Chloe starts Merit her new school in 11 days. It’s a school with 38 students for children with physical or mental health issues. I filled in all the paperwork today and she has had a second look around the school and met some of the pupils. Two of them said they can’t wait for her to start. They think she is cute because she is so tiny and one said they loved her style as she dresses all in a style of her own which is brilliant. Meeting the staff and pupils has made me so much more confident in sending her there. Her being out of education for the last 3 months has been hard work and it will do us both good for her to go back to school. She has a full occupational therapy assessment next week to find out what her struggles are and she is being referred back to physiotherapy for some help with her core muscle tone and pain. I have a feeling she is going to continue keeping me busy for a while yet either her gastroenterologist appointments on top of all this. Lewis has been away on his first residential trip since Tuesday from the pictures it looks like he is having a fantastic time. I can’t wait to have him back on Friday evening I have missed my squishes with him that’s for sure. Elliot has been put today to buy some Valentines gifts for his girlfriend which is really sweet. His card is lovely, he is growing up way to fast and is now taller than me. He will be 14 in April and I still feel 20 so it doesn’t make sense to me.
There have been times in the last few months where I have really doubted my parenting because of what has happened with Chloe, I feel like I sent her into the lion’s den when I sent her to a mainstream high school. Between her being Transgender and all of her health issues I did think it probably wouldn’t work put for her there, but I never thought it would fall apart so badly and so fast. I have tried everything to help her for years and have been turned away so many times by people saying they can’t help her or she doesn’t fit their criteria (must be my least favourite excuse). Now I have an army of professionals helping and I couldn’t be more grateful and to hear them say over and over why wasn’t she helped before, that she should never have been allowed to go to a mainstream high school and that they can see how hard I tried eases my worries a little. So, I have looked at it this way
I am the mother I am, I can’t be anything more I have loved them, fought for them I have knocked on every door. I can’t be a superhero I can always do my best There are times I need help And times I need a rest There is no shame in not coping No shame in needing to cry I have never given up Just harder I try. Even if they never know All the time and energy and feeling lost To get them the best I can get It was always worth the cost.
Robyn prefers to be called Chloe and after 18 months of her being consistent in this I have decided to try my hardest to call her her preferred name. She hasn’t attended school for a long time now due to illness and we have been offered a place in a Pupil Referral Unit for children with mental health needs and medical needs. It would be great to get her back in full time education for her social needs as well as her educational needs. It’s is over 4 miles away so she would need local authority provided transport and that makes me nervous. I don’t relish the idea of having 3 children in 3 different schools that’s for sure.
Chloe had her dental surgery in December, she was brave considering she ended up with a mouth full of stiches after they cut into her gums to remove impacted teeth. She struggled with eating for a few days, but she muddled through and was healed enough to enjoy her Christmas dinner. She has an Endoscopy tomorrow to look for reasons for the huge increase in her reflux symptoms she has had since birth, she vomits daily sometimes numerous times a day and has burning pain in her chest all the time. They will look for any internal issues and take biopsies from her stomach to see if they can find anything. She has been attending Cognitive Behavioural Therapy for over a month now and the therapist suspects she has Agoraphobia which causes her anxiety. This is why she has struggled so much in a high school with over 900 students. We hope with the CBT she can earn to manage her anxiety and get back into mainstream school in the future.
Lewis turned 9 yesterday and the older he gets the more I see the person he is becoming; he is funny, kind and cheerful which is amazing considering the medical and educational problems he has encountered in his life. He is going on his first school residential trip next month and I am nervous about it, but he could not be more excited. Its only for 4 days but I will miss him and his cheeky face. He has overcome so much, from the premature baby who wasn’t expected to survive the first night, who was diagnosed with brain damage at a few days old and couldn’t eat or drink without tubes fully until was 2 years old to a 9 year old who works hard at school and makes me laugh every day. He had a great day on his birthday dressed up as Woody from Toy Story and playing with his friends.
Elliot is a fairly typical teenager; he is at times grumpy and shuts himself in is room on his PlayStation and at other times he watched films with us eating sweets and can be an excellent big brother. He works hard at school and his reports always show he is well behaved. I am constantly grateful he is healthy, and I don’t have to worry about hospital appointments and operations for him. He gets and needs a lot less time and attention from me which makes things easier, but I do feel guilty as I think he probably needs more from me than I give him. He has tolerated a lot with the things that go on with his siblings and my health, he never complains when I am busy with everything and always tried to be kind and helpful when Chloe has an operation or appointments and is taking up a lot of my time. He also has had to cope with big changes to his life with Chloe and mine and his dads divorce, he makes me proud.
