11:11 AM

The perfect child

We have very exciting news.  Elora had a mobility test, a test to see how she can navigate her world, and passed.  She will not need to start training with a cane at this time or possibly ever.  We had always thought that her vision was very good, but with out the language to tell us exactly what she was seeing we were preparing her and expecting the worst.  Detecting poor vision in children can be tricky because they use memorization among other work arounds and tricks that help them adapt to the world.  It can seem like they are seeing something when in fact they are just adapting to the situation.
I was not worried at all about having a cane, but being able to see as much as she can is just like winning the lottery.  The thing is that since last year I feel like we have won the lottery over and over again.  She can do so many things already, there were times when I thought we had reached our best case scenario, then she proves me wrong, she exceeds expectations, and then tops that new best case too.
She is an amazing child and we are so lucky to have her as our daughter.  It can be hard in these moments of celebration because I think of how people in her past misjudged her potential, and how much loss resulted in that judgment.  From my point of view it is near impossible to think of any parent making the choice they did, to be so fearful of albinism. I am a part of a online forum for adults with albinism and pigmented parents of children with albinism. Until recently I was only in touch with other adoptive parents who have children with albinism.  We are different in one very big way, we all chose to have albinism in our lives, we are excited about children with albinism.  The folks in the other forum did not choose albinism.  To them albinism is an unwanted surprise, a source of worry, something to be avoided.  I recently also heard a conversation about genetic testing for a fetus to determine if the child would have albinism so that you could have the option to terminate the pregnancy.  These were parents in North America with every resource on the planet available to them.  They were scared, they were grieving.  

In this documentary posted in the group http://www.cbc.ca/ideas/episodes/2013/02/18/the-imaginary-albino/ a Canadian mother of a grown healthy self sufficient adult with albinism is obviously still grieving.  We hear her wistfully talk about how all her other friends had "perfect children" about how she felt they could not have a second child because it would be irresponsible when there was a 25% chance they would have another child with albinism.

I chose to have a child with albinism and I struggle with anger and understanding at times for the choices our daughter's first family made. The way I see it her special needs are 98% about her time with out a family and only 2% about the symptoms of her albinism. It really hurt my heart to hear a mother describing a "perfect" baby. 

I do have a perfect baby and I have never grieved for one millisecond that my perfect child has albinism, it's just a simple fact of adoption I suppose. We had been approved for several special needs when we were adopting and our first thoughts on seeing that she had albinism was how lucky we were, like we won the lottery, she was so healthy! We knew nothing about her vision at that time but I had friends who's children were so delicate medically that they died before their parents could finalize the adoption, we could at least be some what confident that she would be safe until we arrived. My experience with albinism has only ever lead us to feel lucky.

All of that being said, I am still happy to hear these words and scenarios because they help me see to the emotions and fears of Elora's first parents. If these privileged parents are so impacted by having a child with albinism I can better understand what Elora's parents were facing emotionally, maybe they did not have access to correct information when they looked for help and support.  Myths about "albinos" are prevalent and it is rare enough that most medical professionals are by no means experts in the condition. With understanding comes empathy and I hope, for me and her, some peace.

P.S. I highly recommend that radio documentary, it is great!

1 comments:

Paige said...

This is a great post about how we fall in love with our children and don't really even see their special needs... she is adorable!