It is that time of year again when I find myself thinking back to when Beth was born, on the 12th September. Unbeknownst to me, I was about to embark upon a journey as a mum that would change me forever.

There is no doubt that the changes for me personally were, and still are, challenging but they opened up an entire new world. A world that is filled with a greater depth and breadth to my emotions and experiences. The age-old question however echoes in my thought process …. Would you change anything? and again I wrestle with my reply . For me? no I wouldn’t change the love I have experienced and the witnessing of God’s eternal companionship and all that Beth has added to our family.

For Beth? I would say yes. I would change the hurt I see in her eyes when she is excluded. I would change the questioning look on her face when she turns to me, asking why she is different to her sisters, cousins and others her age. I would change the fact that Beth will not be able to live independently; she will be vulnerable to hate crime and exclusion from many areas of society.

Over the past 24 years I have come to the sad realisation that it isn’t Beth’s limitations that exclude her and cause her to look at me questioningly with hurt, it is Society itself. It is governmental decisions; it is a total lack of support and funding for social care and more profoundly the absence of a social conscience in our community. Lets look at our time throughout lockdown and the stories that have been told about families and carers of those individuals that are our most vulnerable. Day services, activity groups, service providers all were forced to reduce their hours or cease due to underfunding and staff sickness. Thankfully Beth had us, her family, to care and protect her but what of those who are not as fortunate. I read some heart wrenching accounts of families trying to cope on their own with little or no support from anyone, least of all the community they lived in.

Does society have time for individuals such as Beth? Do we give them our time? Do we encourage socialisation and reduce the threat of loneliness and isolation? Do we try to give them our understanding? Do we offer them employment opportunities? Or do we simply adopt the attitude that if it doesn’t touch us then we simply do not get involved, it is someone else’s problem.

I have to be honest and say that at times throughout Beth’s life we have encountered this attitude. We have many times experienced very little consistency and continuity in what is made available for Beth, in terms of support. Many it appears do not want to commit or it is simply not their remit, and the reality of this is that Beth suffers. There is always a very plausible excuse, such as a lack of funding to keep a programme running, an inadequacy of resources, or a change of personnel. The very services that are set up to protect and support Beth, are at times sadly deficient in what they have to offer. It would be fair to suggest that this system is broken, it’s not working and failing many. None of this is anything to do with Beth’s difficulties, or limitations, it is down to bureaucracy, and the inequalities that exist in our society today.

This all reads very negatively but sometimes I feel it is important if society is to change, people such a myself have to raise their head above the parapet and speak out and say society has got it wrong. If we were to follow Beth’s rules for life, I firmly believe we would have a blue print for how society should behave and act.

I was asked not so long ago what do I do when negativity and reality comes crashing in.

Well for me personally it is my faith and relationship with God that saves me. Without my faith and hope in God I would cease to function. It isn’t a crutch for me to bring out and use in times of trouble, it is an ever-present support system, one that carries me when I need it, but also enables me to walk independently. Ultimately it refreshes me and fills me full of an endless supply of hope and expectation of what God can do in Beth’s life and ours as a family.

A very dear Pastor wrote recently, that one of his favourite quotations is at the beginning of Romans 12: ‘Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind.’ I believe that God doesn’t want Beth or us as her family, or any one for that matter to strive to fit in but to follow his will. The pastor asks us to consider Colossians 3:2-3 Set your minds on things above, not on earthly things and that is exactly what I try to do. I refuse to judge Beth by society’s standards and I fiercely defend the decision we have taken, not to force Beth to fit societal norms.

So as we celebrate Beth’s birthday this Saturday I will, as always, look on in awe at the beautiful woman Beth has become. I, along with Beth’s sisters, dad, extended family and friends will also be celebrating her resilience and ability to overcome the daily challenges she faces.

As her mum I will sit quietly thanking God for his amazing love that shines through Beth. I will marvel at how he made a masterpiece. I will be celebrating Beth’s uniqueness.

Happy Birthday Beth.

Leaving school.

I can remember a few years ago how the two words above filled me full of fear and a sense of dread. 

If our children are to successfully move forward leaving school, as Beth’s mum, I would encourage all parents to follow a structured and supported transition programme. These programmes are offered through school and external providers.

