Our New Normal… Monday 30th September. The day things changed for us forever. It’s funny really. You wake up thinking the day is just like any other and in a split second everything you knew is whipped from beneath you.
Isa was 2 days of turning three weeks old when they told us. You know to panic when you get a call and an appointment with a consultant on the same day. Maybe that is why I don’t remember much, the panic.
Homocystinuria. Such a long name for something such a tiny person has. Something so complicated for someone whose life is so simple. I bet you haven’t heard of it. Either had we. That’s because it is so rare. There’s only a handful of people with it in N.I.
The first few days after Isa was diagnosed whizzed by. Truth be told we cried, googled and cried some more. Trying to process what this meant for our family and how we would move forward. The fear of what could happen to her swamped us.
Five days later and this has become our new normal. We know now life will consist of weekly blood tests and hospital appointments but that’s ok. Now the elephant in the room is actually a mouse and we are ready to tackle this head on. We have some huge challenges ahead of us but we know how lucky we are and how different this could have been if it hadn’t of been picked up early. We know there are many others worse off than us with worse diagnosis, prognosis and treatment plans. We have so much to be grateful for and we sure as hell are going to say thank you every day for the rest of our lives that we know how to keep our little girl safe.
Photography by Angel NI