‘Stubborn’ is a word some people would use to describe me, I can be my own worst enemy. When I decide I’m doing something I’m doing it now not later. I’m impulsive at times and I’m impatient always. Being capable and able to do everything is important to me, I want my independence and to look after myself. It has become slowly more and more apparent that i will have to give up some of my stubborn ways. I need more help than im happy to accept and i am struggling more than i would like to admit most days and honestly it sucks.
It’s harder than i ever thought it would be to accept my limitations and any new struggle highlights the kind of future i may have.
Having a chronic illness has taken my career away, my confidence, my independence and my self worth but it has given me insight, determination and stubborness. It doesn’t tip the scales, I haven’t gained more than I have lost. I will try to see the good in all of it and I’m sure I will eventually. I’m not bitter not at all, I’m just sad. I love my family and i love my work, i dont have the energy for them both a lot of the time lately. There are big and small things I want to do and it doesn’t always feel fair that I can’t or don’t feel able to do them.
Sometimes I feel like pain runs my life it’s almost as though it defines me. It decides more of my life than I do and it decides where I go how much I can do. It’s a control freak, a master of manipulation it’s my worst enemy.
So I’m going to give in a little and accept some help, I’ll listen when I’m told I’m doing too much and I’ll try to stop being so stubborn. Instead of running backwards and forwards trying to prove I’m contributing to society I will try to enjoy my family more. It’s not giving up or giving in it’s more like accepting changes and finding peace with that.
So I have a daughter now, that’s what she tells me anyway. I am in awe of how an 8 year old can know so much about who she is, I’m 29 and I still have no idea who I really am.
I won’t pretend we welcomed this news with open arms, I was scared, scratch that I am scared. Robin is beautiful and brave but I’m not sure the world is ready for children like Robin yet. Gender is a construct in society but the majority of people associate with the gender they are born and act and dress accordingly. I have met with children younger and older than Robin who don’t conform to the gender expectations and I can say they all looked happy and healthy and well adjusted, so why is stepping outside of your birth gender so difficult? So what if they want to dress like an opposite gender, so what if they may change their minds later on. Are they hurting anyone? Are they?
I feel like every time I leave the house with Robin I’m on high alert waiting for someone to stare or say something, they don’t, most people assume Robin is a girl and don’t think twice about it. So why am I poised constantly ready to fight her corner and so worried about what other people will think.
So I’m going to take a different approach, focus on what’s important. As long as my children are happy and safe that is what I will focus on. I will try to stem the tide of fear that overwhelms me at times and love and let live. Because honestly there are worse things that could happen.
This weekend I attended a residential weekend with Robin hosted by Mermaids UK who support children and young people who suffer from gender identity issues and their families. I was terrified if i’m honest, in the last 6 months we went from having three boys to two boys and Robin who tells us he is a girl. At first it was wanting to wear girls clothes and then shortly after ‘i’m a girl’. Our minds were blown, how can you at 8 years old suddenly tell your parents and your family you feel like a girl, I thought this happened to teenagers or adults not to little children. I have to admit at first I thought typical Robin he has always been different and he is probably just trying this ‘girl’ thing out. 6 months later I am wondering how long something has to be happeneing before we can say this isn’t a phase. How long do I worry about other peoples feelings and judgements before I feel confident to support Robin fully?
This weekend I met children who from 2 years of age have been adamant they are not the gender they were born as and I met children and teenagers who kept it to themselves only telling someone at crisis point how they really felt. I met parents who had been on this road a short time like us and parents who had been on it for many years. It was refreshing and comfortable to not feel self conscious or worried about people looking at Robin and seeing a boy in a dress. It also made me realise how stressed and uncomfortable i feel most of the time out of that environment, not because of Robin but because of other peoples reactions and how they feel about Robin. I watched my 8 year old this weekend run around in a princess dress wearing pink fluffy fairy wings spinning, dancing and beaming, she looked like a little girl having fun with other little girls all dressed up feeling pretty and being a carefree child. She didn’t look like a boy pretending to be a girl she just looked like a girl. I guess it was a defining moment for me, all those questions I have had running round on repeat for the last 6 months didn’t seem to matter as much anymore. So what if she changes her mind, so what if this is just a phase, so what if not everybody thinks its ok to let Robin explore her gender. What mattered was how bloody happy she looked, thats not to say she hasn’t been happy as a boy she has.
I got to talk to teenagers this weekend and adults who have or who are transitioning into a different gender to the one they were born as. The teenagers amazed me, they were so willing to answer questions and give a glimpse into the future that may be out there for our child. They talked about being scared to tell anyone how they felt till late teenage years or adulthood and how they respect the younger children that are saying it so young now, how they wished they had been able to do that. How important the parental and family support has been, not just important in fact VITAL. They also talked a lot about the mental health issues that they had due to being unable to live the gender they felt they were, it was a lot to take in in one weekend. I was shocked at the names they have been called like’freak’ and ‘monster’ because we are afraid of something different to the acceptable gender sterotypes currently in place. That’s scary and saddening all at the same time to me. Is it any wonder when a parent is told by their child they feel trapped in the wrong body that our first instinct is to be afraid, afraid of our children being attacked, afraid of how vunerable they are out in a world which only celebrates difference if its appealing or acceptable to it. I don’t want to be afraid for my child but i also don’t want to force my child to pretend to be something or someone they arent.
So what do i do?
So i came home and i thought about all of the last 6 months and we talked about how we feel and how we are supporting all of our children with this. It hasn’t been easy for Elliot and Lewis to understand this change but over the last month we have seen acceptance and understanding from both of them. When it comes down to it I think it’s about that little old four letter word love. When you love somene you want them to be happy and although it might take a while to understand what they need and want you get there eventually. I realise now when you strip it all back even when it seems like someone is being unsupportive its still about love, they are scared because they love Robin. It doesnt mean they wont in the end support whatever choice she makes and it doesn’t mean they have to agree with how we as a family choose to go down this road, they love Robin and I trust that in the end that will be enough.
Catheters………. I knew it was coming but it didn’t seem real till now. This feels like a line has been crossed, I have never felt more disabled than i do right now. It feels so big even though I know it isn’t in the grand scheme of things. I can’t seem to get past the idea that at 29 years old I am in the position of having to put a tube into my urethra and empty my bladder 3 – 5 times a day for the rest of my life. That may be too much information but screw it not many people actually read this.
So this is Cathy the catheter, my new acquaintance I’m learning to get used to taking her everywhere with me and I loathe and love her all at the same time. She is painful and annoying to use but gives relief at the same time.
So my bladder decided that it doesn’t want to do its job. I mean come on you had one job and you can’t even be bothered to do that properly. You suck bladder, you suck big time!!! I can tell you getting a huge box of medical supplies delivered to your house every month can make you feel crappy. So this is my moan it’s out of my head and on this page and I’ll get on with it but know this bladder you have wronged me for the last time. Keep up with your laziness or God forbid decide to pull anymore crap on me and I’ll have something to say.
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.
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.
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.
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?
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 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.
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.
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’