This week is exactly two years on from that first experience of the crushing pain you feel in hospital when you get news you don’t want to hear. A lot of water has passed under the bridge since we were sat staring at the walls of the children’s ward, dazed and confused for the best part of 3 weeks and I have learnt a lot about myself in that time and a little bit about being a “special needs” parent and the stuff that crops up.
- Diagnosis day hurts! – More than firm kick square in the bollocks! Nothing quite prepares you for shit like that and the sheer scale of that moment. Those two days (the initial West Syndrome diagnosis and subsequent IDIC15 a few months later) will forever be etched in my mind, the waiting, the room, the pain and the sense of bewilderment and a million questions that follow. That initial pain does subside and a sense of “normality” does follow, it has to for the sake of your family.
- Don’t be afraid to ask! – I would rather someone be educated and aware of chromosome disorders and related topics such as autism than stand there and judge, assume or ignore what is going on around them.
- Don’t be embarrassed! – If you do ask and I explain, don’t be embarrassed when I answer, there is nothing to be embarrassed about! Yes, Matthew has a rare chromosome disorder, he is non-verbal, he has habits and quirks that some may find strange, but heck haven’t we all?! I have seen a grown man attempt to slyly pick his nose and eat it in a business meeting, now that is strange! That is the way he is and we love him, we are not ashamed or embarrassed and no he is not a burden, with the journey that little superstar has been on we are mega proud of him.
- It is OK not to understand! Before we were parents to Matthew and thrown head first into the world of special needs parenting, I didn’t understand either and we won’t judge you if you don’t. Autism was a mystery as I have said in other blog posts, we had never enountered it and I accept you may not have either, so back to points 2 & 3.
- Pity at your peril! – This is as bad as a judgemental sneer, we do not ask crave nor want pity from anyone, it is patronising, offensive and quite frankly it sucks.
- That judgemental sneer? Don’t even think about it!
- Yes Matthew shows autistic traits. No he is not like Rainman – he is Matthew, nor have we found his “special talent” (Refer again to points 2 ,3 & 4).
- Parenting advice on Matthew? Give at will, we will probably smile politely and file in a mental bin with the statements from point 7.
- Our social life is dysfunctional! Yes we would love to go out for dinner, join friends for drinks and all that jazz but sometimes it is not that simple! Keep us on the invite list though, you never know, we may be able to make it! If all else fails then maybe pop in and do the social thing with us – the door is always open (well actually it’s not, as Matthew would be off down the street, but you catch my drift).
- You think your house is toddler proof? Matthew and your house contents will be fine if we visit!? You reckon? Five quid says he proves you wrong in the first 10 minutes! Back to point 9, sometimes it is just easier to come to us.
- Matthew’s hospital file! This thing is big, like really big, weighs a ton and probably requires a risk assessment for lifting and carrying to be carried out everytime it is brought out of storage.
- Never, ever run out of tomato ketchup!
- Or pitta bread, pizza, leftover and frozen lasagne/pasta, petit filou or fruit pouches!
- Doors, wheels, musical toys and water! A godsend (except the doors which are hazard) in their own right, each have a magnetic attraction and keep him happy for hours.
- That kid knows no danger! This is not just normal toddler danger, I have seen toddlers do their thing before, we have raised two and been scared to death at times, but this kid knows no bounds. (Oh, and since starting writing this blog post the little monster has discovered how to escape from his cot!)
- He never stops moving! A bit like point 15 in that this is not like typical toddler energy, when he is awake he is moving, exploring and trashing one or more rooms in the house.
- Hand dryers are the work of the devil! Seriously, although they hardly create the heat of Lucifer’s lair, the noise and roar is obviously like depths of hell! The mere sight of one will lead to thumbs thrust immovably into ears and one overloaded kid.
- Meltdown imminent? Give him some space. It is not that he dislikes you, nor is he being rude or naughty, he is overloaded with sensory stimulus and needs his safe place.
