Positivity Isn’t Always the Answer.

I wouldn’t say I put on a brave face, but I like to think I keep a positive attitude, but again lately the mask is slipping. Another surgery in 8 days, more medication added to my daily routine. I am tired, I’m tired of operations, medications, appointments and keeping up a positive attitude. This next operation will be the 4th in less than a year and I’m tired of them and I’m tired of feeling the way I do. My life feels like week after week of sorting out mine and the kid’s medications, going to mine and the kid’s appointments, worrying about what is going on with mine and the kid’s bodies, the pain I and Robyn are in. This sucks.

There is nothing I can do to change any of this, and I know that but that doesn’t mean I can’t be tired of it all. It’s not like I don’t have a great life, I do. I have 3 amazing children and a partner who tells me every day that he loves me, I have amazing friends who are always there to listen. I don’t need more than that, but I do need less of the medical things. I would do anything for the kids, there is nothing that I wouldn’t do to help them and to try the medical problems they have from disrupting their childhood. I think having the same condition as them mean I know where they are heading, I know what might be coming for them. All the pain I have every single day could be their future and I hate knowing that more than anything in the world.

I spend a lot of time trying to be positive and actively trying to make the best of this situation for me and the kids but I’m really tired. The pain disturbs my sleep every night and getting out of bed in the morning is harder than you can imagine. I just need a break, mostly from my brain and the constant worries and planning of life around all the appointments. I talk to my friends a lot about the kids and my health and then spend a lot of time feeling bad for moaning at them and not having more interesting things to talk about. They are fantastic friends and listen and advise and I couldn’t be more grateful, but I wish I had other things to talk about, but all that stuff is my life. I am very aware that here I am complaining again but I have to get this feeling out or I will go crazy.

So, what can I do? I have no idea at the moment, September is a month of lots of changes the kids start a new year at school. Robyn started high school which caused her and me a lot of anxiety. She has already been bullied for her speech on her second day, her eyesight is declining all the time and she is having more and more problems with blurry vision. The pain in her legs is getting worse and her gastric reflux is causing her more pain her chest every day and there is nothing I can do. I try to keep positive for her and tell her I understand but all I can do is give her pain relief and worry about how much worse this could get for her. Can you imagine starting high school as a transgender child with eyes that are wobbling and turning in all the time, with a speech impediment and learning disabilities. High school is hard enough without all of that, I just want to take it all away for her. I’m her mother it’s my job to fix things for her but I can’t.

When you have children, you expect to worry about them, you expect it to be hard at times. I never expected the guilt I feel from not being able to make things better for them, I never expected to have to worry so much about their future. They may never pass exams or find it easy to get a job. Robyn will always find it hard to understand the world and the expectations of her from society. Her anxiety will make life so much harder for her and I can’t fix it. I am raising good, kind children but I worry that won’t be enough to make it easy to survive in the adult world. Positivity isn’t always enough; hope isn’t always going to be enough. So, in all honesty I don’t know where I’m going from here. I’ll keep trying to do whatever I can to make life as easy as I can for them all because that’s the best I can do. I’m not sure it’s going to be enough but I’m going to keep trying to have positivity even when I’m tired and I’m not sure if what I’m doing is going to help.

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High School Heebejeebes!!!!

I haven’t been getting much sleep lately, I think I am anxious about the coming return to school for the kids. Robyn is extremely nervous about high school, it’s a big change for her and she feels like she will struggle. The high school have made lots of accommodations for her like a lift pass so she doesn’t have to walk up and down the many, many stairs in the school and a pass for her to leave lessons 5 minutes before the classes change over so she can have more time to get to her next class without the corridors being full of other children.

I think it will be fine once she has got used to the swing of things but going up to high school is scary enough without being a disabled transgender child who is worried about people bullying her for funny eyes as she calls them, her speech, her learning disability or the fact that she is transgender. She is braver than I will ever be, I can’t pretend I’m not scared for her though. I reassure her daily that it will be ok and her confidence has been boosted a little by the fact her friend who is also transgender is starting high school with her.

Elliot is going into year 9 and is working very hard, he puts in a lot of effort at school and is really I interested in his science lessons. He doesn’t let his dyslexia hold him back from his dream to be a paleontologist. His knowledge of dinosaurs amazes me and he has shown a lot of maturity in his emotional intelligence. He has told Robyn he will look after her in high school and if anyone is mean to her he will protect her. I couldn’t be prouder of him.

