Natalie Georgia Edwards
Natalie Georgia Edwards was born at around 8.30am on the 27th January 2003, Auckland Anniversary Day.
I was, and still am, a proud father walking around the birthing unit with Nats in my arms, all small and new.
In May 2005 we were concerned that she was not reaching milestones. She crawled but this was diminishing, she seemed to lack energy and often had a cold.
My friends came over from the UK around this time and we noticed that their 4 month old was solid compared to Nats. We took Nats to the Doctor and he arranged an MRI scan at Auckland Hospital. That was scary because she had to go under a general and she did not come out as soon as we expected.
Dr Patel at Starship had a chat with us. Nothing came out of the scan and he said that they would have to take blood tests. However, he said that the indicative signs were that Nats had SMA. 6 weeks later this was confirmed.
Two years later, Mum and Dad have separated and Nats spends equal time with us both.
I prefer not to dwell on the negatives. I read the sad stories on the SMA NZ, FSMA sites and feel that I am lucky and the positives become more important.
Nats is 4 1/2 . She is a very bright, well balanced, intuitive, funny and mature beyond her years.
So she cannot walk, her life expectancy? Well how long is a piece of string? Seems strange, but I have gone beyond caring because Nats is a gift and self pity is selfish.
When I ask Nats whether she wishes she could dance she replies “No Daddy”…..I ask her whether she wishes she could walk “No Daddy”…..Why I ask….”Because I have my wheelchair Daddy”
I remember when she was 3 and she kept telling me “Daddy, when I am 4 I am going to walk”………..”Maybe not” I reply……..”If you can’t walk, does it matter?” I ask her…”No Daddy” she replies…..”Well Nats, you may not be able to walk but you can talk can’t you”…..”Yes Daddy, I cannot walk but I can talk can’t I” she replies in a excitable way.
When she was at a friends party last year my friends Father walked up to her…….Nats said to him “I am Natalie and I cannot walk”………
People will say that her disability is all that she knows but it is more than just that. Able bodied kids often get upset or affected by peer pressure because they cannot achieve what some of their peers can achieve............Nats sees other kids walking, running around and I know for a fact that this does not bother her and she is always happy and totally unaffected by her disability……….there is more to her approach that the simple explanation.
I forget that she is disabled……….I enjoy picking her up because I get lots of cuddles……….if I had a wish to either change the past or change the future I would go for changing the future because Nats is who she is because of her disability and I don’t want to change that.
When she was diagnosed I said she would teach me a lot. She has reminded me that you should always remain focused despite the battles and attempts to knock you off course or distract you…in her words “Daddy you have to keep practicing”.
Nats is my world and my friend……….I was talking to her one day and asked her who her best friend in Devonport was. I expected her to say Fern or Anna. She pointed at me and said “you Daddy”…………………my heart still has her pointed fingerprint in it.
Nats is on Valproic Acid which I feel has made a difference. Her hugs seem to have more power……………all a Father can ask is that she has a happy life because that is all we can ask and sometimes “less is more”.
This is a poem I wrote for Nats 4th Birthday which to me sums up Nats
There is this unique girl called Natalie
Who has a special disability
She is so brave and courageous
But still smiles and plays and entertains us.
She is the little girl with hair so golden
Who has a set of wheels worth more than a Holden
She is loved and cherished by all who know her
But especially her proud Mother and Father
She has taught us many interesting things
Especially that life is just a length of string
And still so young at 4 years old
That the true meaning of her life has yet to unfold
Natalie we are here with birthday wishes
And that today and every moment of your life is superdoopalicious.
This story is short because life is too short to ponder and I prefer not to dwell for fear my eyes will swell.
Page 1 of 1