- Special siblings just get it! Our daughters – They have a mutual bond, devotion and trust with him that cannot be broken, they see him just as their little brother, Matthew, nothing more and nothing less, the support they offer is amazing, these kids seriously rock!
- Little things matter! A smile, eye contact, a cuddle, a milestone met or inched towards, a new action, noise or non-verbal communication are all massive and greeted with excitement.
- Other special needs parents are amazing! Amazing, inspirational, welcoming strangers who have become friends.
- Finally – If you get attention cherish it. Now it’s not that Matthew isn’t affectionate, he is, very much so. He is just selective over who to, where and when, so don’t be offended if he avoids you like I would a plate of quiche! If you do get those special moments, embrace them, trust me, it’s worth it.
Well no, it wasn’t, but it is, and you will deal with it! That is what I would tell myself of two years ago if I could go back in time.
Almost two years ago today I remember I took to Google, (I seemed to spend a lot of time on there back then) worried about Matthew’s ever more evident developmental delay, confused, scared and seeking some form of validation of my fears and answers to questions which in reality I didn’t want to ask.
Is my child a…<delete>
Does my child have au <delete>
Is my child aut…<delete>
I knew what I wanted to ask, so did the Google auto predictor and it was staring me in the face in the search bar “IS MY CHILD AUTISTIC?” But I was too scared, too much in denial, too fearful of the answers to press enter, but eventually I did.
“Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people” As explained by the National Autistic Society on their website.
Three words stuck out. Autism! Lifelong! Disability!
I remember my heart sank, the description told me enough and I think fear of the unkown led me to close the page until my curiosity took over again a day or so later.
At the time I didn’t know much about autism, I had a clouded view of it that lay somewhere between those now frustratingly common misconceptions of “Oh, like Rain Man” to a peculiar image of a child without emotion or a smile that hides away in the corner of a room, though reading about it didn’t clarify much either, it just made me hurt.
I referred in my original article (A Dad’s view of 15q) about shattered dreams, although at seven months old Matthew would probaby have been way too young to diagnose with autism, reading about it and the difficulties the condition can create made my heart sink, I crumbled and I convinced myself that Matthew would never develop beyond a baby without a smile and we would never have that father son bond.
“It wasn’t supposed to be like this….” was what I told myself, no it wasn’t, but little did I know then that I would deal with it.
Back then, maybe it was the fear of the unknown, maybe some sort of prejudice, shame, ignorance, a combination of the above I am not sure, but I know I was terrified, just at that word, autism, though the autism was ultimately put the back of my mind for a while when Matthew was diagnosed with epilepsy and then IDIC15 in the months that followed.
I still had no idea if Matthew had autism, although I had convinced myself that was the case and all I could imagine was that my little boy who from the day we were blessed with him I had envisaged being full of life, smiles, curiosity and energy would be taken from me by this condition, well that shows how little I actually knew about it for a start.
So, fast forward two years, and yes, Matthew is on the spectrum as confirmed by our child development specialist just this week, quite where we do not know as yet but I guess time will tell on that. Normally this would be a diagnosis that would reduce a parent to tears, but given the challenges of the past two years it didn’t.
I had already accepted the likelihood sometime ago and the diagnosis merely confirmed what we already knew, and one that would give more concrete direction to his ongoing support.
Does it scare me now? Not in the way it did, though the future is unknown and does make me wonder. Does it change anything? Well, I have changed in the two years, but does it change anything with Matthew? No! He is my little boy, the same little boy who I held with pride on the day he was born, a little boy who I am immensely proud of today.
Is he bereft of emotion, life, smiles, energy and curiosity? Definitely not, I guess if you are reading this and know autism from your own child then my ignorance and naivity of two years ago would have made you laugh, or raise a cursory eyebrow! A kid with autism without energy, character or life!? Not a jot, this kid has it in abundance!
He smiles, he laughs, he makes us smile, he makes us laugh – lots! He just does all those things in a way we never expected.