Lewis is still in primary school going into year 4, he is nervous about his new class as he is every year but I think he will soon settle in. He has made lots of friends and his school reports tell me he is a happy, friendly, superbly well behaved little boy. He is such a loving child and he is always looking for hugs and cuddles which I am happy to oblige as they are growing up so fast who knows how long I have until he doesnt want to lie in bed cuddling watching movies anymore.

Times like this when life is busy like this week with 4 hospital appointments in 4 days taking a little time out to cuddle and chat with Lewis is exactly what I need to remind me my life isn’t all appointments, medications, school meetings and stress. Life is so much more than that but it’s hard to remember that at times. I have loved having so much time with the kids since its the summer holidays. We have lots more fun plans to come and that’s what I’m focusing on for the next few weeks.

Feeling Resentful!

There is a saying I have seen many times it goes like this, ‘The thing about pain it demands to be felt’, it’s so, so painfully true. In the last few days I have gritted my teeth, lost my patience and cried when no one was around. There are times when the pain can be hard and then there are times like this, times when this pain makes me sad and tired. It’s so all consuming, so overwhelming that it’s hard to focus on anything else for any length of time.

I want to scream, to blame someone and have someone take it all away. It makes me grumpy and I don’t like who it turns me into. I write poems about how much I hate it and I try to distract myself with anything and everything I can think of. I’m just so angry right now I’m sitting here in too much pain to sleep just feeling the anger build up inside me. This isn’t who I want to be, I believe I’m a nice person for the most part but I don’t feel like being nice right now. I feel like shouting at everyone, smashing things and just generally having a huge tantrum.

Sadly, I’m not a child and that sort of behaviour isn’t acceptable for a 31-year-old mother of three who is supposed to be responsible and mature. I just don’t want to be the person I’m being right now, I just want to be less grumpy and angry. I keep trying to remind myself that this has happened before on many occasions and it won’t last forever it just feels like it will. So, I guess I’m rambling here as a distraction and because putting it down on paper (well screen) is in some way a relief.

So yes, the thing about pain is it demands to be felt I just wish I wasn’t feeling it so much right now!

This pain is unbearable, dragging me down

Drowning me slowly, sucking the life out of me

Exhausted bitter and sad I feel less

Less of a person, less useful, just less

Pain overwhelms

It steals, Its spreads its long dark fingers into every inch of your life

It snakes its way into you constricting everything taking away your breath

Its insidious and I’m resentful

Resentful of its dominance, Its vice like grip on my body

Just resentful.

3 Years Later………………

Robyn has been living as a girl for 3 years now and for a long time I have rarely thought about her being anatomically male, it crops up now and then and surprises me. She is about to finish primary school and start high school, this is what worries me most. I worry about her adjusting to high school but more than that I worry about how she will be treated because she is transgender. So now I am spending more and more time thinking and worrying. I wish I could switch off the part of my brain that overthinks everything, to be able to just let life happen and deal with it as I go. Unfortunately I have the type of brain that worries and tries to plan for every scenario that I can think of.

I want to protect her from every possible problem that may happen, being transgender is not the easiest life to live, I wish it was but society has still not come to easily accept that people can be born transgender. She is consistently open, honest and brave about who she is and that makes me proud every day. The challenges she is facing without even considering her being transgender, her speech problems, her eye problems, her learning disability and her medical issues already make her life more difficult than the average child. Being transgender adds a whole new kind of difficulty to life and all of it every last bit is caused by society and its refusal to accept that being transgender is not a choice.

I realise now that just because we understand and support her doesn’t mean everyone else will and that I will never be able to change that for her. I have to understand that it’s okay, it’s okay if people find it hard to accept who she is because she is happy regardless. I promise myself on a regular basis that I will worry less and focus on just letting life happen, I realise that will never happen and that too is okay. I know I have spent too much time focusing on the feeling of being judged for allowing Robyn to be who she knows she is. I intend to focus more on not letting that feeling affect how I support Robyn. I have hesitated over and over again in certain ways I could support her in some situations, I don’t speak up as loudly as I should for her. I fear confrontation so often that I have not defended her when I should have.

If she can show the strength to live her true self then I can be braver in the situations I would usually shy away from. I should learn from her because she is so much braver than I have been. So, when she goes off to high school I will remind myself that all of her life so far she has shown me she is stronger than I have given her credit for. That worrying about situations that haven’t happened and may never happen won’t change anything, she will handle high school and whatever comes with that with the same strength she has always shown. I will have faith that I will deal with whatever comes with the same attitude she has. I will not be scared to call her my daughter to anyone and everyone, and I will not shy away from showing how proud I am of her because I’m scared of confrontation. My children are everything to me. its my job to stand up for them and Robyn deserves every person who loves her to trust she knows herself, to respect her decision to live as the person she knows she is.

