'I Don't Know How...'

Six and a half years....... it is exactly six and a half years since this journey began for us, six and a half years since I first miscarried, six and a half years since I felt my heart breaking for the very first time. I became very familiar with that feeling over the past six and a half years as I came up against the same situation again and again... it never got easier. I don't know if it got more difficult each time, but I do know that every time that the realisation struck that it was happening again... I told myself that there was no way that I could go through it again, there was no way I would be able to find the strength to cope with another loss, there was no way I would be able to recover from it... and yet I did... again... and again... and again. 

Somehow over the past six and a half years, even with everything I have gone through.... I had managed to hang on to some amount of hope. It never crossed my mind at any point that it would never happen for us... 

I always 'knew' that it would, I just didn't know how much more I would have to go through before it did happen... and that didn't matter, because I would keep going until it did, I didn't care what I had to put myself through... I would do it if it meant that some day I would get to hold my own baby, someday I would hand Patrick our baby and our world would be complete... not just complete, but completely complete.

That has been ripped from me and I am finding that so hard to comprehend, Some days I find myself actually laughing about it because it all seems just so ridiculous, like how could that be true... it just doesn't make any sense. Some days I find myself talking about it as if I was discussing the results of the football match at the weekend... all facts and figures, very clinical.... and then there are the days.... the days where I find myself panicking, struggling to breathe because it hits me so hard that this is real, very real. On one of those days..... I sat in front of Gordon... watching him fight back tears... while he struggled to find something to say to me... as I pitifully pleaded with him to find some way to change the results, some way to fix it, some way to make it not be true... as he tells me 'Anne-Marie, you know I would if I could, but I don't know how'. How could he not know how? He has to know..... Gordon has always known what to do... each time we've come up against an obstacle... he has known what to do, he's been able to point me in the right direction, he's been able to tell me who to talk to, he's been able to tell me the steps that I need to take next. How could the guy who can make a migraine disappear by giving me instructions over the phone, who can make an irregular cycle into a 28 day cycle in less than 30 minutes, the guy who can transform me from a person who walks into his clinic a worked up ball of stress into someone who is chilled out and floats out of the clinic in as much time..... No matter what the problem is... Gordon knows what to do... how can he not know what to do to fix this...???

I guess the answer is simple... you cannot fix genetics... there is no way to fix this, and despite my suspicions that he must have some super-natural powers.... I am reminded that he is, in fact... just a human being... a mere mortal who I know would do anything to change this for me... if it could be changed.... but it can't be.

He has though, promised me that he will talk to Dr. Walsh from SIMS as soon as he can, to try to find some way of at least helping me to understand this.

I realise that since I attended Gordon's clinic for the very first time back in June 2011, I have depended on him quite a lot for guidance on this journey... and he has never steered me wrong. And even though we have been hit with the last thing that we ever expected, and I know that I will never be able to accept it... I do realise that had we not started attending SIMS clinic and had the genetic testing done there, I would have continued with cycle after cycle of IVF treatment for the next 10-15 years. I would have kept getting pregnant and miscarrying time and time again... I would have kept going til it killed me, I don't think I ever would have made the decision myself to stop, it would have been made for me... one way or another, but I do know I never would have given up on my dream to have my own baby. It was Gordon who steered us to SIMS Clinic, It was Gordon who introduced me to the whole world of Auto-immune issues and practically plagued me with the 'Is your body baby friendly' book until I finally agreed to take his copy and read it. It was Gordon who pointed me in the direction of Auto-immune and genetic testing, he kept talking to me about Natural Killer cells and I kept brushing it off and letting it go over my head.... I did not want to even go there. I know it sounds like I'm blaming Gordon for a whole pile of stuff here... but I have to respect that it is because of Gordon that we finally got answers...not the answers we wanted.... but definitive answers none-the-less.

I truly do not know how I am going to get through this... I don't know how I am going to get to a point of being able to even believe that this is true, never mind a point of understanding it or coming to terms with it, but an email from Gordon that simply said 'spare parachute packed and ready' ( You might remember me being in a state before my last transfer and comparing it to jumping out of a plane again and again and my parachute failing every time, and me being afraid to jump again in case the same thing happens again... and Gordon telling me that it was ok because this time he was jumping with me and he was carrying the spare parachute) tells me that no matter how long it takes or how bad it gets.... I won't be going through it alone.