He may not establish constant eye contact but he is loving, affectionate and curious, the eye contact he does achieve with us is so warm, genuine and melts me inside, he is everything that I imagined he would not be, he may not talk but he can communicate in a way that is so special.
We have just needed to adjust ourselves in order to accommodate him and understand him and by hell is he worth it.
I have no idea if I am stronger than I was two years ago, I suppose in a way I must be, there has been a lot of water under the bridge that we have dealt with and tackled head on.
Today, being able to tell someone Matthew has autism is likely to get a far more sensible and coherent response than what we currently get when we say he has a rare chromosome disorder. Though no doubt I will no doubt be asked “So what is his special talent?”
So to the challenges ahead, Matthew is but a dot at the moment, a toddler that has absolutely no sense of danger and a zest for life that drains energy from us both every day, but every morning that energy returns to us for another day of bringing up three kids, each one special, each one perfect.
In a few years time? I expect the challenges will grow as he does, I hope and pray each day that he spared the seizures so common with IDIC15 and the future is unknown and scary, but I will tell myself now, so I don’t need to later, “It wasn’t supposed to be like this, but you will deal with it!”
Love. You. Daddy. Three small words that are taken for granted by most fathers across the world, indeed they were three words that combined I too took for granted with my daughters as they grew up through their toddler years, though now they are more likely to say, “You’re embarrassing Daddy!” Though I will forgive them for that as when they are teenagers I will do my best to be super cringeworthy!
These three small words that I took for granted are now a monumental milestone that I maintain hope I will one day hear, yet with a brutal irony accept that in all reality I may never get to.
Each morning, sometimes far too early for me, the sounds of Matthew stirring in his cot transmits through the baby monitor.
Sometimes, a deliriously happy little Matthew who is smiling ear to ear and can’t wait to be picked up from his cot, others a seriously angry little chap, annoyed and affronted that something should have stirred him from is slumber. Sometimes he stands in silence, reaching out to open his bedroom door from the cot and flicking his bedroom light on and up and down with the dimmer switch.
Each morning he is freed from his cot and his cosy sleeping bag, each morning he gladly accepts our arms and wraps his arms lovingly around either my or Debbie’s neck as he is greeted with hugs, kisses and a greeting of, “good morning”, each morning that hope remains eternal he will reply with “love you Daddy”.
Instead we are met with silence, the smell of dummy spit and are covered with dribble, but a cuddle that warms the heart and makes it all better before he wants to get down, charge around every room, banging doors and pulling their handles, opening toilets and exploring the upstairs of the house with an enthusiasm like it is an undiscovered corner of the Amazon, all the while silent except for the occasional shriek of delight or frustration.
As part of the acceptance of his IDIC15 diagnosis, I would say that the likelihood that Matthew will be non-verbal has been one of the most conflicting and difficult to come to terms with.
In conversation about Matthew, through blissful ignorance or naivety, some have told me that must we stay positive and in his own time he will talk and those words will come. Some fail to understand how freely I accept the situation, confused that I have given up on what is the most basic of childhood skills, I have been told I am being negative for giving up on speech and that I must hope and one day it will happen.
Sometimes I will explain the logic, that by accepting the likelihood of Matthew being non-verbal it allows another part of the grieving process to be fulfilled, by accepting it doesn’t mean I do not hold hope, bloody hell, that remains constant and will never fade but a bizarre irony means I accept, yet hope, and will do everything possible to make the “impossible” happen!
If it doesn’t, I am comfortable as I have hopefully already conditioned myself and reached acceptance, if does, well at that moment I will probably explode with pride, joy and a few tears too.
Yet not speaking does not mean he does not communicate, in the relatively short time since diagnosis I feel that we as parents have become attuned to non-verbal communication in a way I never before understood possible, being led by the hand to the general area of something Matthew wants, he doesn’t point at objects so the guessing game starts there, left too long and the frustrations can so quickly take over him.
Shrieks, grunts and squeals, incoherent noise to an untrained ear yet somehow so quickly can be understood and help to decipher his complex needs and wants, preventing an inevitable melt down.