It’s been a busy few months and it’s not looking any less busy in the future; we have an appointment in London at the Gender Identity Service for Chloe at the end of this month then she will be getting her first removable brace not long after that. There are a few hospital appointments for me and the process of getting Chloe into her new school and then hopefully we will get a few months of peace.
For Robyn the last few months have been tough, her health has been a big issue as has her anxiety. Moving up to high school has caused a lot of issues, she now isn’t attending school as the impact of the huge change it presented caused her gastrosophageal reflux disease to become much worse. She has been vomiting and feeling ill for a few months. She was absent from school ill and being sent home so often the school agreed it would be better for her to do some online schooling until after Christmas, we will review this situation with support from school after Christmas. She was referred for a wheelchair by her peadiatrition to help with her joint pain and tiredness and we are now waiting for the wheelchair to be delivered.
We have changed her medication with the help of a peadiatric gastroenterolgist and are waiting for an appointment for an endoscopy with biopsies to be done under general anaesthetic to try to find out what is causing the reflux to become so much worse. They feel it could be allergies but it also could be her anxiety causing the increase in severity. This procedure will likely happen in December or January and will most likely be a very stressful time for Robyn as she gets very anxious about medical procedures. She has been referred to Occupational Therapy to be assessed for aids to help her at school and at home. She is tired much more often and in pain, uncomfortable and struggling to get to sleep at night. She has also just started Cognitive Behavioural Therapy with CAMHS to help with her anxiety and we hope this will also help with her reflux and tiredness. The therapist after assessing Robyn feels she may have Agoraphobia which is causing most of her anxiety. She anticipates having a diagnosis for her mental health issues in a few weeks.
She also now has a date for removal of 4 impacted teeth which she will be under general anaeathetic for. This involves cutting into her gums in 4 different places and removing them and stitching her gums back up. She will not be able to eat solid food for around a week. Her surgery is in less than 2 weeks and she may need to stay overnight, trying to arrange childcare for the other two kids between Steve being at work and me being at the hospital for Robyn is a bit of a nightmare. The day before her surgery we are due in London for an appointment with the Gender Identity Service to discuss the next steps for Robyn. It’s going to be a busy month as Robyn also has an appointent with respiratory consultants and then there is all the usual mayhem of December with school performances and Christmas plans.
Another huge complication for Robyn is that puberty has arrived, this means we need to start the journey for puberty blockers which is what Robyn has said she wants. It’s a long process and requires blood tests and bone scans before we can get to the stage that she can be prescribed puberty blockers. Once they are prescribed we have to hope that our gp practice will agree to administer the blockers as many doctors are not comfortable with this. She is so worried about puberty, these changes are very stressful for any growing young person but for a trangender child this is a whole different story. She is scared that her voice is going to change and that she is going to become a man. She said to me that if that happens she wont be her, she wants to be Chloe, a girl who will become a woman, not someone who is growing into a man. Although i cannot possibly understand how this feels to her logically i can see that the idea of your body becoming more and more masculine when that feels so wrong must be so upsetting and stressful. I can’t do anything other than reassure her that we will do everything we can to help her.
I have never wanted to change things for one of my children so much, i can’t begin to understand how all of this stress is affecting her. Life just keeps throwing things at her and i want to just take it all away for her.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
This month is always hard for me so I have been employing some distraction techniques to keep me busy especially when the kids aren’t here. September is my least favourite month, well that’s putting it mildly actually I hate it. September is ‘the’ anniversary month, the anniversary of a day absolutely no one ever wants to celebrate. And I mean no one and I mean never. So September for me is a lot about distraction and a lot about being sad and wondering what should have been. In 14 years I have yet to find a better way to deal with September so I continue to distract myself. The problem is that each day has this habit of turning into the next day and then we get closer to D day and it takes superhuman strength to be distracted on those days. The last two days I have spent hours cleaning and baking to make sure I don’t have time alone to think. But then as always at night there is no more distracting you can do and you can’t help but think of all the things you have been avoiding thinking about.
