Moving onย 

When you become a parent you prepare yourself to raise your children until they reach adulthood and then set them off on their journey into the big wide world. You mentally prepare yourself and dream of the day you pack them into the car with their belongings and drop them off at the university campus of their choice, you will worry that they will drink too much and not attend lectures, hope they won’t live on pot noodles and remember to ring home occasionally. But when you have a child or children with a disability the goal posts change dramatically. You hope that at 18 your child has mastered toilet training or not shouting at their coffee in Costa because it’s too hot ( while we are on that subject, I apologise to the man who witnessed Jack screaming ” ha ha f**k you , you burning bast**d ” at his coffee 2 weeks ago) Anyway I digress. I’ve been Jacks Mam for 18 years, it’s been a rollercoaster, it’s been bloody hard, it’s been fun , it’s also been completely exhausting . Jack is a complete sweetheart , he makes me proud everyday, he can also be a complete arsehole because he’s a teenager! He and Lucy argue a lot, you parents out there with more than one child will understand what I mean . It’s like sibling rivalary on steroids , he pokes her and she throws a Furby at him, he screams and I dive like a ninja in between them often getting hit, pinched or bitten in the process. Then there’s all the personal care to deal with, the medication etc , the list is endless. 

Anyway, when Jack turned 18 I started to seriously think about the future , how long could I keep doing this for? Many of my friends had asked me about taking a break and I always gave a glib response about having one night off a month which was fine. But secretly I yearned for a break. I last went on holiday on August 25th 1996 , I’ve sat with friends as they discussed holiday plans and pretended that I didn’t miss holidays , I even did some press around this subject two years ago for a Carers charity. It’s also a bit of a joke among my colleagues that I never go away. One of my dreams is to attend the SLOS conference in America in two weeks,the chance to meet friends who are like family and hear the latest research,  we have tried desperately to make it a reality but sadly it isn’t going to happen this year. As part of Jacks transition to adult services he was allocated a new social worker, we have been incredibly lucky that the new social worker is great , they have taken the time to get to know Jack and us as a family , to help us figure out what is important for our wellbeing and to explore ways that we could continue supporting Jack and have a life outside of caring. But I will admit when they first mentioned respite for Jack away from home I was ever so slightly mortified. I’m his Mother , I look after him and Lucy , it’s what I do. How would he cope without me? How would I cope without him? What would people think of me? Would they say I couldn’t cope ? I should add here that I have worked for and with Carers for 13 years, I plan services, write policies  and arrange services for people just like me that will allow them to have a life outside of caring . I advocate that it is extremely important to look after their own wellbeing, but do I take my own advice? Do I hell. 

After lots of discussion with Jacks social worker where I am sure they must have thought I was a little crazy with my million and one questions and outpouring of emotion we arranged to arrange a local respite facility. I of course had decided that I hated it before we arrived. The day of the visit I snapped at poor Ian all the way there, I had a vision of a dreadful place ( even though I really knew better) but I was pleasantly surprised. This place was amazing, the manager was a warm and friendly person, the staff had a great attitude , the facility was amazing . I left feeling much lighter and positive. Soon tea visits began, this wasn’t plain sailing as in his second visit Jack decided that I was leaving him at an internment camp or something and screamed the place down, I sobbed all the way home and stressed for the two hours that he was there. I needn’t have worried as when I went back Jack had charmed everyone and was reluctant to leave. After a few more tea visits it was time for him to stay the night. 

Now , we were committed to this new stage in our lives, I was confident that Jack would have fun and be well looked after.. so , why was I gulping down the lump in my throat as I purchased new toiletries for him to go? Why did I literally sob as I washed the new red towel and pyjamas that he would take with him? And on the morning that he left why did I fall into Ian’s arms crying until I thought I would never stop? 

He had only been there 30 minutes and I wanted to ring them to see how he was. I managed to last three hours before I dived on the phone. To my relief he was doing great! The staff loved him ( how could they not right?) and he was having fun. I felt guilty as I realised that bed time was a little easier with just Lucy to settle, Ian and I were sitting down at 7:30 pm, we had a conversation, we laughed, we were in bed and asleep by 9:30pm

When I rang the respite centre at 7am staff reported that he had been great, he had slept well ( which he doesn’t do at home) and was happy and calm , he went to school with a big smile on his face. Ian and I had a relaxing day at home until it was time for the kids to come home from school . They came home happy. Jack had taken the whole thing in his stride. Somewhat rested, I was ready to take over the reins again . We had all survived and actually benefitted from the experience. 