So, back to those 3 small words! Love. You. Daddy! He cannot utter those precious words, that phrase that I long for yet I accept he may never speak, so does he? The hugs and cuddles tell me de does, and that for me is worth a thousand words or more.
Too often kids are told, to “Be quiet”, to “Shut up”, “Silence” with that old adage of children should be seen and not heard, well b***cks to that! Let’s let them be kids, to use their voice and let’s cherish every word.
I recall in a recent post I referred to the struggles of our eldest daughter and her ever willing attitude to help us as an additional carer to Matthew, a stance she still adopts and seems to take pride in.
Since we first found out about the young carers groups late last year we have attempted to get our daughter to attend but with little success, often painfully shy and fearful of the unknown she went from interested to unsure to point blank no and back again on a weekly basis.
Certain of the positive results that the groups would offer her, we constantly gave her positive vibes about the groups along with subtle encouragement to get her through the door for the first time. However with a busy schedule and her reluctance we put it on the backburner over Christmas and in the early part of New Year.
Eventually I decided to take the bull by the horns, came home from work early last Thursday and suggested I took her down there and we had a look at the fortnightly music sessions they held.
I was met with stubbornness, defiance and tears, disappointed at the wasted afternoon I resigned myself to try again another day as she came down from her room dressed in her pyjamas rather than the change of clothes I had expected. She explained that she didn’t see why she needed to go for time out away from Matthew, she enjoyed doing her bit and that was that. Very admirable I must admit, but this was for her benefit and I didn’t want to let it go.
After much persuasion and a cast iron guarantee that I would not leave the building and that she could leave at any time she finally agreed to go, step one accomplished!
Step two, getting her out of the car and inside was surprisingly easy, holding my hand tight and as quiet as a mouse we were met by staff who immediately made her feel at ease. Highlighting how incredible she was for all she does at home the carers trust worker immediately brought a shy but visible smile to her face, step 3 accomplished.
Step four, getting her to get involved was instant, already possessing a passion for music, especially the guitar she quickly settled and was absorbed at learning new chords and the shy smile got bigger.
When she went to another room and was greeted by another staff member (again with a guitar) and invited to sit down and join in a sing song, she was in awe as she listed to her favourite Taylor Swift and Little Mix songs be sung in front of her, she even began to join albeit ever so quietly.
Next was a drum kit, going from a few nervous taps to full on Reni (Stone Roses) wannabe in a matter of minutes, she made me proud and I hoped that she was enjoying it as much as I was and that her smile was genuine and not forced, it was definitely the former.
As the session ended she was shown the room with the DJ decks where she could mix music and make her very own song, she pleaded that she be allowed to have a go, much to her disappointment that has to be reserved for the next session, but it gives her something to look forward to and a reason to go back.
Leaving the centre I felt relieved and proud as she told me that she couldn’t wait until next time, mission accomplished!
Hopefully it was the first step along the line for her to a support network that can help her in years to come, new friends and the opportunity to practice the musical instruments she loves so that she gets her own time and escape. Her practice on the guitar is usually comically interrupted my Matthew and his sensory desire for the noise it makes and the need to touch it.
Fingers crossed the carers trust groups will provide her with a much needed diversion away from the day to day life at home, she deserves it and that she will increase in confidence with every session, one thing is for sure is that the young carers groups really are invaluable resource that we are incredibly grateful to have access to.
Sometimes you don’t value quite what you have in front of your eyes, life seems to get in the way and you begin to normalise all around you.
Some 16 months or so on from diagnosis I would say we have normalised a lot of the daily challenges we encounter at present and the adjustments we have made to life as parents of a child with a chromosome disorder (IDIC15 / dup15q).
We find living in our own little bubble, we have forgotten what was considered the “norm” with our daughters when they were toddlers. Those things we took for granted, the ever growing independence they began to show from the age of two, the freedom it afforded us to have the occasional night out, compared to our new normality of structure, routine and putting Matthew’s needs first.
