A butterfly lights beside us like a sunbeam.

For a brief moment it's glory and beauty belong to our world.

But then it flies on again, and though we wish it could have stayed, we feel so lucky just to have seen it.

Tuesday, April 3, 2012

Peek - a - Boo

Peek - a - Boo! Nalah's Daddy spent a fair bit of time attempting to teach Nalah this game. Looks like she caught on. This photo shows Nalah in her first year of life...sometime prior to July 2009. Nalah was on high-flow oxygen for a number of months after 'coding' at four months of age. Nalah had what is termed a 'critical' or 'difficult' airway. Despite all her medical complexity, she found energy to play games with us, and simply love and be loved. Our dear little girl.

Smithsonian Folkways - You Are My Little Bird - Elizabeth Mitchell

This is one of our favourite  musical artists. Nalah and I spent many lovely days listening to this music.

Smithsonian Folkways - You Are My Little Bird - Elizabeth Mitchell

It's All Right - Nalah's Very, Very Favorite Song

Nalah's Smile

I was taking photos of Nalah one morning, and as Nalah heard the familiar sounds of the camera on my iPhone, she looked at me and broke out in this grin. I believe she was posing for the next photo. This smile melted my heart that morning, and still does. My lovely girl. Nalah gave and received so much love. Moments like this were breathtaking, especially after being told (by medical community) that she would not engage in a meaningful way with her world. Well, this is how she engaged with us. Love you my girl. For the record, Nalah smiled her first week. It brought me hope, to know she could express happiness, when she fell into heart failure at eight days of age. It helped me have hope there was a quality of life to be saved. Nalah is about 22 months old in this photograph. This photo also has an uncanny resemblance to my childhood photos. I am grateful to have experienced this moment with her. 

Monday, April 2, 2012

Pocketful of Sunshine - Natasha Bedingfield - A Favorite Song of Nalah & Karis

I Miss You

Nalah, you blessed us in countless ways. 
As Karis says "Don't you wish you could go back to the good old days Mommy? The days when Nalah was here with us?"
I do miss those days. 
You brought such joy and taught us to love so deeply.
No one will ever replace you.
There will never be another You.
Your personality always shone bright through whatever life threw your way.
Nalah Mari....
Beloved, wished for child.

Mommy misses You.

We Are The World Of Trisomy 13 & 18 -- 2012 Awareness Video .m4v