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Apr 6, 2014

Dear Society

Dear Society:
The other day, while carrying my daughter, I approached someone with giddy excitement. I waited patiently until the person could give proper attention, at which time I explained what must have seemed a trivial event about my child’s life. When I was done with the encounter, I walked away – and though the person was polite and I did not actually witness it, the “eyes in the back of my head” detected an eye-roll, as the person wondered why I acted in such a weird way about something of such little importance.
So, Society let me apologize in advance. This will happen again. For you see – my daughter lost her first and second teeth only one day apart, and I will share these events with a childlike temperament whenever they happen.
If you are not aware, my daughter has Rett Syndrome. She's a little smaller than normal, but in most ways she appears normal at first glance. When not transported in her wheelchair, many simply assume she is just younger than her true age. But she doesn’t walk; she doesn’t talk; she cannot even point to her mouth to show anyone her missing teeth.
I don’t say this to elicit sympathy. We don’t need any.
I say this to explain MY behavior. Because she cannot share these events as would any typical child, I must do it for her, in her presence, so that she may have the experience she cannot have under her own will. I must act silly and childlike by proxy as she witnesses the experience so she may be a part of it. Even though she cannot speak about it or point to her mouth with innocence and unsophisticated glory, I will do those things for her.
So, Society, forgive me for my peculiarities. I may do things you do not understand. I am not angry by your responses, but I want you to know my loyalty to her is greater than my loyalty to you. So please be tolerant. I act this way to give my daughter the experiences in life that the random mutation robbed from her. It is the least I can do for her.

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