An event this week and a conversation at our daughters school made us realise how me we had also normalised the contribution our girls make to caring for Matthew, especially our eldest, who at nine years old so often quietly takes control and assists us in so many ways without ever being asked to.
I would not say we take their contribution for granted in any way, as we appreciate how they help however small it is, though looking now I can see how often it can go unnoticed as we have normalised what they offer and how willingly they go about it.
Taking a step back reminded us that at times they do get frustrated, they are still children after all, and as much as we try to give them the freedom to be children, sometimes our new normality and life seems to get in the way.
Our eldest daughters frustrations this week helped to remind us of this, we were pointed in the direction of young carers trusts, something until today we knew nothing about. This intervention reminded us of the value that the girls provide to our family unit and dynamic, but most importantly the value they will gain from being allowed to be children first and foremost and a young carer second.
I have already written in the past about how much the girls will learn from Matthew, something I firmly believe they will, however unintentional, it will make them more tolerant, caring and all round more incredible as they grow up. However inevitable and unintentional this is, it cannot come at the expense of childhood, their childhood is so vital and one which in the past 18 months or so has been something of a rollercoaster of emotions which they have taken the front seat of.
They are truly special siblings to a truly special little brother, and a little lesson has taught me that they sometimes they need a break from our normality and the chance to experience a different one, and most importantly the chance to be kids and do what kids do and have fun.
A Dad’s View of 15Q – An insight to the first 2 years of a “Chromo Parent”, by Ian Hill.
Chromosome disorders and their diagnosis on your child are a lonely and isolating event, as a Dad you must stay strong, keep it together, maintain that stiff upper lip and keep the ship steady, or so we are told by society. Reality is somewhat different, your children and your family are your world. Never fear shedding a tear for them, be it pride or pain they are worth every last one and never be too proud to show it.
Shortly after receiving diagnosis of duplication 15q for our son Matthew I registered with Unique, the loneliness decreased a little and I had valuable information at my disposal. The information was great, the welcome so warm, but there seemed to be something missing from the groups, something so familiar, something relatable, something so simple, other Dads.
So, the following is a Dad’s view of 15q, a recollection of events of Matthew’s life so far, emotions, thoughts, and musings from the heart, typed at times through tears of pain and pride at the little boy that is my son, Matthew Hill – Dupl. 15Q 11.1-13.1
July 22nd 2013, the day had arrived of the planned C-section, my wife Debbie and I would find out if I would be truly hen pecked and Father to another beautiful daughter or get the boy I so longed for that would complete our family, either way the love would be instant and I would burst with pride. As we turned on the car and the radio switched on, news filtered through that the Duchess of Cambridge was in labour, our special day would be extra special and our new child would share a birthday with a future Monarch.
The birth was relaxed and straightforward, the surgeon as promised did not reveal “the flavour” as my father in law would say, and it was left to me to find out. A tear hit my eye and as I looked to Debbie my voice went hoarse,”a boy, we got a boy, thank you Debbie” I choked out.
All appeared normal following the birth, Matthew seemed just like any other baby, a little difficult to settle into a feeding pattern but with determination from Debbie that passed. At around just 4 weeks we had our first taste of the children’s ward at Warrington Hospital, Matthew stopped breathing while feeding, described as a “blue moment” by Doctors.
Following two days of tests and observation, results proved inconclusive and it was attributed to reflux, whether it was linked to what was to follow we are not sure.
Time passed by and at his 6 week check the first concerns were raised as he did not smile as expected, initially passed off as “nothing to worry about, we will monitor it” immediately the mind was set racing and the inevitable worries.
In the following weeks I found myself constantly imploring him to smile but to no avail, when he finally did the feeling immense, yet the smile was fleeting and not full and gummy like our daughters were when they were the same age.
“Why?” , “Is it just a boy thing?”, “Just ignore it, there is nothing wrong with my boy!” I told myself, deep down and secretly I feared there was something not quite right, but denial was in full swing.
