It’s just the beginning….


Two weeks post op and Jake is now on the road to recovery. Surgery went well and after 2 nights in hospital he was allowed home so we drove to London to bring him back. He’s been fitted with a super pubic catheter and also a stent that needed to be removed by a district nurse one week post surgery and this was the first battle we came up against.
I contacted the gp to arrange a district nurse visit and all was booked in and seemed ok until the day arrived. The district nurse called Jake to say she couldn’t remove the stent, it wasn’t something they did on district and therefore she wouldn’t be out to change his dressings, he would need to contact urgent care or the hospital, when Jake reminded her he needed his dressings changed her reply was ‘ we only come out to people that are bed bound’ Jake replied he was whereby she confirmed she wouldn’t be out to treat him and put the phone down. He was distraught and said it was obvious why she didn’t want to come out. I contacted my medical friend who was in disbelief, obviously she said she could do the procedure but as a formal complaint should be submitted he needed to go through the correct channels, she also stated that even if the district nurse thought it was something she couldn’t perform, which of course it wasn’t, she couldn’t refuse to come out and change the dressing.
We went to urgent care and were seen relatively quickly and were treated with a complete professional manner, which always restores my faith in our NHS.
The practice nurse was in disbelief about why Jake was there and why the district hadn’t come out but at least he was seen to and all was healing ok.
Later on that day he started to suffer with lower back pain, which escalated quite rapidly and by early evening even his painkillers were not numbing the pain. The following morning we went back to urgent care where the dr thought he possibly had a urine infection so took a sample and issued some more antibiotics, we thought this would be the end of it but by mid afternoon Jake stated that the pain was so intense he felt like he was dying, it was worse than any surgery he had experienced. So once again after a quick chat with my friend we headed off to A&E.
Whilst registering some confusion occurred as the guy dealing with us, after reading his post surgery letter looked at Jake and said he couldn’t understand what surgery he had had, I pointed out it was all listed, once again he looked confused but tapped all the info into the computer, I guess you have to laugh at moments like this as it proves others seeing Jake see a young man and not Jess, I don’t think at the time Jake saw the funny side to it. We were seen after an hour which in A&E terms was excellent. The dr was confident the pain was not associated with the surgery and most probably a urine infection, he issued some alternative painkillers and stated that 2 days of the antibiotics and Jake should feel a lot better. Jake went to empty his catheter bag before we returned home only to see some crystals in it and his back pain had eased considerably. It seems he has passed a kidney stone which of course would explain the intense pain he was in and the instant relief.
I can tell Jake is feeling a lot better as he’s now bored and came up with an ingenious idea to allow him to actually leave the house without worrying about the catheter bag strapped to his leg becoming loose. He asked me to pick him up a pair of cargo trousers and had cut a hole in the pocket to allow the catheter pipe to pass through and the bag to sit comfortably in the pocket supporting its weight, well you do have a degree in business management I said!
The catheter has to remain in place until the 19 th August whereby we have to make another journey to Harley street in London and hopefully that will be the end of surgery for a while.
Emotionally it’s been draining to watch Jake in so much discomfort but I know the journey is coming to an end and he will have a body that matches his brain and once again I’m eternally grateful for the NHS and the journey we have been on with them.

My angst is a tsunami

 

My angst is swirling and has been all week although I have tried to ignore it, it’s approaching like a tsunami, I know there will no escape and tomorrow when it hits me I need to be prepared. Poker face and all that!
Tomorrow Jake will have top surgery, something he has wanted for a long time, something I feared wouldn’t be given so we would have to fund it privately but thankfully the NHS have provided the necessary funding.
Even though I’ve been living this life and dealing with what ever was needed the last 18 months tomorrow seems to be a big stride forward to me, it’s the day when any remnants of Jess will be left behind and Jake will be well and truly here for good!
I know Jake is apprehensive, but that’s normal I guess, Mathew has arrived and will stay for a few days and I’m sure this will help Jake and also shows the connection the two of them have, if ever there are soul mates these two fit the bill and I feel so grateful they have found one another.
I have a much needed week off work, so whilst caring for Jake I shall also use the time to run from my tsunami, I’m beginning to feel a lot better now although how I ever managed the milage I did in the spring I will never know, seriously it’s hard work getting back into the mindset of pacing out mile up on mile, I have a half marathon scheduled mid November but seriously don’t know how I will be ready, it’s not about just running the miles it’s about breaking that 2 hour time, I guess it’s going to take some hard work and discipline, but I need something to fill my mind and help with the recycling!

