The days, weeks and months all kind of blend into one after the events over christmas and new year, I'm ashamed to admit that I have forgotten most of the dates of things that happened immediately afterwards.

After what seemed an eternity we had a phonecall to say that the post-mortem results were back in. The nerves took hold and I just wanted to get it over and done with by this point.
The sadness, grief and even guilt were becoming to much to bare. The thought of my son in a mortuary, alone, cold and his tiny body tampered with was too much for me to handle most of the time, to have that period over with, well lets just say I was glad it was coming to an end.

So we went back to the hospital, returning once more to the Neo-Natal unit, a place I never wanted to see again, creeping past incubators and parents, some happy, some sad and trying desperately not to catch a glimpse of the babies around us. It was all still to raw.
Sitting in a side room the doctor went through the events of the past few weeks, what they had done to try and help him, what they couldnt do, blah blah blah. Like we needed a reminder,well, perhaps my partner did, she didnt remember all that much, she was still fairly ill despite what she said.
Finally we got down to the nitty gritty.
He had something called Myotonic Dystrophy, a disease that involves muscles being weak or not fully functioning, progressive deterioration of muscles. It affects everyone differently and has three levels of severity. My son had the most severe form, which affected his diaphragm, preventing him from being able to breath on his own.
Some comfort was had from finally knowing what went wrong and knowing that, even if he was diagnosed, nothing could have been done to save him. 
a box was presented to us shortly after the formal chat, donated to us from a charity called SANDS (Stillborn and Neo-Natal Death Society). I was a lovely little presentation box, containing a the thermometer that was used, his teddy and cardigan, a box with cuttings of his hair and other bits and pieces. 
There was also a book, inside was all his details, hand and footprints etc and at the back a photo, an image that will never escape my mind and haunts me to this day,As soon as I saw it I hid it away from the mrs, she didnt need to see this, no one should have to see it, this was not the boy that fell asleep in my arms, this photo was taken a good few hours after he passed, a good few. I shall spare you the graphic description, but it was truly horrifying.

I flipped out, threw the book at the doctor and told her to get rid of the photo, I didnt want that, my language became colourful to say the least. The doctor took one look at it and nodded, i could see the fright on her face and it was pulled out of the book and put inside medical notes. My mrs questioned what was so bad about it, but I couldnt bring myself to let her look or even describe. That image is my burden and I will not share it with her, or anyone for that matter. I informed the doctor that I would be making a formal complaint. She nodded, fully aware I was not a man to be argued with at this point.


Then we left.

It was a strange feeling, that era was now over, now we had to think about funerals, registering the birth and death at the same time, moving on, closure and to top it all off figuring out where the fcuk Myotonic Dystrophy had come from, its a genetic disease passed on from parent to child, so which one of us had it? One of us was responsible for our childs death, you may disagree with that statement reading this, but to live it, you see things totally differently and somewhat irrationally.

So many things to do now and we are still grieving, questioning and above all confused.
We had one healthy child, there are no obvious problems in the family, it just didn't make sense.

Yet we carried on regardless, I still felt quite alone and isolated, I'd experienced things nobody else had, not even my partner, I felt guilty for seeing his eyes when no one else had, angry at myself for not being able to help do, well, anything, terrified at the future, the full range of emotions were there, boiling away in my insides. Under the surface though of course, I couldnt be seen to be weak at this point. Too many were depending on me, I had to keep strong for my family and everyone around me.
Most people cried when they met us or visited us, sad for us, but we ended up consoling them, it was a strange time thats for certain. But since boxing day I had not cried once.
My eyes burned constantly,like they were begging me to get them wet, but that was not going to happen. It felt at the time that if I crumbled then so would everyone else.
It was a very frustrating feeling, knowing that so many people were looking to me, if im honest they probably werent 1 But it certainly felt like it, I dont know wether or not it was pride or sheer stubborness that kept my dry eyed and moving forward. People remarked on how well we were coping, I liked that, but privately I and we knew that we were existing because we had to.
We sorted out the certificates required and started visiting funeral homes. 
I was too young to be doing this, it wasn't right, I shouldn't be organizing any ones funeral yet!
However we had to, the most difficult thing to swallow over the experience was the cost! We couldnt believe how expensive things were for a burial.
Being told that they would not 'would not recommend cremation' as there would 'not be much there' left a bitter taste in my mouth.
I had no choice but to swallow some of my friend and pass round the begging bowl so we could afford the funeral that my boy desrved, no expense spared. I was a worthy sacrifice to make, one that I wouldnt change in a million years.

We raised enough money, went back to the funeral home and told them what we wanted.
We opted for a white horse drawn carriage. I feared it may look 'tacky' at first, but it had a sense of innocence behind it, it was small, my boy would'nt look out of place in there, it was just right. We picked everything else necessary and left. It would be over soon, I felt empty and numb once again.






Ill leave by stepping away from my story for now. 
I just wanted to say a huge thank you for your support, well wishes etc. I know I haven't replied to you personally, but my heartfelt thanks go out to you all.
The support for my previous blog was overwhelming and has inspired me to continue the story some more. 
Reading back over this and the previous entry I have noticed that I may have jumbled some things up with reference to time frame, this wasnt intentional! But im going to leave them as they are. Im writing off the cuff and as Ive said, most stuff gets blended into one in my head!


Thank you once again guys, you rock!