As summer passed to autumn and in turn winter his development lagged in many areas, milestones were missed but child development specialists told us to just wait and see, deep down I still held a fear something was wrong, but denial stood firm.
As a new year dawned we were full of hope and expectation as we prepared to move house to accommodate our new larger family, unfortunately a week prior to exchange and completion our onward house purchase was delayed, our buyer gave us 2 weeks for us to sign and move out or he pulled out. Reluctantly we agreed to his demands, completed and moved in with Debbie’s Mum for the 6 weeks it was anticipated that it would take to resolve the onward issues, hopeful for a quick resolution we shoehorned all 5 of us into one bedroom of a 2 bed terrace.
The 6 weeks approached and we looked forward to being able to get space again in our new house when our attention was diverted back to Matthew and something that made our development fears come back to the fore. The smiles he had for us had gone, he wouldn’t eat, he slept most of the day and it was more of a question of how long is he awake rather than how much does he sleep, our beautiful boy held a vacant stare, he had no interest in toys and had almost become a zombie before our eyes and we had no idea why. Were we being paranoid, neurotic parents? This was our third child; we knew what was normal for a child his age and what was not.
“Something is wrong” I suggested to Debbie,
“IT IS NOT, leave my boy alone!” she replied, I knew, and I could see that she did too, but the denial had kicked in again, the acceptance was just too hard to take.
A few days later Debbie phoned me at work to say Matthew was doing something funny with his arms, “It will just be wind.” I dismissed as I had a busy day at the office, “But phone the Doctor and see.” The local GP was mostly unconcerned but made an onward referral just to be sure.
That night he did it again, I thought it was strange, “Probably wind.” I told myself unconvincingly, but I knew it was far more serious and it terrified me. I began to withdraw from Matthew, I hated myself for it, but I couldn’t help it, the unknown was scaring the hell out of me. If he was waking I found I would avoid him as I knew one of the episodes was inevitable and seeing it upset me too much.
This was my Son and I was scared to go near him, I had to fight back to protect him and be strong.
That weekend we took the kids to Knowsley Safari Park, we stopped for lunch and Matthew waking from a slumber started doing it again, spasm like movements, this time more pronounced, all at once arms moving together, eyes wide, legs up! “What is he doing?” Debbie whispered to me close to tears but not wanting to raise concern with the girls.
He continued, arms, eyes, legs, and again and again for several minutes, all the time unresponsive, then it stopped and he cooed, “Probably wind.” I thought, but I knew now it wasn’t, we both did.
Later that day the phone rang, it was the vendor on the onward house purchase; our house purchase had fallen through, though it barely registered at the time through the concern for Matthew.
That night I foolishly turned to Google, typing in the symptoms it arrived at a diagnosis, one that was ultimately correct and reading it made my heart pound and my head spin, I closed the laptop and tried to pretend I hadn’t just seen what I had read, denial was taking over again.
Early the next week and manning the office of the family business alone as my Father was away on holiday I was fraught with fear, the Google “diagnosis” still fresh in my mind, the solitude made thoughts run through my head, I cried, emotions of anger, fear, upset and more denial! I dreaded the office phone ringing and having to deal with customers, my head and heart were both elsewhere.
“My boy, my boy, not my boy, what is wrong with my boy?” I asked over and over again.
The phone rang, it was Debbie, and he was doing it again and had done so a few times that morning. “Just take him to hospital” I said choking on tears, we were both crying, we now knew there was something seriously wrong.
Having already googled the symptoms I had an idea what the diagnosis would be but still denial kicked in, if I didn’t admit it, it may not be true. I grabbed the phone, called my Father to interrupt the final day of his holiday and tell him I was abandoning all at the office, the business was important to me but right at that moment nothing else mattered but Matthew.
I raced back down the M62 to Warrington to be with Debbie and Matthew at hospital, he was already on the ward and I was taken through to see them. Multiple doctors came and went, questions asked over and over, tests done, bloods, Matthew prodded, poked and pulled in all directions, an MRI, a trip to Alder Hey for an EEG, fear, diagnosis, numbness!
