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.
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.
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.
Life is anything but normal but i haven’t felt the need to write about it much. Having lots of tests at the hospital at the moment but not worried about it anymore. My bladder looks healthy and I’m starting some medication to hopefully help some of the problems with it. Kids are all happy and trying hard at school, what more can we ask for from them (other than to stop fighting, whinging, moaning and generally being a pain in the arse). There is the referral going through for Robin to Tavistock who deal with gender dysphoria in children so that’s all in motion. Not many hospital appointments for the kids. New paediatrician is fantastic so everything gets done without me chasing it up which is great.
If things are so settled or as settled as it gets in this house I wish I knew why I felt so unsettled. I feel as though I’m waiting for the other shoe to drop. It’s disconcerting to have things so in order and to still feel such a lack of control, maybe life is so often more stressful than this that my brain hasn’t caught up yet. Life can stay this way though if that suits the universe’s plans I don’t mind a bit of semi normality. So I guess I don’t know what I’m writing for really, no news to impart, no new information for me to try to understand by writing it down. I think it’s become habit now to write when I’m thinking.
I woke up early today to lots of snoring going on in the house, some rather cute and some more sort of house shaking. I went round the rooms checking on everyone, there is something beautiful about being the only one awake and getting to sneak into the kids rooms and watch them sleep with the sunrise coming through the windows. That is until they stir and you exit the room as fast as you can offering sacrifices to the gods so they don’t wake up yet. Sometimes you need a little reminder that life, time and things you will want to remember are going by while your spending time worrying and planning.
Relax more, look around and press the pause button that should have been my new years resolution. Ah well it’s never too late to start is it.
I made a choice a few weeks ago to stop taking Tramadol which is a fairly strong addictive opiate. I stopped cold turkey and was fine other than in increasingly hard to manage pain. I was then put on Gabapentin which is not an opiate and helps with nerve pain. These painkillers do not help as much as the Tramadol did but they are less addictive which I am much more comfortable with.
Flip side of this is I have had such an increase in pain or at least my awareness of pain recently. My bladder is contributing to a lot of that pain and hopefully the new painkillers will help with some of that. I can see that some of my internal organs are becoming more and more affected by my Ehlers Danlos Syndrome and I am increasingly aware of how much more limited I am and how much I am hating losing my independence and my confidence. I hate going anywhere alone now and feel anxious a lot of the time.
I intend to ask for help with feeling like this, I have noticed I am much more bad tempered recently and I am guessing this is due to the increase in pain and medication changes. If I have been short or grumpy with you I apologise. I am working very hard on not feeling like a burden and keep telling myself I am still useful and worth something. This is raw honest truth, at the moment I struggle to feel like a proper mother and it’s hard hard pill to swallow (and I swallow a lot of pills a day).
I remind myself daily this feeling is temporary and that I am wanted and needed. I don’t need anything from anyone I just want to say sorry if I’m not my usual self. I just need a bit of time to accept the things that are happening to me. To accept I can’t change most of these things and to figure out where to go from here.( just realised it’starting to sound like the 12 steps here).
I even recently had so much more independence. I was volunteering a lot, planning for the future and feeling more confident. That’s all gone now, I barely volunteer anymore, I dont feel i can plan much in case my bladder gets worse or I’m in too much pain. My plans keep changing and I’m not adapting fast enough and I’m not happy, I so want to be. I want to accept my life as it is and stop being so bloody ungrateful for what I do have. Stop thinking about what I’m losing and look at all I have got. I wish it was that easy.
So I guess I’m saying sorry, I’m probably very self centered and tetchy lately and I might be for a while yet. I’ll be fine soon as I always am so just give me some time and some understanding.
I want to go back, back to when life was simpler. To when I didn’t feel so much pain and didn’t feel so sad. Back to when I didn’t feel so worried all the time, when we didn’t get letters from hospital appointments all the time. When we didnt need to make physio and doctors and hospital appointments, When I didn’t feel so separate from other people, I don’t know how to change this. I really hoped things would get better but they aren’t. Getting out of bed is hard when you know you have to face a day in pain and worrying about what is going to come in the post.
