I cringe when I hear the word normal. I mean what does it mean? I’ve heard that word used too many times since we realised that there may be problems during my pregnancy. Normal scans, abnormal scans…then it became quite odd when Samuel would have an EEG done and we’d ask about the results and the doctor would say ‘abnormal’ but normal for Sam.
I’ve been around a while now and met a lot of different people along the way. Some of them society may deem as being ‘normal’ whereas I thought they were anything but, I think quirky is often a word I’ve used in the past about such characters.
How different do you have to be to not be ‘normal’? But then I look into my world with an outsiders eye, or compare my world to perhaps my sister or friends and think, ‘ok, maybe we aren’t quite the conventional normal’.
I had a quick look online as to what the definition of normal is and found this at dictionary.reference.com:
- conforming to the standard or the common type; usual; not abnormal; regular; natural.
- serving to establish a standard.
- Psychology: a) approximately average in any psychological trait, as intelligence, personality, or emotional adjustment b) free from any mental disorder; sane.
- Biology, Medicine/Medical a) free from any infection or other form of disease or malformation, or from experimental therapy or manipulation b) of natural occurrence.
Perhaps I shouldn’t dwell too much on that definition. But we feel very normal in our world, in our bubble. Samuel is our first child, so apart from nieces and friends children who we may have occasionally looked after, we don’t have a direct comparison. This is all we know of having children.
Rather than us not being normal (does that makes us abnormal), I see it that our world is just a bit different from others.
Welcome to our world:
Drugs – Sam has quite a collection of drugs in his red box which includes Clobazam, Topiramate, Vigabatrin twice a day, Midazolam for emergencies, Chloral Hydrate at bedtime, Gaviscon three times a day, Lansorprozole once a day.
Feed – Samuel takes no feed orally but instead has a gastrostomy button on his tummy and he his fed through that for all meals (and medicines). We hook him up on a feeding pump for each meal.
The professionals – There are a lot of people that we deal with on a regular basis and they form part of Team Sam.
Development milestones – Well, yes we are different here as Sam hasn’t really met any development milestones. He is about 17 months old now and still very much like a little baby. He cannot support his neck or head, doesn’t make eye contact, reach or grab for things, laugh or smile.
Stuff – We have a lot of stuff around the house that may be different to what’s at your house. We have boxes and boxes of bottles for the feed pump, purple extension sets which connect Sam to the pump, syringes (we always have a lot of syringes). Sam has a turquoise tumble-form chair (although we are hoping to upgrade to a special high chair), a bath seat to make bath time much gentler on mum and dad’s back. Oh yes and we don’t have many toys that are just here for the sake of it, most of Sam’s toys have some kind of developmental/sensory element to them which we use in play.
People – Our relationship to people is different now. To be honest if you don’t really show that you care and are interested in Samuel then I probably don’t have the time for you (literally, my world is Sam so you just have to fit in). Special needs can scare people away and we have noticed that some ‘friends’ have disappeared off the radar since Sam was born. People also feel sorry for us which I find frustrating and worry so much about what is the right and wrong thing to say they don’t really say anything at all.
The hard stuff – We have conversations with doctors that a lot of parents (thankfully) don’t have to have. We have to talk care plans. We have to have What If? conversations. We are part of conversations about prognosis and life expectancy.
BUT do you know what? Cuddles are top of the to-do list in this house. Is that normal? If you could overdose on cuddles we’d have been in trouble a long time ago! Sam may be developmentally behind but he knows what makes a good cuddle and he is very giving. When his Dad his home at the weekend we spend most of it all together in our bubble, just spending time enjoying being together and cuddling. When things get tough our motto is KEEP CALM AND CUDDLE. Tell me, is that normal?
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