I’m writing this tonight, sat rather comfortably in my bed, relishing the sounds of silence. Darling man who has heroically shifted his working day early in order to be Dad for this last week of the holiday is now fast asleep beside me. Growing lad Zack is no doubt still awake but drifting off to sleep and absolutely quiet. Princess Kesia, courtesy of rather more medication than I would like, is deep in peaceful slumber. Little man Tom is in the land of Nod, all plugged in for the night and life is still. In the background, the very comforting sounds of the Gilmore Girls… It is a fact that my loved ones seem unable to fall asleep in the silence of their own minds and thoughts… We found fairly early on that Zack found night time much easier if he had a CD on. Not only this, but music is ineffective while a story, or audio book is a wonderful relaxant and sedative. When Kesia began to have trouble sleeping, I tried various strategies such as the sleepy book , reading her stories, warm milk etc etc etc… Eventually, I tried the same as Zack… CD preferably with talking rather than music. Tom has very different sleeping difficulties largely linked to his chronic pain problems. Not only does he sometimes struggle to fall asleep, but he often wakes in the night due to pain in his legs, arms or tummy. At the age of 9 we are trying to teach him some self management techniques, and a CD was one suggestion from the occupational therapist. One particularly effective CD is the one from Relax Kids. He especially likes the stories for boys. And my wonderful, kooky, kind, quiet, mysterious, darling man… Since I have known him, he has been unable to fall asleep without some sound… specifically television sound. Now, this goes against EVERYTHING I was brought to think of as “right”. It simply can’t be good for you to sleep with noise and or lights on around you. And in many ways that makes perfect sense. I remember reading a few years ago that proper sleep was disturbed by light. Again, sense… And now? Now, I am in a more pragmatic place. Some sleep, even if it isn’t as deep or restorative as it could be, is simply better than no sleep… And my goodness golly, aren’t we lucky to live in a time and a place that allows CD players and night lights and televisions. Are we spoiled? Obviously yes!! Should we deprive ourselves because others are not as fortunate? Well that’s more nonsense than falling asleep with light and sound on. So in a spirit of acceptance, I accept that our house is not as quiet as some around bedtime – at least it’s peaceful! For years (and years and years) our bedtime sound was that of Friends. So much so that the first season’s CDs are worn out, thus bearing out the theory that CDs do not last for ever! So much so that we know the entire series almost word for word! And it has become something of a lullaby… Only recently was it overtaken by something other. The something others have not had quite the same hold, the rather comforting mix of giggles, long storyline, and just gentle nothingness. Although for me, The Gilmore Girls is simply perfect!! However, as I sit writing this inordinately long blog post, Friends is on my mind. Because the writing challenge I came across tonight was about sound. And the sound that immediately sprang to mind links in to one particular episode. It’s not a significant sound, and I suspect most people watching the episode would hardly notice it at all. Me? Every. Single. Time. I watch or hear this episode, I leap out of bed and into Tom’s bedroom – no matter the time. And I KNOW that it is the same episode that provokes this reaction! But that sound is so visceral, so ingrained in my brain that my body acts before my mind can take over. It is a sound that I listen for even while deeply asleep. And a sound that I cannot imagine ever forgetting. Meet the Infinity Enteral Feeding Pump, courtesy of Nutricia Homeward: (If this works and I’ve understood how to do it, clicking on the picture should send you to a you tube video showing you how to program the pump, and allow you to hear that singularly piercing sound, that I will henceforth refer to as “the beep”. Here’s hoping!)
Little man Tom has been tube fed since he was 8 months old, and has been reliant on a pump feed overnight since then. He’s now 9 years old, so that 8 years and 4 months of “the beep” ruling my nights. Because this thing is full of alarm settings: OCC IN, OCC OUT, BATT, END DOSE, AIR etc etc. The favourite seem to be OCC IN and OCC OUT (occlusion into the pump or out from it… the theory is that depending on the alarm you will be able to find an obstruction or a kink in the tube in a different section of the whole system… if only it was that simple!!).
