Separate your needs from your greeds

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October is Spina Bifida Awareness Month and as most of you know we have been blessed with our very own Spina Bifida Warrior Princess Hannah.  You can read our story about finding out about Hannah’s diagnosis in The Butterfly which was actually my first ever blog.  We of course love everything about Hannah and wouldn’t change anything about her and we are and will be forever be grateful for having her in our lives and are thankful that she continues to defy her original diagnosis.

Gratefulness is a word that has been popping into my head a lot of late.  So many of us always look at our lives as a glass half empty rather than half full and never look at the bigger picture.  We are never happy with what we have and crave for something else be it loosing weight, a car like so and so down the street, marriage, friendship, promotion the list can go on and on.

I once found myself moaning and complaining about the kids acting up and misbehaving in front of a couple who have had major difficulties in getting pregnant and weren’t able to have kids and I when I caught myself on I just wanted the ground to open up and swallow me I was so embarrassed and ashamed of myself.  From then on I have always tried to think before I speak and be thankful for the things that I have.

A few years back I decided that I was going to try and go back to work, which I did for 15 months before I wised up and resigned.  In those 15 months I discovered exactly what was right under my nose and I couldn’t see it.  I had a husband, three amazing children and a home that needed my attention.  I had been selfish and had put my own needs before that of my family.

My mum has a saying “separate your needs from your greeds” I don’t often like to admit when my mum is right but when you think of it it is true.  We always want something else what we have is never enough.

At the weekend I set a challenge on my Facebook page for people to list something in their lives that they are grateful for and not one person commented.  Why aren’t we happy with what we have?

I am thankful for the life that I have it is not perfect but I am thankful for it anyway.

Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.       1 Thessalonians 5:16-18 16

What are you thankful for today?

Losing The Battle….Winning The War

I am supposed to be running the Longford Marathon in two weeks time. It was the target I set myself after completing the Belfast equivalent in May and some of you may recall I blogged about my intentions at the time. I thought it was a realistic proposition and I could juggle it with all my other competing priorities. I had before, right? I’m Super Stephen and you name it I can do it.

Wrong.

I’m not super. Far from it. And as I neared Longford I realised I wasn’t quite there. I was a couple of long runs short of where I needed to be. My times weren’t quite right, my diet hadn’t been great and other matters had meant the running had slid further down the pecking order. There have been family issues, work demands and the little matter of wrestling with a 120,000 word manuscript.

This has sucked both time and energy from my sails. I have been left stranded in the running doldrums. So I’ve taken the decision to miss out on Longford and instead aim for the Causeway Coast Marathon at the end of September. It ticks a lot of boxes for me at the moment. It’s closer than Longford and offers a greater challenge as it incorporates road, trail and beach sections.

The latter mean that it is not a Personal Best course. I can take my time and enjoy the experience, take in the amazing scenery and not place myself under quite as much pressure. Because, whilst pressure can inspire and motivate, it can also deflate and crumple dreams and ambitions. At the minute I’m trying to convince the voice in my head that I’ve made the right call.

The voice that nags and niggles my every thought, telling me that I’ve bottled it and taken the easy way out. I’ve fought this voice for most of my adult life. It has been at the heart of many of my most spectacular personal car crashes. Always pressing the accelerator and taking stupid, unnecessary risks when I should be adhering to the speed limit and checking my rear view mirror at regular intervals.

Although not defined or restricted by her disability, Hannah’s spina bifida means she requires our constant care and attention. Fionnuala’s health has not been great this summer either and Rebecca starts junior high school next month. Adam is about to start a big year as well, both academically and with regards his rugby. They all require me to be around, as a husband and father.

Something has to give and, this time, it is the Longford Marathon. Who knows, Causeway Coast may have to give as well because there simply aren’t enough hours in the day to squeeze it all in. And if the voice regards that as failure then so be it. I’ll take that one on the chin. I believe it requires more courage to say no and hit the brakes as opposed to careering blindly over the edge of the cliff.