I still feel a little guilty,  but I keep reminding myself that you can’t pour from an empty cup . Spending a night away from home was fun for Jack , I mean when I was 18 I often stayed out and ….. well my mother reads this blog so I won’t say anymore. He needs some more independence and we need a break. So he’s booked in again for two weeks time. ๐Ÿ˜‰

And then they came for me…

Unless you’ve been living under a rock recently then you will know that we are facing a general election on June 8th 2017. This fills me with hope and terrifies me in equal measure. I am hopeful that things will change yet terrified that they won’t or that things will get worse. 

Before having Jack and Lucy I didn’t really care much for politics, I always voted but gave little thought before putting my cross in a box. In my ignorance I believed that the people that needed the most help would get it, I mean we don’t live in a third world country right? So when we needed to find support for Jack when he was around 3 I fully expected to be able to access it easily, we collected the forms to claim a disability benefit for him and when we opened them I nearly cried. You need a PhD to complete these forms, you have to provide huge amounts of evidence to prove that your child can not walk , can not eat, sleep etc. You simply can not say that they can’t do this stuff, oh no ! You have to collect evidence from every single professional involved in their care ( no simple task when you have a complex disability) and send it away along with the very lengthy form. Then you wait for someone who has never met your child and knows nothing about their syndrome to make a decision on whether they are entitled to financial support . When Jack was awarded Disability Living Allowance we were ecstatic , yes that’s right, we were ecstatic that someone we had never met had believed us when we were telling the truth. I thought in my naievity that was the end of that, but it wasn’t sadly, we had to go through the same thing every few years . Fast forward 15 years and Jack at 18 had to go through claiming Personal Independence Payment (PIP) a very helpful person at the DWP suggested he may grow out of his syndrome . Then there is the further indignity of being called to a face to face assessment where a total stranger with a medical qualification totally unrelated to your disability will make you perform a variety of tasks to try and prove that you don’t have a disability and or are not ill. If by some chance they believe that you are telling the truth they will allow you your benefits , but can review you at anytime and make you go endure the whole hideous process again. 

Under our current government people like Jack and Lucy have really struggled, we also face Brexit a decision made by most voters based on xenophobia , ironically the very people that voted to leave Europe will be among the hardest hit when European funding is withdrawn. 

People that know me in real life often joke about my left wing views, I have been accused of having views left of Trotsky but I own that. Having lived with Jack for 18 years and fought countless battles for him and Lucy I have seen first hand what government cuts look like. I have worked for and with Carers for 13 years, I have watched people crumble under the pressure of caring for someone that they love. Yes I am acutely aware of what suffering looks like . I also know that our country is not in great shape, but taking vital support from  the most vulnerable members of society is not going to help. In fact as people are further oppressed and can no longer cope then it places a further burden on an already strained economy. 

So before June 8th read, research and educate yourselves. The proposed cuts may not apply to you or someone you love right now , but none of us know what is around the corner. 

Of course ๐Ÿ™„

I find myself saying ” of course” about 100 times a day. It’s always followed by – he did, she did, they are or other variations on the same theme. It’s either said or thought in a sarcastic or resigned tone and followed by an eye roll. 

Jack and Lucy say and do ridiculous things on a daily basis, I now expect it and not a great deal surprises me anymore. For example today alone we have had ” maaaam Jack is peeing in the shower again” I should clarify that he wasn’t actually taking a shower at the time, he was just peeing into the shower. And ” maaam lucy is eating her snot again” I suppose it makes a change from her trying to eat Jacks hair wax. 

Last year the kids were in bed when there was an almighty banging sound resonating throughout the house, we immediately jumped up and started bleeding radiators and checking pipes. The noise continued, I was looking up the number for the plumber when Ian shouted down the stairs ” it’s ok, it’s just Lucy kicking the crap out of her radiator” , my first thought ” of course it is” . On the subject of plumbers , we did actually call one last year as our downstairs loo was broken, he dismantled it and then called us to say that he had found a whole toilet roll, a hearing aid and a collection of toys down there. We weren’t even surprised.  On another occasion a washing machine repair man came to find out why one ( yes we have more than one) of our washing machines was flooding the utility room, he called Ian and said ” I’m a bit confused mate, it looks as though someone has bitten a chunk out of the rubber seal” – of course they had. 

