A Special Day For A Special Girl

Today is a very special day in the Black household. Our eldest daughter, Hannah, is celebrating her 14th birthday. This makes Fionnuala and myself feel very old but it also fills us with wonder as to where all the years have gone. It seems no time since that exciting, frightening day when Hannah was born. Hannah was born with spina bifida and hydrocephalus and underwent many operations in her early life with great bravery and dignity.

How many of us could undergo neurosurgery one day and be sitting up in bed, relying on paracetamol alone for pain relief, the next. Hannah has a heart the size of Ireland but is as tough as they come. Her courage and positive outlook on life have humbled me on many occasions. She loves life and is developing into a intelligent, beautiful and talented woman before our very eyes with every passing day.

Adam is the sporting star of the family and Rebecca the bookworm and aspiring blogger. Hannah, however, loves drama, song and dance. She performs on stage with incredible confidence and her talent shines bright. This amazes Fionnuala and myself all the more given you wouldn’t catch either of us dead or alive on stage.

Hannah is a loving daughter and a loyal friend. She also loves her brother and sister very much despite the ever so occasional fallout they have. Her smile could melt the coldest of hearts and lights up every room she enters. She refuses to be defined by her disability and since the first day of her life has defied surgeons and doctors alike with her spirit and desire to live a normal life.

With every passing week she reveals new skills to us. First it was her theatrical panache, next her flair for make up, hair and fashion. And this week has shown she has inherited her mother’s baking skills; her scones, shortbread and gingerbread biscuits were heaven on earth. I will have to run a few extra miles this week to burn off all the excess calories.

I embarrass her on a daily basis with my cringe worthy dancing and appalling rap skills. Her sighs and eye rolling are a sight to behold. But we are blessed to call her our daughter. She inspires and motivates us every day to strive harder and reach higher. She is a living testimony to the adage that nothing is impossible. She is unstoppable….especially in her new, motorised wheelchair!

Hannah, thank you for the joy you bring to our lives. Thank you for the singing, the laughter and the tantrums. Thank you for the gift you are. Thank you for being you. You are perfect to us and our hero. We cannot wait to share this magical, special day with you. We will never leave your side and never let you down.

All our love.

Mummy & Daddy

Power

The day that we have been waiting for for a very long time has finally arrived and I don’t mean Stephen actually sitting at his desk to start writing his book more importantly Hannah got her new all singing and dancing power chair.

The regular readers of our blog will know about all the trials and tribulations we have had over the year regarding pressure sores and unsuitable wheelchairs and we want to thank all of you for your prayers and encouraging words and comments they have all been a massive blessing and support to us.

At church yesterday a lady approached us and told Hannah after speaking with her earlier she got a word for her “POWER” we just looked at each other and laughed and told her that Hannah was getting her power chair today and it was very appropriate Thank you God 😊

Today has been a very emotional day and I am so blessed to see how much this chair has brought comfort, independence and the biggest smile that I’ve ever seen on my amazing daughters face in quite some time. My heart feels like it could burst today Im that proud and happy for her.

At a top speed of 0.8MPH Hannah was treated by an extra proud Granny to a new handbag to match her chair and some lunch in Belfast before heading back home to show off her wheels to her Daddy.

Hannah is now watching the clock for Adam and Rebecca to come home so she can take Charlie Our dog out for a walk and this has really got me thinking about how much we take for granted and about the little things we grumble and moan about.

Today has most definitely been a #ProudMummyDay one which I will never ever forget.

‘I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well’ Psalm 139:14

The Butterfly

Im a very proud mummy tonight our Hannah sang in Belfast City Hall for her school’s 60th Anniversary in front of Royalty and it really got me thinking about everything that we were told she would never be able to do or achieve. 

When we first started this blog I wrote a bit of testimony about our experience then and I thought I would reblog because we are busting with pride for Hannah tonight.

Well done Hannah don’t let anything dull your sparkle.

