Life's little challenges (From Dexter's Mum's blog)
A week ago, our world again turned upside down.
After coming back from our first day away from him, we were informed the doctor wanted to have a chat with us. We were taken into a special room with two doctors and a nurse. We were sat down and the doctor attempted small talk. Our nerves were frayed and tension was high.
Dexter had had a routine head ultrasound on his four week birthday, just checking for any abnormalities or concerns. Unfortunately, the doctor advised us that they had in fact found something in the white matter of his brain.
He called it Periventricular leukomalacia, or PVL, or in more simple terms, brain damage.
Why our little boy? Why us? Why?
The doctor can’t answer these questions, nor can he answer any of the questions that we have at the moment, which makes this situation all that more frustrating.
It was explained it is likely to have been caused by one of two things, either a potential infection in his waters or an event that took place in the first couple of days of his life. They cannot confirm if there was an infection, as I was given antibiotics. They will never confirm the latter.
It was explained that it is very rare to occur in pre-term babies over 30 weeks. Dexter was 31 weeks. None of this was fair.
It was explained that this will effect Dexter’s movement and his learning and development. They cannot indicate the extent, nor can they confirm what areas will be affected.
It was explained that on a scale of mild, moderate and severe, Dexter was sitting in the moderate section. We were advised to prepare ourselves that he will have some form of disability. We just don’t know what.
It was explained that it is more than likely this will manifest into Cerebral Palsy. We just don’t know which form.
At lot was explained to us and our heads were full.
I was overcome with guilt that something I may have done could have caused this. I kept thinking of everything I had done that the books say you shouldn’t do – the occasional half a glass of wine, the occasional slice of deli meat, the less occasional slither of soft cheese. Then I remembered everyone telling me to slow down more, rest more, sleep more, don’t exercise as much. Did I do this to him? Is it possible that I am the reason my little boy’s life is now going to be completely different to what it should have been? The doctor indicated nothing I did would have caused the infection, which helped a little, but the self blame will always be there.
We made heart breaking phone calls to our families, explaining the situation and what we understood of it, which remains not much. We made the decision to wait to tell others until we had had the chance to get our very confused, full and hurting heads around what we had been told.
Our hearts broke as we stood outside the hospital doors, holding each other and trying to make sense of what was going on. We discussed our first thoughts, comforting each other that we weren’t being selfish when we immediately thought of the worst case scenarios.
Would he be able to walk and run, let alone swing a golf club? Would he be able to communicate with us? Would he be able to care for himself? Would he grow up to be the strong independent young man we wanted him to be? Would his long limbs be able to carry him around and would his insanely long fingers ever be able to touch the keys of a piano?
Even before Dexter was born, we had so many hopes and dreams for him, half that were more than likely to never come true, but they were fun to think of. We thought of our childhoods and of parts that we wanted to share with him – sports, music, adventure, love, laughter, travel and family. We wondered now how much of these things he would be able to achieve.
I felt that I had let everybody down. Everyone was just starting to see that there was a light at the end of the premature tunnel and then this happened and I couldn’t give any answers.
I was angry. Angry at the doctors; angry at the nurses; angry at the receptionist. I was angry at the smiling and happy new families taking their babies home. I was angry at the television for showing ads with smiling, happy and healthy babies. I was angry at the mother’s who didn’t want to be mothers, but who had healthy babies. I was angry because it was raining. I was angry because it was a Sunday. I was just downright angry.
And then I was sad. Uncontrollable sadness. Sadness that would hit me out of nowhere. We spent the first night taking it in turns consoling each other. But I was still sad.
The anger left, the sadness remained. The first week was terrible. My husband was back at work, I was back in Sydney away from my family and keeping it to myself, pretending that all was ok. I cried myself to sleep. I cried on the bus. I cried walking. I cried at the hospital. I cried a lot.
But through it all, there is a silver lining.
We have now altered our plans for Dexter, but only slightly. We are a tough bunch and we will not let him get away with not pushing himself. We will attend appointments and we will have high expectations of him. He will chase his cousins around and push future siblings around. He will love us because he will know what love is. He will laugh at us and be embarrassed by us as we sing and dance and try our hardest to embarrass him, just as parents should.
We are lucky, we have the support of each other and our families. They have helped us more than they realise; through providing meals, financial support, an ear, happy stories, success stories and most importantly laughter.
When it comes down to it, Dexter is our son, our nephew, our cousin and our grandson. We love him, unconditionally and this news is just a small blimp on what is going to be a great journey through life together.