Last November I posted daily (well almost daily) about my beautiful Tilly and Smith Magenis Syndrome (SMS for short).
It was a series of posts hoping to raise awareness of this rare syndrome during the SMS awareness month. This year I want to continue with posts on the 17th of each month.
It will be a series called 'The 17 Posts', acknowledging the fact that SMS is a deletion on the 17th chromosome. I hope you enjoy them!
I have already written here and here about sleep and Smith Magenis Syndrome being unhappy bedfellows. Individuals with this syndrome suffer with a chronic sleep disturbance, elements of which are...
Frequent night-time awakenings
Increased daytime sleepiness/naps
Early morning awake times (5:30 a.m. - 6:30 a.m.)
What I hadn't got around to mentioning was how amazingly talented and utterly obsessed our angels are with all things technological!
No sleep and computer whizz kids...two unrelated facts you may think? Well no actually, these two facts hold hands in the real world of living with SMS. These two facts combined are our friend!
|Baby Tilly helping Daddy on the computer.|
|An older Tilly explaining to Mummy|
how to play on a ds.
Do you see it? Do you see the lifeline thrown to all us sleep-deprived families?
These 2 seemingly unrelated facts are actually our path to sleep, albeit a sleep accompanied by the steady drone of DVDs, ds games, and computer programmes blasting in an adjoining room.
It's true... the houses of families with SMS along for the ride are not quiet houses at night. Siblings learn to sleep through noise levels totally alien to the rest of the world. Parents find themselves grinning in the darkness as the Mama Mia soundtrack is yelled out with gusto...again. Peppa Pig stuck on repeat at full volume becomes life's lullaby rocking everybody toward the land of slumber.
And with this in mind Tilly got a flat screen TV in her room for Christmas.
This purchase also encouraged along by the fact she had destroyed a hand held DVD player every week throughout November, let's just say our babies are not the most gentle fingered people on the planet and leave it at that! Thank goodness for no questions asked warranties and understanding shop staff.
And so the monster TV was fitted, DVDs were brought and all was good to go. And how better to watch TV than spinning full pelt with a much-loved little sister.
The TV has been quite a hit with the girls and on non-school nights we watch with delight as they snuggle down together, sharing films, love and laughter until eventually they both fall asleep wrapped in each others arms. Nightly retrieval of sleeping little people is a regular in our house at the moment. I adore how my kids love each other. They simply do not see the padded room, the syndrome, the sleep disturbance. They are always far too busy asking for bunk-beds and together-time to dwell on trivia such as this!
I can't even remember my previous life when sleep-time was quiet and little bodies didn't need carrying back to their own beds. Imagine a life where ds game play music and the TV both singing out together, wasn't a nightly duet...I don't think I even could now.
But again that duet is best shared with a sister, under a twinkling star canopy surrounded by soft pink walls...you've got to love a padded room with a super big TV thrown in for luck!