We were first introduced to Orchardville through Clifton School, where Beth was a pupil until the age of 19. Beth embarked upon Orchardville’s transition programme that saw her completing courses such as managing money, travel training, and preparing for work. Beth even took part in a mock interview she had to compete an application form and apply for a job. Orchardville organised for an external professional from the local business community, to interview Beth and the rest of her peers. I have to admit this was not just daunting for Beth but all of us as a family. From this mock interview Beth learned vital skills on how to introduce herself, to enter a room full of strangers and how to dress appropriatelyfor an interview but mostly it built on her confidence. Beth received constructive feedback in a simple and manageable form that she understood and has since used in a variety of settings over the past few years. 

Beth carried out many exercises to develop her independence, these not only built on what she was learning in school but it also highlighted where Beth’s interests lay, in relation to the world of work. Job sampling followed and Beth one day a week worked in a variety of settings e.g. a school, coffee shop and a children’s day nursery. By spending one day a week out of school and travelling to her place of work, Beth’s anxiety levels were lowered and her fears of leaving the safety of Clifton school began to ease. As a mum and indeed the whole family, we watched Beth’s confidence and self-belief soar.Orchardville were complementing the work in Clifton and building a self-realisation in Beth that she could achieve success, within the world of adulthood and work.

This placement every week was a challenge for Beth and if I am being honest it was a challenge for me as her mum. I knew if the transition from school – work was going to be a success I had to let go, trust Orchardville and allow Beth a greater degree of independence. It wasn’t easy for any of us, the transition programme however did not only support Beth but through their communication with home and school, they offered us, as a family, a wide range of information, in-depth advice and vital sign postingin relation to social services and other avenues of support, they met us at our greatest point of need.Meeting the transitions officer early on in the process allowed for Beth to form a positive, encouraging relationship and also a level of trust, we also benefitted from this relationship building.Embedding the logistics of transition from school early on I feel is vital for our children, if it is to be successful.  

Beth has two older sisters and, as parents, my husband and I always believed they should have every opportunity open to them so that they could make informed choices for their futures and we wanted it to be no different for Beth. I believe this is what Orchardville’s transition programme did for Beth they offered her opportunity but also they, along with Clifton school, laid the foundations and building blocks necessary, for Beth to successfully make the transition from school into the world of work and beyond.

Preparing any young person for the future is not without its stresses and worries but for individualslike Beth it can be a terrifying and anxiety filled experience and as a mum, I believe if not planned and implemented correctly it can have massively negative implications for the future. Had it not been for Orchardville’s trained staff walking through the programme with Beth, I do not think she would have progressed as far as she has today. Beth won’t mind me saying that anxiety is a major deal with us and if anxiety levels rise this impacts on Beth’s overall physical and mental health and well-being. If providers such as Orchardville are not able to offer a transition service, I truly believe we will see an increase in young adults with a learning disability and/or autism being unable to access, worth whileand sustainable employment. We as a family have witnessed first hand that employment in Beth, be it paid or voluntary, brings self-worth, a sense of pride and a sense of achievement. This in turn builds confidence enabling Beth to want to try new and different experiences. The transition programme met a need in Beth that we were unable to, throughout the process Beth was actively prepared in her journey to leave school, whilst developing in her a readiness for work.

I now look back at that time in Beth’s life and I remember the fears and worries we had for her and I also recall her anxiety. I know, as a parent, the worth of the transition programme and all that Orchardville put in place for not only Beth, but for all the pupils in her class. With their input Beth was able to confidently and more importantly, happily look towards the prospect of ‘moving on’ and leave school. Beth was able to enter the stage of adulthood and embrace all that it would bring.

Belfast International Airport deserves praise, for the continued introduction and use of their sunflower lanyard.

By wearing this lanyard discreetly around her neck, it reduces Beth’s stress and anxiety and makes the journey of travelling through security and airport as a whole, effortless for us all as a family.

Beth also wears the lanyard in other airport destinations and Faro airport in particular, is excellent at providing Beth with the reassurance she needs. I also should at this point record that easyJet staff are very accommodating.

We do not ask for special assistance, we don’t need any fuss or attention drawn to us, we just need a little patience and understanding. To date we have always received this, unfortunately on our most recent trip we came under criticism when some very unforgiving passengers complained loudly to anyone around them who listened, that we were jumping the queue to board the plane. It was further disappointing to observe other passengers agreeing with the statement being proclaimed ‘wouldn’t it be great if everyone could just walk up to the front of the queue and board whenever they wanted.’ sadly Beth was standing on the other side of the barrier watching the reaction of these passengers and heard everything they said.

