What happened? 

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 🙄

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? 

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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 ​

Taboo 🤐

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 medicine 

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 😳

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 

A Different World

​At 8:58 this morning Jack was barking like a dog whilst Lucy was vomiting into my handbag. Ian and I just set about cleaning it up as if it was a normal everyday occurrence, which of course in our house it is. We deal with the weird and wonderful on a daily basis and don’t bat an eyelid, it’s only when we share these stories and watch people react with a look of horror or they fall about laughing that we are reminded that we inhabit a different world to most people. 

I mean you only have to look around our house to realise we are a bit different. For a start there are medical supplies everywhere, we have a lamppost in the sitting room, all of last year we had a 3ft singing reindeer who was dressed as Santa living at the side of said lamppost , his name was Phil. Phil has returned to the North Pole ( well the attic ) along with Frosty the 5ft 6 singing snowman and a 5ft singing and dancing Santa ( affectionately known as wa*king Santa because of the dodgy positioning of his right arm that goes up and down near his groin whilst he dances along to ” it’s the most wonderful time of the year” . But never fear they have been replaced by the Christmas sodding cow, a rather unusual looking reindeer that Lucy loves more than her family. The daily soundtrack to our lives is the music from Riverdance ( or Rubberdance as Jack calls it) that Lucy watches on repeat, I swear I could dance it myself now. 

The weirdness is not contained to our house though, oh no, it goes everywhere with us. We visited the Dr with Jack who proceeded to triage everyone in the waiting room by asking them what was wrong with them, one man clearly had something itchy and embarrassing as he went bright red and squirmed in his seat. I should add that while Jack was doing this Lucy was laying flat out on her face on the floor because she was ” over it” , people had to step over her to get to the reception desk. Then a rather plump lady came in wearing a bright orange padded coat, a very excited Jack bellowed “oh how lovely, you look just like a Halloween pumpkin” I just know she burned that coat when she got home. 

One of Jack’s support workers took him to the leisure centre in Swansea, they have a mascot called Tommy the turtle who Jack adores, Jack spotted Tommy walking at the side of the pool and got really excited, he leapt out of the pool while his support worker tried desperately to stop him. Of course he was soaking wet so it was like trying to hold on to a greased pig, he rugby tackled poor Tommy who was flat on his back in a heavy costume with a very happy Jack laying on top of him smothering him with kisses and shouting declarations of love. I’m sure that guy is still in therapy. 

Lucy licks the windows constantly, I often wonder what our neighbours think when they walk passed the house and see her. 

Then there was that Christmas where Jack took his light sabre in to the kitchen to fight the turkey that was defrosting in the sink. And who can forget the time I caught Jack scrubbing his actual bum hole with my toothbrush!!!! It was pretty vile and made worse by Ian’s question of ” what if it isn’t the first time?” 😷

But as I sit in our family home surrounded by Jacks collection of drinking straws and Lucy’s 40 Furby’s I can’t help but smile. Yes it’s all a bit odd, but then so are we and that’s ok. 

Jack is 18 

​​​


​Well Jack, today is the big day!! You are now legally an adult. It feels as though I have blinked and you are all grown up- how did that happen? 
When the midwife handed you to me I fell in love with you instantly, you were a perfect 8lb 9.5 oz ( ouch) bundle with a mop of blonde hair and beautiful blue eyes. Your Daddy and I spent hours staring at you and making plans for your future. You would be the chairman of ICI ( young people may need to google that ) or   a Nobel prize winning Doctor, I mean your parents were both university graduates so there was no way you weren’t going to be a genius. You would be a superhero and change the world. Right? 
It became very obvious very quickly that all was not well, you would refuse to feed and literally scream for hours. You didn’t sleep either ( that’s a blog post all of its own) and your development was so much slower than other babies of the same age. Soon your thoroughly exhausted parents were hearing words like ” assessment” and ” developmentally delayed” we had endless appointments and therapies , blood draws and examinations. At every one of these I had to fight the urge to pick you up and run out of the clinic. Medical professionals used terms to describe you that were alien to me,but  I looked at you and saw my perfect baby . 
As the years went by life was bloody hard, I cried endless tears of frustration and heartbreak, I went through a huge ” why me?” Stage . My weight ballooned and my hair started to fall out. Yet one winning smile from you would melt my heart and make me more determined to fight for you. I became a medical expert really quickly, I learned a new language both figuratively and literally as I learned to sign to you and taught you to sign to me. Of course I didn’t need a sign to tell me what you needed as I listened to you with my heart , and the rest? I just knew instinctively. 
When we received the diagnosis of Smith Lemli Opitz Syndrome at the age of  7 I felt a huge sense of relief, at last we had a name for it. I mean you already had a whole list of diagnoses like a severe learning disability, autism, feeding difficulties and so on but now we knew why. I found the SLOS family community and never looked back. 
People sometimes ask me if I wish you and Lucy didn’t have SLOS, I’ve spent hours thinking about this and of course I don’t want you to struggle but SLOS is a huge part of who you are. I can’t imagine you and lucy without it. It’s also changed my life completely. It’s taught me compassion and humility that I didn’t think possible. It’s taught me to let the small things go, yes our house constantly looks as though it has been burgled but that’s ok. It brought us a wonderful person named Ian, it’s brought me into a community of families who amaze and inspire me everyday, it’s shown me who our real friends and family are. It’s brought us new friendships and really made us a part of the community. It’s taken me to a job that I love. We have support workers who are a part of our family and prop us up when we struggle to cope( you’ve become a part of their families too)
Jack, you are a joy to everyone you meet. I seriously don’t know another person who is as popular as you are, nearly everyone in Port Talbot knows you and to be in your presence is to be in the presence of pure love as you don’t hate anyone, everyone is greeted with a kiss and a bear hug ( ok sometimes a head lock) and people always walk away feeling happier for having seen you. 
So my baby boy , you may not be the chair of ICI ( they went to the wall anyway) but you have most certainly changed lives. We , your family and friends couldn’t be prouder of you or love you anymore .
Happy Birthday Jackie Chan xx
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Shameless


