Category Archives: Uncategorized

Your taking the Piss right? 

So I normally write about the kids, but I’m going to ramble about my latest hospital visits this time. 

In a week I had an Esmolol Challenge to test for reactions in taking beta blockers, a gastroscopy and a Cystoscopy. I had positive results from both of the first two tests but when it came to the Cystoscopy I have to admit I came out devastated. 

I am 28 years old, the last thing I wanted to hear was that from now on I will need to self catheterise due to the muscles in my bladder failing to work properly. No medication or surgery will fix this.  This is another wonderful side effect of Ehlers Danlos Syndrome Type 3 a genetic collagen defect I was born with. If I’m honest I felt like I have been kicked while I am down this week, life is stressful and I am feeling depressed about my health in a way I never have before. I want to keep a positive attitude but excuse my bad language. Why the bloody hell should I anymore? My body is behaving much older than my mind and I feel betrayed. 


Betrayed by my joints, betrayed by my heart rate but mostly recently betrayed by my bladder. Not to be brutal or disgusting but I don’t want to put a plastic tube into my urethra up into my bladder 3 times a day for the foreseeable future. This will eventually lead to a permanent catheter a long way down the road.  Do you want to know what the worst part is? I’ll tell you. The doctors suspect I passed this condition to two of our children, so this could be their future too. I have mentioned I feel guilty before but this goes way beyond that feeling. I want a rewind button, I want to not have possibly given them this future. I wouldn’t change having them but I would change my guilty feelings. It’s like a weight that’s getting to heavy to bear. There comes a time when you need to share this kind of burden so that’s what I’m doing now. 


So forgive me while I sulk for a few days or weeks, I’ll get used to the new changes for my health and until then I just need to be sad and stamp my feet like a toddler and scream it’s not fair. If im snappy or I cancel plans with you don’t think it’s you because honestly everything feels so hard to do right now and I promise I am doing my best. Above all I love you all and I’m grateful for having you in my life. 

Never again ……..

How many times have you said ‘never again’, yesterday I swore I would never put Robin through another eye surgery again. I have never felt like a more ineffective parent before. Having you child come back from surgery and scream and writhe on your lap begging you to let go of his hands so he can rub his newly operated on eye. I felt impotent and out of my depth, being headbutted and kicked and screamed at for an hour is hard and it hurts emotionally as much as it does physically. I feel as though i have done 10 rounds in a boxing ring. 

I believe we make these decisions with the best intentions for our children but parenting comes with levels of self doubt that I never expected. We both think seriously before making these decisions but it doesn’t make the experience of putting your child through these situations any easier. I sat last week on some steps before a meeting and cried, I cried because I am tired of making these kinds of decisions, in tired of nothing being simple and im tired of wondering what’s coming around the corner. 

So Robin is lying here next to me asleep and I look at him and hope he knows why we make the decisions we make and that it’s with his best interests and so so much love that we do choose to go ahead with surgeries. Parenting is hard and I never assumed it would be easy but my god I didn’t know it would hurt so much aswell. I look at Robin and I know I have never been as brave as he is and I see how kind and caring Elliot has been towards him today and I couldn’t be prouder. 

Life’s a Bitch isn’t it.

Yeah i known the title says it all, this is not going to be a positive blog post.  I’m going to be complaining a lot for the next few minutes so if your having a really good day don’t let me spoil it. Close the page and don’t read on. sorry

This week we recieved results from the genetic study that Robin and Lewis have been in for over 3 years, they found no diagnosis for the boys during the study and have offered them a place on a more indepth study called the 100,000 Genomes Project. They did find a gene that commonly causes deafness in both of the boys and also in mine and Ant’s genes. Since none of us have an issues with hearing i guess it’s just an incidental finding but it also worries me that its another example of my crappy genes. I hoped the boys wouldn’t have to worry about anymore ‘dodgy’ genes to be passing on if they ever decide to have their own children.  As it stands we have been advised that they should consult a geneticist before any of them think about trying to have children, Elliot is 10 on Tuesday and he said to me yesterday he really wants kids when he is older. At some point I have to have a conversation with him that I don’t want to have. I don’t want to tell him he needs to be much more careful than other teenage boys when the time comes for him to do that ‘stuff’. I should’t even need to be thinking about how to have this conversation yet or how to make him understand the seriousness of what could happen if he had an unplanned pregnancy. What if he meets a wonderful partner and the possibility of not being able to have their own children is a big deal for them. What if the gene lottery is even more unfair and they have to suffer heartbreak and loss like we did with Connor, that stuff changes a person.

