The lottery of life

Xanthe took this picture in early January, Daisy was in for an MRI under general anaesthetic as her neurology team tried to work out why her physical abilities had deteriorated so dramatically over the past few months. It was only a few weeks later that same month that Daisy passed away in the intensive care ward of the hospital.

This picture does not just speak volumes about the bond that Daisy and I had, that speaks for itself.  For me it also tells a story of a little girl who was safe and sound.  No matter what was going on in her life, she was cared for, she had a roof over her head, she had access to help.

The parent room conversation I wish I could have had with Ashya's mum

December will mark 10 years of me riding the "parent of a medically complex child" roller coaster, I have seen a lot of things, been through a lot and I guess I can sometimes find myself in the position of sharing my experience and thoughts with other parents.

Often the best conversations I have had have been in the parent's rooms of children's wards, late at night when you try and have a few moments over a cup of catering tea, flicking through gossip magazines without really taking them in, your mind preoccupied and mulling over the day's discussions with the medical team.

Faster, Higher, Stronger.....

When Daisy was nearly 7 months old she had a gastrostomy tube inserted as an emergency case.  It was an emergency because at the time we were relying on a nasal-gastric tube to feed her and her vomiting and excess secretions meant that it would come out several times a day and she was losing weight and dropping her blood sugars constantly as a result - as we now know the weight loss was going to happen regardless as her gut became unfeedable but at the time we had to try every option.

Gastrostomy insertions are often done as a day case or overnight but at that point in her life Daisy was needing intensive care after every anaesthetic so she had 24 hours in ICU plus a couple of days on a surgical ward before she was well enough to come home.

That week in July was a big one in the UK and Daisy and I were able to witness it all , while the rest of the family were at work and school.  On the 6th July we turned on the TV for the live announcement of the decision on who was to host the Olympics in 2012 - I had been following the progress of the bid keenly and was over the moon when the announcement was made, hugging Daisy, not really thinking about what the next 7 years would bring.