The pump has a variety of different tones, but “the beep” refers to OCC IN and OCC OUT.
If little man Tom moves in his sleep and kinks his tube? OCC OUT (someone really clever would somehow find an audio file of “the beep” and link it to those words… I’m neither that clever nor that patient – for which you should profusely thank me, as it offers you the true joy of one less painful aural experience).
If his feed is a little too thick and the pump gets confused? OCC IN (or if a tiny lump gets stuck between the bottle of feed and the pump).
If the tube twists? OCC IN or OCC OUT
If the feed is the wrong colour for the sensor? OCC IN
If the feed runs out or blocks in the bottle stopper? AIR IN
If by some miracle all has gone well and the whole amount of feed has been pumped into little man? END OF DOSE (a slightly different beep)
If little man has so twisted and turned in his sleep that he has become unplugged and the pump is kindly feeding the bed or the floor? SILENCE… NO. BEEP!
Now. I’ve been doing this, it’s been established, for some 8 years now. That’s not far off a decade!! So on the whole, we are past the teething problems. We hit a tough patch when Tom was about three years old because I moved from formula to a blenderized diet of “real” food… so lumps, consistency, viscosity, colour became a whole new world of “pump whispering” but again, it’s been a while! Despite this, the pump usually finds something to beep about at least every other night. Some nights the bloomin’ thing just never stops!! And 8 years of broken nights do mean that I tend to give up and turn the blasted thing off… compensating for the lack of calories can be an uphill struggle for the next few days. So… It’s taken me this long to reach the starting point of this post! The writing challenge on WordPress this week was to write about a sound. “The beep” is my sound.
That sound permeates my entire being. I am so attuned to it that I often wake milliseconds BEFORE it beeps. It is a sound that I live and breathe, one that I both love and depend on and also one that I resent with remarkable passion.
I have utterly ambiguous feelings towards this little beep. It symbolizes life, the conquest of modern science and medicine over mysterious, complicated and long term illness. Without that beep, I have no doubt that my little man Tom would quite possibly not be alive. And so, it is a sound that I treasure and that I would feel quite bereft without.
And yet it is also a sound that I hate with more energy than I can express. Every time I hear the beep, I hear another reminder that my little boy is a little bit broken. That despite everything I could have done as his mother, I could not teach him to eat. And before the choirs start with the usual chorus of “but you didn’t do anything wrong”, I’m well aware of that. My genes, my maternal instinct and my creative spirit all sing differently. Fortunately, my mind, my thoughts, my ability to see the world through different eyes keep me on a much more even keel. Whatever the logic, the “right” thinking, the beep reawakens the deep (yet quiet) grief that my son must live a life that few would choose.
On a far more practical and selfish level, I HATE being woken up several times a night by a strident electronic beep which means anything from a few seconds out of bed, to half an hour or more. Unblocking tubes, changing to new tubes if necessary – the yuck factor of having to clean a bed, floor, mattress (not to mention little boy half asleep and cold covered in feed) all in the dead of night on nearly a decade of broken nights. As a little aside, for those of you new to me and my funny little ways, Tom’s feed is essentially blended dinner – milk, fruit juice, oil, protein of some kind, vegetables… a delightful concoction which fills me with glee when I see it go into his little tummy because it keeps him healthy. But really quite disgusting when stuck to sheets, dripping on the floor over any toys that have been left out, or worse still papers and books. Icky, ick!
Back to Friends, and the small matter of “Coma Guy”. Much as I enjoy this episode – it makes me giggle and smile – I cannot train my body to realise that the beeps in the background of the hospital scene are not MY beep!!! By the time my brain has informed my nervous system, I’m already in Tom’s room, checking the pump!!
Sounds are mysterious things. They fill our lives from morning to night, and even through our sleep. One sound links to another and some sounds trigger deep emotional and physical reactions.
My sound is a little, life saving electronic beep. One that I love, one that I hate.
What is your sound?