I want to be happier than this, I want to be more patient with my lovely children. I am a good person and I love my family but more and more I am snappy, impatient and crabby with the people who I love the most. There is only one thing in this world that can make me stop talking, that can make me be quiet and pull away and that is pain.
I am so tired, really really tired. This pain is too much and I am starting to wonder if i’m a wimp, why can’t I handle this pain. I would be a different person without this pain. I would be a better wife, better mother and better friend. I don’t need to be told I’m good enough or how brave I am, I know that I am trying hard and I respect myself for that. I want to be better though. This is too hard, at times its too hard to smile and pretend I’m not feeling sick with pain, I want my life back. I am not brave, I’m a fraud, i am a master at pretending but my mask is slipping and I am tired. If I concentrate really hard i can cope but this is taking up most of my energy and leaves me less than I used to be.
It makes me so angry to know I’m not entitled to help with the pain other than pills, I don’t want more pills. I want other ways to deal with this i know there is so much pain support out there and I can’t access it due to where I live. It is not fair to have to choose between being in a lot of pain or being in a lot less pain but drowsy and spaced out from painkillers. Where is my happy medium, I was told today at the doctors that in cases like mine they don’t intend for me to be pain free but for it to be ‘livable’. I will give them thier dues this is livable and there are many many people who are just living, just getting by in pain, I am not unique in any way in this.
So I’m rambling again because this distracts me. I underestimated how common it is to live in pain everyday. I hope there is a solution to popping stronger and stronger pills as time goes by. This is not the future I imagined but I’m evolving and maybe I’ll petition for a change in accessibility for pain management services. At least that would be doing something positive.
I’m not alone, I’m lonely. I’m lonely because I am the only person inside my brain. Currently inside my brain there is a lot of overthinking and fear going on. I try to explain what is in there but it’s hard to articulate, it’s a freaking mess in there. I am replaying all the conversations at appointments the last few weeks and figuring out outcomes for future appointments ( there is no need to do this but my brain doesn’t take notice of that). My brain is thinking about all the things other people might be thinking about me and the things I do. I am judging my own actions and ideals by my brains imagined opinions of other people. Some of this is reinforced by people’s behaviour but a lot of it is just my brain telling me I’m doing something wrong.
I’m not being self pitying I promise you, I just want to explain it has been mentioned to me a few times in the last few months that I’m not my usual self, that I’m not as bubbly as I used to be. I think this is because my lovely brain has chosen to have me believe that I need to change, that I am being judged for the decisions I make and that ultimately I am alone.
I spend a lot of time worrying about what other people think of me and the decisions I have made. I worry about the future for myself because of my health and mobility. I worry so much about the kids futures and especially lately with the appointments for Robin and Lewis. These appointment feed my brains penchant for catastrophising ( is that a word) I obsess over how we can help make things better and improve their lives for the future. Then I feel guilty for not being more grateful for the great things in our lives. Then I feel selfish for being upset about the difficulties we face when it could be so much worse. By the end of this I feel exhausted and sad but I get stuck in this cycle.
I want things to change, I want to worry less and live in the moment more. I will make effort to change things now as I am so tired of feeling this way. Again I want to reiterate I don’t write this so you feel sorry for me I promise. I write this because it’s like free therapy. I write because there is a glimmer of hope that maybe someone will read this and not feel alone in how they feel. That it might help someone one day to read that someone else felt alone even when surrounded by people who love them. That it’s okay to be overwhelmed and to hate your brain for choosing to make life feel much harder.
My mind is my own, but we do not see eye to eye lately. I hope one day to be on the same page again but until then at least try to be kinder to me please brain.
Today we went to CAMHS you were observed and talked to. The outcome was that they think your Autistic. They gave us leaflets and websites to look at to understand you better. We have always known this was a possibility. If it’s true that your Autistic like they think you are you should know these labels aren’t all you are. Autistic, Transgender, Dyspraxic, Learning Disabled, you are so much more than all of these labels. You are Robin, charming, funny, beautiful, excitable and precious. Your ours. You are the sum of all your parts but most importantly you are amazing.
Watching you be observed today I looked at you through a strangers eyes, it hurt to see them looking at you searching for signs and clues of why you worry so much. I wanted to tell her all the things about you that make you amazing, but it was important that she saw what makes you different. I love that your different but I hate that you are scared so often aad that the world is confusing for you at times. I hate that we need those labels to get you help at school and to explain your differences but I accept the need for them.
