Eilidh is 3 on Sunday. Unbelievable. 3 years ago tonight I had no idea what Down’s Syndrome was. It has, however, dominated my life since then. That’s not actually true, as I don’t really think about it as a phrase, a condition or a thing anymore. It’s just part of our life now and part of the little monster that is Eilidh. I’ve learned a lot in this time.
Mostly I’ve learned that Eilidh is normal.
Take tonight for example. Completely disinterested in Disney’s Frozen playing on the TV, Eilidh was over in the corner up to some secretive mischief. All of a sudden, as the big song came on, she bombed across the floor, hand in the air shouting “let it go!!!” Stringing 3 words together is a BIG DEAL for Eilidh and it took me by complete surprise. She had me in tears. Then, for the next few hours she refused to go to sleep crying and shouting from her bed for attention. Again, I was in tears.
Situation normal. Or SNAFU as the kids, and Stevo, say.
When Eilidh was born I got reprimanded by an angry health care worker because I asked a question along the lines of “how will Eilidh compare to a normal child” in her particular area of expertise. It wasn’t until much later that I realised how annoyed I was with her for lecturing me on my choice of language… I don’t think there is anything wrong in using ‘normal’ as a valid reference point for concerns about my daughter who is in the minority of a tiny fraction of 1% of the population.
This type of reaction is unnecessary and, I believe, one of the main barriers to people talking more openly about disability and how parents cope with it. If you are nervous about what to say or unsure what the correct words are then you are likely to avoid the subject altogether. I would much rather you asked, or started the conversation and showed a genuine interest… it’s not a taboo subject and you might be surprised what you learn.
Of course, this particular health care worker was right in a way… Eilidh is normal. She is a little girl who has the same needs and interests as any other little girl. She has additional needs in some areas, but nothing that makes her any different to you or I.
Rory, having never met my mum Norma, misheard his sisters middle name and called her Eilidh Normal Patterson, inadvertently hitting the nail on the head.
Happy Birthday to my favourite little person, Eilidh Normal Patterson. x
8th April 2016