This is not defeat. Defeat is letting the enemy crush you so that you can never rise against it again. Call it more a tactical retreat. The most skilful strategists play the long game, they consider the bigger picture. They soar like eagles above the battlefield, seeing everything. They are blue sky thinkers, 20/20 generals. Wisdom is a 360 degree perspective. I want to soar with them. So farewell Longford.

There’s always next year.

Are you winning your battle?

What does the voice in your head say?

Hannah The Campaigner

We are not protestors by nature but yesterday took to the streets of Belfast with many other concerned parents to protest against plans by the Education Authority to close seven special needs schools in the Greater Belfast area and merge them into three ‘super schools’ which would be created to cater for students with physical disabilities and learning difficulties.

Our daughter, Hannah, has been attending one of these schools, Fleming Fulton, since she was three years old. Hannah was born with spina bifida and hydrocephalus and is a wheelchair user. We were very proud of Hannah yesterday as she spoke at the gates of Belfast City Hall in front of hundreds to express her opposition to the proposed closures. Here are some of her words.

‘I was born with spina bifida basically my legs don’t work but my brain does and that’s thanks to the hard work and dedication of my parents, doctors, teachers and workers at my school. I have been going to Fleming Fulton since just before my third birthday, it is like my second home, I have made the best of friends that will stay with me for the rest of my life.

If the Education Authority goes through with what it is planning I will be separated from my friends and will have to go to a different school which I don’t want to happen. I love my school the way it is and don’t want it to change.’

Fionnuala and I are proud of all the kids but Hannah took the bar to a new level yesterday. Sometimes you have to stand up to the faceless government mannequins who put cuts before kids and who deny our most vulnerable young people the education and health care they are entitled to. Hannah deserves better and she spoke out for herself and her classmates today. She made us very proud parents.

This is a full recording of Hannah’s speech if you would like to hear it.

Detox Day

Fionnuala suggested the other evening that I undertake an endurance challenge for January 2018. It involves running 150 miles during the month and logging them on my Garmin watch. At the end of the month I e-mail the challenge organisers a screen shot of my mileage and, in return, I get a medal and compression top. Not bad for £14. Plus, as ever, I will be running to raise funds for SHINE Charity, a cause very close to my heart.

I like challenges. No, let me rephrase that, I need challenges. Even in work I may moan about it at the time but I work well under pressure and to a deadline. A certain amount of pressure can be healthy. You need to be tested in order to examine your outer boundaries and then go beyond them. So I am grateful to Fionnuala for discovering this fresh challenge for me. She is always thinking of new ways of stretching me. Either that or this is her polite way of getting me out of the house more over the next four weeks.

I’m setting out on a ten mile run this morning as my first leg of the challenge. No time like the present right? The challenge is perfect training preparation for the marathons and half marathons I plan to run throughout the year. I used to experience a different type of alcohol related pain on New Years Day so it will be invigorating and liberating to start the year off in this fashion. I feel as if I will be on the front foot and ahead of the game.

I am also going to use the ‘me’ time alone on the road to think and pray. It is important that we all get this downtime whatever our belief systems. As ever I hope to leave a few of my demons out on the road and return home a more focused and decluttered individual. Running for me is like my writing. I use it to detoxify my soul and spirit, to unburden my heart of worries and fears. It is an act of cleansing and purification; a precious purging.

However you spend the first day of this new year I hope you find a little ‘me’ time to tend to your own mental and spiritual needs. I’ll see you on the road.

How did you spend the first day of 2018?

How do you intend to detoxify this year?

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

Marathon Finished

I’ll post a proper review tomorrow but just a few lines tonight to say that I completed the ‘Loop of the Lough’ Marathon today in a time of 3:54:55 getting under my target time of 4 hours. I also raised some money for SHINE Charity in the process.

Thank you to everyone who has supported me on WordPress. I’m recovering now with a Chinese takeaway now and a hot bath. Although not at the same time….

The 26.2 Mile Turkey Trot

As I’m not the sharpest tool in the box (just ask Fionnuala) it only struck me this morning that the marathon I have been training for (and boring you about) these last few months falls during the Thankgiving Day weekend. This is not celebrated in Northern Ireland but as most of our followers live in the USA I thought it appropriate that I mention it.