So here I am back to angry about what has already happened to us and what is yet to happen. I know this is a phase and as they say’this too shall pass’ but screw it I’m pissed about it all right now. I want to have a physical person to blame, to scream and shout at and maybe just maybe even kick them a little, well a lot. I sit and write this stuff because it builds up inside me if i don’t and I want to be happy. I want to be worrying about normal mum stuff not that and then the extra special needs mum stuff. That might be selfish but It’s tiring and emotionally hard. I don’t want to talk to them about how they could have disabled children, not because i don’t believe they would make brilliant parents to children with additional needs i just wish i could save them the pain and the wrry i see all the time. Don’t get me wrong i know it’s inevitable that i have to talk about it i just wish i didn’t have too. Then on the other hand i feel so so guilty that i am struggling with this when other parents wont ever get to see their children have babies and they would love to have the worries I have. Is it only because i’m female that I overthink and worry about being worried.

After reading all that i don’t want you to think im a terrible person it’s not that i’m not grateful,  am so grateful for my boys. I think a stillbirth and 3 miscarraiges will do that to a person, it makes you realise what you might not have had. I know i have so much but at the same time i feel like i did something wrong in a past life. The boys don’t deserve to have to worry about wether they can have healthy children on top of the fact that they have their own physical and educational difficulties. I keep thinking about Karma and all that jazz, it doesnt add up.  My brain flip flops between feeling sad that we have had a lot of bad luck and guilty because to some people have it worse. Aren’t brains a beatiful and cruel organ eh?

Image result for brain why do you hate me

 

Not Cerebral Palsy……….

I think its fair to say being told your child was misdiagnosed is hard, but again we are in the no mans land of undiagnosed. Another geneticist appointment may shed more light but who knows. When i went to Lewis’s peadiatrician appointment last week and she told me she didn’t feel Lewis had been diagnosed correctly i was not surpised, the diagnosis he had at 6 months old of Cerebral Palsy hasn’t sat right with us as parents for a while and other members of the family have felt the same. It was a diagnosis that seemed right for him at 6 months old when he was a stiff joined, developmentally delayed, tiny little boy with moderate feeding difficulties and a neonatal history that included seizures, being on an ventilator and brain damage. Last week his peadiatrician explained she had seen this before when a baby is born with stiff joints and has all the hallmarks of a child with Cerebral Palsy but then as the child gets older they get the more loose in their joints and eventually too loose in their joints. After she examined Lewis she informed me she was referring him to a geneticist to be tested for a connective tissue disorder called Ehlers Danlos Syndrome(EDS), a genetic abnormailty i myself was diagnosed with over a year ago. She felt that all of his medical problems could be explained by Ehlers Danlos Syndrome. Patients with EDS can have a range of medical conditions and as there is more than one type of EDS you can imagine the list is a long one. For Lewis his food allergies, severe gastric reflux, eye problems and his digestive system problems could all be symptoms of EDS.
When i was diagnosed with Ehlers Danlos Syndrome last february it was a relief to understand what was wrong with me and it was distressing to read that there is very little that could be done for me. I will have chronic joint pain and dislocations, fatigue, autonomic dysfunction, bowel and bladder issues for the rest of my life. The idea that Lewis has this is scary and knowing if it is EDS then it is down to my faulty genes. I gave it to him and thats a hard fact to swallow, so now i vasiliate between hoping he does get diagnosed with EDS because then we would finally have an answer to his undiagnosed genetic abnomality diagnosis and hoping it is something else so it wouldn’t be my fault. If we get an answer for Lewis then it is highly likely we will get one for Robin as it is believed they have the same condition but as yet the geneticist havent been able to find a condition that fits their symptoms. It seems now they may have found an answer and that is good and bad news all at the same time for us.
I want an answer, i want a name for this thing that has run our lives with surgeries, hospital appointments, gp appointments, countless days abscence from school, physio appointments, speech therapy, opticians, eye specialists, occupational therapy the list goes on and on. I don’t mean to sound like im complaining, im really not, im explaining in my own way because what has really run our lives since Robin and Lewis were born is one small word that packs a punch. FEAR.

fear

Fear thats what has been driving us and drowing us all at the same time. This diagnosis comes with fear but it also comes with relief, no more wondering what they have, no more wondering what is coming. For all the crap that would come with an EDS diagnosis we know where we are with EDS, i have it and i have always had it. They will certainly not have an easy life but we will know what is coming and what we can do to ease the symptoms as much as we can. The idea of spending anymore time in fear of the unknown genetic conditions it could be seems a much worse prospect than getting a disgnosis of a lifelong condition that i understand how to treat and live with.
At the end of the day it could be something else entirely that they have, it feels wrong to be hoping with half my heart that they have the condition that i understand because we could deal with that and have been doing it for a long time now. The other half of my heart selfishly wants it to be something else because then i could blame something other than myself.
A mother wants to look at her child and see some reflection of themselves, notice how thier child looks, sounds or acts like them. I don’t want to be the one who gave them this, to know every surgery, all those apointments, and all that could be yet to come for them is all down to one stupid gene mutation i passed on and to add insult to that it was 50/50 that they would get the gene. I know it doesn’t make me a bad mother, i didnt know this could happen and i would do anthing to take that gene away from them. I’m not going to dwell on this or spend my life blaming myself but it’s ok that right now i feel utterly shit about it.

genes

 

 

Pain…….. 

