The Things I Remember about today are...

Contacting family and friends to bring them up to speed with what was happening.

David phoning to say they'd had an OK night and the nurses had managed to move then to a side room at 2.30am.  Now waiting for Docs to do their rounds.

Trying to get stuff done in the house in the morning.

Meeting with the builder, electrician and joiner about various questions they had about the build.

Taking a phone call from David telling me that he'd met with the Gastro consultant and the surgeon and being told that Alan was very sick indeed and decisions had to be made asap regarding the way forward with his treatment.  Steroids no longer working, surgery a very real option.

Karen and I heading straight to hospital.

Getting to Alan's room with just enough time to kiss his cheek before the Consultant came to take us to a private room to lay bare our options.

1.  Do nothing and continue with the current treatment plan and your son will die.  So not an option.


2.  Immediate surgery to remove Alan's large intestine (an ileostomy)   This would cure him completely of his ulcerative colitis but because he's so ill, surgery is risky and there's a very real chance he won't make it through.   If he does survive the surgery, then the next danger will be infection post op.


3.  Put him on a new drug regime that won't cure his colitis but could stop flare ups for 1 year, three years, maybe even 5 years.  Or not at all.   No guarantees.   Also it works by destroying his immune system  so any infection could potentially kill him.   If he takes the drug and it doesn't work, and we then resort to surgery, he will be in a weaker position and the odds of surviving the op are even lower.

The concern, kindness and general humanity of the Consultant as he talked us through this, as well as his sincere apologies for having to be so blunt.

Us being left alone in the room to decide our reason for being's fate, holding each other and sobbing till we could hardly breathe.  

Being transported back in time to a very similar room the day after Alan was born, experiencing the same anguish, fear and disbelief that this could be happening.

Gradually calming and getting a grip in order to do the best we could for our boy.

Deciding that surgery was the only option that would give him any quality of life.   If only he survives it.

Confirming to the consultant our decision.

Returning to Alan and wanting to lift him onto my knee and cuddle him like he was still my tiny baby.  

Watching him smile at me as I sang his favourite song (Magic Moments) and talked about holiday plans to France.

Standing up to leave, leaning over his bed and singing his bedtime story song (a made up thing from when he was a baby that he still likes me to sing occasionally) and drinking in every detail of his face, committing the whole thing to memory, utterly terrified this was the last time I would ever do this.  

Hugging David and feeling him trembling as much as me.  Not having to speak, just taking strange comfort from the fact this was a shared anguish, not something we had to deal with alone.

Finding cool comfort in the deserted hospital car park after the heat of the hospital.

Coming into the quiet house, going to Alan's room in the dark (couldn't bear to put the light on) to pick up one of his soft toys that he's long since outgrown, and cuddling it close as I cried and cried till sleep eventually overtook me.