A bus driver, a life lesson and a random act of kindness

My ten-year-old, Jenson, adores buses.  A day does not go by without his bus obsession cropping up in some form or other.  He will happily watch buses on YouTube for hours on end.  He has bus-themed reward charts at school and home.  His teachers use bus numbers to teach him mathematics, and ‘creative’ bus advertising to help with his reading.

Of a weekend, we can often be found in our local high street, bus spotting, bus riding, hanging out at bus stops and talking to bus drivers.  While his younger brother and dad spend every weekend playing football and riding bikes, he and I spend most weekends on, or around, buses.

Last weekend was no different. 

Jenson and I were hanging at his favourite spot in the high street, deciding whether to keep watching or to take a trip.  A new favourite of Jenson’s, the number 23, pulled up, and the bus driver got off the bus to take a short break. 

He was one of those people who as a parent, you immediately feel comfortable around, he engaged with Jenson and chatted about buses.  He then invited Jenson onto his empty bus to ‘test the bells’ to which Jenson happily obliged, followed by a sit in the driver’s cab.  Jenson was thrilled, as was I. 

The date was Sunday 13th November, and that morning, the local community had organised a Remembrance Sunday parade down the high street, incorporating the two-minute silence.  The driver asked me if we had just been taking part, and I answered no. 

I explained that Jenson finds it difficult to stay silent; he can’t process the instruction, and doesn’t understand the gravity of the occasion.  Therefore I tend to avoid such occasions, for fear of drawing negative attention due to his inappropriate behaviours.

The bus driver then really surprised me, with the incredulous look that came over his face, and his words that followed.

He exclaimed “What!! Why not?!”.  I was taken aback, and attempted to repeat what I had previous said to justify my reasons.  He persisted: “This is crazy!”. I must explain at this point, that despite his terse and direct words, our new friend was clearly a gentle, caring man.  Although he was challenging me, his intentions were clearly borne out of a belief in equality and fairness, as was demonstrated by what next left his mouth. 

“Who cares what the world thinks?  The world needs to learn more about differences.  Who cares if he is not silent, just because they tell you that you should be silent?  The world needs to understand and embrace differences.  The world needs to be more understanding, and they need people like you and Jenson to show them”. 

Feeling a little like I was being told off by the headmaster, I was at a bit of a loss as to what to say next.  I sheepishly concurred that I agreed with him, but that I still have trouble being brave enough to put this into practice, due to many examples of negative attention that we have attracted on past occasions in similar types of situations.  At this point, it would have been easy to reflect and conclude that no-one understands a day in the life of a parent like me, unless you walk in those shoes.  However, there was something about my new bus-mate today, that made me stop and think.

Dissatisfied with my answers, the bus driver continued to give me a stern talking to; encouraging me to never mind about other people.

His tone was kind, but firm, with sentiment and compassion. After about five minutes, his break was over, and the next thing I knew he was ushering us onto the bus to sit down at the seats nearest the front.  He started the engine, shouted “Let’s go for a ride”, and we were off!  Before I had a chance to resist, we were taking a 20 minute round trip to the terminus and back.

Unfamiliar with such random acts of kindness, I was taken aback but I soon relaxed into our impromptu journey, with the driver chatting away, and Jenson chatting back, much to the amusement of the other passengers. I took a moment to savour the pleasure and excitement that Jenson was experiencing, and I found myself speaking more loudly and excitedly to Jenson, as we chatted about landmarks that we were passing.  I was deliberately heeding the bus driver’s advice about throwing abandon to other people’s perceptions.

Rather than hush him, and keep my voice low, I did the opposite, and it felt great!  

I noticed that Jenson was responding to my more relaxed demeanour, and my ease was having a very positive effect on his own behaviour.

On our return to the high street, we had another lovely chat and I learned our new friend’s name, and he told me a little bit about his family. 