There are times like tonight when i cannot begin to describe the pain I am feeling. The throbbing pain from my hips to my knees is almost unbearable, I can’t sleep it hurts to move, it hurts to not move. I am not looking for sympathy in any way as it won’t help. I just wish sometimes I could explain what the white hot burning pain feels like and how never ending it can feel. I am lucky I know that, I can take strong enough pain killers to take the edge off this pain, I know others who don’t even get that relief. I feel like pain is a part of who I am and I wish it wasn’t. I am never pain free but there are times like now that it seems like it is too much to take and there are no words for how this feels. I probably talk about my pain too much, when something is there all day everyday it becomes such a part of your life you don’t even realise it’s taking over. Pain makes you moody, it makes you tired, it stops you enjoying your family and friends the way you should. 

  
I have read about people with chronic pain who push everyone away because of their moods and I never really understood it. Never understood how you could when you need people the most push them away. It’s clearer to me now, when it really hurts you don’t want to talk or laugh or be awake, everything just feels so hard and takes up so much of the energy you have left. I understand now how it happens, I know I am lucky I have so many people in my life. Pain slowly or quickly creeps it’s way into every part of your life, it quietly erodes your confidence, your happiness and your relationships if you don’t get help. It’s easy to say this but hard to do. 

Pain has changed me in some ways, it changed my career path, my mobility, my future and my family life. So I’m going to change all of these things to work around pain. I know pain isn’t going to leave so I’ll work around it and on nights like this I will cry over the unfairness of it and then I will carry on. I’m lucky, I know this because I can see past pain and while this may not always be true for now it is enough.  

 
I see and probably share pictures with ‘inspirational’ quotes about pain making you stronger or it ‘making you who you are today’. For the most part on a lot of days I believe in these things, but tonight at 1:08 am those quotes piss me off. How can this be character building or make me a stronger person when I have never felt so weak and helpless in my life. I know I will wake up and believe things will be better but in the dead of the night it’s hard to see the light of tomorrow.  

That’s enough waffling on feeling sorry for myself now. This writing is very therapeutic for me so if I had be bored you to sleep with my ramblings I apologise. 

Parent evening meltdowns and being ENOUGH.

While other parents come away from parent evening talking about academics and how clever their children are I come away proud that we have hard working children who try their best.  I walk away hoping we are doing all we can to teach life skills so our boys have the opportunities to be independant and as successful as they can be. I used to think being clever was important, I used to think that my children would be gently nudged towards college and university. Then my children were born and I saw the reality of being a parent and then the added complexity of having children who don’t and can’t learn at the speed and intensity of the ‘average’ or neurotypical child. I couldn’t care less nowadays about whether they get GCSEs or A levels, all I want is for them to be happy and healthy and we have worked damn hard to be able to say they are all happy and moderately healthy.

We can’t have a generation after generation of robot children, we need the free thinkers and the creative children.  We need a sytem that celebrates this not pushes each child to fit into the curriculum box.

So now i sit and listen to my son saying he doesn’t understand what his teacher wants him to do in lessons and i hear his anxiety about getting detentions for not completing work when he didnt understand what was expected of him in the lesson. I wonder if the education system will ever be able to be flexible enough for children like him. I have two children who I am confident will go out into the world and while they may have not achieved academic success i know they will make a life and achieve things and be happy. I have one child who in all probability will go out into the world and find it is a confusing and difficult world to navigate and he will not find it as easy to be happy and social. As a parent you want everything for your child and want them to go into the world and experience all sorts of things, I want this for all of my children but with Robin I know that for him this will be hard.

