Marko's story

A Story with a Happy Ending

It is precisely with this title that I think I should begin my story. This is a story about how my child took his first steps independently at 24 months of age, by himself, without any assistive devices, how he went skiing at 36 months of age and how he started riding a bicycle independently at six years of age. Today he is six and a half years old, he is in the first grade and he is a child without any special problems, a child without special needs. Given the initial opinion of the doctor at the neurodevelopment clinic, though, the prognosis and final outcome of his development seemed a lot more pessimistic.

So, let me briefly tell you my story.

My first pregnancy, at the age of 27, passed with a few complications – bleeding, partial placental abruption, and suspected thrombocytopenic purpura – because of tiny, itchy red spots on my legs. I gave birth in my 39th week by caesarean section because my baby was in breech presentation. After birth, everything was supposedly ok with the baby, so they did not recommend any examinations, other than the standard ones. My child developed normally up until about 10 or 11 months of age. My son Mark sat independently at six months of age, at 8½ months he began crawling. After that his motor development came to a standstill. That is to say, I noticed that he was not able to stand up well; to be precise, when he wanted to stand up next to the furniture, in reality, he pulled himself up using his hands and stood very insecurely and entirely on his toes.

The whole time my intuition was telling me that something was wrong. The paediatricians kept trying to convince me that children didn’t have to be able to stand until one year of age and that therefore, I shouldn’t worry. And I believed them because I was only a mother with her intuition.

And really, my intuition, my senses, were not wrong; they proved to be right and a valuable source of information. When Mark was one year old, they sent us to the neurodevelopment clinic. After a medical examination by a paediatrician and physiotherapist, the diagnosis followed – a minor form of cerebral palsy (Level 1 – 2). The doctor asked me a question, “Why didn’t you come to the neurodevelopment clinic before now? Where were you until now?” In other words, at the paediatrician’s I was a panicky mom, and at the neurodevelopment clinic, I was a negligent mom.

I was supposed to go back to work – my maternity leave had just ended – but then it was extended. After the first shock that we experienced, we began therapy at the health centre once a week. I felt that this was really not enough and that at this rate we would never start walking. The doctor told me that Mark would nevertheless start walking but he would not be able to walk stably and he would need an assistive device. This wouldn’t be independent walking; he wouldn’t, for example, be able to go to a shop by himself.

A family friend who had a similar experience took us to Zagreb to Dr Polovina’s. I wanted him to tell me that the situation was different – that my child wouldn’t have any difficulties and that he would walk independently just as he was supposed to according to normal development. But that is not what I was told. The situation was clear. A lot of work, a lot of physiotherapy would be required, and independent walking would not be guaranteed.

With great enthusiasm and earnestness, we began to follow Dr Polovina’s instructions. Each day we spent eight hours carrying out physiotherapy, which in reality meant the whole time that my child was awake. We cancelled all visits, walks, coffees with other moms, holidays… We completely subordinated our lives to carrying out physiotherapy and exercising. Our flat became a big gym filled with exercise mats, mirrors, toys, booklets, Teletubbies videos, and later with pebble paths. At one year of age we had to bring Mark back to the level of a six month old baby and to teach him proper patterns of movement, that is, to change the patterns he had acquired that were adapted to his abilities.

Parents who are experiencing or who have experienced a similar story will know that at times like this family life and married life are put to the test.

We mothers, in particular, who have subordinated our lives to the needs of our children and have pushed our needs to the side, are put to the test; we feel a great mental burden. There are nights when you look at your sleeping child and you ask yourself, why him? You look for answers to these questions and you cannot find them. You blame yourself and ask when and where the moment was that caused this condition. You cry when your child doesn’t want to exercise, when he simply doesn’t feel like it, when he would rather play, explore things for himself. While the whole time you have in your mind – we have to exercise, we have to try the exercise for taking a step forward, but we have only warmed-up our toes. Sometimes you have the feeling that you are forcing your child into a difficult situation that he is not up to.

At that moment it is important to remember Dr Polovina’s words, the words that I repeated to myself again and again: “You are a mother; you know what is best for your child. You cannot ask him if he wants to exercise. You know that he must. Don’t forget that your child won’t remember the moments when he cried while he was exercising. When he is 18, he will not remember that. But be certain that at 18, if his movement is limited or he is unable to walk well, he will have greater mental difficulties than the mental difficulties he may have as a consequence of crying when he didn’t want to exercise when he was two.”

When I think back to that time today, about the time that passed before Mark took his first steps and later started walking, I am aware of the fact that it was a time of great sacrifice, of great mental stress. But the return on the invested effort is enormous. The result of the effort is immeasurable and impossible to assess. I can say that that was my life project and I know that I did the best that I could and that I knew how. My child, my Mark, today is not a child with special needs; he is a child for whom walking, running, playing football, tennis, swimming, and skiing are things that are taken for granted.