We have since met up a few times with Laslo, and taken a trip on the number 23.  Jenson is happy that he has a new friend and I am happy to have experienced a random act of kindness that has definitely lead to a positive change in my own behaviour and outlook.

In Laslo’s words, “The world needs to be more understanding” and “Who cares what the world thinks?”  I am now trying to adopt this mantra every day, thank you Laslo!


When people say “I don’t know how you do it”

It’s a phrase that parents of disabled children hear frequently, along with “I think you’re amazing”, “What a wonderful family you are”, and words to that effect.

Despite being a regular recipient of such compliments, I still find I am at a loss to know how to react or what to say back.

I politely respond, “Thank you, but no I’m really not!”, when really I want to say “You’d do exactly the same if you were me”.  I find myself wanting to grill them on what they think I am doing that warrants such kudos. 

Fundamentally, what am I doing that is so amazing, other than bringing up a child that I love? I am doing everything in my ability to ensure he is safe, well, and cared for, which is the same as what every other parent I know is doing too, right?

I guess the difference is that I am having to put a whole heap of extra work into this journey, and the path is fraught with obstacles

Perhaps they see the exhaustion on my face, or witness me repeatedly declining invitations to social occasions.  It is nice to hear compliments from people that recognise and observe the struggles that I go through, but it frustrates and saddens me that maybe they are drawn to the obstacles I face and not the joy of the journey. 

And so here I am asking myself why I find it so difficult and awkward to be complimented on my parenting. I think this is partly down to the unrelenting, perpetual guilt that I experience, that makes me feel undeserving of any parenting plaudits. 

For me, the focus remains on all the things that I haven’t done as a primary carer; all the things that I should be doing more of; all the things that I feel I have failed at.  

It’s the time I spend alone with my other child because he needs me to show him I have the same amount of love for him too.  It’s the therapies or extra care that he misses out on because I’ve run out of time or energy.  It’s leaving him on his iPad for longer than I should so that I can get tasks and chores done.

It’s a daily battle with feelings of ‘I-could-do-better-for-him’, and ‘what-if-I’d-done-this-differently’. 

When someone praises me on how magnificent I am for what I am doing for my son, this also seems to unhelpfully focus my mind on the differences he has and the reality of the situation. It serves as a reminder that I have a seriously different life to other people, and it reminds me of the gravity of my situation and the severity of my child’s condition. 

I previously felt purposeful in my professional life, but I relinquished my career not long after my son was born.  I now need to feel I make a difference and serve a purpose elsewhere, and so by focusing on making a change and having a positive impact gives me this life narrative. 

For me, I have ended up in the spotlight, advocating for families like mine, representing parents who cannot represent themselves, and crafting new services to counter the existing under-provision.  This is not for everyone, and I do not seek praise for this; it is a personal and somewhat selfish act that helps me unravel my own demons. 

I am truly grateful for the accolades that are bestowed upon me, but please know, I am just another parent doing another difficult job, and yes, you would do exactly the same, and like me, you would do it through unconditional devotion and love.

My Water Baby: The Therapeutic Power of Blue Space

The beach has been my backyard for the past 20 years, but it was only when my son was born nine years ago that I really started to make an ally of the ocean. 

Having had many sorrowful experiences at soft play sessions, baby groups, and library sing-songs, I soon realised that our true sanctuary was the beach. 

My baby, still undiagnosed, was struggling to find his way in the world, inexplicably not conforming to societal expectations. 

But through his blue space, he found his safe-haven, unchallenged by cultural expectation.

In his primal state of infantile exploration, the beach became his chosen playground. 

Unwatched by his peers, who had achieved it far, far sooner, he first learned to roll back-to-front and back again, when lying on the soft forgiving sand, encouraged by the natural cambers that had formed the night before. 

His first experience of independent mobilisation was similarly exhilarating, a few months later, down the very same cambers, on his bottom. 