 

A week of caffeine & rocket

Last week was tough. I mean super tough emotionally. I actually think I existed on caffeine and rocket ( yep rocket can perk up any mundane dish) there were some tense moments whilst sorting out the required paperwork for jake & Mathews flat but I think it’s all sorted now.
Jake has been at uni all week so I’ve been on the receiving end of numerous texts concerning the flat, at one point I told jake he was not ‘ managing’ a member of staff, I was more than capable of doing what was required and in fact he seem to have changed into his father! It actually upset me quite considerably to be spoken to like my ex husband did, I pointed out to jake this, it’s a trait that may work in business but not talking to your mum!
Jake has now switched to 3 monthly testosterone injections, this is so much more practical for him and he only has 1 week until top surgery. I’m already feeling apprehensive, I know it’s what he wants, I just don’t want him in any pain, it tugs at my heart and swirls my angst just thinking about it. But like all other times I will remain strong, smile, supportive and try to alleviate any worries he has.

Few more steps forward

This week I have found has been as equally uplifting as stressful.
A week where I have physically and mentally felt so much better, I never realized how miserable I had felt until suddenly you find yourself smiling, I mean actually smiling not the work face smile, looking forward to future events and actually sleeping well. I’m amazed what a little extra levothroxine has done!
After telling 2 old friends about Jake this week I also found myself in a position that I shared my story with a client, a client I have known for years and feel is a friend, she’s probably reading this now as I sent her a link so she could get the whole story, Sharon lives with her partner Michelle and I always knew she would accept but her response still makes me smile, cool she said, I’m proud of Jake, that was it acceptance at the simplest level. As much as I still have inner angst twirling it’s more about the dangers that Jake could come up against but I guess I would be worrying the same for Jess.
This weekend jake and Matthew have been flat hunting which has lead to the stresses I have felt. He asked if we could be a guarantor, of course I said, his dad’s response was long winded and basically he didn’t want to in case he was liable for the money. If only he had took time over the last year to get to know jake he would realise he has a confident, level headed son who has morals and standards and would never even consider deferring the payments, he really has know idea of the son he has produced. In my mind it was the one thing he could have done to show his support, it seems to jake this is the final straw in their relationship and in no uncertain terms told him exactly what he thought of him! Oh well one day he may wake up and regret his actions, he will never accept the change if he doesn’t embrace it and build on his relationship.
Jake is home tomorrow for a brief visit just for an appointment at the hospital for his pre op assessment, then hopefully the flat hunting will continue.
Fingers crossed they find something ASAP.

Feel the music

In my quest to understand the world we all live in I tend to read, I love books, always have done, i can’t imagine a world without reading. I still remember the joy of disappearing to bed early when Jess was about 5 months old, a sleeping pattern had been established and finally I could take some time for me, to delve in to some make believe world of fiction, along with running it’s been my rock in life. Nowadays I find myself on the other end of a google search, or exploring amazon for information to download to my kindle. One of my recent purchases is ‘transitions of the heart’, Edited by Rachel pepper. I wanted something affirming to read, something that would fill me with hope and happiness, not tales of fear, worry and guilt. I’ve dipped into this book, it’s my car book, the one I can read between appointments, during lunch or a spare 5 minutes I have. But during the foreword I read the following

“no one ever tells you having a transgender child is a possibility. It isnt in any of the baby or child rearing books. How can anyone be prepared for this journey? It’s as if we have been forced into running a marathon and all the other runners are given a 5 mile lead and a map of the course. We spend our time trying to catch up, with no idea if we are even on the right path”