The Doctor sat us down and told us, “The EEG, shows hypsarrhythmia consistent with Wests Syndrome / Infantile Spasms”, my throat burned, I wanted to be sick, tears filled my eyes, the prognosis and its effects still etched in my mind from Google, “Our little baby boy has a rare form of epilepsy, what now?” I thought.
Tests of all kinds were done to determine the cause of the epilepsy, the medication failed to take hold and the seizures came again and again, we became scared to wake him as that was when they would usually happen. Emotions ran high, sleepless nights followed, all the while cramped in a house with no space to let it out.
Another long seizure episode of over 20 minutes, curtains twitched from neighbours as an ambulance arrived for the 6th consecutive night to take Matthew away to hospital, lights flashing, the girls woke confused to find us gone again.
“When will this stop?” we asked, “Help our boy!” we pleaded.
Easter weekend was spent at the children’s ward with our daughters packed off elsewhere without us, oblivious to events but our eldest was acutely aware that something was not right.
The Vigabatrin was not working on its own so steroids were introduced for a short sharp burst, Matthew bloated, a week or so passed and still the seizures came it had been nearly a month since the medication started, then on the night of 7th May it happened, he woke and he smiled! I looked, Arms? Still! Legs? Still! Eyes, normal! “Had they stopped?” we asked ourselves cautiously. They had!
Seizures under control we waited, more tests were done and seeing Matthew whimper and sob bent double in a Doctor’s arms as they performed a lumbar puncture broke our hearts again, no child so young should be put through this and no parent should have to see them suffer like that but we declined the option to wait outside, there was no way we could leave him alone, still we waited for the cause.
Months passed and summer came, our life seemed to be passing us by and we felt guilt as unintentionally we neglected the girls because of the time dedicated to Matthew and the atmosphere at home grew more and more tense. Slowly though Matthew began to smile again, he became more alert and started to show an interest in things around him, the first signs our little boy was coming back.
As Matthew’s first birthday approached we received the call we wanted, the call we dreaded! They had an answer, a diagnosis, a cause. Tensions at our temporary home were at breaking point we knew the news was going to be hard to take; again we had nowhere to hide.
Meeting the consultant on that hot Friday in July my heart raced, I held Debbie’s hand one way and Matthew’s the other, the consultant paediatrician spoke explaining what they had found and it hit us both like a kick to stomach.
“A duplication what?” I enquired.
“Duplication 15q, it is a rare chromosome disorder.” The consultant said slowly.
People were speaking but little registered, tears filled Debbie’s eyes, I tried to hold mine back with little success, the voices continued but the room felt silent behind a whirling high pitched noise in my head.
After regaining some degree of composure we were told calmly and with an ironic combination of compassion and directness that our little boy may not be the boy we hoped and dreamed for, that the hopes and dreams may not be fulfilled, we had to grieve, we had to let go and we had to adjust. Our precious little boy, our very own Prince had a rare chromosome disorder and it would change his and our life for ever.
The Consultant pointed us in the direction of Unique and that night reading information given to us about 15q disorders the reality began to dawn, thoughts went back to what the Consultant had said, those hopes and dreams began to slowly fall apart and I feared the worst.
Like with many Dads I had unrealistic hopes and dreams, Matthew was going to play football for my team, Manchester United! I already had him down as their future centre forward, dream shattered! Football in the park? Shattered! University? Shattered! Matthew’s future independence? Shattered! All those little things you take for granted, how many would we experience with him? Numb, I went to bed, I felt helpless, useless, devastated, full of self-loathing and blame and asking the questions, “Why Matthew? Why us?” “What happens when we are old and gone, who will be there for him then?” At that point there seemed to be no light in the tunnel and I didn’t know where to turn.
The next day I met with a group of friends I have known since school to bid farewell to one who was going abroad to work, I had said I would go and I felt that I couldn’t bail and let him down. As I arrived the first question asked was inevitable, as was my response.