So here it comes, tomorrow I have no choice but face the day regardless of how much I want to hide. Tomorrow I should have a 14 year old teenage son to spoil, a 14 year old to marvel at how much he has grown and how it feels like only yesterday he was a tiny baby. To think of all the memories we have made and all the other cliches we all know and love about our children growing up. I should be moaning about picking up his dirty socks and complaining about how he eats me out of house and home. Tomorrow like the last 14 years I will have none of those things, not one bit of it. All I have is a memory of you kicking me from the inside and the brief time I got to hold you and stroke your baby soft skin. It wasnt enough, nowhere near enough and even after 14 years it still eats me up that your not here. I can’t begin to describe how much I wish I could change things for you, the things I wish I could have done with you. I can’t pretend i wouldn’t be changing them for selfish reasons aswell.
There is no time limit it appears on grief, I’m still angry and I’m still broken from your death. I was pregnant for 8 months and I had a baby but I didn’t feel like a mother. I felt for a very long time that I failed you, like somehow I should have protected you but I didn’t. I know now that’s not true, I did my very best and I did protect you, I loved you and I made plans for you like a mother does. It sometimes feels like as a parent you spend a lot of time feeling guilty for the things you get wrong and feeling worried about what will happen to your children. That’s how I know that I did become a mother even though you weren’t here. I worried about what was going to happen to you and I worried if I made the right choices, I was a mother because I felt like every other mother feels when they have a child.
So tomorrow we will light some candles for your birthday and your siblings will blow them out and we will talk about you, I will answer their questions about you that always come and it will hurt but I will be so glad as always that they think about their biggest brother. I will bring you some flowers and talk to you, I will no doubt cry at some point and that’s fine, I will cry because I wish you were here to celebrate your birthday and because I’m your mum and mum’s do embarrassing things like cry on their son’s birthday.
And although I will always feel broken that you’re not here I’m glad it still hurts in some ways because it’s when it hurts the most that I feel closest to you and I wouldn’t want to ever stop feeling that. I’ll try to see it from different perspectives, I know that without having and losing you I may have been a very different person. I know that your death made me appreciate many little things that I may not have when I had your siblings, it makes me more empathetic to others who experience loss and above all having you made me a mother and I wouldn’t take that away.
So I haven’t written in a while and I think that a lot of that has been because I couldn’t find the words to say what I wanted to say. I spent a chunk of that time in a situation which made me extremely unhappy but I didn’t know how to escape from it. Life has now changed dramatically but definitely for the better. So the big updates (drum roll please), I met an amazing man who makes me incredibly happy (nauseating?). I have wonderful friends and family who have been an amazing support in the last year or so when I needed them most. I am now a divorcee and have had to get used to co parenting the kids with their dad. Sharing the time with your children with another parent can be both difficult and enjoyable in some respects. Having some free time is no bad thing but missing your children is not an easy thing to cope with. Co parenting is not something I ever wanted to do, in fact it was something I would have and did do a lot to avoid.
Being mature and amicable after separation isn’t always easy as any separated parent will tell you but we do it for the children’s sake and we seem to have fallen into a pattern that works mostly. I want my children to know that they come first and that we can put aside what has happened in the past to be good parents no matter what we think about each other.
So onto this year, I have had a lot of adventures this year and done things I would never have had the chance to do before which has been amazing. I have done a lot of ‘firsts’ this year, me and Steve went on holiday to Loch Ness in Scotland and we both loved the amazing scenery. We managed to see a wild dolphin on a boat trip in Inverness which is something I have always wanted to do. We made the long trek (in a car obviously) to John O’Groats (and took the obligatory selfie) another thing on my wish list.
We also went on our first holiday as a family with Steve to St Ives in Cornwall and although I don’t suggest a 7 hour+ drive to anyone with kids we had some amazing day trips and the kids had a lot of fun. I was so happy to get such a long period of time with the kids and to see them have fun getting to feed baby animals and go swimming in the gorgeous sparkly Cornwall sea. The kids have had a lot of changes to get used to in the last year so it was brilliant to see them so carefree.
So now things have come to a calm point in our house for the kids, they are all settled in school and about to start back for another year. They have been amazing coping with everything that has happened and I look forward to getting on with life without any major life changes for them in our home. Although it has been difficult in some parts this last year or so has taught me a lot and also given me a lot. I am very lucky to be in a very loving relationship and to get to have our little adventures and be spontaneous, to have someone love you and see past your flaws and your disability is a beautiful thing and I couldn’t be more thankful.