The First Year

It was not necessary to estimate or to ask about what might come. The troubles and difficulties revealed themselves quickly enough.

As many mothers can confirm, who have been separated from their infant for the first weeks, it is not easy to establish a nursing rhythm. After we took him home, it took four more weeks of intense effort to convince Gawain that nursing was preferable to the bottle. After this was achieved, countless small incidences interfered in establishing the supply and demand rhythm.

In the transitional phase, where he started to get other nourishment than mother’s milk, Gawain started extreme vomiting. This continued for several months and stopped immediately when I, exhausted, ceased nursing him.

In addition he developed allergic like reactions:

A permanently blocked nose and mouth breathing.

Chronic asthmatic bronchitis.

The beauty and richness inherent to the unfolding of motor functions in a small child did not occur. Earlier I described how perfectly Gawain could grasp objects in his first few days of life, and how these movements disappeared. By the time he was four months old, he had never stretched his arms to reach an object on his own, but one day he began trying.

I watched as he spent more than an hour attempting to get his closed right fist into his mouth. With his head turned towards the right, he would bring his fist up to the area of his mouth, but fail to get it in. The fist would continue travelling up and outwards and so the circling would begin again. Finally, though, he did achieve in getting the fist into his mouth and sucking on it.

Even though the entire process looked unusual and perhaps even pathological, my strongest feeling was a delight that he had done it. "How" he had achieved it seemed at that moment to be secondary.

After some weeks Gawain began picking up objects that were lying next to him, but this he did in strange ways as well. He would rotate the arm and hand inwards and try to get the objects by coming at them with a hand that looked as if it were put on backwards. Then with about six months of age, he figured out – in a process that took a good part of a morning – how to bring an object from his right hand to the left hand. This involved using his mouth to make the transition - and again the arms were rotated inwards so that the backs of his hands faced his mouth as the object passed it.

When lying on his back, he increasingly kept one position:

Head looking to the right and tilted backwards.

Arms turned inwards and held by his sides

Legs flaccid and stretched out.

When put on his tummy, he would try to raise his head by arching his back. Then he would kick with his legs and feet and would curl his arms behind himself so that he reminded me of a silly penguin.

With about seven months of age, Gawain’s eyes started to look crossed – the result of what I later came to know as strabismus. This had not been visible before.

His back looked more and more rounded. What was especially noticeable was the emergence of the vertebrae in the area of the lower back. This began at about seven months of age and got progressively worse, so that by the time he was 1 1/2 years of age, one could see all the little bony tips of each backbone sticking up on his back.

With eleven months spasticity in the arms became noticeable when I dressed and undressed him. At about this time, the feet began to point downwards.

Gawain was nevertheless a lively and interested baby. He laughed and responded with intensity. Members of the medical community, family and friends assured us that he was only premature and that he would catch up. Even the doctors, who must surely have noticed his problem, feared mentioning the word "brain injury" to us. It was first an innocent physiotherapist who, assuming that we knew the diagnose, first mentioned cerebral palsy and lack of oxygen to me.

Gawain was by then one year old.

My first superficial look at a book about CP children showed me that I could have known from the earliest months or even days about his problem. But although he looked more or less "normal" in the early months of life, this "normal" picture had digressed steadily throughout the first year.

During the next six years Gawain was examined and treated by many doctors and therapists within the conventional and alternative medical community with limited results. His functional gains stagnated by three years of age. What unfortunately did not stagnate, despite constant and careful medical care, but cascaded down upon us was a steady and dramatic degeneration of health that made all therapeutic efforts seem useless.

The main question, which I always asked, when I saw any medical professional was: "Why does he breath like that?" No answer came to this riddle, and yet this was perhaps one of the biggest questions of all.