So while most of you will be eating yourselves into a food induced coma I will be trudging 26.2 miles. It will more than likely be raining (it is Northern Ireland after all) and near freezing temperatures are forecast for this Saturday. I will be wet, cold and aching from every joint. And what’s more I’m paying the race organisers for the pleasure. So what is there to be thankful for about running a marathon on Thanksgiving weekend?

Well firstly is the fact that I can run at all. I struggled with injury and illness throughout the summer so the fact that I am participating at all is something I am grateful about. My training has been tough and it’s only over the last month or so that I’ve begun to regain a semblance of my former fitness and form. I’m thankful that my body has healed and that at this stage in life (I’m no spring chicken anymore) that I can even contemplate such a challenge.

I’m running the race for SHINE Charity (Spina Bifida & Hydrocephalus) and have been raising funds for the cause which is very close to our heart. Our daughter, Hannah, was born with both disabilities and is a wheelchair user. She can’t run….yet. I can. So this race is for her and all the other kids in wheelchairs. She hasn’t let her disabilities stop her from living life so why should I let a few strained ligaments and a virus stop me from running my race.

I’m thankful I will have my family on Saturday. I take them for granted too often. They have supported me at my very best and my very worst. I will be thinking of Fionnuala and the kids every step of the way. I’m thankful that, whatever happens during the race, I will be going home to a warm home with people who I love and who love me back. I don’t deserve what I have but I suppose that is what grace is all about. Undeserved favour.

I’m thankful that I have this forum to write. I’m thankful that people read the blog and take the time to comment. I’m thankful that I have a good job and have been blessed with a modicum of talent. I’m thankful that the crazy ideas that bounce about my head are solidifying into a novel. I’m thankful that I’m free from the demons of my past. I’m thankful that my eyes have been opened to past mistakes and poor decision making. I’m thankful for the friends I have and thankful that others are no longer part of my life.

No life is perfect but we still have much to be thankful for. I thank God I’ve been given a 473rd chance.

To all our American friends Happy Thanksgiving Day!!

What are you doing for Thanksgiving Day? Running a turkey trot? Or eating lots & lots?

What are you thankful for?

The 1% Is A Liar

Yesterday was my last long run before the ‘Loop of the Lough’ Marathon which I am running for SHINE Charity (Spina Bifida and Hydrocephalus) around Strangford Lough, Northern Ireland, next Saturday. The run went well and now it just a matter of keeping things ticking over and continuing my disciplined taper until the big day itself. The nerves are well and truly starting to kick in now for a number of reasons.

Although this will be my 7th marathon in total, it’s my first in over 18 months, and a sliver of icy self doubt remains lodged in my brain. Hard as I’ve tried I have been unable to budge it despite knowing deep down that I am capable of this. The target for my comeback at 26.2 miles is sub four hours and my training programme has been tailored specifically around this time. Everything has went exactly to plan. Yet still the sliver remains, burrowing deeper and deeper into my consciousness no matter how hard I try to ignore and repel it.

Doubt is the most sly and subtle of enemies. When all you want to do is build a wall of fact and certainty it drifts through the slightest of cracks like cannon smoke on a battlefield. You can be 99% certain of something and doubt will lob that 1% into the equation like a cluster grenade, exploding to create havoc and ruin within your carefully constructed defences. My OCD is fuelled by doubt; the ‘what ifs’ and ‘but maybes’ having a field day no matter how many times I attempt to drive them away. They thrive on uncertainty and relish hesitation. They sow the deepest of roots, so hard to dig out and destroy.

I fear the 1%. It batters me from all sides like the fiercest of hurricanes. I see it wherever I glance. The same applies to my writing. The 1% tells me I’m not good enough, I’m too old, it’s all a pipe dream and my chance is long gone. The more research I conduct into finding a literary agent and publishing a novel the more complicated and unlikely it seems. Even if I do complete it, even if it is half decent, the market is brutally competitive and the chances of being noticed seem remote. The 1% raises its battleaxe and screams in my face ready to cleave my hopes and dreams in two.

