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 

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​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 😉

Ghost shite 

Most of the Carers that I speak to are to some extent obsessed with poo ( true story) either because they spend a lot of time cleaning it up, measuring out the exact dose of laxatives because too much or too little is an absolute disaster, they examine poo daily looking for signs of change or maybe because the person that they care for is a little bowel obsessed. I will admit that my life is a combination of the afore mentioned. 

We have had many awful experiences with poo and the kids. Recently I returned from the kitchen to the sitting room to find the dog ( who isn’t the brightest bless her) barking at a strange object on the sitting room floor. I didn’t have my glasses on so squinted at the mystery object as a crept closer, yep it was a human shit!!! Lucy was standing on the sofa pointing at it and asking me to take a photograph and put it on ” spacebook” whilst Jack hid under the dinning room table. Of course they all denied responsibility. 

We have also had days when there has been a trail from the sitting room to the downstairs loo and it’s like a scene from Watership down ( tiny pellets every where)

One of my favourite stories is a few years old now. Jack was in a well known high street store with his wonderful support worker Jukes ( Julia) as they were browsing Jukes became aware that two members of staff were standing very close to them and ranting about how disgusting it was, a confused Jukes turned around to be confronted by two women armed with a piece of cardboard, antibacterial spray, gags made out of tea towels and one had a load of kitchen roll wrapped around her hand, it looked like a boxing glove apparently. Jukes looked at the object of their disgust which was of course a humongous turd. A horrified Jukes ushered Jack out of the shop whilst agreeing with the staff that it was awful, Jack had remained silent throughout the whole exchange. As they get back to the car Jack said ” sorry Jukes” she asked him what for and he replied ” for dropping a poo out of my trousers” . I still feel awful every time I go into that shop.