Be careful what you wish for

Christmas.  For Daisy this was the most important time of the year (closely followed by her birthday, and then everyone else's birthdays).

 The build up started in the summer.  With the demands for me to write lists for "Ho Ho Ho".  She loved to send letters folding up the pieces of paper she had scribbled on and demanding a stamp so that they could be sent (quickly please mummy)

The Singing Hands Christmas DVD would be on constant loop and gradually over the months excitement would build as decorations appeared in the shops and the rest of the world caught up with Daisy's festive enthusiasm.  Last year I even broke my absolute rule and put the tree up in November, it had been getting earlier and earlier each year and last year was the first Christmas since Andy's funeral and I was prepared to do anything to make it special, including giving in to Daisy's demands and putting the tree up before December.

I'm so glad I did.  I'm so glad I trawled the internet trying to get hold of the Baby Alive doll she kept watching You Tube videos of.  I'm so glad she dressed up in her Christmas hat and visited friends,  delivering cards and presents.

visiting the GP surgery to deliver cards to our friends there

Wear Jeans, Change Lives

video

Daisy was born with a completely sporadic gene mutation which caused her to have the rare disease, Costello Syndrome.  She was rare, especially as it was likely that she had some secondary, undiagnosed mutation which caused her to have such extreme symptoms.

An anniversary gift to Andy

The best piece of advice I have ever been given was by a colleague when I was working at Hewlett Packard.  I really wanted a global role and to spend more time working internationally.  "Decide what you really want and make it happen" she said "otherwise you will just make an excuse".

This has become the mantra for how I have lived my life ever since. (I got the role by the way).   It's what has helped me to develop the resilience and drive to get through some of my toughest times over the past few years.  

I wanted to be the best possible mum for Daisy, I wanted to make sure that our other children did not miss out on childhood, I wanted to ensure our marriage would survive...

After Andy died I was determined to write the book that he so wanted me to write.  I wanted it to be published by our 25th wedding anniversary, my gift to him.

So young! 12th September 1992



Long hot summer just passed me by

The long summer holiday.  Obviously I use the word "summer' in the loosest sense of the word as I have resorted to firing up the woodburner and digging out my winter boots on more than one occasion this summer as we enjoy the ups and downs of the British weather.

Thanks to the "on this day" function on Facebook I receive daily reminders of previous summers.  Last sumer when Daisy developed shingles just before I was about to go away for a much anticipated school reunion and how she bounced back as only Daisy could so that at the eleventh hour I could make it.  The week's  break Andy, Jules and I took in Southwold when Andy was recovering form his SIRT treatment - sitting together on windswept beaches, plenty of shots of all the lovely food we consumed that week.

The decision no parent should ever have to face

Nearly 6 months ago I had to make a decision that no parent should ever have to face.  I had to agree to the hospital turning off my daughter's life support and to let her go.

I always knew the day would come.  I knew that Daisy would die before me but I just did not know when or how.  As it was we had 12 years with her.  In her final three years the effect of the seizures and long term total parenteral nutrition (TPN) caused brain and neurological damage. We could see a clear deterioration, a very slow but painful decline.

When Daisy was about 7 she was referred to the palliative care team, she had been under hospice care since she was 6 months, but in agreement with the hospital we understood that we needed to focus on maximising Daisy's quality of life and enjoying the time we had with her.

These foolish things remind me of you


Linden Lodge Friends Forever Garden pictureIt catches you unawares, when you least expect it.  Those little things.  I'll be  in a shop and see a something that I know Daisy would like, would have liked, and remember that I'm never going shop for her again.  No more trinkets from festivals, tshirts of her latest favourite character, no more over the top accessories or endless craft supplies.


mothers day card from daisy

Happy Father's Day (especially to those of us pulling the double shift)



Every year on Father's day I send a message to other mums I know who are single parents, acknowledging that they are pulling the double shift .

Diagnosing autism - services need to be increased, not reduced.

If you are a regular reader of my blog you probably know that my two boys both have a diagnosis of high functioning autism, sometimes called Asperger Syndrome. 

My boys are very different, both have different needs but thanks to some great support they are on their way to fulfilling their dreams.

It was not always like this.  Our journey to diagnosis for the boys was long, convoluted and costly.  In many ways it was so much easier with Daisy, her disability was so extreme and obvious the support clicked into place immediately.

It’s different with the so called “invisible disabilities” however.  The lifelong neurodevelopmental disorders that fall within the autism spectrum are difficult to spot and children can fall between the cracks in our broken system without the support they need.
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