For what seems like forever we have been battling with our local health trust to acquire a new wheelchair for our daughter, Hannah. Hannah is 13 years old and was born with spina bifida and hydrocephalus. She has outgrown her current wheelchair to the extent that it is now dangerous for her to use. She has been out of school for six weeks (and counting) and is largely housebound as we fight an ongoing bureaucratic nightmare with the medical authorities to obtain the essential equipment Hannah needs to live her life.
It’s got to the point now where he have decided to raise the funds ourselves to buy the chair that Hannah needs. Kids with disabilities should be at the very heart of our society. They should be loved, cherished and protected, not exiled to the fringes and seen as an inconvenience by some medical professionals. They deserve better.
As do their carers. I will have known my wife Fionnuala for 21 years this summer. She is an utterly devoted wife and mother. To the extent where she has given up her career to care for Hannah and our other two kids. The problems with Hannah’s chair have had a devastating ripple effect on the family. Fionnuala has been affected most of all. She cannot leave Hannah’s side so is effectively housebound herself.
Every day for her is ‘Groundhog Day.’ A mind numbing routine of housework and hospital appointments. She has a heart as big as a house but it is breaking at present. Breaking for her daughter but also breaking for the life she had which now seems so tantalisingly out of her reach. A year ago she had an important job and had a hectic social life. She was very involved in our church.
Now that she has had to give up her job and we have decided to step down from church life the phone has stopped ringing. She gives so much and expects so little in return. Yet people forget. People disappoint. And she sits and looks out the window as life appears to pass her by.
It’s easy, at times like this, to think that God has forgotten as well. When the loneliness is overwhelming and the obstacles seem insurmountable. We have prayed long and hard about this. Fionnuala has cried, pleaded and screamed. She will fight tooth and nail for her family. She always puts the needs of others before her own.
They say an untested faith is a useless faith. Well our faith is being sorely tested of late. My wife is a proud woman. An intelligent woman. And a patient and forgiving woman (she did marry me after all!). I know this is just a season of her life and that God has incredible plans for her. Just around the corner. But we round the corners of our lives in his time and not our own.
I feel Fionnuala’s corner is close, very close. But that is little consolation to someone who feels at the bottom of the pit, at the end of their tether. Words are cheap. As meaningless as chasing the wind. But prayer is powerful. And just as light always overcomes darkness so love will always conquer despair.
Fionnuala as you read this I pray for you. That your light keeps burning, that your flame never goes out. You are deeply loved and the heartbeat of this family. We are nothing without you. You are strong and beautiful, a warrior. A Daughter of the living King. My best friend, my earthly salvation, my number one fan. Yes cry, scream, swear and shout.
But do not give up. As I will never give up on you and us.
Philippians 4:13 – ‘I can do all this through him who gives me strength.’