Jun 05
#conifer tree #kew gardens just been to a wonderful exhibition and awards #dsa #downSyndrome #t21

#conifer tree #kew gardens just been to a wonderful exhibition and awards #dsa #downSyndrome #t21

#my perspective photographic awards #dsa #downSyndrome #t21 #ds wonderful photogtaphers who happen to have ds #kew gardens

#my perspective photographic awards #dsa #downSyndrome #t21 #ds wonderful photogtaphers who happen to have ds #kew gardens

May 17
#love #gig #lights

#love #gig #lights

May 10
I tweet, therefore I am…guest tweeting on #Shiftms , one of the best sites for cool ppl w #multipleSclerosis

I tweet, therefore I am…guest tweeting on #Shiftms , one of the best sites for cool ppl w #multipleSclerosis

Apr 26
The mundane.  #souf #London

The mundane. #souf #London

Apr 23
Wow. The back  of the #royalLondon hospital.  So much history.

Wow. The back of the #royalLondon hospital. So much history.

Apr 21
She has her own style and attitude already.  Lol

She has her own style and attitude already. Lol

Apr 16
#multipleSclerosis #myelin #lesions #ms

#multipleSclerosis #myelin #lesions #ms

Mar 26

Have you ever seen one of those flip books, where it looks like the figure is moving when you quickly flip the pages?

Well imagine a child without Down Syndrome is that animation….They start out with goo goo gagas and smiles….then you blink and they are sitting up….You blink again and they are walking.

Imagine that you look closely at the flip book and look at every single frame. I always used to do this. I would look at each page and see the miniscule amount of movement that it takes to make the book work. On each page the figure has just moved a hair.

Well that is what it is like having a child with Down Syndrome…

Every mile stone is comprised of several steps of just moving a hair. I call them MINI MILESTONES. You see every single fine nuance that goes into a new movement.

Watching Chiara learn to sit up has been exciting, frustrating, fascinating, and illuminating, all in one. Each step of it has stopped my breath, as I thought she would get further, but she didn’t. She would stay on each step for weeks.

When I say, “step,” I mean, she would move a hair in the right direction. She would get to her knees and bounce back for weeks on end! Each time, I would say, “yes! go! go! go!” and then…”oh…almost!”

But then she WOULD get there! And the relief and happiness I felt was tremendous! And Chiara was so happy too!

image

We have learned to celebrate each page of our “flip book”. We look at every tiny step as a glorious step in the right direction. We celebrate it. We REALLY celebrate it. I have never drank so much champagne as I have since Chiara started reaching milestones, and the mini milestones…

My husband and I love having an excuse to celebrate, and she gives us reasons every day.

ps- I had read that couple who have a child with a disability have a higher rate of marital success. This first shocked me, but now I see why it is!

Amelia says “help!” Haha Chiara is really moving now! #t21 #ds #downSyndrome #milestones

Amelia says “help!” Haha Chiara is really moving now! #t21 #ds #downSyndrome #milestones

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