She is my beautiful daughter and If she can be brave then so can I.

More and More Medical Misadventures

My permanent sacral nerve stimulation device was fitted almost a month ago and I’m going through the settings to find the best programme for my bladder to work properly. these implants are very expensive and I am very grateful for the opportunity given to me by the NHS to have a life changing device. I am already feeling the benefits of much less pain from my bladder which is fantastic. I carry my battery around with me all day everyday in case I need to turn the device off at any time. It’s become second nature to have it in my bag wherever I go.

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Life with children with EDS can be at times stressful in the last few weeks we have had 3 opticians’ appointments with Robyn due to a turn returning in her left eye. She had new stronger glasses to try to correct the turn but this has been unsuccessful so she has been referred back to the hospital to see if we have any options left to try to fix the turn. The appointment came through for next week already which is fast. Surgery is an option but Robyn is not keen on having a third eye surgery. I also found out she doesn’t have proper 3D vision as she should have and there is nothing that can be done about it which is a shame but as she will never have been able to see any differently, she will never know any difference. She has 2 hospital appointments in the next month for her dental problems. She is waiting for surgery to remove 4 teeth that are stuck up in her gums which you can see in the picture below, then she will have 2 years of braces to try to get herteeth into the normal positions. She is also being referred for counselling to deal with her anxiety which she has suffered with since she was very small. So, shehas definitely been keeping us busy lately. robyn teeth As for Lewis he has been referred to Endocrinology to see if he fits the criteria for growth hormone treatment as he is still groeing at a very slow rate. He was also diagnosed with severe constipation due to EDS this is a common problem for EDS patients as the condition can cause the gut to slow down its usual processes. He has been prescribed two medication for long term use. He had a week off school while we gave him a ‘clear out’. This is likely to be a lifelong problem for him; I know that problems related to them having EDS will probably crop up throughout their lives which is a shame for them both as the condition can affect many internal organs and many of the joints in the body. Robyn’s pain has been increasing lately in her legs so we are going to try some new physio exercises and I have been trying some massage to see if that helps. Every night she takes a hot water bottle to bed to ease the pain on some of her joints. I wish I could take away all of the problems the kids have, give them a more ‘normal’ childhood. They just get on with it and other than the pain Robyn suffers they hardly complain about all the problems they have.  Im proud of how they put up with all the medication they have to take and the symptoms they put up with. All three of the kids are good, kind and helpful and I’m proud of them all.

Monday is fast approaching, as dramatic as it sounds Monday could change my life. I’m due to have surgery to fit a permanent Sacral Nerve Stimulator after finally getting a diagnosis for my bladder condition ‘Fowlers Syndrome’. A few weeks ago I had my trial of the device and I was amazed by how much it changed my bladder function. After 4 days I was almost pain free in my bladder and it was behaving like a ‘normal’ bladder. I even went catheter free for 10 days. If you have never had to insert single use catheters yourself multiple times a day you could not possibly understand how painful and inconvenient it is. The relief I had for those 2 weeks when the trial version was in was wonderful. The surgeon informed me that this device costs 15,000 pounds and I can tell you I could not possibly be more grateful for the NHS for the chance to get this surgery. After my trial my surgeon lost funding to provide this device to bladder patients, they managed to fix the issue within 2 weeks. I was devastated when I believed I may not get this surgery for a long time and this helped me to realise how much I wanted this surgery. I feel so lucky that I am getting it so quickly after waiting so long to get a doctor to take my bladder problems seriously in the first place.

There are a few drawbacks to living with this device inside me for the rest of my life, I will never be able to horse ride, skydive, play any contact sports or go skiing. None of these things will be a great loss to me if I’m honest, I wouldn’t be doing any of these activities anyway. The things that will affect me are the fact that I can never have an MRI scan again, I have needed many MRI scans in the last 10 years so not being able to have one may make it harder to get treatment for some joint problems. I will also have to wear a medical alert bracelet every day to ensure medical professionals are aware of this in case I am ever admitted to hospital and cannot tell them I have the device inside me. The device is known to set of security alarms in airports and more embarrassingly I imagine, in shops. You need to carry a card which states you have the device implanted so you’re not accused of shoplifting every time you walk out of Asda with your weekly shop. Nearby household items like fridges which have magnets can cause shocks through the lead inside your body which sounds like a super exciting way to go through life. I might get a painful shock every time I get the milk out of the fridge for my cuppa. Hmmmm considering the number of cups of tea I drink a day it maybe best not to think about the chance of that happening too much.