Fractured Faith Blog

This is my first time blogging, normally it’s my husband’s witty blogs that you read and it looks like I’ve caught the blogging bug whichthankfullydoesn’t require medical attention asI’ve seen enough of doctors, therapists and hospitals this week. I want to share a bit of testimony with you about a small part of my journey but somebody who is a HUGE part of my life; our daughter Hannah.

In March 2003 we discovered I was pregnant. We were really excited we had already ason Adamwho was 8 months old. We were looking forward to our two children being really close together and good company for each other as they grew up. My pregnancy was progressing really well. I was healthy and had gone back to work after my maternity leave with Adam. Lifewas good and our baby was due on Christmas Eve. We were really looking forward to our big…

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Ear We Go Again

It has been three weeks now since I wrote Aches On A Plane the account of my harrowing flight home to Northern Ireland from a business trip in England. To those of you fortunate enough to have erased it from your minds I apologise in advance. For I am going to talk again about the harrowing saga that is my left ear.


It remains blocked. As in muffled. As in somebody has stuffed it full of cotton wool. As in ‘Sorry what was that you said?’. I have tried decongestant nasal sprays, ear wax removal sprays and two courses of antibiotics. All to no avail. It still sounds the same as when you pick up a seashell at the beach and listen to it. I have even tried prayer. Yes I’m that desperate. 

I thought the blocked ear was part of this mutant alien virus I have been struggling with for the past month. I have not helped matters by running when I shouldn’t have but, slowly oh so slowly, the symptoms had been easing. The dull headache had gone, the tiredness and heaviness waslifting and I only cough now when somebody mentions coughing. Coughs.

I have decided I am not running again until I am totally better. Otherwise this bug will never clear up. This then triggers all sorts of other Stephen madness. Am I putting on weight? A little probably but so what? Will I ever get my fitness back? Yes of course you will? If I eat badly today does that mean I have to eat badly tomorrow in order to placate the OCD voice in my head insisting that I comply with the ‘even number’ rule. This only applies to eating. Other compulsions involve ‘odd number’ rules. Which of course makes perfect sense.

I have written about the (not my) OCD a little in previous posts. At its peak it raged unabated but I largely have it under control now thanks to prayer, medication and a very understanding wife who talks me through a lot of brain baloney when I am having a bad day. I never say this enough but thank you Fionnuala for keeping me sane and off ‘the roundabout’.

When I started the second course of antibiotics, however, my doctor said I had to stop taking the OCD medication until I had completed the course. Tbe two did not mix well apparently. Well my brain does not mix well with life either when I am not taking my little white pills. So while I thought I was managing fine without it, Fionnuala had noticed me slipping in a few areas that needed nipped in the bud. This involved a short, sharp shock on Saturday evening after one such episode.

I pray that I am back on track this week. But just as my actual hearing has been muffled of late, so has my spiritual hearing. I have blocked out the wise counsel of Fionnuala and others, convinced that ‘Stephen knows best’. I have neglected my prayer and study regime, allowing the small, still voice of God to be drowned out by an earthly cacophony. I have allowed the Enemy inside my head where he has gleefully taken up residence.

It is time for him to leave. This blog is part of that process. ‘Satan you have been evicted from the Big Stephen house. Please leave immediately.’ I need light and truth to course through my brain, living waters to cleanse my ears and rid me of the lies and tricks that are so desperate to set up shop between my ears. I need to remove any barriers between God and myself. I need Jesus and only Jesus.

Writing this had helped me spiritually. I need to write out my thought processes in order to make sense of them. And yesterday I found that tilting my head slightly seems to dislodge something in the ear and allow the air pressure to stabilise and the hearing to return. It could be wax loosened by tbe ear spray. Or it could be the antibiotics finally kicking in.

Either way slightly realigning the position of my head is making a massive difference. Just like slightly realigning my thinking and priorities since Saturday has made a massive difference to my mental health and the relationships which truly matter. This slight realignment, this tiny tweak of the ‘God Radar’ is sometimes all you need to dislodge the selfish and deluded worldly patterns that lead us off the straight path.

