It’s never dull in our house.
Just as you think life may settle to some sort of normality, crash it hits you gain.
Jake rang me yesterday to say he had a call from the hospital and they could do the final stage of surgery on Monday, so this is it, the end of what seems a long road but the end and the beginning of a new one.
After discussing all the logistics of travel Jake said he would be ok to go himself as he is in london for the weekend anyway, I know he is fiercely independent but I spent a restless night thinking of him going himself, so this morning text him to see if he wanted company to the hospital, of course his reply was only if you want to, which would have been my reply if I was in this position knowing that actually you wanted the company but didn’t want to put on someone. I told him I knew he was capable but sometimes things feel better when you have support, he agreed so I’ve arranged to meet him in London as I will travel there by train and then return once he has checked into the hospital. He’s my child still how ever could I not go?
I can still remember 4 years ago when Jess first told me….
As I listen to the words coming from Jess I feel fear, I don’t know what to do, how do you deal with this? Of all the situations I thought I may have to deal with being a parent, this was never in my thoughts. I look at the tears falling down Jess’s face, mine mimic hers, there is nothing else to do but hold her, just as if she is a little child again. It’s ok I say, I promise we will deal with it. How? I had no idea all I knew was my child was in turmoil, my love had no boundaries and I would do anything to make her happy.
I could feel her relax a little, it will be ok I reassure whilst in my head it’s turmoil, after what seems eternity I begin the process.
At that time I honestly didn’t know how we would ever get to this point today, I made a promise I didn’t know I could keep, all I knew was I would do anything to make her happy and here we are the final stage of this long journey that has changed our lives forever.
Never give up on your dreams, they can become your reality. X
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.
Addiction – what does it mean to you?
To me addiction has been part of my life for what seems like eternity.
Addiction is a disease that entwines it tentacles firmly around its victim, into their heart, body, mind and finally their soul, refusing to let go. Offering them protection from their demons, release from life, promising to make everything better as long as they remain friends forever and a day.
Addiction then becomes a family member, the one no one talks about but everyone knows, every one hates them but no one knows what to do. Maybe if addiction isn’t acknowledged it will slump off looking for another willing victim, if only, as addiction knows their victim has been well and truly caught and if the family ignore it then even better it can entrap its victim and wreak its evil havoc in their lives for eternity.
It took me many years before I truly understood addiction but still it continued with the hold it had on our whole family changing our dynamics little by little. My parents probably thought they were protecting me by not telling me of the true extent of the addiction, I probably chose not to think too deeply about it knowing I had my own problems I had to stay strong for, so little by little addiction began winning its battle to destroy the close bonds the victims family once had, constantly promising them the earth as long as they remained inseparable.
Addiction has no preferance of race, gender or colour, it will take whoever is willing to surrender and hopes finally it can become one with its victim
The victim constantly battles addiction in the hope they can win, but addiction knows too much, it knows what to say to weaken its victim, sometimes it seems the victim is winning and the family continue their lives not really understanding the respite in behavior will only be momentary, as it takes so much strength to fight off addiction inevitably the victim once again becomes too weak.
One day addiction truly takes hold, the family watch in horror, thinking this will be the victims final battle, they have little strength left, addiction cackles in the background as the family weep silently, nobody knowing what to say to one another, all feeling the guilt of could they have done more, mentally preparing for the worse. Watching the victim in icu fighting for every breath, not letting go to find peace in the addictions hell.
Deep down the victim wants to win and sure enough against all the odds returns to the family, now there are no longer secrets, all the family know the true extent, each one wrestles with their own guilt of could they have done more and slowly the victim becomes strong and the person of old starts to shine through. The family return to old habits , bridges are hard to build when you feel you don’t know the victim because of the lost years, how do you ever start to change the learnt behaviors?
Then months later, when the victim has everything to live for, addiction comes crawling back, nagging in the victims ear until one day the victim submits. A weak moment in time that’s all it was and what sadden me is the victim didn’t feel they could ask for help, once again the old behaviors with in the family were reforming.
I wish the victim would reach out, what ever they need someone will be there when ever. We are not disappointed addiction caught you off guard, recovery is just that – recovery but please let us help you on your journey, don’t let pride stand between us, you and addiction
I am strong enough to fight off addiction for that victim and as a family there is nothing we can’t beat, just ask
It’s seems so long since I’ve been here, is this good or bad?