He would sit on the water’s edge for hours, the tide tickling his toes and the salty spray decorating his face, such effort taken in propelling himself just a few taxing feet forward and backwards, left and right, rogue waves catching him out and knocking his tiny and unsupported body to the floor as he giggled and gurgled in the water.

He would sleep his best sleeps on those nights, sapped and satiated by his time in the blue. 

I loved the lingering taste of sea salt on his nose as I kissed him good night.

I would really enjoy those times alone with him, escaping the pressures of new-motherhood by avoiding the inevitable conversations with fellow mums about milestones and progress and the looks, sighs, words of wisdom and sympathy. 

I welcomed its predictability, its consistent terrain, total neutrality, lack of territory or ownership. 

Every visitor comes with no greater or less entitlement to its offerings, just to borrow a bit of beach for as long as they choose, no booking system or timeframes to conform to, and no unexpected factors to scupper plans.

In pastimes I had been a nervous visitor of the ocean, feeling like an imposter in a foreign and hostile body of water, anxious of its unpredictable movements and volatile behaviour.    

But while my son’s affinity with his blue space was showing no signs of abating, my own trepidation of the sea was swiftly diminishing, through the sheer non-negotiable responsibility placed upon me to facilitate his only true love and connection with nature.  

As a family we were happiest on the beach; the non-judgemental landscape was such a reprieve from the everyday challenges we encountered in our urban world.  

His love of the waves was indiscriminate and in fact it was the days where the sea was at its iciest, stormiest or angriest, that he would shriek with joy the loudest.  

With my firm and protective hands round his waist, he would swim and splash, kicking against me to push farther out towards the blue horizon. 

I am unsure at what point I realised that he was swimming on his own, but it was certainly a long, long time before he could walk. 

His self-taught writhing, flapping and ungainly movements were somehow propelling him through the water, and alarmingly most of the time in an underwater motion.

It was a challenge to remove him from the sea, as he would happily stay for hours, but the blue of his lips and the wrinkles in his digits indicated he needed reacclimatising. 

We would wrap him in his robe and he would shuffle to his same favourite spot and lie on the warm sand, slowly returning his body temperature to its regular state.

At times we were guilty of overstaying our time in the water; the intensity of his enjoyment obscuring the signs of hypothermia, and his inability to self-regulate, identify and respond to, his own needs caught us out now and then.

My boy is now nine and this Spring will see our tenth year of enjoying family time on the beach. 

Now a fully mobile, sociable and inquisitive child, he knows no social barriers, usually befriending a dozen families and as many dogs with his charming and convivial personality on any given day. 

His inability to grasp the concept of personal space and belongings has left us having to explain and apologise to strangers on numerous occasions about their punctured beach ball or flattened sandcastle structure. 

But mainly we find that people are beguiled and captivated by his gregariousness and loving manner and will happily share their borrowed bit of beach with him, and surrender their buckets and spades.

So, I look forward to another season of sea, sand and sanctuary, in the one collective place that we can spend time as a family, unjudged, safe and content, with each of us in our true happy Blue Space.

Dear Carer, Dear Friend

They told me I qualified for help from social care.  ‘Respite’, they called it.  They put some money in an account for me, and told me to find ‘staff’.

I didn’t want staff.  I didn’t want strangers in my home.  I wanted to fix my child, but no one was helping me with that.  I was lost, I was desperate.

You came into our house, and into our lives that day, and you’ve never left.

You didn’t notice when the house was a mess.  You didn’t care when I was still in pyjamas.  You talked and you listened, you watched and you learned.  You took instructions sometimes before they even left my mouth.  You absorbed like a sponge. 

Nothing is weird or unusual to you, you don’t flinch when dinner lands on your lap, toys are thrown at you, and your hair is pulled out.  When he’s at his worst you still seem to find his best.  You are so patient and gentle yet so firm and focussed.  You are calm, organised, and proactive; everything I want to be.

You bring experience but also open-mindedness.  You take direction but also direct me.

