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".

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