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.

Too much information?

An article appeared in the New York Times this week announcing a breakthrough in antenatal testing which is non-invasive so carries no miscarriage risk but could potentially identify up to 3,000 genetic diseases caused by gene mutations

http://www.nytimes.com/2012/06/07/health/tests-of-parents-are-used-to-map-genes-of-a-fetus.html?_r=1

At the moment antenatal screening is limited to a handful of know disorders such as Downs, or where there is an inherited risk such as Cystic Fibrosis.  The definitive test involves an invasive procedure, either amniocentesis or CVS (chorionic villus sampling) to obtain genetic material in order to establish the baby's karyotype and whether they are carrying a known genetic disease.

Genome mapping and it's applications was in its infancy when Daisy was born but within a year the mutation for Costello Syndrome had been identified and there is now a theoretical chance that babies could be diagnosed antenatally with the syndrome.  This new test also means that screening can be done for a huge range of known genetic syndromes without any risk of miscarriage. Pandora's Box has been opened....

When I was pregnant with Daisy, we were given a 1:4 chance of having a child with Downs.  We had breezed into the scan, with a family holiday booked for the end of the week and feeling like we were old hands at this pregnancy game, that's when the first of the thousands of Daisy-shaped curve balls hit us.  The consultant seemed to spend ages looking at the monitor and then made an excuse to leave the room, when he came back it was with a Nurse - we now know she is the nurse specialist for Fetal Medicine and that's when we were told that our chances of having a baby with Downs were 1 in 4.  And all that was mentioned was Downs, or at least that's what we heard, we went home and I googled and read and tried to remind myself that 1 in 4 meant that the odds were still in our favour (just!).