Always look back on how far you’ve come

Sometimes you have to look back and realise how far you have come.

4 years ago I walked out of my job, newly married with no way to pay the bills. It was a job I hated & I dreaded going to work everyday. I had never taken risks before and honestly I still feel like it was the most ballsy thing I’ve ever done but I was petrified and felt like a failure. I got a part time job to make ends meet and 4 years later I now manage that organisation and adore my job, as well as the people I work with.

3 years ago we were facing the harsh realities of IVF and the fear we would never have children. I was petrified I would never get to hold my own baby or get to experience motherhood. Now I’m writing this cuddling my two beautiful girls.

2 years ago we got hit with the stark reality thay we couldn’t get a mortgage to build our family home due to the restrictions on our land. I had always wanted to build on our family land and have my children experience the incredible childhood I was lucky to experience. We thought, screw it we’ll just start and work it out as we go. 2 years later and we are over half we there and should be in by the end of 2020!

Now we’ve been hit with Isa’s diagnosis. This post could be depressing and a “feel sorry for me” post but it isn’t. You see, although Isa’s Homocystinuria diagnosis was the scariest experience to date, I know we can face it head on. We’ve tackled some mental things over the past 4 years but none of them have beaten us yet and none of them will.

No matter what you are going through you can deal with it. You are stronger than it and this curve ball won’t last long. I firmly believe every experience makes you stronger and we are proof that if you don’t give up, you will beat it.

I can look around me tonight and I know that despite the challenges I am hugely, hugely blessed and so are you.

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Our New Normal

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