You ask about ME.  You care and you listen. You make me tea and you make me sit down and drink it.  You are sensitive and sympathetic but not patronising or judgemental.

We have good days and we have bad days.  We learn together.  We reflect on days gone by and feel collectively proud of what’s been accomplished.  You have seen me at my worst, and at my slightly-better-than-worst. You bring out my best.  You show me it’s ok to be me, and reassure me I am doing an ok job. 

Over time you’ve shared your own stories, and over time we have become friends.  You’ve confided in me, you’ve celebrated and cried with me.  I’ve watched your career and your home life change and evolve.  When life has been cruel and you’ve been at your lowest, you somehow find strength in him and it diverts your pain.

When he’s been through lows and times of real difficulty, you’ve pulled us all together. 

I’ve been a shattered mess and you’ve been the tower of strength.  I have watched you enjoy him and in doing so I have remembered how to enjoy him too. 

You’ve made him so funny! He tells me the jokes he has learned and repeats the naughty words and silly actions.  You’ve got your own private jokes and phrases and he loves that you have secrets.

You’ve been brave! When I was so scared to leave the house, you showed me resilience. 

You didn’t falter at the looks and glares, you didn’t fret over the possible obstacles.  Your primary aim has always been to give him every ounce of what he wants and what he needs, with a brilliant ‘screw-the-rest-of-the-world’ attitude.  You’ve taught me how to grow a thicker skin.

They said, don’t employ friends.  They said, you’re their manager, not their mate. 

They told me to give clear instructions and maintain boundaries. Draw up contracts.  I still forget you’re here to be paid; you make me feel you’re here out of choice and not for an income. 

Your name is hollered on repeat when you’re due to arrive, and he watches and waits with excitement. 

The house feels lonely when you leave and you often leave late because you’re so engrossed in each other.

You’ve been his therapist, his taxi, his teacher, and his advocate.  And you’ve been his best friend.

My child is a better person for knowing you. 

If I could turn back time. What would I tell myself?

If I could time-travel, I would go back to the day you were born. And the days, weeks, and months that followed and tell myself the following five things.

“You were expecting a ‘normal’ child.  Your world has shattered into a million pieces.  You have lost something you never had. But that you were preparing for the past nine months.  You think your life as you know it is over, but I am here to tell you it has only just begun. 

Listen very carefully to these five very important things.

Number One.  You will love this child.  This is a love that has no bounds.  A love that can and will move mountains; will stop you in your tracks; make you breathless; make you stronger, prouder, and braver than you can ever imagine.  This is a love that is borne out of who your child is, not in spite of.  It is a primal, elemental love that cannot be rivalled.

Number Two.  The future is your enemy, and the present is your friend.  Do not think about all the things that might be difficult in the future. All the battles, all the differences and all the challenges.  No one, especially not the professionals, knows what the future holds.  No benefit can be gained from suffering over the what-ifs. In fact, the what-ifs are usually much worse in theory than in reality. 

Number Three.  Other people are ignorant, thoughtless, and thoroughly tactless.  They are also well-meaning, kind, compassionate and unknowingly prejudiced.  They mean no harm; want to alleviate your pain, give you optimism, and contribute to lessening the burden they see you carrying.  Their input will usually involve personal accounts of their cousin/neighbour/best friend’s brother, which they will naively assume help your cause.  They won’t, but you won’t tell them that. Rather, you’ll smile sweetly and change the subject. 

Managing your expectations

Which leads me to Number Four.  For every friend you lose (and there will be scores), there will be a new friend who will change your world.  Some may be travelling a similar path; some may cross your path for other reasons.  You will encounter a whole new team of superheroes. Your child’s advocates – teachers, therapists, care workers.  You will entrust these amazing individuals with your child’s life, and you will cry and celebrate with them.  They will show you a whole new species of supreme humanity.

