Yesterday was Isabella’s 3rd birthday. It took us both by surprise. People say that time flies when you have kids and I have to say I wholly agree. In fact I would say it is un understatement. It doesn’t just fly by it goes by at super sonic speed. Blink and you have missed it.
Our three years with Isabella have been slightly different than expected. Who’d have known that Isabella being born without any complications and who ticked the right boxes in the new born tests, on reaching her third birthday wouldn’t be unable to talk or walk.
As a family over the last three years we have come a long way and Isabella has made some truly amazing progress. However, as time has gone on the gap has really started to widen.
I always tend to use analogies to describe our lives and how we feel. It makes it easier for me to explain and others to understand. So whilst out walking another analogy sprang to mind.
When Isabella was born we were living on the mainland with everybody else. Then as the months went on and I became increasingly worried about Isabella and her development a line appeared between us and the mainland. Like a border between countries, where eventhough they are next to each other, life between these two countries can be very different.
Isabella wasn’t sitting unaided, playing with her toys like the children around her. People noticed and asked about her development.’ Oh, is she not sitting yet?’ They would ask. I didn’t have any answers. We were still waiting to see someone, someone who hopefully would have them. Apart from my parents we hadn’t told anyone about MY worries and concerns. The fact I had pushed the GP for a referral to see a paediatrician. So I would reply, ‘Not quite yet, we are getting there’. When actually in truth she had appeared to get worse constantly flopping forwards or back.
So in the early days I would bat away awkward questions or simply avoid situations where they would come up altogether. Not because I was embarrassed, because I didn’t have any answers and didn’t know what to say.
I tortured myself with child development books and would recieve daily e mails on what my baby ‘should’ be doing. I would spend hours on Google. It was actually Google where I self diagnosed her Cerebral Palsy. My husband didn’t want to hear. He truly believed there was nothing wrong and that the long awaited appointment with the paediatrician would prove him right. He thought he would say she was behind and would just ‘catch up’. So sure in fact when we finally got the appointment he couldn’t make it due to his first day in a brand new job.
So when the paediatrician agreed wirh me and said it was probable Cerebral Palsy my husband’s world was shattered and he was racked with guilt for not coming with us. It was hard trying to stop his guilt, as he had nothing to feel guilty about. As a mum I just knew someting was wrong and hated myself for being right.
Now that someone had confirmed my darkest fears and we began to tell people, I slowly felt the land around us give way and crumble. We had started to detach from the mainland. Our family was now on an island on our own. We were no longer joined to the mainland.
As time went on we seemed to drift out further to sea the gap between us and the mainland widening. Our little island inhabited by a few of us including Isabella’s specialists.
Other visitors to the island became less frequent. Maybe because visitors felt our island was more boring and mundane.With less spontaneity and more routines in place. Whatever the reasons we floated further and further away.
We obviously view our island differently. It is not boring and mundane. In fact it is quite a magical island with rare birds and butterflies and for the most part the weather is good.
But i have to say that there are some people who saw the cracks and felt it crumbling away and stayed with us on the island. They have been with us drifting along and watched the mainland fade into the distance. Like us they like life on the island.
We have people who will occasionally take a boat out to visit, but they don’t stay long. They find the island uncomfortable, different and prefer life on the mainland. On the odd occasion people from the mainland will wave, but it is getting harder to see them now, they are little dots on the horizon.
Although we maybe on our relatively small and sparsely inhabited island in the middle of the sea we are not alone. We are surrounded by other beautiful, tropical islands. We are all drifting out into an unknown sea, but we are all drifting together…