My husband kept his back to the passengers silently praying that they would keep quiet, I on the other hand with my heart banging in my chest, addressed the individuals and politely explained that our daughter merely required a little extra time to board the plane. When walking to the plane an older lady in a wheelchair took my hand and whispered ‘don’t worry love they are just too shortsighted to see that sometimes the disability in a person is hidden’. Another gentleman piped up ‘people just don’t think and are so selfish’

So to all travellers, on behalf of Beth, take a minute to stop and consider… What does it matter if someone appears to be queue jumping, ask yourself why this might be.

With all of my heart I can tell you now, I would love nothing more for Beth to be at the back of the queue with everyone else, waiting her turn.

If there is one thing that I have learnt throughout the past 23 years is that family is everything. They are; your go to people, your strength, support and forever faithful. Without my family I know for sure Beth would not be the wonderful individual she is today and I would have foundered years ago.

When Beth was born I only got to hold her for a few minutes before she was taken to the special care baby unit. I asked my husband to ring my mum and he put the phone to my ear. Mum will often recall our conversation, it was brief and to the point… ‘Mum please go and see my baby, we need you’. When my mum came up to the ward, both my husband I knew from her face that she was worried but in true mum style she smiled and reassured us both that everything would be fine. That’s how it has been for the past 23 years and beyond, mum in the background holding us all up and holding my mum is my dad.

In our family my mum and dad are known as granny and papa and they are the centre of Beth’s universe, they give her a feeling of security, safety and a never ending supply of love. She loves them unconditionally and tells them every single day ‘I love you granny and papa’. Every morning before work Beth steps through our garden gate, opens their back door and you can hear her shout ‘morning granny’ this is quickly followed by ‘hi papa’. There usually ensues a conversation about how well Beth is looking and a detailed account of what the day ahead holds for everyone.

In the early days my mum and dad looked after Beth and her sisters, whilst I was able to work fulltime and pursue my career. They shared in taking on, the responsibility of her treatment and therapy and my mum was always there to wipe away my tears which was, back then, most days. My mum was and still is, my voice of reason. When Beth was hospitalised my husband, mum and I worked as a team, sharing feeds and visiting time. My ever-dependable dad would be ‘holding the fort’ back home with Beth’s sisters.

I look back now and I am in awe of what my mum and dad have done for our girls but in particular Beth. They have been there every single step of the way with my husband and I.

One particular memory I have is when Beth had a review appointment with the occupational therapist. These reviews were always quite stressful, as I would endeavour to record all the improvements and progression I felt, as a mum, Beth had made since the last appointment. Beth and I would set off together, dressed in our best and I would be full of positivity and optimism. This particular appointment however was, to say the least, more than a little negative!

I remember relaying to the professionals all what Beth could do and how hard we had worked at home to develop Beth’s motor skills. The occupational therapist waited for me to finish and then turned and said ‘well you understand that those are merely functional things that Beth is attempting, there is absolutely no skill involved’. My heart plummeted, my positivity shattered and through my tears I looked down at my beautiful baby daughter, sitting propped up on the floor. To me she had every skill in the world and if she didn’t, she had a family that would more than compensate for anything, that the so-called professionals said she lacked.

I broke my heart that day, I was being denied the joy of just loving my baby as she was. I drove home to my mum and dad’s house, my mum saw me at the top of her driveway and she simply came to me holding out her arms. Mum had been waiting for me and seen my face and felt my sadness.

My mum had always made things right for me when things were wrong and there on that driveway, I wanted her to take this away for me and make everything ok again.

Of course Mum was unable to change anything, but she has over the years offered something so much better. She has walked beside me, always full of faith and hope, she has shared often the load with my husband and I. Mum taught me resilience and always to believe in myself and my abilities. I am an expert of picking myself up, dusting myself down and forging ahead. I believe I have my mum to thank for this spirit of tenacity, the same spirit that I know Beth also possesses.

Mum’s motto has always been to ‘live a life of love ‘and through example she has passed this onto all three of her granddaughters. Together Granny and Papa are a constant in their lives and an anchor for Beth.

For me, my mum will always epitomise the value of family life.

 

It’s time to celebrate 23 years of laughter, tears, a smile that shines out to everyone, boundless hugs & kisses and a limitless supply of unconditional love offered daily.

23 years of a very special someone who has an absolute passion to live life in all its fullness.

