need no medals; I just did not want to be a part of race gain.

One day Tusbeeha saw me crying and she said, “mom do not cry, seizures are not painful.”

I stopped crying in the house, and every time I felt like crying I went out. Today was one of those days, I was sitting sadly alone outside and out of nowhere I remembered that sentence I heard when I was a teenage girl,” healthy children are the biggest blessing “. I remembered my answer as well, “no even bigger blessing is that you have a child who is born sick and then gets healthy”.

Right there I knew what was bigger than that when your child is born sick and one step away from the healthy finish line, and somehow you have pushed back to the start point again and then one day you finish that line anyway, maybe not today, but one fine day.  That is the biggest blessing of life and that is only for the chosen ones. When you miss your one train and are pushed from another and then you do not dare to take the third. So you just walk and crawl, bend and kneel instead and before you know you have reached the finish line yet once again.

That’s the biggest blessing of life.