It's all in the mind

I've been thinking more and more about mental health issues and emotional welfare over the past few months.  When you are so bogged down in the diagnosis, the medical stuff, the "just getting it all done" it's easy sometimes to forget the wider impact of what is happening.  Day in day out we take for granted the pain and discomfort Daisy goes through, the interventions she has to tolerate, the discomfort she constantly feel.  It's been part of her life and our lives for as long as she has been with us and in our determination to keep Daisy away from hospital Andy and I have become experts in many medical procedures and interventions.  When she was discharged home from the neonatal unit we soon learned how to pass a naso-gastric tube so that we could avoid midnight drips to A&E to get one passed, later we learned how to change her gastrostomy button, then when she needed TPN to survive we learned how to administer the intravenous drip and drugs that keeps her alive, change the dressings around the line, manage her ileostomy stoma and catheterise her mitrofanoff stoma into her bladder.

May the odds be ever in your favour

Those of you with teenagers will recognise this picture.  It's from the film "The Hunger Games", in a very brief nutshell it's about a group of young people who are selected to represent the place they were born to participate in an annual televised show, The Hunger Games, where they fight to survive, the ultimate survivor wins the show.  The show is manipulated, like any reality show, to make it more exciting for the audience, who are placing bets on who will live and who will die.  This scene is where Katniss, the heroine, who has managed to get away from the rest of the participants in order to keep safe, is forced to flee from safety and change her plans as the show's producers generate huge fireballs to chase her down and back into the action....

When you least expect it.....

I ran my first half marathon since 1996 yesterday.  Last time I ran a half marathon I was considerably younger and the following day I also discovered I was pregnant with our first child, Theo.  I was so pleased at my time yesterday, I exceeded my expectations and came in at 1:49:07 still feeling strong and definitely with enough mileage left in my middle-aged legs to cover the full marathon - a commitment I have agreed to take on for our hospice next year!

But something happened yesterday which hit me like a ton of bricks - a mile into my run, getting into a steady rhythm, I started to notice my fellow runners, the majority, like me, were running for charities, many had signs on their backs dedicating their run to a late mother, or father or friend.  And I was struck by the enormity of what I was doing, early that morning I had tucked the blankets around a peaceful Daisy - hooked up to her drip, with extension bags on her gastrostomy to drain bile, her ileostomy to drain faecal waste and her catheter - surrounded by her toys and books....and at that moment, a mile into the race, I wanted to stop and sit on the side of the road and sob my heart out.

The Waiting Game....

We know the waiting game well, we parents of children with additional or medical needs.  Waiting for results, waiting for appointments, waiting for confirmation, waiting for the post, waiting to see if the treatment is working, our lives are a waiting game interspersed with rushes of adrenaline when the waiting stops momentarily and before we have to move onto the next thing we are waiting for.  But the waiting never stops, there's always something that could help, that may make a difference, that will provide some support - it's part of the special parent job description "must get used to waiting".

Back to school blues...

I took a little blog holiday over the summer as you can tell, mainly because having all four children at home means there are less hours in the day to indulge myself in writing than normal.  Well the children have been back to school for a week now and I have taken up my usual Sunday evening position at the kitchen table, clean school uniform waiting to be taken upstairs and homework (allegedly) finished.

I think I have the back to school blues though, despite the little bit of daytime respite having the children in school gives me.  Back to school means back to meetings, appointments, form filling and in a couple of weeks another hospital admission for Daisy.  Back to school means back to the reality of my life, reality which was temporarily suspended over our glorious summer break.

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.

Take time to smell the roses

When I walk home with Jules, my 9 year old son, from school we pass a house which has roses in the front garden.  These are not the weedy, insipid offerings you see on garage forecourts, these are big, blousy, fragrant roses - the old fashioned ones I remember from my childhood.  And more often than not I stop to smell them. Just have that moment, breathing in their heady scent, before the chaos of the evening descends.

I'm a kitchen table revolutionary

I went to my first ever conference for bloggers last week. What an amazing experience to completely immerse myself in the world of blogging with hundreds of like minded women (and a sprinkling of men), hear some inspiring speakers, ask lots of questions and just have time to really think about where am I going with my writing.