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
In addition he developed allergic like reactions:
A permanently blocked
nose and mouth breathing.
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
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
Arms turned inwards
and held by his sides
Legs flaccid and
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
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
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.