I would like to hear "mama" so much. Although not necessarily. Any word spoken by my daughter would be a dream come true. And if she could reach out to hug me ... walk a few steps or pick up a teaspoon and eat ice cream with me. Extraordinary in ordinariness ...
During pregnancy, there were no signs of problems to come. Doctors said everything was fine, I gave birth to a healthy daughter who was ready to get to know the world. The first few weeks were like a fairy tale, I was completely absorbed in getting to know this small person. My daughter brought a lot of joy, a feeling of fulfilment to my life. Days were passing, but my attention was caught by something disturbing ... Our little Victoria had convulsions - at first small, barely perceptible, in course of time, stronger. I was very concerned ... I decided that a consultation with a doctor is necessary. Initially, it was found out that it was a shortage of vitamins and I should not worry. So I watched her closely and waited for a quick improvement. However, this one did not come. Little Victoria was shaking more and more, her convulsions began to deteriorate her physical condition, the disease has left her immobile ... I moved on to another doctor’s appointment feeling terrified. Next we were directed further examinations to confirm our worst fears: the daughter suffers from epilepsy. "Our whole world has crashed" is just an understatement. I did not expect that this disease would strike with such great power and would be our companion forever following us step by step ... The disease stripped us of illusions for future full of activity, for our wandering, for normality. Day by day, our life has been changed by 180 degrees. I began to realize that now it would be our reality. A reality which I have to reconcile and accept. I had to prepare for the fight.
The worst thing is that the tests confirmed the presence of the disease, but did not indicate the cause. We still have no idea where these symptoms come from. Drugs act symptomatically, weaken attacks, make them appear less frequently. Because of this, the daughter is lethargic, absent ... Sometimes I have the impression that I am losing her. There are days when I know that she understands me perfectly well. She gives a sign of a smile, makes small gestures. Each of them gives me a joy. It seems to everyone that my child is limited, that she does not know what is going on around her. I know it is far from the truth. Wiktoria is a fantastic girl and at every step she shows that she is worth fighting for. Rehabilitation holidays, constant doctor appointments will not bring Victoria back to good physical condition. My daughter will always require 24/7 care: getting dressed, feeding, carrying. These everyday activities are the biggest problem for us. Leaving the house becomes a real challenge ... Victoria is getting heavier and I am forced to use a steep staircase.
Each time I grit my teeth, lifting her down and lifting her up. It's getting harder. We leave the house much less frequently, and our everyday life will soon be limited to four walls only. This is a terrifying vision for me. I cannot allow it. I will not agree to the exclusion of my child. I won’t let the disease take away everything from us. For normal functioning we need a lift that will allow us to leave the house efficiently. The cost of construction exceeds our capabilities, and its lack will soon be a sentence for us.
Wiktoria is my whole world, she has taught me humility and acceptance for events that I have no impact on. I'm with her every day, I'm learning to cope with sickness every day. Just before I get out of bed, I gather all my strength to last for another day. Wiktoria gives me the power to act with my smile. I want to repay her for what she has taught me. The lift is the only way to free her out of the prison house. Help!