Zane Anthony Carson Love
The original account was written in April 2005. The following is an updated story.
I was reading Natalie's Dad's story and I think he is right. Our stories are sad and somewhat negative. But they are emotional, and these are emotional times. When I first wrote about my experience with SMA, my emotions were still so very raw. I still carried so much pain and guilt. Two years on, I'm re-writing my story because I want to remove that raw emotion and give you a better picture of who Zane is.
For Zane's funeral, I wrote the service sheet. I wanted people who never met him to know him. This is Zane Anthony Carsen Love:
Age: 8 months, 1 week
Where Born: Waitakere
Pet Names: Baby Boo, Angel Baby, Zane e Man, Zingy Wings, Cherub, Darling
First Word: Hegilwig
Personality: Flirty, Cheeky, Cuddly & Loving, Playful, Intelligent, Patient, Brave, Determined & Strong
Favourite Colour : Yellow
Favourite Food: Chocolate & Icecream
Favourite Movie: Shrek 2
Favourite TV Programme: Boobah & Party Animals
Favourite People: Shannan, Sinead, Jade, Reece, Sam, Aunty Michelle (mummy 2), Mummy & Daddy
Music: Big Rock Candy Mountain
Accidentally In Love (Shrek Album)
Reggae
Games: Peek-a-Boo, Raspberries on his bottom, Chasing Mummy & Daddy, Mummy tickling his toes with her tongue, clapping, dancing, new toys, being bounced on the bed
Likes: Shrek, fairies, aliens, swimming, being carried around, feeding the chickens, walks in the forest, massages, mummy talking alien, tiger the cat, reading books, bath time & running taps, mummy's shoulder, the wind in his hair, lollipops, running his fingers through mummy 2's hair, talking on the phone
Dislikes: Fairy Godmother & Fiona (Shrek 2), big scary birds, people standing in front of the t.v & interrupting him when his favourite programmes are on
The Shrek Movie: David set the T.Vs so that they picked up the images on the PC and we bought the cereal that had the Shrek PC screensaver CD. I remember Zane waking in the middle of the night and I often used the T.V as a nightlight but I forgot that the last channel watched was of Shrek on the computer. He saw this big green smiling face looking down on him and it took me forever to get him back to sleep. He loved that big green face. There's a part in the movie where Shrek, Fiona & Donkey are in the carriage driving up to the castle to meet Fiona's parents and Zane knew when this part was coming up. You could see the anticipation in his little face waiting for one particular moment…..when the pigeon flies into the castle and splatters. If anyone walked in front of the T.V you'd get in big trouble. Aunty Michelle (mummy 2) bought some Shrek window stickers. There was Shrek, Fiona, Donkey, Puss n Boots and Fairy Godmother. We decorated his casket with them and put Fiona and Fairy Godmother at the bottom so he could kick them.
Favourite People: Sinead his half sister would put him to sleep in the mornings while Mummy was in the shower. She'd zoom him around the lounge & kitchen in his bouncy. Jade his cousin would play with him during morning bath time. We have a huge bathtub. I would sit in the tub with Zane holding the back of his head with the palm of my hand allowing the rest of this body complete freedom. Jade would walk up & down the bath and Zane would buck his belly and swish his arms to follow her. Aunty Michelle gave Zane regular morning massages and tickles. Daddy would zoom him around and Mummy and Zane went for regular walks in the forest to look at the shadows.
Personality: What a big flirt! Our friend Mandy can wiggle both eyebrows and did this to Zane. He did it right back!!! They had an eyebrow dance. Ha-ha.
The Big Rock Candy Mountain : This song was more for us than for Zane. Sure Zane & I danced to it many times…..it was “fun”.
One evening as the sun went down,
And the jungle fire was burning
Down the track came a hobo hiking
And he said boys I'm not turning
I'm heading for a land that's far away
Beside the crystal fountains
So come with me we'll go and see
The big rock candy mountains
In the big rock candy mountains
There's a land that's fair and bright
Where the hand-outs grow on bushes
And you sleep out every night
Where the box cars all are empty
And the sun shines every day
On the birds and the bees and the cigarette trees
The lemonade springs where the bluebird sings
And the big rock candy mountains
In the big rock candy mountains
All the cops have wooden legs
And the bulldogs all have rubber teeth
And the hens lay soft boiled eggs
The farmer's trees are full of fruit
And the barns are full of hay
Oh, I'm bound to go where there ain't no snow
Where there ain't no foe and the wind don't blow
In the big rock candy mountains
In the big rock candy mountains
You never change your socks
And the little streams of alcohol
Come trickling down the rocks
The Breakmen have to tip their hats
And the railroad bulls are blind
There's a lake of stew and a whiskey too
You can paddle all around them in a big canoe
In the big rock candy mountains
In the big rock candy mountains
The jails are made of tin
And you can walk right out again, as soon as you are in
There ain't no short handled shovels
No axes, saws or picks
I'm gonna stay where you sleep all day
Where they hung the jerk that invented work
In the big rock candy mountains
I'll see you all this coming fall in the big rock candy mountains
Angel Baby
Angel Baby now you're free
I can see you playing so cheekily
Running & hiding, playing peek-a-boo
Throwing your toys & having wobblies too
Angel Baby when you earn your wings
Fly down from heaven & come visit me
I'll be waiting to hear your beautiful voice
“Mummy” would be my word of choice
Angel Baby I miss you so
I know someday I'll have to let you go
One day my Angel we'll meet again
Until then my Angel I'll carry this pain
Angel Baby fly wide, fly high
Soar with the birds up in the sky
Angel Baby your soul is free
Angel Baby – Come visit me
Mummy Bear
Today is 15 th September 2007 . I received confirmation today to take the final injection for PGD (Post Genetic Diagnosis). David & I are trying for another baby using PGD to eliminate SMA.
I still carry the pain & guilt. Guilt for things I should have done but didn't know, guilt for the things I did know but didn't get round to and guilt for not spending enough time with him. People tell me I did everything I could and that I was a great mum. I know I did everything I could, I know I had to be strong and that was the only way I could be. But knowing this doesn't lessen the guilt. I know and accept that I will always feel this way.
My love for Zane was pure and true. And I know he felt the same for me. I miss him every day.
Goodnight my Angel.
Mummy Bear