A few weeks ago one of my colleagues blushed at work ( he is only 20) and I quipped that I hadn’t blushed like that since before he was born, another colleague said “‘yeah Kath but you’re shameless ” and we all laughed. But it made me think, very little embarrasses me and I think I have Jack to thank for that . He has said and done things that would probably make most people die of shame. So here are a few snippets 

In Tesco with Jack and amongst the items on the conveyor belt was a razor, all the staff know Jack so the very nice lady commented that Jack was a big boy now that he was shaving . Jack immediately said ” no its for my mothers moustache and hairy legs” . I should have probably mentioned that Jack talks at the top of his voice all the time. 

Another time he asked if he could watch a DVD of Spartacus which contains scenes of graphic violence, I told him no and that it was only for grown ups. I thought no more about it until I found out that Jack had told his teacher ” Mammy and Ian have got DVDS in their bedroom only for grown ups” I mean I tried to explain but made myself sound even more guilty. 

Then there were the two occcasions whilst travelling in the car. The first time we drove past a lady walking with five children and he bellowed out of the window ” oi, Von Traps” . The second occasion he saw a slightly overweight guy jogging and hollared ” run fat boy run” 

He also told someone I didn’t know very well that I wouldn’t get out of the car as I wasn’t wearing a bra. Oh and he told someone that he had been woken up by Mammy’s headboard banging on his bedroom wall. 

So I guess after all this , I really am shameless

The ugly side of SLOS 

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When I began thinking seriously about starting this blog I decided that I had to be completely honest. For those of you who know me in real life you will know that I am a straight talker who doesn’t deal well with ambiguity. However I’ve thought long and hard about this post as it’s a tough one to write and I am sure that for some people it will be tough to read, but here goes ….

Smith Lemli Opitz syndrome ( SLOS) is at times a hideous syndrome. People with SLOS are born with an inbuilt error of cholesterol metabolism. When we first received the diagnosis I didn’t really understand how crucial cholesterol is , for example cholesterol is vital for the production of cortisol which helps us fight infection, it’s also an important factor in the production of seratonin ( the happy hormone) I mean I could go on but it’s probably easier for you to Google SLOS. As it’s a syndrome the severity varies. Some of our wonderful SLOS families have had to watch their children fight and sadly gain their angel wings, my heart breaks every time this happens. It makes me terrified for my own precious children. Jack and Lucy take a raft of medication several times a day , they have lots of blood tests to monitor lots of important things like their kidney and liver function, their cholesterol levels from the artificial cholesterol that they take , iron levels etc. They mostly deal with all of this very well. 

Now don’t get me wrong Jack and Lucy are two of the funniest people that you will ever meet. They have a different way of looking at life and every day Ian and I are crying with laughter. However there is a very different side to them. Both are in secondary mental health services, meaning they see a psychiatrist regularly. Both have the most horrific anxiety which is at times completely disabling, sometimes Lucy can’t leave the house. In addition to the anxiety Jack also has Bi polar disorder, he has the rapid cycle kind so extreme highs and lows in short succession. He also hurts himself, and I mean really hurts himself by thumping himself in the chest and biting his hands and arms. Whilst he is doing this he screams the most horrendous things, I’ve lost count of how many times I’ve been called a c**t , of course I don’t take it personally and he is always sorry after. It just breaks this mammas heart to watch him and be helpless to stop him. When he has calmed down I nurse him like he is a baby again , which of course he still is in so many ways. 

But I am hopeful that one day we will find the right medication, I am hopeful that we can get these demons under control. Until that day we will continue to love him unconditionally, support him and comfort him. Also we have a great support network and I am a tough old bird 😉