The Truth, The Whole Truth And Nothing But The Truth.

Before I let you read my next Blogs, I need you to read the following Medical Journal.

http://bmb.oxfordjournals.org/content/early/2014/12/22/bmb.ldu038.full?keytype=ref&ijkey=L0BbFUxbrIlQvXG

Sure, it's quite long, and probably, for some parts, I may lose your concentration. It will probably take 15 minutes of your life to read.... Longer if you want to understand it.  But one thing is for certain. Even if you know Meg, or anybody else that has TS, you will not have realised the complexity and seriousness of the Syndrome.

I NEED you to understand what each and every parent/sibling/caring relative goes through on a daily basis.  This isn't a 20 minute session. This is 24/7, 365 days a year. Both sides need to face reality in what is achievable when dealing with such complex issues.

This is a Cradle to Grave Condition.  This child isn't going to miraculously recover!  The last time I checked Sainsburys Deli Counter (other Super Market Deli Counters are available...) I am sure they didn't sell X Chromosomes by the quarter.......

Parents and families need to Not beat themselves up about it, and friends and extended family need to step up and support their wonderful families in caring for a child with such complex needs.  It won't last forever, but if you're living it 365 days a year for the first few years, until it settles, it is not unreasonable to accept some help x

Of course, I am ALWAYS available for questions, and support. Much love. Mamma Cubitt.

P.s. Unless you have been gifted with a TS Girl - seriously. You have no bloody idea. Accept it and please help those amazing families that do x x