Special Needs Parenting: Learning About Kernicterus The Hard Way…

Posted by Claire Smyth on 10th May 2016 Additional Needs, Advice & Support, Disabilities

Special Needs Parenting: Learning About Kernicterus The Hard Way…

So, in the last 18 weeks, my family and I have been transported to an alternative universe, one I never anticipated belonging to, one I never gave much thought to and (I'll be honest) one I barely knew existed.

But here we are in the very special World of Special Needs Parenting.

Our second son Buzz arrived 18 weeks ago, 2 days after Christmas, a spectacularly cute and perfectly tiny person.

We were all besotted with him and everything about him. To cut a very long story very very short he developed jaundice, medical professionals failed to test and treat it or even inform us it could be serious, in fact they kept telling us to stop worrying and we sadly knew no different.

As a result we nearly lost poor little Buzz and he's been left with a severe form of brain damage called kernicterus.

It's safe to say that life, as we knew it, has changed.

Everything is magnified with a special baby, the good and the bad. Every single day is filled with sadness and terror and magic and meaning.

The sadness I feel at night as Buzz shrieks in agony when the dystonia is at its worst is followed by the pure beauty of the morning when he's the most charismatic, bubbly, talkative baby I've ever known.

If I was into cliches I would say it has been a roller-coaster ride.

Our lives suddenly include hospitals, a super physiotherapist, a teacher for the deaf, Facebook support networks, raising awareness, an assigned hospital paediatrician AND a community paediatrician, OT equipment, hearing tests, eyesight tests, alternative therapies, fundraising, so so many medications, DLA, MRI's, EEG's and hundreds of other abbreviations we are in the process of learning.

I've changed and grown so much as a person already.

The self doubt that's burdened me since I was little has evaporated and been replaced with the spirit of a pitbull!

I've found back bone I never knew existed,

I don't care who you are or what your job title, I know what's best for my son and I'm no longer afraid to express it.

I'm now an expert in Kernicterus and have already been asked by 2 doctors if I work in the medical profession!

I've become more tolerant yet less tolerant all at the same time. I'm more tolerant and understanding of people's differences and quirks yet I've become less tolerant of people grumbling about petty, irrelevant rubbish.

Yes, life has changed, we've changed and our friends and family have changed.

So, who knows what the next 18 weeks in this magical yet scary new universe will bring..?