And who can forget the time I called Ian to tell him that Jack and picked a huge hole in his duvet and was wearing it like a poncho. 

Or the time that Ian called me to tell me that whilst he was bending over to wash Jacks feet in the shower Jack had shoved his knob in his ear ( Ian’s ear, not his own because that would be weird ๐Ÿ™„) 

Or last Christmas when I was changing Lucy’s nappy and was a tad mystified to find tinsel, I asked her what she had been eating, her response of ” the Christmas tree” just made me roll my eyes and think the usual response. I mean who doesn’t like a festive themed shite? 

Jack has hypermobility , on one occasion Ian told me that Jack was upstairs with his knees either side of his head and was looking up his bum hole. Of course he was. 

Today has been a particularly tough day, the kids have waged war on each other every single time they are in the same room. Ian is nursing a new collection of bites and I have a really sore back and a swollen thumb from Lucy wrangling. We are both exhausted and I’ve had a few moments today when I’ve thought to myself ” I can’t do this anymore” . Lucy is now in bed and Jack is much calmer without his arch nemesis to irritate him, I’ve had a glass of wine and am listening to old music as a way to relax, Ian just returned from the shop and asked ” Kath, I just heard you singing Hey Jude on the top of your voice from outside” my reply? ” of course you did” ๐Ÿ™„

WTF is the matter with people??ย 

If you know me in real life then you will know that I am a really open minded and tolerant person. I’m a live and let live type of person. I won’t judge you on your job, ethnicity, sexuality etc , but I will judge you on whether you are an arsehole or not. 

Today Jack and I were in town, we were having a great time. In every shop the staff knew Jack and were really happy to see him, we made new friends too which always happens. Jack is the friendliest person that you are likely to meet , he talks to everyone, he compliments people and dishes out hugs with gay abandon. People always tell us that he brightens their day . We had just finished having coffee with our friend Nigel and were on our way home when a woman pushed past Jack and made him lose his balance , she was trying to push to the front of the queue in a bakery. Jack immediately apologised even though it wasn’t his fault and the nasty old trout started shouting at him. Now I’ve been Jacks Mum for 18 years so am sadly used to some people’s ignorance and will always try to calmly explain that Jack has a disability, but today I totally lost it. I wiped the floor with her, I threatened to do all sorts to her before she walked away looking sheepish. I was still upset when I got home , and as soon as Jack went out with his support worker I burst into tears. 

I mean WTF is wrong with people? 

I get that some people are a little wary of Jack – I mean the guy is huge and very loud, however just a quick conversation with him will tell you that he really is a gentle giant ( his sister Lucy on the other hand looks angelic but will f**k you up , make no mistake) but surely there is no need to be unpleasant? 

We get lots of funny looks from people when we are out and about, I mean it’s not everyday you see a family having a drink in Costa with fox the wolf or a fat bird carrying a Christmas cow into the hairdressers, for the most part we are oblivious to the staring as it happens so frequently, which I guess is really sad. Why do people feel the need to stare? Mind your own business and go about your day. We were at a museum once and Ian told one family that the exhibits were over there and pointed in the opposite direction to our little family. 

It’s not difficult people, if you see something that you don’t understand then educate yourselves, ignore it, accept it or f**k off. But whatever you do , don’t stare or make ill conceived remarks. If you see us in Port Talbot then come and say hello, we don’t bite. Well Lucy does a bit …… 

What happened?ย 

I think it was John Lennon that said ” life is what happens while you’re busy making other plans” and this morning I finally understand that quote. I mean I always understood what he meant as an intellectual exercise but until today I didn’t really feel that it applied to me. 

To put it into context, I moved a box of old photographs ( I can do that now after that stupid hernia repair) and an old photograph fell out. The photograph is of me aged 21, I was at university and ready for yet another night out, I’m relaxed , happy and smiling . I didn’t have a care in the world. Jack immediately recognised me but followed it with ” what happened ?” I just laughed and said ” life mate” . But as I was showering Jack I did think to myself , yeah what happened? 

When I look in the mirror I don’t recognise the old trout looking back at me, last week I accidentally looked in the magnifying side of the mirror and almost screamed. I mean I know I’m getting on a bit but I had quite the surprise when I clocked the ” laughter lines” around my eyes, I mean surely nothing is that fecking funny? 