Number Five.  You will overhaul your expectations of life and parenthood.   You will recode the hard wiring of what you have come to know as happiness, pain and love.  The joys, woes, challenges, celebrations, will be the same as parenting a regular child.  But with greater extremities either way.  And please believe me when I tell you that the intensity and elation of the up-sides will eclipse the downsides.  In this you are truly lucky.  In a life where nothing is assumed or taken for granted, you will treasure and savour Every. Single. Moment.

So please don’t be sad.  Don’t miss out on the first few precious days, weeks, and months, because of misplaced sadness and grief.  Avert those feelings of loss and exchange them for eager anticipation of what is to come.  Know that you will be a good parent, a great parent.  And be kind to your partner.  He or she is travelling their own same but different path, and you are a team.  The BEST team.  And you are the luckiest parents in the world.”

What is Early Intervention and why is it so important?

Early intervention is the identification and provision of effective early support to children and young people who are at risk of poor outcomes. It incorporates social, educational, physical and mental health needs.

Preparing for the journey

There is so much that can be said about the world of early intervention. But the first thing I want to say is that it should come with a warning.  It is often so painfully difficult to get a need for intervention recognised and resourced.   You need to be resilient when battling for your child.  You may need to find courage to be outspoken, and conviction to articulate.  You’ll need to struggle through the times of despair and anguish, and muster energy and strength to persevere.  Self-doubt may even start to kick in when, after being challenged and refuted numerous times. You question whether your fight is legitimate and justified.

Being resilient

The most gruelling of fights for our family was our battle to secure interventional feeding therapy for my child. Who has oral-motor disorder and acute sensory processing difficulties, which lead to a condition called ‘avoidant and restrictive food intake disorder’. The feeling of being continually ignored and placated was utterly shattering. We endured a long battle to secure his early-years place at his specialist school. A school which provides in-house therapists and specialist interventions, which was so imperative to his development. We have undergone ongoing battles with the social care system to acquire respite care. So that he, his young brother, myself and my husband, can have an element of respite and practical help at home. 

In each situation it has felt like we have needed to demonstrate critical, dire circumstances, before our needs have been taken seriously.

Why early intervention is so important

The importance of early intervention should not be under-estimated. But sadly it is often the case that a child or young person fails to receive the interventional measures that they require.  These failings can often be attributed to funding, lack of diagnosis or recognition of need, resource issues, and untimely interventions.

The key part of the phrase is the word ‘early’.  Put simply, the earlier that a need is identified, and the sooner that an interventional measure is put in place. The greater the likelihood of a positive outcome. 

In a child’s formative years, the brain’s neural connections are being activated at an exponential rate. As a result of everything they are living; mentally, visually, physically, experientially.  Their experiences are having a direct impact on their rapidly developing brain architecture.  Thus, early interventional measures for a young person can inform and influence the future hardwiring of a child’s inner computer.  For an infant whose development is a cause for concern, early intervention can have a colossal impact on their physical health and cognitive progression. 

Similarly, during the teenage years, a person’s brain is learning to shift the emotional learning from the primitive system, towards the sophisticated frontal lobes. This evolutionary process is moulded by all the raw external influences it experiences.  Therefore, in the case of a mental health or social-emotional issue in older children and adolescents, interventional measures being implemented on a timely basis can have a profound effect on their trajectory into adulthood. 

Recognition and acknowledgement phase

The very first stage for each and every family is the recognition and acknowledgement phase.  Differences, disorders, and difficulties come in all shapes and sizes. And a parent must first identify, recognise, and act upon, their child’s presentation. Which can be a difficult and distressing process.  This can often lead to stages of denial, depression or anger, before our practical minds take over and we are ready to ask for help.  The critical path to early intervention can often be obstructed by the lack of a diagnosis and this obstacle can cause its own arduous difficulties.