I promised myself that I wouldn’t cry as I type these words – too late! I can’t help myself; we are just so privileged to have this wonderful individual in our lives called Beth.

Let me share with you some of the things that Beth has brought to our family, over the past 23 years.

🎂Love – unconditional and in its purest form.

🎂Hugs – sad or happy, Beth has an innate ability to know when you need a hug.

🎂Ceaseless chatter & companionship.

🎂Lots & lots of fun.

🎂Endless laughter.

🎂Honesty – Beth will always tell you the truth, even when you don’t want to hear it!

🎂Discernment.

🎂Joy – Beth urges us to delight in the simplest of things.

🎂A smile that brightens everyone’s day.

🎂The meaning of tolerance.

🎂Through Beth we have developed a desire to recognise and embrace the differences in people.

🎂A spirit of tenacity.

🎂Beth has shown us how to ‘dance in the rain’.

🎂An appreciation of what is important in life.

🎂Thanksgiving for everything we have.

🎂By example, Beth has taught us to always put others first.

🎂Beth secures the bond that holds our family together.

🎂Beth has strengthened our spirit of faith and belief in God.

🎂Beth has taught us the gift of forgiveness; always the first to say sorry and offer out a ‘wee’ soft hand for you to take.

🎂The importance of always showing kindness.

🎂Beth empowers us, so that we can support and represent those who need it most.

🎂Humility – We are often humbled as we observe Beth’s resilience when having to deal with discrimination and often exclusion.

🎂Friendship – through Beth, we are surrounded by the most loving and supportive of friends.

So there you have it, 23 reasons why every day we celebrate ‘Our Beth’. Today on her birthday, however, we lift our eyes heavenwards & offer up an extra special thank-you to God for our beautiful Beth. There is nothing more we, as a family, could ever ask for. Happy Birthday Beth!

Love Mum, Dad, Bex and Lucy x

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#timetocelebrate🎉🙏 birthdaycake🎂 #presents🎁 #proudmum #oursunshinegirl #thatsmile #mumtoakoolkid #kdvs

Hypotonia/low muscle tone

We received the diagnosis of Hypotonia quite early on after Beth was born, we were told she was a ‘floppy baby’ and had a range of tests to assess her level of muscle tone. We embarked upon a programme of intensive physiotherapy but this was in blocks of six weeks and when these finished it was then up to us, as parents, to continue on with the therapy at home. It amazes me now to think we were handed a very basic poorly photocopied information sheet, that explained the specific exercises we should be doing with Beth and we just accepted it and got on with it. 

Beth was also fitted with orthotics to strengthen her ankles and support her walking. I cannot actually remember when all this support and input ceased but it did and, in our naivety, we assumed Beth’s muscle tone must have improved.

This is the one area of Beth’s life as her mum, that I feel most sad about – if only I had known then what I know now. Let me explain……To date Beth has had multiple knee dislocations and a double knee operation, this has thankfully, and very successfully, now secured Beth’s knees into place. We took the decision to seek advice from the private sector and used our private health insurance to have the surgery carried out. If we had not done so we would still be on the NHS waiting list and Beth would still, be experiencing a vastly reduced quality of life.

It makes sense if the knees could dislocate due to hypotonia then other joints could too, but no one actually explained any of this to us. Sadly we have now experienced a complete shoulder dislocation and a number of partial ones. It is only since our diagnosis of KDVS, that we have been able to discuss this with our geneticist and finally we are now, once again, following an intensive programme of hydrotherapy and physiotherapy. 

Beth’s entire body is affected by her muscle tone, by this I mean her kidneys, bowel and overall skeletal posture. What breaks my heart is that only now, twenty-two years later, do I realise that we should have been following a physiotherapy programme on a regular basis. Beth is a very active twenty-two year old and loved nothing more than going to the gym with her sisters and taking part in Special Olympics athletics. She was also a very keen cross-country runner but this has all but ceased, due to the risk of further dislocations. If only we had known earlier the consequences of low muscle tone, we would have been more proactive in relation to the benefits of physiotherapy. To be honest, we were never offered it as Beth got older, it only ever was an option, and a very limited one at that, during Beth’s early years development. 

Through Beth’s most recent spell in hospital we have had to face up to the reality that Beth’s muscle tone is impacting all areas of her health. 

We are now in the process of asking our geneticist to document the issues that Beth is facing, in the hope this will shed more light on Koolen-de Vries syndrome. We want other parents with ‘Kool Kids’ informed and equipped with primary facts about KDVS. What richer source is there than parents like us, who are observing and experiencing this syndrome on a daily basis. 