I thought back to my younger self. Kathy Collins was what my dear Nan would describe as a hell of a girl, there is nothing that I wouldn’t drink/ smoke/ try, these days my idea of risk taking is sneezing without clenching my pelvic floor. Gone are the days when I would be on my way to a job interview, bump into my mate Kev, end up in the pub and turn up to the interview as pissed as a fart ( obviously I didn’t get the job) these days I’m a responsible adult. 

Having Jack and Lucy made me grow up pretty damn quick. I know that parenthood makes the majority of us grow up quickly but when you have a child with a disability I think you reach a level of maturity that you didn’t think possible. Don’t get me wrong I still laugh at childish things but for the most part I’m quite sensible these days. I have two children who depend on me for literally everything, they are in no way and never will be independent. But that’s ok. 

My days are spent cleaning people up, feeding people, negotiating with people who make impossible demands ( I would be a great hostage negotiator I think) measuring out and administering medication , dressing and undressing people and carting the Christmas cow and fox the wolf everywhere we go. 

Before I had children I decreed that my children would not control my life, would only eat organic food and never have a tantrum in public. Let’s all take a minute to laugh about that ๐Ÿ™„

Sometimes I feel that in the middle of this heavy caring responsibility that I have lost myself. I mean I am a parent carer, a wife, a daughter, an employee, a friend, a cousin ( I’m an only child) and somewhere in the middle of that I am an individual. I always feel guilty that I don’t give enough time to people. I am constantly exhausted . 

Having kids like mine is not always the best for your self esteem. Jack is always telling me my hair needs dying, he touches my face and tells me I have a beard like santa, recently he pulled up my top in Tesco and started singing ” jelly belly” of course my hands were full so I couldn’t really do anything. Lucy is forever shaking my belly and shouting ” wobble wobble ” . But then they tell me they love me and I’m the best mother in the world and I immediately forget the rest. 

As I sit here typing this whilst wearing my reading glasses ( because I’ve reached the age that I need them) listening to Lucy being a growling bear and thinking of all the funny things the kids say and do I realise that Kathy Collins is still in there somewhere , I mean the kids have got their eccentricity from somewhere right? 

Holidays SLOS style

It’s Easter Sunday today. For most families holidays like Easter and Christmas are an opportunity to relax with family and friends, to enjoy a delicious meal and celebrate whatever traditions they associate with that particular holiday. 

For us holidays are met with a degree of trepidation. We never really know how Jack and Lucy will react on the day , with that in mind we don’t really make too many plans and just try to go with the flow. 

We have had some truly bizarre holiday celebrations. There was the year that Jack was terrified of his presents on Christmas morning and wouldn’t open a single one , he screamed and sobbed whilst hiding behind his Grandad. For a few years we had to provide all and any gifts in a bag that he could easily see into. Thank goodness that passed. Now Jack and Lucy have reached a stage where they absolutely love Christmas, they love the build up and the anticipation but sometimes the day itself is simply too much . A few years ago half way through opening his presents Jack actually went into shock, like proper shock. Luckily Ian is a nurse  so was able to help him quickly. 

Jack and Lucy have never eaten a traditional Christmas lunch, but one year Jack had a guitar off Santa, now I should clarify that Jack doesn’t know how to play the guitar but he is incredibly enthusiastic , so whilst the whole family including grandparents sat chatting and eating ,Jack walked around the table strumming the life out of his guitar whilst singing ” hound dog” in one tone – it truly was like being serenaded by Satan or being subjected to the entertainment in a questionable restaurant . We all ate our lunch shouting over the racket and ducking as Jack swung his guitar manically . He was wearing a white Elvis style jumpsuit all the while. As Jack was torturing us with his music , Lucy decided it would be a great idea to sit at the table and place metal cars inside her toy washing machine. I noticed that Proudfoot senior discreetly turned off his hearing aid at this point. Well he is almost 90 and doesn’t need that at his time of life. 

For the last 18 years Jack has wanted an Easter egg but has always point blank refused to even consider eating it. Lots of people with SLOS really struggle to eat and Jack is right up there with the best of the food refusers. But today he asked me to open an Easter egg and scoffed the lot!! Of course I cried and sent the video to everyone I knew. 

The rest of our day was probably a little different to other people’s. There was no fancy family lunch because the kids get a bit overwhelmed and we haven’t had time to cook one. Lucy decreed that she would not be leaving the house today and Jack really wanted to go to Porthcawl fair. So Jack and I went to Porthcawl to ride on the crappy ghost train ( he keeps his eyes shut all the way around and I have to cover his ears) and then spent ages watching his favourite ride whilst shouting ” pay at the pay box if you would like to ride” ( damn you echolalia) while people stared at him. Lucy has eaten her body weight in Chocolate today so her nappies will be a delight tomorrow. 