It is daunting but I cling to the shaky belief that the 1% is a liar. It whispers and it screams but I have to turn my back and walk away. The lies are a blizzard of darkness; jumbled memories, words, faces and images. Their timing is impeccable, their intent wholly malicious. But I choose different numbers. I choose the 500 plus training miles I have ground out since the summer. I choose the 30,000 words I have written to date. I choose the millions of words of love and encouragement from Fionnuala and the kids.

Freewill is a gift and I choose to wield it like a sword against my Goliath. To slay the dragon wrapped around my ambition, relentlessly squeezing the oxygen from my lungs. I choose the sword of truth, it’s blade so sharp that not even the toughest of armour or scales can withstand it. I stand on the ramparts of my mind and I watch my enemies flee, my defences strong and intact. The past will not overcome me, it will not sweep me away like it once used to. Believe in your own abilities. Believe in your inner circle.

Believe in the 99%.

How big a part does doubt play in your life?

How do you battle it?

What is your dream?

My Big Sister Hannah

My sister is called Hannah she is 13 her date of birth is 10th December 2003. My sister’s full name is Hannah Catherine Black. My sister is special because she is my big sister. When my sister was born she had to stay in hospital for two months because she had Spina Bifida and she needed some operations. For Hannah’s first year she had to wear leg splints to straighten her legs.

Just after I was born Hannah got her first wheelchair it was pink with Disney Princesses on the wheels before this when my mum and dad were going out they had to put Hannah in a buggy.

When Hannah was six she made a wish with Starlight and we got to go to Florida and her wish was to swim with dolphins and feed giraffes. Our Great Aunt Sue and Uncle Pat came with us they are my mum’s aunt and uncle.

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My big sister is a brilliant singer and dancer she has been Cinderella in her school play in Nursery and that was the lead part of the play. She was Jack’s mother in Jack and the Beanstalk. She was Pepper in Annie the musical and so was me and my big brother. She has sang in the Waterfront and in the SSE Arena in Belfast and she has sang in Belfast City Hall for the Lord Major and the Duchess of Gloucester three times. Last year she was in a pantomime Jack and the Beanstalk with the Waringstown Players as a Villager.

This week Hannah got her new electric wheelchair this means me and Hannah and my big brother Adam will be able to go outside and play more.

This is Hannah’s favourite things:

Make up
YouTube
Drama
Singing
Netflix

In Hannah’s room she had to get another desk one for all her make up and one for her homework and all that stuff. Sometimes when I got into her and go to her desk to ask her something I feel like I’m in Boots Makeup and Beauty Store. One of her favourite things in the hole world would be YouTube. Her favourite YouTubers are Saffron Barker, Alfie Deyes, Joe Sugg, Zoe Sugg, Roman Attwood and Tanya Burr. This Sunday Hannah is going to meet Saffron Barker at a book signing in Easons in Belfast and she cannot wait.

Netflix – Hannah loves Netflix and TV I don’t know what Hannah would do without TV and WIFI so I don’t.

Hannah is so beautiful and pretty I really couldn’t do anything without my big sis Hannah. I always look up to my sister and I don’t think I could have asked for a better sister and I am really proud of how talented and brave she is and I hope that one day I will be like her.

by Rebecca Black Aged 11

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

Real Running

The ‘Loop of the Lough’ Marathon is five weeks today and, this morning, I set out on a 20 mile training run. The next 2-3 weeks are the toughest part of the training plan before I cut back the mileage in the final fortnight before the big day itself. This final period of the training is known as tapering. All the hard work is done and it is just a matter of keeping ticking over, eating and resting properly and avoiding injury.

I was quite nervous before I set off today as this was my longest run in well over a year. I was anxious that my legs would give out on me. Facing a 20 mile run is a daunting prospect and the doubting voices in my head were having a field day. They did their best to convince me that I would flop spectacularly but I set off anyway, more hopeful than confident. I am training for a sub four hour marathon so need to average 9:09 minute miles or better in order to hit my target.