Our journey is made that little bit more difficult because Beth is the only individual, to date, who has been diagnosed with KDVS in Northern Ireland. General practitioners and medical doctors in local hospitals have very limited knowledge on the condition. This isn’t a criticism, it merely urges us to forge ahead raising awareness for other parents and medical staff alike.

So, if any parent is at the beginning of their journey with KDVS please, please be proactive in your requests for a continuous, on-going physiotherapy programme for your child, right into adulthood. It is not acceptable for the programme to cease when your child is no longer in preschool, middle or senior school. Make it a constant, everyday occurrence in the lives of your child. Neither accept that the programme is only required when trauma occurs – it should be built into the fabric of everyday life for your child. 

It is, by no means, too late for Beth and she is working hard to build up and maintain her core strength. It is exhausting and very painful for her, but as my photos on Instagram illustrate, she is still smiling that most wonderful smile of hers. 

A wee footnote as Beth’s mum… I suppose there is a part of me that blames myself for not realising sooner that Beth’s low muscle tone would eventually impact upon her health. The age-old recriminations threaten to come flooding into my thoughts, they are never very far away. Then I watch ‘our Beth’ and I know you will agree – one thing our children all have in common is their tenacity and resilience to overcome and battle courageously on regardless, so we  will do the same.

 

I always believed that if Beth received a diagnosis it would label her and put her in a box. This box would then restrict her, cap her development in some way and there would be no ‘great expectations’, only those that were already recorded and documented. Medical experts would declare ‘case closed’. 22 years on, and a year after Beth’s diagnosis of Koolen-de de Vries syndrome, I have come to realise with great clarity that perhaps I was wrong. A diagnosis would not label Beth, but instead allow us the opportunity to glance at what was ahead and, more importantly, prepare us for the things that, until a year ago, were completely unknown to us – those periods that took us to the wire in relation to Beth’s health.

So, for all those lovely parents out there who have been gifted with a very ‘Kool kid’ I am going to document below some of our own experiences of Beth in the hope it will encourage you all and maybe offer a bit of advice for what it’s worth. 

Seizures/Epilepsy 

Beth took her first seizure when she was 18 months old, we were told it was probably a febrile convulsion but I kept telling the doctors that it lasted a good fifteen to twenty minutes. I knew this because that’s how long it took for the ambulance to arrive. The next time was in the back of my mum and dad’s car- Beth was hospitalised and, again, the seizure lasted around 15 minutes. Every time Beth had a seizure it was always accompanied by a very high temperature, therefore we fully understood why some doctors considered the seizures to be febrile. We were eventually sent for an EEG, both asleep and awake, and various brain scans. The results came back clear; no sign of epilepsy. By this stage Beth was two years old. We were then admitted to hospital as she was having breathing difficulties and she was placed into an isolation unit as her consultant was worried that her immune system had been ‘compromised’ due to an infection. Beth had another seizure whilst in hospital, this time without a temperature, which for all of the doctors dealing with Beth, changed everything. We were then sent to another hospital for tests and, yet again, they came back clear. 

The entire situation was made that little bit worse because we had absolutely no idea why Beth was presenting with any of these issues, as we still had no sign of a diagnosis. Breaking point came when Beth had a seizure that she was unable to come out of – she was put into a coma and placed on a ventilator. She remained in intensive care for a week. The decision was then made to prescribe Beth anti convulsion medication twice daily. We were trained in CPR and how to administer diazepam which we had to carry everywhere with us. This was Beth’s life for about five years. A plan was put in place for nursery and school. I can recall in Sunday school we had a trained nurse who would carry Beth’s mini backpack containing her diazepam. Beth was fit free for three years so we asked could we try weaning her off the medication. I can remember a week after the dose was reduced I was driving in the car, Beth was in the back in her car seat and a bird flew over the sun screen on the roof of the car. Where before Beth would not have reacted, now she pointed and let out a squeal of delight. I knew then we had made the correct decision to persevere with asking the doctors if Beth could be tried off the medicine. 