Once ready to act, and furnished with evidence and fuelled by the desire to help our children, we move on to the stage of researching the best course of action. In some cases, this can be straight-forward, such as a physiotherapy for a physiological condition. But in other cases of mental health disorder, behavioural or communication problems, the interventional options are not so clear.  This stage can be the toughest time for any parent, as our child’s condition often deteriorates or becomes more omni-present, while the ongoing efforts to source help to ‘fix’ it seems to be futile.

All too often we must fight to be heard.  Whether it is to obtain a diagnosis in order to be included in a care pathway, or to be accepted for an intervention that has a long waiting list, or that has strict acceptance criteria. The most upsetting scenarios is where a child is not considered to be ‘serious enough’ to be accepted for treatment or intervention. In this country it is a sad fact that for specialist or costly interventions you often need to be ‘in crisis’ or ‘critical’ to be given any resource from the system.

My advice to parents and carers who are seeking early intervention:

  • Gather evidence: Keep diaries, records, and photographic/video evidence.  Insist on written clinic letters following each appointment, and statements from educational settings.  Make notes of all phone conversations and appointments, and keep a timeline of everything.
  • Know your statutory rights. Find out national and local timeframes such as Referral to Treatment (RTT), maximum waiting times, and any requirements for meeting treatment criteria.  Acquaint yourself with your rights in the healthcare, social care and educational systems. This can be asking for referrals, second opinions, specialist consultations.
  • Ask for help: Take a friend or family member to appointments.  Tap into charities that have an abundance of material and resource to help you. And who may even be able to represent you at meetings. Persevere where progress is slow, even if that means calling and emailing frequently. Do not be afraid of being a nuisance!
  • Fortify yourself with as much emotional strength and support as you can. Surround yourself with positive people that love, support, and understand you and your child. Do not be afraid to ask for help.  Be prepared for a battle but be assured that it will be worth it once you come out the other side.

Climbing the Metaphorical Mountain

“It’s not the mountain we conquer, but ourselves.” Edmund Hillary

Perhaps you knew the moment your baby was born.  Or perhaps a doctor sat you down one day and gave you The News.  In that very moment your destiny, and destination, changes forever.

In the beginning it is a very emotional affair.  One emotion that almost all parents will feel is DESPAIR.

Where on Earth do I go from here? How on Earth will life go on?

Your search box is filled with text that you didn’t know existed last week.  Words with far too many letters; words you can’t even pronounce.

All you can see is a mountain in front of you, so high that you can’t see the top.  So steep that you only see a wall.  The ground is rugged, uninhabited, sharp and dangerous. No human would choose to climb this mountain.

But slowly, after what could be days or months, the realisation comes over you that you have no choice.  In order to proceed with life, and for the sake of your family, you must climb this mountain.  You’ve got to climb it with no ropes or devices, no user manual, no training.

You hear distant voices coming from the top of the mountain.  People encouraging you, cheering you on, urging you forward.  They are sending you well wishes and virtual postcards from the summit.

You google ‘top of the mountain‘ but the results are too scary and daunting for you to deal with right now.

You see some distant figures making the climb above you.  You catch sight of some who are clambering effortlessly, while others seem to be slipping down the shingle and making little progress. But all of them are beckoning eagerly, telling you to keep on climbing.

The people at the top are hollering to you that it’s great up here.  They are telling you to keep your spirits up and stay positive.  You find it really difficult to believe them.

You challenge them with questions that you aren’t sure you want to hear the answers to.  You desperately want to hear the success stories, the heart-warming tales.  You aren’t ready to listen to tales of those who fell off the mountain.

You want to hear that each and every warrior making that journey reached the top and lived happily ever after.

Finally, finally, after what seems like five hundred years condensed into five minutes, you reach the mountain’s peak.

Words cannot express the euphoria you feel.  You have finally reached a place of acceptance, a feeling of peace and serenity.  You feel like you are home.

Not only does it feel like home, but you cannot even remember your former home.  It’s like you chose this place; this place chose you; and now you would not choose to live elsewhere, even if the choice was presented to you.

