A year in the life
A lot of people get excited about their baby’s first birthday, it marks the end of what has usually been a life changing year for parents, and often the start of a whole set of new milestones to come. Sometimes they throw over the top parties, stage photoshoots, and buy fancy little outfits for their babies, despite knowing it’s unlikely the baby themselves will particularly enjoy this, or remember any of it! However, when you’ve been told your baby might never get to a year, birthday celebrations become all the more significant.
(Cue ‘Seasons of Love’ from Rent playing in the background….!)
How to measure a year of someone’s life.
We have sung Happy Birthday probably twenty five times to Elodie, we sung it in hospital with a tiny muffin, we sung it every week for twenty weeks until we were confident that we could ‘upgrade’ to monthly festivities instead, to mark 100 days, 6 months, and various other chronological markers in a little life.
So to make it to one whole year feels huge. I’ve been trying not to think about it too much because it’s so overwhelming, but I know one thing- when people say ‘hasn’t that flown by!’ my answer is a definitive ‘No!’. It has been the longest, hardest, best, worst, biggest year of my life, and I’m sure my husband would say the same. We have learnt a lot about ourselves and about life in general.
Unfortunately, as I’ve lived more and more years myself, I’ve learnt that it tends to be the tragedies in life that make you understand how precious, tiny, futile and short life is. All the cliches about living for the moment, not sweating the small stuff, and no time like the present suddenly make sense for a while. Elodie’s little life has been full of experiences, and I’ve really truly appreciated so many little things that many take for granted.
Her ‘bucket list’ which started the day we came home had events that, once you frame your thinking, all held equally exhilarating importance. Getting to go in a pram, sleep in her own cot, suck a dummy were all just as noteworthy life events as (later in the year) going to a concert, the Eden Project, on a plane, in the sea.
I’ve made a lot of records of her wonderful life, from photo albums to video montages, the (depressingly exhausting) sleep record app, from her bucket list book to one of each size of nappy she has worn! (At one year old she is now wearing size 3 months clothes for any parents out there wondering). But I think the most important and lasting record of her life is what I think of as the Elodie Effect.
Many people have been touched by Elodie’s story, her strength, our luck and I think also our approach to our life with her. I have had messages from people far and wide telling me how they’ve altered their thinking, how they’ve now learnt about Edwards Syndrome, or how on a bad day they remember her face and realise things aren’t so bad.
I'm determined to keep spreading the Elodie Effect and have plans to give talks to educate healthcare staff and students about Trisomy 18 and what it can look like in the years to come.
She has, I hope, spread hope to many families, and positivity and love has poured in for her from all over the world. You get out what you put in, and I’m sure that all of the above is part of the reason why she is here today, to continue shining her bright little light on all of our lives.
Happy Birthday my daughter. I love you. And yes, of course there will be an over the top party, pictures, cake and all.