Beth remained medication and fit free until she turned 15 years old, when she began having minor absences she would try to hide these, and at first I thought it was just my imagination. I soon observed a pattern developing where she would have an absence, her hearing would go badly down and she would then sleep for about three days. We were hospitalised and the familiar round of tests commenced again. Our consultant still remembered our stay in ICU thirteen years earlier and in her lovely gentle, but firm, manner said she wasn’t willing to take the risk. Beth was, once again, placed on medication – this time a different, more modern drug but it wasn’t without its side effects. That, however, did not outweigh the risk of Beth having a seizure like she had in the past. Therefore the decision wasn’t really up for discussion. 

I noticed a dullness in Beth’s responses returning like before, she hated it and I hated seeing her sad. Life continued like this but once again Beth settled. Our neurologist was happy with Beth’s progress so I asked would we be able to reduce the medication. Lots of discussion ensued and Beth’s opinion was sought this time.

That was nearly four years ago and Beth is off all medication and ‘fit free.’

I can feel tears coming as I write this as I am in total awe of Beth and how she has coped and how thankful I am to be where we are at the minute.

So if you are anywhere in our journey and recognise any of what I have written, please follow your instincts as a parent, take heart, ask the questions and keep asking. What I have learned by following stories on Instagram is that many of you received a much earlier diagnosis than we did and, perhaps if we had known of the chromosome 17q earlier, we would have been more aware of what lay ahead for Beth. The flip of that is we may have accepted medication was going to be Beth’s future and we would never have sought constant discussions with Beth’s medical team. I do have to pause and caveat all I have written and say that we did not ignore the advice of the experts we just simply asked them to listen to us as parents. 

Motivating Monday – Everyday Beth continues to breakdown barriers within the workplace, raising the awareness that inclusion matters. By her actions Beth effectively challenges how people view Chromosome disorders.

Telling Tuesday – Beth has Koolen-de Vries syndrome. We only received her diagnosis a year ago when she turned 21 years old. It is a rare genetic condition caused by chromosome 17[17q21.31 microdeletion including the gene KANSL 1. 

Warrior Wednesday – A warrior is someone who is known to be brave, have courage and does not give up easily. This is how our Beth has approached everything in her life and she is ‘Our Hero’.

Thankful Thursday – We have been over the years thankful for many things to do with Beth, her smile her, her unconditional love, her empathy, her kindness, her resilience and of course her constant chatter. Most of all we are truly thankful that Beth is in our lives and that we are always surrounded by her happiness and love. She is the ‘glue that holds our entire family together.’

We are also thankful for the opportunity to meet with many individuals and families that are on the same journey as ourselves and we are thankful for the support that organisations such as Unique have to offer. 

#uniquecharity

#rarechromo

#chromosomedisorder

#thankful

#shinebrighttogether

#chromosomes

#seeingthegood

#awareness

#awarenessraising

#positivty

#smallcharitiesweek

#inclusionintheworkplace

#ourbeth

#kdvs

 

It seems only fitting that I post this piece on Father’s Day about my husband, Beth’s dad.

Where do I begin? I suppose at the moment my husband and I realised that something was ‘wrong’ when Beth was born. I remember he sat holding my hand, just a little too hard, and stroking my head telling me that ‘everything was going to be ok’; when in reality he was trying to reassure himself too.

I have written and talked much about Beth’s sisters and myself but to be honest always, and I mean always, throughout the past 22 years ‘quiet, strong and utterly dependable’ describes how Beth’s dad has been, not just for her but us all.

I recall, a few weeks after Beth was born, we were sent away for a couple of hours to await test results and a meeting with a specialist. My husband took me for a walk where we met, by chance, a group of adults with learning disabilities out for a day trip. I am ashamed to admit now, that I remember turning to my husband and crying that I didn’t want this for our lives, I was frightened. He simply took my shoulders, made me face him and said.. ‘who cares what is different about Beth? She is ours and we love her, we will face all of this together and that is that’. In his no-nonsense, practical and loving way (that sometimes utterly infuriates me!) my husband put everything into perspective.

Beth’s dad has sat by her hospital bed for hours on end and has wept tears of heartbreaking sadness and unending joy. He has cheered her on and run by her side in cross country races and sport days and prayed in earnest when things have been very dark. He has been, and still is, Beth’s most fiercest advocate. He has kept me going when I have hit rock bottom, physically and emotionally, whilst still going to work even when he is exhausted himself. He continually strives to ensure Beth will have nothing to worry about when we, as parents, are no longer here to support her.

He is immensely proud of Beth’s achievements and this is clear for everyone to see, as the love shines out of his eyes as he watches over her.

This quiet (not always!) and at times unassuming man is the rock that is Beth’s dad, and we are eternally blessed that he is a constant in all of our lives.