The first four miles or so went well as I headed out a long stretch towards Lough Neagh. I felt strong and was averaging decent mile splits. Then the heavens opened. A light drizzle at first which gradually intensified. By Mile 6 I was well and truly drenched but thankfully there was no wind to accompany it. As a runner I can live with rain; when it’s combined with a headwind, however, it can play havoc with a pacing strategy. There is nothing worse than slipping off your pace and watching all your race dreams disappear in a puff of smoke.

I stopped at the house at Mile 10 for a quick drink and towelling off, then it was off again. From then on it was just a matter of counting off the miles and trying to ignore the mounting pain in my thighs. I play games with myself, picking out landmarks in the distance and trying to guess how far away they are. I check my Garmin watch every 0.05 of a mile, try to work out how much more I have to run as a percentage, estimate what my mile split will be every 1/4 of a mile; anything really rather than listen to the voice telling me to give up and stop.

By Mile 15 I was about four minutes inside my target time so could afford to relax a little. Having a few minutes in the bank is very reassuring. I prayed periodically throughout, thanking Jesus for allowing my body to be able to do this and asking him to give me the strength and focus to keep going. I’m not fast but I do have stamina. My final two miles were roughly at the same pace as my first two. I finished wet, cold and aching all over. But five minutes inside my target pace. Now all I have to do is repeat that in five weeks time. And then run another 10K on top of that. 


I’m sore but pleased. The old me would have wanted to brag about this run all over social media and posted lots of photos of yours truly looking pleased with himself. I thought twice about not writing about the run at all but decided to in the end. Running helps me physically and mentally. It is part of who I am so if I were not to refer to it then you would only see part of the real Stephen. And that’s what I want to be. Real. I want to show you the good, the bad and the ugly.

The old me only portrayed a false and misleading persona. I craved attention, was vain and obsessed over running faster and faster every race. In five weeks time I won’t set a personal best and I won’t be bombarding you all with selfies. But I will plod round, hopefully avoid injury and raise some money for charity along the way. I’m just grateful at the end of every run I have a loving family to return to afterwards. For without them, I am a gibbering wreck. They inspire me to be the best possible person I can be. Without them I am nothing. I’m running the race of life with them and for them. With God to guide me.

Psalm 119:32 – ‘I shall run the way of your commandments, for you will enlarge my heart.’

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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Happy Hannah 

As you may have read in previous posts we have been fighting a largely uphill battle for over six months now with our local health trust. The reason? To obtain a new wheelchair for our 13 year old daughter, Hannah. To the point where we had given up all hope of getting one.

Given this we decided to raise the funds ourselves. I had planned to run a series of marathons and half marathons over the next six months and Fionnuala was organising several events including a sponsored walk and ‘Strictly Come Dancing’ night. We have also set up a Just Giving page online and kind people had already donated in excess of £500.

Today we attended a meeting where we were told that the health trust has reversed its decision and Hannah will be provided with the motorised wheelchair she requires. We were flabbergasted at the u-turn which he have put down to our local political representative becoming involved. And a shedload of prayer. 


When we had recovered from the shock we were faced with a dilemma, however. As Hannah now has what she needs what do we do regarding the funds already raised and future planned events. We were left with two choices. Either cancel the events and return the money to those who had already donated. Or press on and go ahead with them.

We have opted for the latter option. While we are going to allow people who have already donated the money to have it returned if they wish, all funds raised from this point onwards will go to SHINE Charity which supports individuals and families affected by Spina Bifida and Hydrocephalus.

 This charity has supported us since Hannah’s birth and we feel is the only choice we had when we learnt that God had answered our prayers. As his grace shone on us now we want to ‘pay it forward’ and shine a light on this worthy organisation who do so much important work in respect of disabled people. 

We have been blessed. Now we intend to bless others.

Proverbs 3:27 – ‘Do not withhold good from those to whom it is due, when it is in your power to act.’

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

 

The Butterfly

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 which thankfully doesn’t require medical attention as I’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 a son Adam who 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. Life was good and our baby was due on Christmas Eve.  We were really looking forward to our big scan coming up and we decided that we were going to find out the sex of our baby this time. I was just too impatient and had to know.