However once they go to bed Ian and I will enjoy a bottle of bubbly and some Gammon that we chucked in the slow cooker this morning. Yes it isn’t a traditional Easter Sunday but there is nothing traditional about us. Oh and Jack ate an Easter egg – did I mention that? Happy Easter folks โ€‹

โ€‹

Taboo ๐Ÿค

There are certain things that we never ever discuss in civilised society, there are certain topics that are not deemed acceptable in polite company and most certainly not for discussion at the dinner table. There are things that Ian and I discuss everyday without batting an eyelid that would make most people quite unwell, and we only feel safe to discuss them with certain friends that work in health and social care , certain family members and of course parents of children with disabilities. 

For us no subject is taboo. 

I felt compelled to write this post as for the past 35 minutes I have been removing lumps of poo from pubic hair ( not mine I hasten to add) with the aid of olive oil and cotton wool ( thank you to a fellow SLOS mum for that great advice) in the end I had to resort to my trusty scissors, which of course prompted a huge meltdown, threats of violence and inevitably getting bitten. But it’s all sorted now, clean nappy and happily in bed.  The  whole cycle will begin again tomorrow. 

When you become a parent you accept that changing dirty nappies and providing high levels of care, you expect that this will last for a few years until your child acquires a degree of independence . However when you are a parent of a child with a disability this continues for many many years and sometimes for the rest of your life. But no one outside of our world ever talks about it. 

Jack is always getting compliments on how smart he is, and he is. He is always perfectly groomed. To achieve this look takes a lot of hard work , the morning routine is taking off last nights nappy , showering him, shaving him ( not easy as he literally doesn’t stop talking) , cleaning his teeth, drying him, putting on his deodorant , dressing him, styling his hair and applying aftershave, putting on his shoes and socks and he is cat walk ready.  Then I start with Lucy, she however is not co operative and is terrified of the shower, so it has to be done quickly whilst she screams bloody murder. If you don’t watch her she flops out of the shower on to her tummy and bounces across the bathroom floor much like a sea lion on dry land. Of course the Christmas sodding cow is also in the bathroom whilst we participate in this pantomime. After fighting her into her clothes , which I imagine is how it feels to wrestle a greased octopus with a prepencity for biting , finally  I can then shower and get ready for work. 

I can’t even begin to talk about shaving Lucy’s underarms. 

As my children were growing up I was under the misguided apprehension that the level of personal care required would reduce. This makes me laugh now. I have been changing nappies for 18 years, clearing up poop and getting dribbled on. It’s a way of life now. It just takes a lot more baby wipes to clean up a teenager. 

Tonight Jack was on the changing table getting ready for bed and he was tired and irritable, he hit himself in the face and I think in the morning he will have a thick lip, I think Ian may have one too as he received a kick in the face for his trouble. 

I’m going to stop rambling now and drink some wine as in the morning it will be back to nappies and winets. Cheers 

Laughter is the best medicineย 

People often say to me ” I don’t know how you do it” when they meet us, or they hear our story. In fact I’ve had Dr’s, social workers and even a behaviour therapist say it. My answer is always that we laugh more than we cry. 

To give you some background I come from a family where humour is a way of dealing with life, I mean if I fell over my family would pick me up – but only after they had finished laughing ( they may even check I was ok ) and misfortune is met  with sympathy and support , but after a decent amount of time has passed you will forever be teased about the time your trousers fell down in public or the time you sneezed and farted in a restaurant ( of course neither of these things has ever happened to me , ahem) 

So it is little wonder that we deal with the day to day trials of living with SLOS in the same way. 

Today for example Jack told a woman that her moustache was beautiful, I of course apologised and guided Jack out of the shop , but I was laughing my arse off when we got back to the car. A few years back Jack and I attended an event for Autism at the Senedd ( Welsh Government building) we had to be searched going in and our bags etc scanned, cue a minor meltdown from Jack when he had to hand over his Empty DVD cover that he was carrying for it to be scanned. Anyway we sat in the audience whilst I silently prayed that Jack wouldn’t say or do anything silly, alas my prayers were in vain as one of the speakers droned on and on , people began to fidgit in their seats as the speaker continued. Jack had had enough and shouted ” please stop talking , your boring me. Oh and your tie is horrible” . The audience dissolved into laughter as the speaker apologised and quickly wound up his speech. As the speeches ended we quickly darted for the door only to be stopped by several people who really wanted to meet the boy who had said what the room was thinking. Among the people wanting to talk to us was a Welsh Government minister, it was all going swimmingly until Jack blurted out ” I really need a poo” then proceeded to lick her from her neck to her eye. 