Over the past 22 years I have, at times, been more than blessed with the people that have entered into our journey with Beth. They have appeared into our lives for many different reasons.

When Beth was born she had the most amazing nurses in the special care baby unit. They showed endless care and patience to Beth and us as a family. They would stand beside my husband and I as we asked a never ending stream of questions. One nurse in particular, not only met Beth’s physical needs but also came alongside me in prayer. Her faith was strong and steadfast and she told me to fix my eyes on Jesus and trust. We also had a physiotherapist who was a powerhouse in her positivity telling me ‘Beth will sit up, Beth will walk’ and she was right! Wow she never allowed any of us to linger in negativity for too long. She was never afraid to reprimand us if we ever tried to do so.

Whilst I will always be indebted to the individuals mentioned above and many like them, our greatest respect and gratitude is reserved for two very special girls….Beth’s sisters. They have poured out their unconditional love and unending support from the minute Beth was born. They have been on either side of Beth all her life. It was never our plan for Rebecca and Lucy to fulfil the role that they do everyday, they were meant to play with their baby sister and embark upon all the things that sisters are meant to do together. Don’t get me wrong they did all of the things sisters do but not in a way any of us ever envisaged. When Beth was in hospital they would sit outside the special care unit and play with their toys, whilst I spent time with Beth. Their dad and I could trust them to behave and do as they were asked, never adding to what was already a stressful time. They never complained that their mum and dad were often absent in the evening for a bedtime story. They also witnessed their mum and dad cry despite our best efforts to hide our emotions. When Beth would have a seizure, which for them at such a young age must have been terrifying, they would sit quietly watching for the ambulance and if it was during the day and I was on my own, they would open the door and let the paramedics in. Their respective ages at the time were 5 years and 3 years. When Beth was put on a life support machine they knew not to ask too many questions but always sensed when their dad or I needed a special hug or kiss. When both sisters were at primary school and their baby sister did not follow in their footsteps they fielded off questions from their peers, as to why Beth wore a different uniform to them. Family outings with friends was always good fun but with an added layer of responsibility for them. It is now a standing joke that the question always asked when playing hide and seek, or exploring in their favourite Crawfordsburn country park. Who has Beth? I was also the mum with the biggest first aid kit! And that’s how it has been for both sisters.

The girls formed their friendship groups based on one thing, that the sisters came as a unit that included Beth. When boyfriends started to appear they had to be prepared to include Beth in many activities and understand, that Beth was and always will be, a pivotal element in their daily lives. When Beth’s eldest sister’s future husband asked her dad if they could get married later this year he told my husband that he understood Beth would be part of his future too.

The two sisters each have their emotional moments too although thankfully not at the same time! They usually sit down beside me and quietly break their hearts because they simply love Beth more than anything and at times fear for her future. They seek out her company and her friendship. They love Beth’s humour and simplicity and in return Beth effortlessly infuses them with a feeling of completeness.

As parents we always emphasised to Beth’s sisters that Beth was our responsibility and that they were always free to chart their own path in life and to follow their own destiny. Yet they both in their very different ways incorporate Beth into their daily lives, because they choose to.

Now I should add here that it isn’t all hearts and hugs, they can argue and fight and lose their patience with Beth, particularly when she is ringing them for the 20th time whilst they are at work, or having a weekend lie in! She bombards them with questions and when these are exhausted she asks the very same questions all over again. When both sisters lived at home my husband and I never needed to ask where they were going at weekends, or what time they would be home at Beth would do that for us! She was stricter than any parent I know.

Through it all her sisters have grown and developed into the most amazing strong independent women their dad and I have the privilege of knowing. They are fiercely protective of Beth and any other vulnerable individuals they meet. They openly and actively challenge all prejudice that they encounter and embrace and advocate inclusion wherever they go. Beth has taught them tolerance and compassion, they hold tight to their faith despite the fact they would admit it has been sorely tested.

Both daughters have at times without being aware of it, saved their dad and I. This is something that as parents you would never think of ever having to admit to, but we have come to learn both individually and together as a family, that this journey we are on is just very much like that.

So girls when you read this… know that your dad and I will always be eternally grateful for all that you do, the seen and most of all the unseen.

The unshakable truth is, and I know we all truly recognise this, that throughout it all we are surrounded by Beth’s love and most of all that amazing smile, what more could we,as a family, ask for.