As I read this the irony of it actually made me smile which then turned into a little laugh, I suddenly felt I actually knew why I ran marathons. My running relationship of 28 years was my preparation, ok so 18 months ago with 3 marathons under my belt, when Jess told me and Jake emerged I knew very little about transgender lives, but I guess I knew how anything can be overcome with determination, passion and understanding. You don’t wake up one day decide to run a marathon and then run it, it takes months, weeks, days, hours, minutes of your life to prepare, it’s something you have to respect, the distant is an entity the majority of the population cannot even comprehend, there were times during each training session I had wanted to give up, to stay in bed when the cold winter weather beckoned me from my warm house, it’s cold windy breath hollering into my soul to run. There were times I thought I couldn’t continue but deep, down in my heart I knew I had prepared as best I could and my faith in my training and myself helped me. So I’m going to use this enlightenment, things I have little knowledge on I will research, i will try to limit the angst swirling in me knowing that Jake is more contented in his life and as he prepares to leave home and begin his work life I feel blessed my son is one of the most wonderful, level headed people I know.

I loved the film Flashdance, being a kid of the 80’s, what a feeling frequently appears in my running play list still, it also reminds me of the times I would put Jess to bed, a small child who didn’t want to sleep alone, so I would turn on the radio and tune it to a classical station and tell her to close her eyes and like the film flash dance I would say’ close your eyes and feel the music’ I love this quote, as who actually takes time to feel the music, not just listen to it? We would then make up stories of what the music evoked. Horses galloping along beaches, fairies dancing in the garden, dragons swooping in the air, dolphins swimming through the sea, what a feeling makes me feel as if I’m gliding over the ground, running with ease and eloquence even if others are seeing something different! Today maybe take some time, close your eyes and listen to some music and then feel the music. 😄

Ryland hits the social media

You may have already seen this link over the past week, it’s possibly hit all social media and has been hard to avoid, being in and out the office aka the car, I was continually bombarded with it with each news report and was interested to see how it was received within the public. Initially it seemed very supportive, most praising the parents for their support, understanding of this generally misunderstood medical condition, and then I was quite shocked and actually angered by the other comments coming in, saying how it was wrong, the parents shouldn’t encourage this as it was possibly a phase, nothing should be done until the child had gone through puberty, it left me feeling angered but I guess most people would never know the real truth about what families would have to go through when their child tells them this.

So maybe take a few minutes if you are undecided about this to consider the following:

– if this was just a phase, like others through childhood it would just disappear, I’m sure the parents didn’t take this lightly when decided to allow their child to transit.
– to allow this to happen at an earlier age will allow the child to develop happily and confidently, without the many years of angst, self hatred, low self esteem many go through before even telling others. Imagine waking up one morning and looking in the mirror to see the opposite gender starring back at you, how horrified would you be? Personally I can’t comprehend how distressing this would be, to me to suddenly look male with all the bits that come with it would be so wrong I’m wondering how my brain would cope.
– to delay puberty actually won’t do the child any harm, but not doing it can cause more distress to them mentally as they then have to cope with the ever changing image it can bring and of course aid a more natural change when hormones are introduced to begin the transition process,
– if you didn’t know it’s not just a case of going to the dr and saying please I want to be a boy/ girl and they say here you go take these pills and it will be fine, oh no, you have to learn the skill of hoop jumping!
Initial appointment starts with your GP and if you’re lucky enough to have one that understands the next port of call is an appointment with mental health, yep you then have to prove you’re sane and this isn’t just a sign of another disorder, so maybe a couple of months later you visit mental health and whoopy they confirm you’re not mental and write their findings for your GP who then has to write a referral to a gender clinic, the waiting game has begin. 6 months after the initial GP appointment you may be lucky to have your first appointment at the gender clinic whereby you have to discuss it all over again, but this time with somebody who actually understands you, believes you and agrees they can help you, your first step of the journey begins, you’re told to go and live in your chosen gender, change your name and come back in 3 months whereby the next stage of treatment will be discussed.
A year down the line hormones are prescribed to start the process, which doesn’t happen over night, it will be puberty all over again, but this time one that is embraced because at last it will be one to make the exterior look like the interior.
Again to gain surgery hoop jumping continue with visits for psych referrals, then the surgeon who will add extra big hoops before a desision is made and a date given. You may be thinking it doesn’t seem so bad, but imagine if this was you, would you still feel a few years to get to this point a short time? If you had some cancer or other illness would you have to wait and prove yourself quite so much?

