Showing posts with label trisomy awareness. Show all posts
Showing posts with label trisomy awareness. Show all posts
Wednesday, April 4, 2012
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.
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.
Saturday, February 4, 2012
Love does not count Chromosones
Nalah loved her little Sophie teething toy. Nalah teethed from six months of age till two years. A good chew toy was essential. We had about four Sophies at any given time, keeping them sterile as possible for her immune system. This photo brings back such good memories of cuddles. I love how Nalah snuggled with her Momma, always touching me gently and resting close to my heart. This little dress is one of the many she had matching her sister. Just this morning Karis asked to wear one of the dresses that remind her of Nalah. Having family time together was such a blessing for us. Nalah is a sweet sweet child and it makes me incredibly sad that society, in general, considers lives of those who are genetically different to be less worthy of living. I wish we lived in a world where difference was accepted and people were valued for who they are, regardless of labels. As any parent knows, loving a child is an incredibly rewarding experience. And as a dear trisomy mommy friend (Katie Weaver) so aptly says "Love does not count Chromosomes".
As an aside, there are wonderful trisomy awareness logos on various items for sale at cafepress.ca or cafepress.com. A 30% off sale is on this weekend. My family is wearing trisomy awareness t-shirts lately. A way to bring awareness to a condition that is often mis-represented and misunderstood.
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