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.

Sunday, February 19, 2012

Why so positive?

I have deliberately chosen to be positive in this blog. To have no complaints, even about those who stood in our way, disrespected my girl, or failed her in some way. The reason is this.... Nalah taught me to be positive. This blog is a tribute to her. Nalah, herself, was always tenacious, patient and tolerant. No pun intended, re 'patient'. So, in honour of my lovely little girl, I will not share here about all the negativity that swirled around her in terms of others attitudes towards her as a trisomy child, a disabled child, a profoundly delayed child, or a paraplegic, or whatever other label you want to throw at her. This blog is about what she taught me, not the challenges others put in her way, or how society mistreated her and those like her.

So, why this explanation? I do not want to mislead others and suggest there are no challenges involved in parenting a trisomy child. Life became a roller-coaster of uncertainty. We had to fight (advocate) for things that are routine for a child without trisomy. We had a huge/massive learning curve as parents of a medically complex child. We faced our child's mortality on a daily basis, while trying to meet needs of our other child and give her a proper childhood.  Life became something we experienced, intensely, moment to moment never knowing what the next days, hours, moments might bring. However that became bearable. Courage created courage. Strength led to more strength. In fact, this life became joyful as we opened our hearts and minds to the miracle in our arms. What seemed overwhelming was, in short, an incredible love story.

The biggest challenge, the ugliest battles, the greatest pain, in my experience, were found in the society surrounding Nalah. The battles she had to face because of her label. A diagnosis that has been historically considered 'incompatible with life'. Nalah was a joy and we embraced her challenges together with courage and strength. I only wish that society as a whole had seen the value and worth in her very human life, and that she did not face the discrimination that so often surrounded her. I also wish that discrimination had not had such a tangible impact on her life.

So, I am not trying to sugar coat things. If anyone wants to hear the 'war stories' they are told many places, by many families, and we have ours as well. I am grateful for the families who have shared their experiences this way. These stories are invaluable. However, I have simply made a choice that I will not tell those stories here.  I want to focus on who Nalah was to her family, not how others defined her. The little girl, not the controversy around promoting her life or her care.

The stories about societal discrimination towards trisomy I will leave for another place and time.

This space is for Nalah. For us to remember, treasure, and document the little moments that were so 'ordinary' and 'extraordinary' at the same time.

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