Whilst this is happening you then have to continue your life in your new assigned gender, telling others and dealing with the public perception of who you are !
– so whilst the person changing, is beginning to feel happier and more confident lets consider the parents and family, how do they cope? Support ? Of course but inside that tough exterior they are showing to others how does it really feel?
– initially shocked and denial sets in, this can’t be real can it? It’s just a phase, surely?
– acceptance, after long talks, tears, research it comes, along with it the armour plating that allows you to cope and appear strong for your child
– angst, this lives within you, twirling around, constantly in the pit of your stomach, reminding you of the journey ahead, of the fear you have for your child at what they will have to deal with through out their life, you realise how you cant protect them from hurtful comments or actions from others, some days it eats you up and the armour cracks a little but never enough to allow others to know.
– the grieving, imagine all those hopes and thoughts you had for the future, suddenly you are being offered something different, you want to refuse but can’t, the pain and loss is incredible, I think it’s something that changes you as a person, you have to continue through life and try and change your whole perspective on what you thought would be. Family and friends are told, so you have to be strong to educate them.
-the support- this has to be consistent, loving, informed, sometimes the armour Will break and you will cry together, but that shows you’re human. I wonder what you would think would be the hardest part to deal with? Funnily enough I think it’s the name change and pro nouns, that’s a tough one, your child has rejected that name you chose and loved to something completely different with possibly no discussion with you, now that’s tough! This is one thing I guess a parent would never consider when you think of all the issues being a parent comes with, you wonder how you would deal with illness, bullying, drinking, drugs, mental illness etc but transgender? I know it was something I never ever considered, I guess all we can do is love, support, educate and most of all smile 😄

It’s been a long week

It’s been a bit meh this week for me.
Sigh I really hate moaning but if you wish just skip this , I’m sure it will pass.
Quiet on the work front this week and I actually thought this May help me get over feeling tired and all that but I think it’s done the opposite.
I returned home from MK marathon to hear scurrying sounds from Jakes bedroom, he was at last de junking as obviously will be moving out in the very near future, so I now have bags of junk either to go to the tip or plans to do a car boot sale, which means I have to go too as he doesn’t drive- great 😕 one thing I did rescue from the car boot sale, was roly, the cutest lab beanie dog, how could he I thought? He was one of the chosen toys, Nameless bunny THE chosen toy still remains on the bed, I couldn’t part with him so he’s now in my possession, a memory of a childhood that one wants to forget and I still cling on to. It smells of Jess, it’s been loved by Jess, it’s jakes cast off.
I think this was the start of the meh to be honest, I dropped Jake at train station on Thursday a d I don’t think he will be back until start of June for an exam, I know as parents we prepare for the fleeing of the nest, I still want to wrap my arms around him and protect from the nasty world, I know this is silly he has shown such strength of character over the years it makes me so proud just how strong he is but maybe I still think of him as my daughter, even though the resemblance has long gone. How can life be so cruel? Lots of things trigger the overwhelming sadness I have with in me, finding old photos, seeing the past being binned so easily, talk of grandchildren, babies flung in my arms by unsuspecting clients, the list is endless. I guess I still have a lot to accept with in myself, I don’t think I ever will loose all the sadness, I mean it would be the same with a bereavement , you come to terms with it but it will always fill you with sadness.
So I’ve seen myself withdraw from company this week, planned visits to mum have been binned, just couldn’t face trying to be happy, no energy to run, restless sleep, I just need to stop the world for a while- if only!
I need something to take my mind off this until it passes, I need to convince my body to run, to remember it makes everything seem manageable.