Jack and Lucy always speak their minds , and I mean always. Now don’t get me wrong those of you that know me will testify to the fact that I myself pretty much always say what I’m thinking but as I have become  older I like to think that I am little more diplomatic these days. But my kids have absolutely no filter. For example last year Jack and I were at the Dr Who experience in Cardiff ( as an aside when we arrived the lady at reception asked if I had proof of Jacks disability, he was licking the counter as she asked) we walked around enjoying the exhibits when we saw a man dressed as Dr Who ( Tom Bakers Dr Who to be precise) and Jack asked him where the gift shop was, the man just looked at him. I explained to Jack that the man didn’t work there and attempted to move on . Jack however stayed firmly planted in front of the bemused guy , pointed  and said ” so why the fuck is he dressed like that?” I think we broke the four minute mile trying to get away. 

As part of his disability Jack has some difficulty with his speech. He mispronounces words frequently , like calling a Wok and wank for years, calling a fork a fuck and every December he sings that family favourite ” wanking in a winter wonderland” 

I asked Lucy why her iPad was in the floor to be told ” gravity” 

As a family we laugh every day, it really does get us through the tough times. People should really and try and laugh at themselves, and if they can’t then they should give us a call and we can do it for them, 

Welcome to Holland – Really??

There is a famous poem by Emily Pearl Kingsley  called Welcome to Holland, I am sure that many of you have read it or heard about it. If you are a parent of a child with  a disability then I am pretty certain that many well intentioned folk have emailed it to you, repeatedly until you can almost rattle it off by heart. If you haven’t read it then do a quick Google search as it is actually worth a read, the author describes the experience of having a child with a disability to planning a holiday to Italy, she describes the excitement in anticipation of the experience and the plans that you have made for your time in Italy, but when you land you find yourself in Holland. It is not the trip that you planned and despite your initial disappointment you actually learn to love being in Holland.

All very nice. However when I had Jack I felt as though I had landed in a bloody war zone and not Holland, I did not see any tulips or Windmills ( I did however hallucinate a Spaniel in the bedroom through sheer exhaustion, we didn’t own a spaniel or a dog of any description actually ) I also felt ridiculously ill equipped to deal with this new land. I had read all of the books on what to expect when you have a baby,so I was fully prepared for night feeds where I would sit in a rocking chair breast feeding my baby whilst Mozart played in the background. Yes I would be tired but one look at my sweet smiling baby would make all of that fade into insignificance. The reality was so very different.

For a start Jack did not sleep, and I mean ever!! This kid thought that sleep was for the weak. Our nights were spent pacing the floors with a baby that contorted his face and body into unimaginable shapes, all the while he would  keep up a steady stream of high pitched screams that penetrated my soul.

He didn’t eat either, it was virtually impossible to get him to take a feed, he couldn’t breast feed as his suck reflex was practically non existent. If by some miracle we managed to get some milk into him he would inevitably vomit it back up with such force that it would shoot several feet across the room. Then he would be hungry and so the whole cycle would start again.

He cried – a lot.

Days , months and years were spent supporting Jack to do his physiotherapy exercises to enable him to do things that many parents take for granted. He sat unaided at 12 months, crawled at 2 years and took his first steps at 2 years and 8 months ( these huge achievements are forever etched into my memory and my heart) . We also had endless appointments with Doctors, therapists and often lawyers to get Jack the support he needed, all the while we were completely exhausted ( did I mention that Jack didn’t sleep).

I also firmly believe that as a parent of a child with a disability you go through an intense period of grief, grief for the loss of the child that you thought you would have, grief for the child that you do have and all the struggles that they will face, grief of the loss of a dream for your family.  The Kubler Ross model of  grief identifies five very distinct stages.

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

So let me just talk you through my journey through the stages.

