Adam lives in his own world, but he means the world to me. Without rehabilitation I will lose him!
Every day I wake up an hour before my son to have a moment for myself. I drink coffee, collect my thoughts and strength. When Adam wakes up, I start living the rhythm of his day. I forget about myself and support him until he falls asleep. My son will need help for the rest of his life and I want to take care of him as long as I can. The morning is quiet, crisp and slow. Adam will wake up and we will start another day together. I have been helping him in all his activities every day throughout 22 years of his life. It was supposed to be different, however. After Adam was born, I left the hospital with a healthy child. Only after a month thereafter Adam was diagnosed with celiac disease. He had to switch to a specialist diet but nothing went as planned. When Adam was one year old, he could not yet sit still. I was looking for a reason asking many doctors for help. After the head resonance, a neurologist concluded that Adam had inflammatory lesions in his brain that may have caused his delays. When no treatment was successful, I heard a diagnosis of childhood cerebral palsy. Initially, I could not understand why all of a sudden my son has become so sick. Anger, sadness, disbelief and despair were intertwined in me. I refused this diagnosis for a few days. At the same time, I knew that it would not do any good and no one would be able to help Adam but me. My son's little successes lifted my spirits. First smile, first word. Daily trips to rehabilitation sessions, fight for Adam's fitness seemed to bring results. Adam started walking when he was 6. I cried tears of joy. However, when hope appeared that Adam was beginning to improve, epilepsy commenced. It infiltrated my son like a tornado and took away everything we had worked for so hard together. I had to rise again and fight for Adam's life. Unfortunately, nothing was like before the first epilepsy attack. Adam began to regress in his development and every epilepsy attack dragged him further down. Even weather fluctuations started having a very big impact on his wellbeing and behavior. When Adam suffers an attack, I can do nothing. I have to make sure he does not hurt himself and wait. We cannot go for a walk or to the store because Adam can suffer an attack any time. My biggest support has been my older son, Łukasz, who stays with his brother at home at times, allowing me to go to a doctor or do the groceries. For years I have been dealing with everything on my own. Unfortunately, my husband could not cope with raising a disabled child. Because Adam requires 24-hour care, I had to quit my job. Assisting Adam has quickly become the most important thing in my life. Therefore, I use every opportunity to go with him to rehabilitation sessions. During one of those sessions, we found out that Adam also suffers from autism. Only a collaboration of a number of specialists could help to recognise that in addition to cerebral palsy, my son has also other disorders. That is why I endeavour to take Adam to extended rehabilitation sessions as often as possible. Professional therapists can make miracles. After such extended sessions my son improves his balance, walks much better and classes with a speech therapist improve his ability to speak considerably. Although such sessions are a great investment in Adam's development, I can only afford up to two weeks of such professional assistance in a year. Unfortunately, sometimes not even that. I am a mother who never gives up. I know that my effort in Adam's development is his only chance of living relatively normally once I am gone. Because time does not stand still and I am not getting any younger, my biggest goal at the moment is to make my son as independent as possible. Hence, I would appreciate very much any of your help allowing Adam to have a decent future! Mariola, Adam's mum