“How’s Matthew?” one enquired.
Instantly I broke down in tears, 34 years of age, in front of the lads on an afternoon beer session, the ultimate shame? Not one bit! They were great, by their own admission they didn’t attempt to understand what was going on in my head, but they were supportive, they had my back, that’s what friends of near 25 years are for and they knew that this was serious.
Matthew’s 1st birthday was a subdued affair, the diagnosis just days before made it all so hard, but we had to maintain a brave face for the girls, they wanted cake and balloons for their baby brother, we did our best to celebrate despite the burning pain inside but it just seemed so forced and difficult.
Slowly the haze that had shrouded me for the past 5 months began to clear, we had an answer on diagnosis and now I had to be strong! I was Matthew’s Dad, his advocate, his rock! I also needed to be there for Debbie and the girls, my attitude began to change and new found strength followed, I realised that if I crumbled it would affect the business, my wife and all of my kids and all were far too important to me.
The house move finally happened in late August, 6 long months of waiting over, within weeks of moving in Matthew began to thrive, his smile bigger, giggles, laughs, playfulness, hugs and cuddles all we ever wanted was back.
My strength grew again and I began to reach out to contact other families via Unique, they became an invaluable resource and I realised we were not as alone as we first imagined, there were many more families out there who had been through the same emotions, pain, confusion and come out the other side, the other side of that tunnel that weeks before was totally dark which I was now beginning to emerge from.
It helped me to focus on the now and cherish what Matthew was doing today, I realised that his condition I couldn’t change, but if I could make the most of what he did today and any progress he made then I would be sure I didn’t miss anything, the small things became big and the joy at each one immeasurable and since reducing and then stopping the Vigabatrin we saw a new boy emerge with every step down of the weaning process. We remain thankful and feel blessed that thus far the seizures have not returned, we accept that may not always be the case but that reinforces the need to embrace and cherish every part of today.
With the positivity we showed, Matthew responded and although today he is still behind his milestones for his age he is making progress and with a smile that could melt a thousand hearts. No longer is he the boy of shattered dreams, he is our brave little boy who is fighting his condition and with each day surprising us over and over again.
Seeing comparisons to his peers is still hard, seeing Prince George in articles or TV appearances brings the stark reality of difference in development to the fore, at times it hurts as I consider where he could be right now, but above all I value the massive steps he has taken from that baby without a smile to who he is today.
He is a cheeky little guy, very attached to his immediate family and wary of those he does not know and even some who he does, he has developed an incredible dynamic with his eldest sister who at eight years old shows a maturity with him way beyond her years, their closeness and bond is a real joy to watch and both our girls have and will learn so much from him that we as parents and the education system cannot teach.
Approaching two years old he is attempting to take his first steps and bring us a whole new dimension of fun and trouble. Like with many chromo-kids, feeding is a slow and unpredictable process and sleep is erratic, he has very limited, if any recognition and understanding of instruction or language and as yet he is still to speak his first word. We know there is a real possibility he may never, but hearing a babbling “DADADADAD” is enough for me right now and hearing a hummed response to “Love You” that sounds like and matches it is a gift.
He may not get to play football in the park, if he got my footballing genes he was never going to play for The Dog and Duck reserves never mind United, he may not go to University or do any of the other things we hoped for but one thing he has that you can see in his eyes is a bravery and determination that will go a long way!
The future we cannot predict and we know the condition will bring challenges and struggles but with the help of family, friends and all those associated with Unique we know we have great support whatever happens.
I am Matthew’s Dad, just an ordinary bloke with amazing kids and an incredible wife who is stronger than she will ever admit, who in a short space of time has been elated, deflated, devastated, touched by the kindness of friends and family and become wiser and stronger and all from someone so young.
He is Matthew, he has duplication 15q but duplication 15q does not have him!
As I said at the start, your children and your family are your world. Never fear shedding a tear for them, be it pride or pain, they are worth every last one and never be too proud to show it