Listen. Learn. Get off the roundabout and reposition your life. 

Matthew 15:10 – ‘After Jesus called the crowd to Him, He said to them ‘Hear and Understand.’

Dedicated to Fionnuala xxx 

Have you any remedies for muffled hearing?

How do you keep your communication pathways with God clear?

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.’

PATIENCE/PATIENT

Today we have a guest blogger this is her first time blogging so please be kind to her.  Let me introduce you to our daughter Hannah who is 13 years old.  Hannah has been off school for 4 weeks now due to a pressure sore on her foot.  Hannah loves school and misses her friends and some of her teachers.  Hannah and myself are stuck in the house all day every day because she doesn’t have a suitable wheel chair to facilitate us getting out and about and Hannah getting to school so we have decided because we are bored we would jointly write a blog about some of her friends in school.

Over to Hannah –

First up is my BFF Jodie.  Jodie will be 14 at the end of August and we have known each other from we were 2 years of age.  For a long time me and Jodie didn’t get along with each other because we were too similar and always tried to out do each other.  Fast forward a few years later and we are now Best Friends Forever.  Jodie is my best friend because she never fails to make me laugh and she is one of my greatest supporters.  In fact I don’t think of her as my best friend but as my big sister.  Whenever I’m feeling rubbish she always cheers me up, whenever I’m having boy trouble, which is very often but don’t tell my dad, she always gets me to wise up and realise boys aren’t worth it.  In return I’m always there for Jodie and always will be we both are each other’s greatest encouragers.

Secondly is my other best friend Bob.  Bob is 13 and would be my tallest friend I think if he wasn’t in a wheelchair he would be taller than my dad!  Bob doesn’t use his voice to speak but that doesn’t mean he is quiet he is anything but because he uses his communication board and tortures me and the rest of my classmates.

Up next we have the beautiful Crystal.  Crystal is also 13 and only joined our class last year.  Crystal is a very funny character and always makes me laugh with everything she does especially when she falls asleep when she’s in a class that she doesn’t like.

This is only three of my friends that I really miss from school I have that many I could be writing all week.  I just wish that I could get to school to see them every day like any other teenage girl but right now I just have to rest my foot and pray that the right wheelchair will turn up soon.

Hannah

mummy and hannah

The last four weeks have been a lesson for me in patience.  I have been fighting and fighting for the right equipment for Hannah and have got nowhere.  Yesterday was an awful day for me personally which resulted in me spending the majority of it crying because I felt so helpless that I couldn’t fix things for Hannah and it was all out of my control.

This morning when I woke up I heard God say “Give it to me” and it was so obvious I thought why have I not done this before now and the answer is because I’m a fixer and want to do things for my children myself.  This is exactly what our Heavenly Father wants to do for us and the thing is he can do it so much better than we can.

I got up and prayed and handed all of the things that I was worried about yesterday over to God and promised him that I would make no phone calls today to medical therapists and just focus on physically looking after Hannah.  An hour ago I got a phone call from one of Hannah’s therapists with good news telling me that it looks like we finally meet the requirements for Hannah to get two pieces of the equipment that we need for her and all I can say is “Thank you God”.  We still need other items approved but today I believe is just the beginning because we serve an amazing God that just wants to shower us with grace and love.

I have heard a phrase “walk a day in my shoes and see how you do” and I think it is so patronising.  Everybody has their worries no matter how big or small those worries are they are still mountains for that individual.  No matter what your situation is there is always somebody worse than you but that doesn’t make your situation any less it’s still a matter of concern for you.  Over the last few weeks I have chatted with people online who are trying to have a baby, I know of a couple personally that have had problems trying to have a baby and I know of couples who have lost baby’s through miscarriages and I thank God that yes I have problems about equipment for my daughter but I thank him that I actually have been blessed with two beautiful daughters and one amazing son.

Fionnuala

 

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