I weighed all of this up for a while, the positives do outweigh all the negatives and possible side effects. So, from Monday all being well I can get one very important change to my life living with Ehlers Danlos Syndrome and the complications and chronic pain it causes. I’m excited, hopeful and very nervous all at the same time. If I think too much about all the complications and surgeries I have had in the last few years it makes me feel very concerned for Robyn and Lewis and their future with this condition. I have decided to look at it in a different light, in the way that I am trialling all of these surgeries and devices that they may need in the future and it will make me more able to comfort them and understand what they go through if they ever do need any of these. So, I’m going to spend my weekend nervously and excitedly looking forward to Monday, see you all on the other side. 🙂

Feeling the Fear Decrease

For almost 3 years I have spent so much of my time worrying about what people think in regards to Robyn and her choice to live as a girl. I have struggled harder than I could explain to anyone with the fear of judgment and blame. I have always been supportive of her and understood that this is who she is and that she hasn’t changed, she is still my funny little child. She is still Robyn through and through, she still loves Dr Who and being bossy. I never felt like some parents do that I had lost my son, I didnt feel like I gained a daughter either because Robyn was still Robyn. All I ever felt was fear, fear of other peoples reactions, fear of her future just worry after worry.

Yesterday something happened, I sat in a school assembly and watched Robyn get an award for her huge improvement in English. She has been behind in education her entire life due to Dyspraxia, she has always worked extrememly hard and never given up when she found things difficult. Yesterday I was told she has passed a mock SATS exam in reading. This is huge, 6 months ago we didn’t think she would even take her SATS exams as she was expected to fail them. Since moving school and feeling more accepted and comfortable she has made huge leaps in her education. I am happy to know I made the right decision for her when she asked to move schools.

This was a lightbulb moment for me, maybe this is what she needed all along. She is thriving so much more now she is confortable in her gender expression. So I felt a sense of peace with the fear, I know it will still be there and I will always worry about her future as a transgender person but I am choosing not to worry as much about what other people think. Watching your child thrive is all a parent could wish for, yesterday gave me a new attitude towards the fear of being judged and blamed.

All that matters is that she is happy and comfortable, when i look at her happy little face it reminds me we are doing the right thing. How can making your child happy be wrong. How can letting her feel comfortable in the skin she is in be a bad thing. I will balance my fear against her happiness and I know which one will always come out on top from now on.

 

 

Decisions, Decisions, Decisions.

Life throws me curveballs all the time and Im proud to say most of the time I step up and do what ever I need to do but lately it seems much harder, the pressure much heavier. I hate making decisions, being a grown up is hard at times.

I had thumb joint fusion surgery in November and the surgeon believes I am allergic to the metal in the plate or screws they have put inside me. This means having another surgery to remove the metal sometime in the next few months and hope that the bones are fused enough without the metal. The idea of going through the surgery again frustrates me hugely it has been painful and frustrating. The problem is that I am due to have trial Sacral Neuromodualtion surgery in January before a permanent surgery to fit the permanant device in a few months. Now I am unsure if I will be allergic to the battery I will have implanted after the trial surgery in the permanant surgery. This is an example of what the surgery is.

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If I dont have this surgery I will have to use catheters for the rest of my life. I can have botox every 6 months but the risk is I will have to use more cathters than I do now. The best chance for me is Sacral Nerve Stimulation it has a 70% success rate and has been a miracle for some people.

I don’t want to have to take these kind of decisions, I have held on to this surgery as the best possible solution to the painful spasms I have everyday in my bladder and the end of having to use catheters every day. My future without this surgery is bladder incontinence, constant bladder infections, possible kidney damage, pain and a permanant catheter. So yes I want this surgery, I want to give this a chance. So I am trying to decide whether to risk having another piece of metal implanted into my body that I could be allergic to. It’s a risk but the rewards could be amazing, I wish someone could make this decision for me . I wish I could pass the choices on to someone else and let them take responsibility for whatever happens.

Because knowing you will only have yourself to blame if something goes wrong is a feeling that sucks! But doing nothing and wondering if you passed up a chance to make things better sucks too.

I want to be free of the feeling of anxiety that comes with making these choices, its not going to happen though. So I’m going to make the choice and be responsible for whatever the outcome is because if there is a chance I can be better even a small one then I have to give it serious consideration. Like I said being a grown up is hard and this is a decision I have to make alone, with support but still alone.