I suppose I write this to try to empty the part of my brain that is trying to work out the jumble of feeling I have. I write this because I can’t tell you yet that none of those labels attached to you make you any less than anyone else because you don’t understand any of this yet . You ask me often why you can’t do the things other children your age do, you ask me why you feel scared and struggle to cope with your feelings. I don’t have an answer for you, all I can tell you is you are brilliant and brave and funny and we will help you anyway we can.
Parenting it’s this magical thing that lots of peole aspire to do well. It’s painted as this glorious, life altering rite of passage. We are supposed to be blessed, grateful and honoured to be have these bundles of perfection and joy given to us. In reality for me at least it’s all those things but with masses upon masses of guilt, fear, mistakes, blind panic and confusion mixed in. I love them but my God they terrify and frustrate me.
Sometimes I feel like I’m walking a tightrope between insanity and ecstacy. I love them so much it hurts but they drive me insane. I sometimes feel being a parent is a bit like being Bipolar. When it’s good it’s amazing and like flying but when it’s bad they reduce you to a sobbing mess. The picture of parenting that is presented by the media is so unreal to me, it serves to make me feel inadequate and a failure. The majority of parents are doing their very best and why is nobody telling them that their best is enough. If your sitting there wondering if your best is good enough I promise you it is. If your kids are warm and clothed have a roof over their heads and you do your very best to ensure they are happy then I award you an A*. Look yourself in the eye and say I want the best for my children and that is good enough.
Yesterday I didn’t feel good enough, i tried my best but I felt I couldn’t control their behaviour and that people were judging me and I was out of my depth. I came home and cried, i cried because I was embarrassed that they had misbehaved in front of other people and I cried because I felt like a failure. Today I woke up and I remembered how hard i tried and I decided I didn’t fail. i
I persevered, I didn’t give up and bring them home early, I know I was judged by others but I told myself I did my best. My best is good enough and it was good enough yesterday. It is only by the standards we set ourselves that we feel like we fail. So if your beating yourself up and you find yourself lacking ask yourself did you try your best because if you did then you cannot have failed.
I always wanted children, I wanted 10 of them at least. Yes I set about this plan a little earlier than most and with a blind confidence that I would excell at motherhood. I laugh at my naivety, I literally laugh out loud at myself. I’m not a bad parent but I’m not a great one like I envisaged either. I’m not feeling sorry for myself or looking for someone to tell me I am a great parent. Honestly I am absolutely over the moon that I am good enough. Because in the world we live in Education, Economic position and home ownership etc is placed so far above what is important to me. There is nothing wrong with aspiration and wanting the best but for me manners, caring, compassion and love are so much more important. I want my children to be financially safe and all the other things that make life easier don’t get me wrong. But more than anything I want them to be kind. They are kind, compassionate and loving, they are also difficult,frustrating and at times annoying. Lets be honest all kids are.
So in the last week there has been a lot ofmedia attention given to two stories about ‘transgender children’. One child has been removed from their mothers care and another child’s father has had an article printed in the Daily Mail about his anger at his ex wife allegedly forcing their child to dress in female clothes. When you read these stories please remember they are one point of view. They do not tell you the full story.
In essence what this has done is led me to fear even more for my family and our child. Robin came to us with questions and asked to be able to dress as a girl. We sought advice and were told to allow this and let it play out. That was 8 months ago and Robin still dresses full time in female clothes and tells us he is a girl not a boy. Who knows at this age if this is permanent but what I do know is that because of two stories given so much media attention every parent who’s child feels they want to dress in a different gender clothing is more fearful of what others are thinking.
We fight for our children’s right to feel happy and comfortable but we are portrayed as people who are forcing a child to behave and dress in a way they are not choosing. The media is feeding people’s fears of anything different from the perceived norm. I wish I could understand what people are so afraid of.
The charity Mermaids supports parents to help their children through this journey. Today’s article accuses Mermaids of bullying and interfering, from all I have seen all they have done is SUPPORT. Without Mermaids many parents would be alone, scared and confused about how to support their children. I am disappointed and saddened and in all honesty I’m scared. I’m scared that people will never understand why we are supporting Robin’s wishes and I’m scared that all it takes is one judge or newspaper to take a view and try destroy a family or a charity.
So all this rambling has a point I promise, please please remember there are multiple sides to these stories, please don’t assume the one you are reading has all the facts. I’m not pretending I have all the facts but I know my child and I have met children like Robin and they deserve better than the media portrayal that their gender issues are getting.
‘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.