Don’t Give Up 

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.’

22 thoughts on “Don’t Give Up 

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  1. I did a Go Fund for something I needed last year. Maybe that might work for you? It’s amazing how generous people can be when you put it out there. A shame there isn’t automatic funding for the wheelchair though from the government. Also check out a charity called “basic needs” if you’re in the U.S.

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  2. Thank you for your transparent and honest sharing today. It is a tough, heart-stretching deal when your child is in need and measures that are supposed to be in place to serve and support fail you. It’s even tougher when you feel isolated and alone in the challenges you face. A couple of days ago, you found my blog and ‘liked’ one of my posts. Thanks for that! My husband and I serve as missionaries in southern Africa and our two youngest kids are autistic. I resonated with your words that people don’t always understand the life choices we must make for the care of our children. I gave up full-time ministry to homeschool our boys – or it would mean leave the mission field altogether. We weren’t ready to do that. However, I must say it took me a while to full get on board with the decision. I now serve in a half-time ministry capacity and do the best I can – but keep the needs of our family at the forefront. It’s been a very good thing. Very good. God has been faithful and met me at the deepest level of my need – a place where only He can sustain and strengthen me. I pray this for you both as well. Take good care. As for me, I don’t really ‘get into’ the likes for likes deal that wordpress encourages – maybe that would grow my blog – but what I do appreciate are real people, writing from real experiences and you guys are doing that. Thank you. If my blog can encourage you, that’s it’s intent. Stop by as you like and if you ever comment, I’ll be sure to write you back! Blessings, heather

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    1. Hi Heather thank you so much for your kind words it really is tough being a parent of a child with special needs and we’ve only the one and you have two I take my hat off to you. We will keep you in our prayers and good for you getting back into the ministry field that’s very encouraging for me. God Bless xx

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  3. I’ve experience that withdrawal of support too although I’m definitely not going through anything close to this. I have chronic pain: fibromyalgia, myofascial pain syndrome, and so forth; all hidden illnesses. I found that people’s support limit is a few weeks at best. Some are able to be supportive longer but that is a rare person indeed. People just don’t want to hear it anymore. They want to go back to safe conversations like the weather and such. They subconsciously want us to be fine, as if we had the flu and ought to be over it by now. I, in fact, never understood, or could even conceive, what anything chronic was like, except my eating disorder (33 years and counting). Now though, wow. I had to come to a decision at some point: continue living with bitterness for humanity for it’s lack of compassion and care, or continue living with understanding that people simply could not understand, and appreciate those who do. The first path is easy, the second path is not. I am thousands of dollars in debt. Insurance covers some things, I pay out of pocket for others. It finally came down to this for me: debt-free and death or ever increasing debt and life. Thankfully I don’t need a wheelchair or other expense that is beyond my credit level so I empathize a great deal for your situation. I hope people come forward and give. If that is all they can do, then good on them for at least giving. My hopes and thoughts are with you.

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  4. Do you have a donation website (go fund me or the like)? I don’t have a lot but I’d be happy to donate what I can to help.

    The bravery of those who suffer when they are young is immense- they radiate a strength and courage that most of us could only hope to aspire to. I believe God holds them especially close to his heart.

    And I agree- a society is judged by how they treat the most vulnerable, and it does seem like the people who need help the most (I have a lot of friends who are vets, for example) are not only left to slip through the cracks, but are outright ignored. And there is no reason why your daughter should be denied a wheelchair.

    Peace to you and yours, and I will keep your family in my prayers.

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  5. Beautiful words about your wife. So loving and sweet. I will lift your family in prayer. I know what’s it’s like I have two boys with duchenne muscular dystrophy and are wheelchair bound. You are right in all you say about our God, his light and promise. Only He can help us through. God bless you all

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  6. I never realized health care in developed nations could be this dismal too. Your daughter is lovely, your family is inspiring. I am sorry I cannot contribute materially but I do hope you find a solution soon. Take care.

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