The Blame Game

A lot of our lives seem to revolve around blame, we blame others for things that have gone wrong and we blame ourselves for things that we may or may not be to blame for. I have spent of the last 11 feeling to blame for the kid’s health problems and for the lack of time spent with Elliot because of spending time in the hospital with the little two or looking after them when they have been ill. I spent a lot of time feeling guilty and blaming myself for not being able to share my time more equally.
In recent years I have found myself being blamed for Robyn’s transition and I don’t feel that was fair. I in no way encouraged or wanted my child to be transgender, I am to blame for loving her and supporting her and I do not feel that is a bad thing. I will not be made feel guilty for supporting my child in living the way she believes is right for her. As a parent you live most of your life feeling guilty for one thing or another and I believe that’s true for every parent. You spend each day trying to be the best parent you can be and I don’t think we remember that doing our best is good enough.
I am angry, really angry in fact that I have been blamed for Robyn being Transgender. I am angry that anyone could believe I would try to psychologically abuse my child, to push her into what can be a very difficult life. That there are people who believe I am such a terrible person and parent hurts me more than you can imagine. To know there are people who have talked about me behind my back and decided that by supporting my child I must be the reason she has taken this path is hurtful. I love all my children so much and would never do something like that, but I know it’s easier to blame me than accept that Robyn knows her own mind and has made the bravest decision I have ever known a child make. Yes she was young and yes it was a huge decision but I trusted her and I believed that she knew her own mind.
I didn’t do this blindly, I sought advice and support, I got referrals to the correct services but that didn’t matter to some people. So yes this is about blame I am to blame for many things but not for this. I didn’t make my child transgender and I didn’t do anything wrong when I supported her. Look at her 2 and a half years later, look at how happy she is how confident in her decision to live her life as a female. She knows she is supported and she knows if she ever changed her mind I will support her in her decisions. How can I be a good parent and ignore what she truly believes she should be, how can I not defend her right to be happy in her body and how she lives her life.
I’m not saying I haven’t made mistakes god I have made plenty but I love my kids when I think about how much I love them it actually hurts in my chest. So in the face of being blamed I’ll still support all three of them in whatever they choose to do and however much I may be judged for it because they are my priority and they mean more to me than anyone or anything else in the world. They are the best thing I have ever done in my life, so if people need to blame me for something instead of being able to accept that a young child can know that they are meant to live a certain way then that’s fine. I would take any amount of blame and amount of talking behind my back to support my children because that’s what you do when you love someone.

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What Makes Me A Woman?

I was watching a documentary called What Makes A Woman. It got me thinking about why I believe I am a woman, am I woman because I have breasts and a vagina? It was the first time I had thought about it and realised that those body parts are nothing to do with why I feel like a woman. My brain or maybe my consciousness of who I am is what tells me I am a woman. If this is true then biology and my physical form are irrelevant. I believe I am a woman because I feel like I am a woman not because of the genitals I was born with. If I woke up tomorrow with a penis I wouldn’t suddenly feel like a male. If I grew a beard or no longer had breasts I wouldn’t believe I wasn’t a woman. I can honestly say I have never thought about this before which surprises me as I have a transgender child.

I think it’s possible for many of us that our gender is such an ingrained notion that we never question as to why we feel we are male or female. We just are.
So why is it such a stretch to believe that a person could have the biology of a gender but the brain of another?  If you know so deep down inside yourself that you are a female or a male and having a different sexual organ wouldn’t change how you feel about your gender why is it so difficult to understand that you could have a penis but know you are a woman or vice versa? I have never and will never judge anyone for not understanding it but if you have never thought about gender in that way just for a second think about why you believe you are the gender you are. If you woke up tomorrow with a different sexual organ would it change how you saw your own gender? I don’t believe for the vast majority of us it would.

I feel like a lot of the time I have felt alone with worrying about Robyn’s future because I didn’t know or speak to anyone about who understood, then I got back in touch with Mermaids who are a charity who work with transgender children and their families. I met other families a few weeks ago who understand my fears and also have no judgement on the life Robyn is living. I don’t have to be worried around them about how they might react if they knew about Robyn or be afraid someone there will be cruel to her, everyone there understands and is compassionate and supportive.  So I thought maybe its time to learn a bit more about what might happen for her in the future to be prepared. So this led me to today I went to an amazing bookshop in a lovely village with a friend, I found two books about being transgender in the children and young adults section. I think this shows how much the need for this kind of literature is out there in the world. I bought a book aimed at teens who are transgender and decided to read it then save it for Robyn when she is old enough to need to need or want the information it contains.

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I spend a hell of a lot of time worrying about the future for Robyn but I think the more society learns from literature like this and from other avenues the more tolerant society can be of all transgender people whether they are children or adults. I hope after seeing that information is out there that this means in the years to come my daughter will be able to live the life she wants without fear of persecution from others. All I want is for her to be happy that is all I want for all my children.