Some days the view is amazing.  You still find yourself gasping at the breath-taking little things that you could never really see from back down on the ground.   Some days, there is a rainbow so stunning it catches your breath.

Other days you are exposed to the harsh climate of the mountain top; the relentless rain and the blistering sun. The harsh and cruel storms and destruction that no person should normally be exposed to.

But as those storms pass, you once again see the sparkle of the paradise in which you reside.

You glance down at the rest of the world going about their lives on the ground, most of whom are unaware of the realities of life up here on the mountain top.

You send regular updates to friends and family, and sometimes they even come to visit.  But they don’t get to see and truly understand the miracle of this place like you do.  They don’t comprehend when you try to explain, the magnitude of the mountain and of the journey you undertook to get here.

Only those who stand alongside you here on this summit will ever truly know how you are feeling, what you have experienced, how you feel fear and how you rejoice in life.

From time to time, you hear a distant voice calling you from down on the ground.  You look down and see yourself, a few months or years ago. That person, and the family stood there around them: that was you.

You shout down the same words of encouragement that were once shouted down to you. The family send you the very same questions that you once sent.

And of course, you answer them with the same patience, understanding and empathy as yours had once been answered.

A little while later, that family comes to join you.  And life goes on.

We know what it’s like

We know what it’s like. If anyone can do it, we can.

While the rest of the world shouts and panics about this new regime they are being forced to comply with, for most of us it is not new territory.

Unlike the majority, we have endured many similar situations throughout our children’s lives and can draw our strength for the next few months ahead.

We already know what it’s like to be banished to our homes because our children would not cope with what the world might throw at them.

We know what it’s like to have to be inventive, creative, resourceful and industrious.

We know what it’s like to watch the world through Facebook / Instagram and feel like The Outsiders.

We know what it’s like to totally re-evaluate friendships and relationships, when life throws a huge curve ball at you.

We know what it’s like to run around at midnight on an emergency hunt for medicines.

We know what it’s like for our children to be absent from school for weeks.

We know what it’s like for our children to ask questions to which we don’t have the answers.

We know what it’s like to have to lie and say ‘I’m ok’ when we are a long way from being ok.

We know what it’s like to feel incredibly vulnerable and susceptible, and to have the overwhelming urge to cocoon our children in a watertight environment.

We know what it’s like to have the opportunity to totally rethink our priorities in life.

We know what it’s like to need to make huge sacrifices and difficult decisions.

We know what it’s like to really appreciate our true friends, let go of the others, and show gratitude for the little things that mean so much.

We know what it’s like to have to deny our kids the world outside our own front door, because we know it’s for the best.

We know what it’s like to miss out on a whole summer of fun because of our child’s health issues.

We know what it’s like to have to distance ourselves from social situations.

We know what it’s like to have to isolate our family to keep them safe and healthy.

We know what it’s like to really learn the value in things when they are taken away from you.

We know what it’s like to stand alone for weeks, months, but still feel an overwhelming sense of togetherness.

We know we have come out the other side before, and we will do it again.

Pride of Dorset

Last night many a tear was shed as we sat avidly in front of our TVs and watched the screening of the Pride of Britain Awards 2018.

A few months ago, myself and some friends of mine, all parents of disabled children, came together in force to nominate our own true hero, for the category of Fundraiser of the Year.

Below you can read my nomination to ITV that contributed towards this fine lady being shortlisted for this prestigious award.

We are all incredibly proud to be able to call you a friend; well done Patsy, you are a true winner in our eyes.

*             *             *            *             *             *             *             *             *             *

Let me tell you a short story.  There were two ladies sat in the fundraising office of The Dorset Children’s Foundation, when the phone rang.

The first lady picked up the phone, to hear the fantastic news that a local company would be donating a large sum of money to fund the purchase of a wheelchair for a local disabled boy.

She came off the phone, and with tears in her eyes she relayed the news to her friend.

The friend, being equally as thrilled, asked “well, aren’t you going to call the family to tell them the good news?”  to which the first lady replied, “no, you can do it”.