 

Robin is anxious a lot of the time, he is 8 years old and he worries more than a lot of adults, he works hard and still feels the weight of knowing he is not doing what the teacher expects of him. I hate more than anything the unfairness of that. The knowledge that he feels already that he isnt good enough, that his inability to fulfill the curriculums expectations and understand what is expected of him in lessons is already having an effect on how he feels about himself. In truth he is a joy, he is funny even more so when its unintentional, he is honest, he is brave , he is inquisitive and he is caring what more could a person need to be. He doesn’t need to be clever or keep up with his peers he needs to be secure and happy and loved but that doesn’t matter to the education system. Having the words ‘low self esteem’ and ‘learning disabled’ attached to you from such a young age doesn’t fill you with confidence that his life will be as easy as some childrens. As much as we need these words to get support and the correct input for our children I have to wonder how much damage these labels can do when used to decide a child is limited and therefore it is acceptable not to try to get their best capabilities from them.Does anyone else other than his family care that by trying to push him to the required level he is having his self esteem damaged, he is already beginning to feel he isnt good enough and I can tell you he is more than good enough.

How do I teach my child that to me it really isn’t important how well he academically achieves and if he doesn’t hit targets as fast as an archaic educational sytem expects him to that it wont change how much I love and admire him. How do I teach him that being kind and brave and working hard at everything is enough. The whole system is set up to test, examine and grade a child on their ability to remember and put into practice things that on the most part they can get by without. Maybe getting by isn’t what most parents want for their children but it is enough and for some it is everything.  I want to tell him not to worry about the school work but its still there and he still has to take part in the education system if only for the social skills he gains.


I will teach my children to love, be kind and spread happiness because in all honesty that is so much more important than academics. I hope that against the negativity they may sometimes feel from not achieving as expected that the world will see that being good and kind is enough.

‘It is more important to be kind than clever’

Acceptance is so very very far from me!

A huge amount of my mind is taken over by not being able to accept that i dont have and may never have answers to my questions and fears. I know that in the grand scheme of things i am so very lucky to have children who are considered mildly disabled but honestly i dont know how to accept that they will always have some form of disability. I want to know whats wrong and find solutions that probably dont exist and make everything easier for them.

acceptance

I dont want to spend 90 percent of my brain power in worrying and the other 10 percent being angry that other people dont ‘get’ me. I cant change who i am and i cant change what has happened but all that has happened has made me fearful, I fear for my kids for what they may suffer at the hands of all the people out there who wont be kind. I fear that after losing one child i could never contemplate facing a day without my boys and that losing them preys on my mind more than it should. But above all my children are fantastic and without them i would have learnt nothing worth knowing,I love them and just want the best for them.  Its the fighting for all the right help and feeling how other people doubt or judge how we do things that drives me to distraction. Its great that others can sit up on their high horses and judge how i try to run my life which lets be honest is slightly more complicated than average families life, i sometimes feel like they honestly think they know better than me so maybe they should try it and ill go have a nice rest for a few weeks. Deep down it isnt the many appointments with the 8 doctors and the 3 different therapists that cause the problems or the medications or even the worry about their futures that really gets me down its the constant looks and whispers and judgements from other people that i cant accept, i dont want you to walk a mile in my shoes i want you to f**k off and let me do my best. I have watched Lewis at deaths door, I have watched him be anesthatised on at least 6 occasions in 18 months i have sat in hospital with him on many occasions and worried about his future, i have watched Robin be teased for looking a little bit different and i have watched him take every little thing he has to do like taking medication, wear a patch to stop slobbering and wee through a funnel in his stride. When you have done this come back and tell me how im doing it wrong or maybe you will see how im doing the best i can instead. Im talking about doctors who talk to you like your an imbecile who couldnt possible have an insight into what your own child feels and needs, while i bow down to your superior nonsense i know my child best, people in the street and in supermarkets who think you should learn to control your children when they arent happy and decide to have a scream, i am sorry my childs vocal chords offend you but give him a break its just a bad day and in the grand scheme of things while your shopping trip i accept has been rudely monopolised by my sons lungs its only for a short time.

screaming

And yes im talking about well meaning people who really honestly dont mean to offend but feel the need to inform me that in thier day they did things differently, while im sure that its true it doesnt help. Lastly for those who know me well and utter sentences that without ever meaning to cut me to the core i dont blame you for a second as its my own insecurities that put me down and i accept this im just not very good at it obviously. 

I wish i didnt feel like someone else could do a better job, maybe fight a little harder and shout a little louder for the boys for the things they need and regardless of some people think they do need these things for a better and happier future im not feeling sorry for myself or looking for an ego boost if i already feel this way at times i really dont need anyones elses help in making me feel like im doing this wrong.

So im making a little pledge to myself and the key is in Acceptance, i will accept that i am who i am. I will accept that nothing much will change in my life but i will be happier in the knowledge that i accept that i am doing my best and that no one can judge me. So with this one word Acceptance that feels so very, very far away from me i will be happier it might take me a while to reach Acceptance as its still a way of but i think i might get there.