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When I tell A about her birth, how will the story go? I was scared? I didn't know what to do, how to go on? How to start over? Will I tell her I had to fight to feed her for nearly 2 months with a fight so intense I forgot about Down Syndrome?

By: Sally Felkai

My baby niece was born Easter Monday. Her beautiful face looks just like our babies, like her older cousins and her siblings and her aunties and uncles and parents when we were all babies. My very cells recognize her. The moment I saw her my heart broke open again to eat her up. My ovaries leapt. I want another one. I want her. I want one like her.

Our memories continually rewrite themselves. As we access them and relive them and subtly revise them, they go back in altered form to be reaccessed and altered over and over again until they fit. Fit what?

I want to alter the moment I first saw A's face. She did not look like the babies in our family. Something was wrong and I knew it immediately.

I want to tell the story again over and over until it fits. The view from here is full of love and joy and acceptance. Not only do I recognize her now, I see that she recognizes me. She sees everything, my full of surprises miracle and the drawer out of inner things.

I want to rewrite that moment to imbue it with all I can see from here 5 years later. I want that moment to be like the moment I saw my son, my niece and all of the others. I want to erase the disappointment, the sadness, the despair and above all the fear which still leaves it's almost invisible trail over mine.

I met a 3 month old baby recently. She was at the playgroup we attend with other families that thrive and sometimes struggle with an extra chromosome. She was beautiful. She was perfect. My heart broke open for her too. I can see from here how she is exactly who she needs to be, with her littleness and her wonderfully alert expression surprising her parents and brother continually just like our mysterious surprise child.

When I tell A about her birth, how will the story go? I was scared? I didn't know what to do, how to go on? How to start over? Will I tell her I had to fight to feed her for nearly 2 months with a fight so intense I forgot about Down Syndrome? Like Pi fighting the tiger in his life boat. Will I tell her how quickly she came and how the birth labour paled in comparison to the labour of the heart that followed? Will I tell her that I had grieved for another baby that didn't make it and that there was no way I was going to let doctors probe her in utero to give me the choice of termination? Will I say any of this or will I let her shining presence be enough?

This child doesn't need a story. This child is here and fully present containing everything, reflecting everything, releasing everything and holding nothing. It is enough to just be with her and let the magic work.

So the magic slowly edits that moment, polishing away the edges of fear and sadness to a smooth shine reflecting the gratitude for every second we've got.

This post is reprinted by permission from Sally's blog, Wide Awake Planet.

COMMENTS

Glen
I think all parents of children with disabilities can relate to how you feel. Nothing can prepare you for learning that your newborn baby has a developmental issue, and it's only natural to react in fear at that moment. But it's what we do in the weeks, months and years that follow that really counts.
Lois Bellini
I am looking for a blog to touch base with parents, siblings, relatives or guardians of someone who has Down syndrome and entering the aging process.

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