You see, this lady that I speak of, she seeks no thrills or glory.  Her motivation for fundraising for sick and disabled children comes from her soul, and is driven by nothing other than love and kindness.

She is no glory-hunter; in fact, she shies away from any public recognition, any reward or praise.

She has a very special heart.  Her name is Patsy.

Patsy is known by, and loved by, just about anyone who is a parent or carer of a disabled or sick child in Dorset.  This lady is the very definition of what makes an exceptional fundraiser.

Patsy has a huge heart, deep pockets, open arms and a selfless soul.

When it comes to her passion, grit, selflessness and determination, she would challenge the likes of Gandhi and Mother Theresa.

You could offer Patsy all the riches in the world but she would turn them down just to grant a child their dream, or take away their pain.

Patsy set up The Dorset Children’s Foundation along with her partner Scott in 2013.

She gave up a good job, and later even gave up her home, to make real her dream of changing the lives of sick and disabled children.

Coming from a place of disillusionment having previously worked for another charity, and seeing the wastage, overheads and administrative barriers, she was determined to eliminate the bureaucracy.

Her mission was to cut out the layers, and ensure that every donated penny ends up going towards the goal.

It started with one charity shop, which turned to three.

Five years later, the charity has raised over £500,000 and supported 75 children.

Patsy’s original mission still holds true: all overheads are more than covered by the three shops’ takings, meaning that every penny donated is directly funding a local child in need.

The success and fulfilment of her original mission is largely due to the enormous sacrifices that Patsy makes daily.

She works tirelessly for the charity, but remunerates herself modestly and minimally.

It would be safe to say that she works at least 80 hours per week but the truth would be that she is never not working.

Even when at home of an evening, she will be in constant contact with her families – checking in on them, answering their messages and resolving issues.

She attends a ridiculous amount of corporate and business events in the perpetual pursuance of generating partnership working, raising the charity’s profile, and driving forward revenue.

She has been remarkably successful at this, and thanks to her perseverance and graft, last year The DCF was chosen as the official charity partner for premiership football club AFC Bournemouth’s Junior Cherries.

Along with this, Patsy has amassed many prestigious large and small local businesses to support the charity.

Her likability speaks for itself in the astounding engagement she has engendered with local suppliers and tradesmen to procure complimentary services such as printing and catering.

Yet no sooner has Patsy secured her last donation or offering, she is accelerating towards the next.  She is constantly horizon-scanning for the next opportunity to raise money for her families.

But the success and impact of Patsy and The DCF is not just about the money that has been raised, or the life-changing equipment and therapy that has been delivered to the children.

It’s about the sanctuary she provides to her families, the feeling of belonging, believing, deserving.

Patsy recognises the bigger picture: A sick or disabled child doesn’t stop at that child.

There are mums and dads who are in a place of isolation, desperation and sadness.  There are sisters and brothers that are scared, overshadowed, lonely and confused.

Patsy provides a haven to the whole family, when they most need it. She has created a unique family unit based on warmth and togetherness.

Where parents sometimes feel defeated and lost, she advocates and fights.

Patsy is a quintessential mother bear.  She nurtures and protects, she radiates love and is ferocious and fierce in defence of her young.

Often the drive to set up a charity and make a difference comes from a personal experience, but in Patsy’s case she doesn’t have a disabled child, yet she found the passion and drive from somewhere deeply selfless to make her dream a reality.

Patsy now has dozens of her own children who she loves dearly.

Each of them, and their mums, dads, sisters and brothers, all love her back, and thank her infinitely for the life-changing differences she has made to each and every one of them.

Patsy may have sacrificed her home, lifestyle and job, to make The Dorset Children’s Foundation the success that it is, but she is richer now than she ever has been.

Because to Patsy, the true measure of wealth is the satisfaction you hold in your heart.  And Patsy’s heart is full to the brim.