There are a handful of people in my life keeping me sane, they are the ones who make me remember why I’m still trying to do things. The smallest things they do mean everything to me right now, I don’t think I could explain how important those people are. My life and my capabilities have changed a lot lately, i am unable to work as I am in too much pain and exhausted and dizzy. I feel like I’m losing more and more of the person I used to be. I am so grateful for what I have so please don’t mistake my sadness for anything other than being so tired of worrying. I have so much to be happy and thankful for but I’m struggling.
I wonder if I can get used to who I’m becoming and if I can enjoy my life in the same way. So much of my self worth is tied up in the idea of working even as a volunteer. I don’t even know why I’m writing this anymore, I think I’m tired and sad and confused about what path my life is taking. I need to give over control to whatever is going to happen, things will either stay the same or get better. I have never written this blog for sympathy as I have said many times its for me and for others to read and to not feel alone in how they are feeling.
I do have hope that my brain will catch up with the rest of me soon. I have so many wonderful people in my life I am lucky. Unfortunately it’s true that at times we pay more attention to the 1 or 2 negative people instead of the many positive supportive people in our lives. I want to be less snappy and more positive, I want to enjoy Christmas with my little family. I’m going to make an effort to enjoy things and see the positive in everything because I don’t want to carry on this way. My aim for the next few weeks is to enjoy my family and friends and try to remember that worrying won’t change anything and that it’s okay that I’m not feeling happy because things will change.
Robin was diagnosed with Gender Dysphoria this week. It’s the first time we have been given a ‘name’ for her decision to live as a girl. It’s been this way for a while now and I coming to terms with the life of living with a child who chose to live as a different gender to the one they were born.
For the first time this week I openly have said I wish she has just stayed a boy, I don’t mean I don’t support her decision but it’s changed a lot for me personally. I feel very conscious of what other people think and of how many people would do things differently to us. The psychologist told us two weeks ago to continue to support Robins choice and that it would be harmful not too but that doesn’t stop people judging us and disagreeing.
I am worried about the future and how difficult it will be for Robin and also for Elliot and Lewis. I feel like something has shifted in me and I feel judged and self conscious all the time. I never know if someone we know or meet will feel uncomfortable with how we are supporting Robin and how to deal with that situation. I feel on edge most of the time as though I have to defend her choice and our decision to support that choice. I’m tired, I want to go back to when it was easier.
Robin seems happy though, she still wants to be Doctor Who and watch Star Wars and she loves My Little Pony. For her not much has changed, she just wants to be a girl. I’m so glad she isn’t aware of all the controversy going on around gender dysphoria in children in the media at the moment. I just want her to be happy and safe. Although I sometimes wish she didn’t feel she is a girl that is purely for selfish reasons because i dont want the difficulties that come with it. So yes it’s not something anyone would choose for their child and it’s not an easy path for her to take but I will support her right to be happy in her body to the ends of the earth.
That’s right your going to enjoy this I’m not going to complain or moan once.
After a few weeks of feeling not good enough in every part of my life I can honestly say I felt successful today. Granted it was just a meal out with the kids but still. I got the bus with two of the kids on my own 3 times in one day. We went for dinner and everyone enjoyed it and I felt content, I felt like a normal parent.
Right now Elliot is with Ant at his grandparents and the other two kids are sitting on our bed watching films with me. This part, the sitting with your kids cuddled up eating popcorn and watching films is everything I imagined parenthood to be. I feel content again.
Looking back over some of my previous blogs I wondered if I give the impression I don’t enjoy parenting. I do. I love the kids and I love being a mum. That feeling in your chest when your child snuggles up to you or runs up to you excitedly to show you something they have made or done. God you can’t even begin to describe that. That moment never gets old and it never gets tired, I smile even when I think about their faces.
So basically today was good, I was proud of myself and the kids. I felt a lot of things today love, pride and yes tiredness but most of content. It’s the little things honestly it is, they make ALL the difference.