To be honest, I've been a bit surprised by people's reactions to this news. I've been met by friends, colleagues, family... who cannot speak, but simply hug me and burst into tears. This is affecting everyone very deeply and it makes me realise that there are a lot of people who have been on this journey with me, people who have no experience of IVF themselves but have followed my journey from the start and have hoped and prayed that it would work for us. From my friends who tell me that they know how lucky they are to have their babies and that it just isn't fair that this is happening to me.... to the amazing woman who continually offers me use of her womb should I ever consider going down the surrogacy route.... To Gordon who was fighting back tears so hard that he couldn't speak (sorry to ruin your macho image ;-) )..... to my friends who are planning coffee dates, shopping trips, pamper days, venting sessions..... anything to make me feel better and get me through this... to my colleagues at work who have been simply been amazing..... to Patrick's sister in-law who made me toast because I had forgotten to eat.... to my friends in Northern Ireland, the UK and America who sent me the most beautiful pendant - the design entitled The Circle of Life, which has so much relevance and meaning and is very very special to me. I have been overwhelmed by the reaction, and even though I know that I am nowhere near the point of even beginning to realise the severity and actuality of this... I will get there and I will not be alone.

Circle of Life Pendant.

That Time Of The Year Again...

15th of October ...7PM Wave of Light... One candle for each of our beautiful Angels.xx.

Abnormal Genes and Disintegrated Dreams...

Where do I start...???

I had kinda forgotten that Dr. Walsh from SIMS was to ring me today with test results - and how I so wish he never made that call. I wish I could turn back the clock and not take that call today, I wish I had never heard the news I heard today, I wish I never got those results, I wish I never did those damn tests... coz then I could continue living in semi-ignorant bliss where I had hope, where I could picture myself carrying my baby both inside and out, where I think about what school my child will go to, what hobbies they will have, how people will say to me that he/she looks just how I did at that age.... that all disintegrated in about the first 90 seconds of that phone call.

I have a genetic abnormality called Low Low FMR-1 Homozygote. This directly affects follicle development and egg quality. It means that I am genetically predisposed to miscarriage, and while the success rates with fertility treatment are very low in the best of circumstances, this automatically reduces our chances of success by at least half.  Basically when we are conceived, we get half of our genes from our Mother and half from our Father. A certain amount of the genes from each side are 'fertility' genes and decide things like quality of the eggs and how your follicles will develop. I have found out today that my fertility genes from both sides are inadequate. They are low on both my X and Y chromosomes. This is not good news. This is an inherited condition and is very rare. I am only the second person that Dr. Walsh has come across that has this condition. The chances of both parents having deficiencies in those specific genes are very very low, but that is what has happened.

I was also informed that I have some immune abnormalities and I have an elevated level of Natural Killer cells. This means that my body is attacking the embryos when they are put into my womb, killing them.

What this means for us..... Well basically... Patrick's sperm has 100% anti-sperm antibodies which basically eats away at the sperm, my eggs are crap and my womb is pretty much an inhospitable environment and will attack anything that enters.

So... where do we go from here...??? Well, digesting all of this and finding some way to get over the shock of yet another devastating blow will be a good start. Then Dr. Walsh wants me to have my testosterone levels and liver function tested. I then need to have surgery to address some ongoing issues in my lower left abdomen. Dr. Walsh then suggests we do what he calls a 'closure cycle'... basically a cycle of IMSI, using EEVA while suppressing my immune system with steroids and Intra-lipids to keep my Natural Killer cells at bay and stop them from attacking the embryos. If this cycle fails and I miscarry, then the only option for further treatment will be donor eggs/donor sperm.

I swear, this has to be a bloody joke...!!!

I could feel myself getting overwhelmed as Dr. Walsh was speaking to me on the phone, I could feel myself starting to tear up and my mind was drifting a bit. I had to remind myself to pull it together and focus on what he was saying to me. Then I had to tell Patrick. 

I then found myself doing something that I guess would be quite unusual to do after hearing such devastating news... I swallowed what I was feeling and I walked out of my office. I didn't tell anyone at work... I simply carried on. I went into every classroom and chatted with all of the children... like I always do. I sat at the desk in reception and greeted every child and parent as they passed... like I always do. I just carried on. I guess I didn't do too good a job at hiding it completely, as one of the senior staff members noticed something and asked if I was ok, I simply told her that I was.

I don't really know what to do now... it all feels so dismal and yet I don't fully believe it. I feel like we're 
re-enacting the episode of FRIENDS where Monica and Chandler find out much the same thing. I'm feeling pretty lost right now.