Denial. For me this involved a lot of thoughts like, this cant really be happening to us, disability happens to other families. He will catch up with his peers once he starts to walk, talk, eat etc. I remember when Jack was around two years old I took him to a mainstream play group, while all the other kids ran around playing and having fun Jack clung to me and sobbed, I still didnt understand that the poor baby was completely terrified and didnt know how to join in.

Anger. This was quite a big one for me, I was angry with everyone and everything. I went through a whole “Why me?” stage. I am ashamed to admit that I struggled as I watched Jacks peers overtake him, I was angry when someone close to me had a healthy baby , not for a minute did I wish any harm on them or their beautiful baby but it was really hard that they had what I didnt.

Bargaining. Now this is the one that will make all of the people that know me well laugh. I started going to church again, having been a lapsed Roman Catholic for around ten years. Please dont misunderstand, I support and celebrate any persons religious beliefs and would fight for the them to have the right to practise that belief, but religion just isn’t for me. Nevertheless I spent hours at Mass plea bargaining with God to make Jack better.

Depression. Yeah this one lasted a good few years, weirdly I dont remember too much about this as I was taking  a lot of medication, I do know that I isolated myself from people as much as I could and took great comfort in food, a legacy that is still with me today.

And finally acceptance. This is where we are today. I think complete acceptance came for me when Jack was around 6 years old, this was it, this was our life. I still have the odd moment where a friends child will achieve something like passing their driving test and the realisation that Jack will never drive hits me like  a physical blow, but I move passed it quickly these days, I dont cry for hours over what I can not control.

Our family life is amazing, Jack and Lucy are amazing. I couldnt love them any more if I tried. Yes its bloody hard and I am sure it will always be hard, however I am far more resilient these days, in fact  I would go as far as to say I am now a tough old bird ( well unless it comes to the kids school concerts and then all bets are off) . It may not be Italy or Holland but we have settled into our War Zone, we now have the essential skills and experience to survive, we can appreciate the beauty and the uniqueness , and do you know what? Life is good.

Jack the biologist

As many of you know we share our home and our lives with the Christmas sodding cow, however we also have Gwen whom the vet described as ” some sort of terrier ” , Will the somewhat bemused Persian cat and Little sox who is a domestic short haired assassin. 

We live in harmony for the most part and Jack and Lucy love our pets. However along the way we have had some interesting experiences with our family and the animals that share our home. Will the somewhat bemused Persian is an absolute darling, he never complains when Jack carries him around like a clutch bag, in fact he seems to encourage it. On one occasion Jack approached me, cat in hand and said ” Aw mam I love pussy” , I managed to not spit coffee everywhere and reassure Jack that Will loved him too, I mean that is a conversation that I was not ready to have”

Before Will we had an adorable little cat called Harvey, Jack was only 2 when Harvey came to live with us, having never owned a cat before I bought him an igloo type bed to sleep in ( experienced cat owners can stop laughing now) anyway I was in the kitchen making Jack his lunch when I heard an almighty cacophony, I turned around to see Jack with said igloo wedged upon his head, the igloo was moving in all directions as Harvey was trapped inside it. I managed to extracate Jack and Harvey from the contraption and promptly threw it in the bloody bin. 

We took Harvey to the vet for a check up when we adopted him, the vet took his temperature. Later that day I caught Jack trying to stick a jumbo crayon up the cats bum. We seldom talk about it as it’s far too traumatic, it’s is now only referred to as the crayola suppository incident ๐Ÿ˜ณ

Then there were the 4 goldfish. We let Jack name them to foster a sense of ownership and all that jazz, yeah we ended up with goldfish named Grandads car, pysgod ( Welsh for fish) Iggle piggle and number 4 . People still contact us on Facebook so that Jack can suggest names for people’s pets ( true story) so far he has named a rabbit seasick and a dog dickhead. 

Then there was the time that Jack saw our neighbours dog having a wee and then took off his trousers and pants and pissed on the line post. 

The eccentricity is not just confined to domestic animals , oh no. Jack once called me to tell me ” there’s a bee downstairs buzzing himself” just how one buzzes oneself remains a mystery . Lucy also called us one day to say there was a bee in the hot tub, I rushed into the garden but could see no bee in evidence, upon further probing Lucy confessed that the bee was now in her belly. Que another call to the poisons centre in Cardiff. 

And finally who can forget the day the kids and I arrived home to see Gwen proudly strutting up the close , she had escaped. Jack kept out of the car and proceeded to chase her up the close in the style of Benny Hill . 

God our neighbours must love us