On the morning of our scan we left Adam off at my mums and headed off to the hospital.  My mum is amazing she knows everything about everything and I am just like her!  When I was pregnant with Adam I used to give off because I was never called to see my consultant. I always just got one of her registrars and my mum told me stop your complaining you will only see your consultant if there is something wrong.

We were so happy that morning and excited to see our baby and find out if it was a boy or girl.

Eventually my name was called and in we went.  The scan was underway and there wasn’t very much talk out of the sonographer so we asked her to let us know the sex of the baby. She told us she would see what she could do.  She took a lot of time doing the scan and was extremely quiet and I can remember thinking she is being very thorough. Then she said she thought we were having a girl but it was hard to see as the baby seemed to be sleeping. She then said she just needed to nip out for a moment.  I still didn’t think anything was wrong at this stage. I was getting excited and thinking about which shops I was going to hit after I left the hospital to buy everything pink I could see.

A few minutes later a woman entered the room with the sonographer and introduced herself to me as my consultant and my heart sank as I knew there was something wrong.  She scanned our baby and then informed us that our baby had Spina Bifida and possibly hydrocephalus and that things were not looking good for her.  I can remember thinking that this can’t be happening to me things like this don’t really happen it was all a bad dream.  I could see her mouth moving but I couldn’t hear anything.  Next thing I knew there were other nurses in the room with us and I looked at Stephen and he had turned grey; that’s when I knew it was real.

I had heard of Spina Bifida before but didn’t know what it was or how it would affect our baby girl.  We were fortunate enough that day that the doctors and consultants who we needed to speak with were there to give us information and tell us what to expect.  We spoke with one doctor who told us that our baby if she survived the pregnancy might only live for seconds, minutes or days and if she did live she would be both physically and mentally disabled.  She wouldn’t be able to talk, walk and in his words would be brain damaged.  He advised us that we should have our pregnancy terminated and gave us 24 hours to think it over.  I can remember thinking there is no way on this earth I am giving up on my baby and was worried my husband wouldn’t have thought the same as me.

The doctor left us alone for a few minutes and we both agreed there and then that we were not giving up on our daughter and we were going to cherish whatever moments we were going to be blessed with her and remember them always.

We told the doctor our decision but he still insisted that we think it over and really did try and persuade us to change our minds.

At this time my husband belonged to a Presbyterian church and I belonged to a Catholic church but to be honest neither of us ever practiced our faith or even prayed and when we look back now we have both wondered how we get through that part of our lives when we weren’t walking with God. We do believe now that this was all part of God’s plan for us.

My mum works in a convent beside the hospital and we left and went over to see her and told her what had happened.  As soon as she saw me she just knew that we had received bad news in fact she knew when I was at her house before I went to the hospital.  From that day nuns and priests the length and breadth of Ireland were praying for our baby.

The next morning at 9am my husband rang the doctor and told him that we were not giving up on our baby and going ahead with our pregnancy.  The remainder of the pregnancy was just full of appointments monitoring everything with the baby and each time they were giving us the most terrible news but we were still not giving up on our baby girl.

I experienced very mixed reactions from people regarding my pregnancy; both of our families were very supportive but what shocked me was my friends that I had been through everything with telling me that I was being selfish and not thinking of Adam and how it was going to affect him; another friend of my mums asked her, in her words, “why did she not get rid of it”.  They couldn’t understand that whatever time, whether it be long or short, we were going to have with our baby was going to be the most precious time of our lives.   I know I couldn’t have lived with myself if I had have given up on her and I now thank God that it was us that he trusted with that decision for our baby and not them.

