It’s been three years since our lives changed forever. It’s been three years since we first sat in a hospital room filled with medical professionals. It’s been three years since we received that life limiting diagnosis for our youngest son. It’s been three years since the whirlwind began and we started living in the eye of the storm.
I often describe our daily life as being like a hurricane or a whirlwind; I mean our days are filled with hospital appointments, physiotherapy, feeding tubes, breathing treatments, medicines, phone calls, lifting, changing and that’s just for our youngest son. Throw in a diagnosis of autism for our oldest son and there’s more appointments, more phone calls, meltdowns, visual time tables, social stories, cool down time, set routines. This whirlwind whirls round and round constantly. It’s never ending and there’s never any real let up. I live in this whirlwind daily and always in fear that at any moment the storm will spiral out of control.
In the early days, as the whirlwind was just getting started, I remember one of our medical team saying “this will all settle soon”. The truth is nothing has settled, in fact the whirlwind has gathered more speed, picked up more force. What has changed though is my ability to live with the storm. I’ve learned to stay right in the middle – in the eye of the storm. The eye of the storm is where the calmest weather is, the lowest pressure occurs here and clear skies can be seen. It’s a safe place and it’s the place where life can be enjoyed. For me this means taking one day at a time, cancelling non-essential appointments if there’s too many in the one week, only taking phone calls at certain times, focussing on my boys and family life. I try not to look too far ahead and try to just live for the moment. The whirlwind can go on round about us, I know it’s there and I know if I come out of the eye, the calm place, it will do damage. Life is far happier if we stay in the eye of the storm, where we can be in control, where we can laugh, where we can see the storm but don’t let it affect our ability to live our lives.