As many of you may know, the reason that we found out that Paige had Down syndrome prenatally is because we could not see her stomach or kidneys on numerous ultrasounds, and we were told she most likely had Trisomy 13 or 18 - trisomies that are almost always fatal.
The test for T21-Down syndrome - is just kind of thrown in with the amnio testing that was done. I've always believed that is one of the reasons we so easily accepted T21, and didn't have any mourning period like many families do. We were just so glad that she had a condition that was compatible with life.
And still...we had to pray. With no stomach or kidneys, she would not survive at birth. We hoped that she would live long enough to retrieve organs to help another baby live. We kept this information to ourselves, as we wanted to celebrate every moment that she was with us, before and after she was born.
Even if she were to be taken from us, we would not let that rob us of the joy we had in hoping for her, wanting her, waiting for her. We were determined to cherish every single moment of her.
Joyfully, gloriously, amazingly, she arrived screaming and alive. A true miracle had arrived to our family. Hours later, she would crash, and we would learn that she had esophageal atresia, and a tracheal fistula that was causing her to basically drown and dehydrate at the same time.
Again, miracle after miracle came to us, and she survived. She is a healthy, happy, amazing 10-year-old little girl now.
It may be hard to understand, but had she not lived, she would have still been our miracle. She was so loved before she was even here to cherish. And had she been born alive and been able to donate an organ, she would have been someone else's miracle too.
No one should ever, ever think of her as 'less than' anything.
My child has empowered me in great ways; I am a different, better person because of her. I understand gratitude in a way that I never would have been able to in any other way.
And, so, when I saw this video, my heart went right back to those days. I admire Eliot's parents so, so much, and can only hope that I would have been half as brave, and half as aware of the great miracle they witnessed.
99 days - 99 balloons - could YOU change the world in that short of time?
Eliot's webpage.
3 comments:
Isn't that an awesome video? I too was deeply moved. Much love Betsy, I'm so glad Paige defied her odds and is changing the world every day!
Isn't it amazing......I had friends whose first child had Trisomy18. They, and their parents - both sets of grandparents, were at the birth. They got to bath him, dress him, hold him, tell him their hopes and dreams and love their little boy, until he was called home to heaven a few hours later.
What really impacted me about the whole video [and I have now since read the whole blog] is that I look at Eliot as living 99 years....that each day celebration of his life, was a precious as if he had lived a whole year.
My heart was heavy, but also over-come by love and joy....as Eliot was wanted...he was welcomed, he was loved....he was cherished, and he will forever change those that know of his existance.
Wow! That is amazing. I am so impressed with these young first-time parents that they were able to embrace and celebrate Eliot's life for each moment, every day of it and didn't let grieving for what might have been get in the way of joy for what was.
Very inspirational.
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