I got a real strengthening of faith over the next few months and started going to mass and praying more that I probably ever had before.  The nuns prayed for us every day and they had a few special masses for us.  The last mass that was said for us was the weekend before I went into hospital for a C Section to deliver our baby into the world.  During the mass I noticed a beautiful butterfly on the altar and it stayed there all throughout the service. I can remember thinking I have never seen a butterfly in December before as in Ireland this is very rare.  At the end of the mass one of the nuns lifted the butterfly and brought it over to me and placed it in my hands.  Now if you have ever tried to lift a butterfly and carry it across a room and place it in another persons hand it is extremely hard to do.  The butterfly just sat in the palm of my hand and didn’t move, I actually thought it wasn’t real until it started to flutter.  This butterfly has always stayed in my memory and I have always thought there was something very significant about it.

When thinking about this recently I googled butterflies in the bible and was guided to the following  scripture  2 Corinthians 5:17-18 “This means that anyone who belongs to Christ has become a new person.  The old life is gone, a new life has begun.  And all of this is a gift from God.”

The Christian symbol of a butterfly is the resurrection of Jesus.  The caterpillar disappears into a cocoon which is like the tomb Jesus lay in after he was crucified; after a while the caterpillar emerges from the cocoon having been transformed into something more powerful – a butterfly.

To me the caterpillar represented my life before I became a Christian. I was stuck in the earth dirty and ugly with sin.  Then I stopped running and hiding from God; he saved me and transformed me into a new creation – a butterfly.

On 10th December 2003 at 10.30am our baby girl Hannah was brought into the world weighing a whopping 8lb 12oz.  She defied everything the doctors had said and would continue to do so.  My husband had a quick cuddle with her before she was taken away to the neo natal unit.  When I was brought out of theatre I was brought to see Hannah it was very funny she was the biggest and healthiest baby in the neo natal unit filling the incubator with this massive head of brown hair. I knew then and there that she was a fighter and that everything was going to be just right.

I didn’t get to see Hannah again until later that night. I couldn’t settle back on the ward and one of the nurses on the night shift said that if I was able to get out of bed they could get me a wheelchair and take me up to see her.  She didn’t have to tell me that twice I was up and out of bed right away.  When I got to the neo natal unit the doctor  was doing the rounds and he told me yet again how my baby wouldn’t walk, talk or be able to do anything for herself and that we wouldn’t know until she was a year old what damage there was going to be to her brain.  I was petrified as it was nearly midnight and I was sitting here on my own in the hospital with my baby in an incubator and I still couldn’t get to hold her.  The nurse came and brought me back to the ward and gave me a sleeping tablet to help me sleep but it never happened and I couldn’t wait until morning when my husband would come and see me.

The next day our little girl was transferred to the Children’s Hospital to have her first of many surgeries and that evening I signed myself out of hospital and went to see my daughter where I finally got to hold her for the very first time.

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On Christmas morning we got the best present ever and we were allowed to take our baby girl home from hospital.  The first six months of Hannah’s life were spent in and out of hospital and either myself or her daddy were with her at all times and Adam was never neglected or felt deprived in any way.

Hannah is now 13 years old and she is the most amazing and outgoing girl you could meet.  Don’t get me wrong she is a typical teenager; mood swings and temper tantrums are a daily occurrence in our house.  Hannah did and continues to defy everything that the doctors said she couldn’t do.  She can talk, boy did they get that one wrong, the only problem we have there is getting her to stop!  She sings, dances, writes, reads and is currently rehearsing for a Stars in their Eyes charity show to raise money for a Children’s Cancer Unit.  The only thing the doctors got right is that she can’t walk and so far she hasn’t proved them wrong but we pray and believe that one day she will if it’s part of God’s plan for her.

My advice to anybody that finds themselves in a similar situation in their life is to have hope and faith in God as there is nothing that he will take you into that he can’t help you get through to the other side.  We are all God’s children; he has a plan and purpose for each and every one of us and he knows it before we are even created and has it written out on our scrolls in heaven.  We are all different and unique in our own way.  Some of us are black, some of us are white, some tall, some small, some thin and some not so thin and then there are the Limited Editions who have a very special, unique plan that only God knows what is ahead for them.  Every baby deserves a fighting chance of a life and it is God’s decision as to how long or short that life will be.

Psalm 139 v13-14

For you created my inmost being; you knit me together in my mother’s womb. 

I praise you because I am fearfully and wonderfully made;

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