After moving house at Xmas and having no home broadband I guess I just got out of the habit of reading the blogs I follow and updating mine.
Thankfully my brother, against all the odds pulled through and left hospital in early February, he still has on going heart issues but he’s still with us, so that has to be a positive.
We’ve settled into our new house and now have a new addition, a labradoodle, she kind of found us as I really wasn’t ready for another dog but sometimes these things happen and it doesn’t take long before you find another set of paws firming imbedded in your heart. It’s almost a year since Pepsi died and I still miss her, Dotty has a lot to live up to but she’s a lovely puppy and fitting into our lives as if she’s always been there.
Jake continues to just get on with his life. At the moment it seems he’s buried deep in his final dissertation as he will graduate this May. It’s incredible to think how quickly those 3 uni years have passed. Remembering back to that first day, which can still bring tears to my eyes to where he is today ( which also brings tears to my eyes but different ones) so much has changed.
Even though I now see Jake as male as Jess has long gone, I still have many memories that tug at my heart and make me think of how much easier life could have been for all of us.
Mother’s Day is a particular reminder for me, it’s a day that I now feel is blighted, yeah I know I have a child that’s happy and all that but even that sometimes isn’t enough to repair the damage with in my heart.
Seeing the constant updates on social media of ‘ look what I got for Mother’s Day from my wonderful children’ just really grates on me, because it’s just all show, why do people feel the need to basically brag?
To me, as a mother of a transgender child I’m just thankful they are still alive, thankful they had the courage to tell me, thankful they knew that they are loved unconditionally.
I’m thankful that living through this experience it has made me more understanding and one day I may be there for some one else that may think theirs lives have ended. In fact it felt like our lives were paused for a while and now have been restarted.
When you are presented in life with situations that are completely foreign you can either sink or swim, three years ago, myself not particularly a good swimmer but compared to the majority of woman my age, a strong runner, I chose to hold on tight and bloody well run.
I didn’t know what was ahead of me, how I or my family and most of all my child would cope, all I knew was I couldn’t give in no matter what. To stride forward in life and use what ever I had to solve to problems we would all face. It’s been tough I won’t deny it, there were times I felt I didn’t know what to do, times I sat alone sobbing, wondering why this had happened, laughed at myself to think I had it all sorted, as so far in my life it had been rosy, even during the turmoil of a divorce, that hadn’t phased me as much as what I had at the time with Jake. I am an optimist and I guess I will always be the kind of person to take what I have and make the best of it but has it changed me?
I think it has, it’s made me more appreciative of what I do have, my family that have stood alongside Jake, the friends that I had around me but have found a new stronger friendship evolving and some lovely new friendships.
I’ve never judged somebody on what they have or who they are but this has made me more emphatic towards others, to try and offer help and advice where at times I may have stepped away.
Somethings I wish for the carefree life I had, without the swirling angst but then I think of Jake and realise what I yearn for didn’t include a happy Jess, the carefree days of a young Jess were wonderful and I will always treasure those but those teenage years I wouldn’t wish upon anyone but I have to take from that experience and use it to help others, one day it could be a friend that finds themselves in the situation I was or maybe someone I haven’t met yet but what I know is I’m prepared and I will take their hands hold on tight and let them walk with me until eventually they too can run free with hope and happiness in their hearts.
To think 3 years ago I thought my world had ended, to how we all are today is quite amazing , it’s like a parallel life, what it could have been and what it is.
I feel full of mixed emotions about this operation, even though, l knew it was in the pipeline I hadn’t thought too deeply about it, it was just part of the plan.
The more I think of what Jake has endured this week the more my emotions swirl. It’s a major operation, most of us would never have to comprehend what it entails, let alone it be your child. It’s a recondite situation.
I guess I’m confused, am I mourning, once again, a final piece of Jess or is it the procedure he has had to endure? I’m not sure if I would feel more at ease being at the hospital, seeing for myself he is ok. A friend said it’s probably the finality of the situation that now makes it real, I didn’t feel confused like this after top surgery, that’s when I finally began to understand, for those new to my blog and haven’t read back here it is
Maybe when I visit on Sunday I will once again understand. Matthew has visited and said he’s told him he feel more complete so I guess that’s what I have to cherish, to feel complete is something we all crave, in what ever form.