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

Mar 19

Dear Marlo,

On this night you are about to give birth to one of the most beautiful baby girls you can ever imagine. But in the second she is born, you will be filled with sense of grief because she has Down Syndrome. You will feel that her future and the future of your family is uncertain and perhaps bleak.

The reason I came back to write you this is to tell you that you are completely wrong. What you cannot imagine yet is the happiness that she will bring to every single person she touches. You will call her Chiara, as that name means light, and that is exactly what she is.

Believe me when I tell you that you will one day wonder why you were ever afraid. Chiara responds just like any other child. When you come home from work at night, she lights up when she hears your voice. You creep in and say “where are my girls?” to which she starts giggling with her sister. She laughs so hard that she squeezes her eyes shut. The stress of your day disappears.

Chiara has a kind of knowledge behind her eyes. She knows things. When she looks at you, she tells you, “Don’t be afraid, mummy. I will teach you all you will ever need to know.”

In some ways, having a child with Down Syndrome is a challenge, because she requires extra teaching, extra care by way of therapists, etc. But is that really a challenge? Sometimes I think not. So what if we have to think about our schedule a bit more and so what if every milestone she reaches is made up of tinier ones?

This has been a joy, as we celebrate every tiny stone she uncovers. We have learnt as a family to celebrate all the small things in life. Even her older sister, who is still a baby too, claps her hands and says “Yeah, Chiara” without any prompting.

So, Marlo, please know that all the fear you will feel in your heart will be replaced by more love than you have ever known. And the love won’t just be for her….It will be for Amelia, who will not bat an eyelash because Chiara has Down. The love will also be for your husband, who will show that he is a man of substance and character. He is the best father you could have hoped for.

So, let Down Syndrome into your life with open arms, and you will be letting in love.

Mar 16
I love #momentCam #ds #downSyndrome awareness month #t21

I love #momentCam #ds #downSyndrome awareness month #t21

Mar 02
Daddy and Daughter #tatoo #ds  #chubby #baby #beautiful #life #morning

Daddy and Daughter #tatoo #ds #chubby #baby #beautiful #life #morning

Feb 23
Modern family

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