Friday, January 11, 2013

Day 37-39 The necessary "sheltered" life

We try very hard to keep Sophia engaged in the world around her and protected from the milk proteins in it. She knows not to touch just anything but she is a toddler after all. She wants to play with children in her life and share their toys and play in their homes, but she cannot. I'm usually assumed to be an overbearing mother holding her back from having fun, but the truth is that each tiny exposure she gets (for the sake of a little fun) increases her immune resistance to milk proteins. Each time she increases she's that much closer to a fatal reaction. There is so much that she is exposed to that I have some level of control over. For instance taking her to an open-aired park and protecting her with long sleeves, pants and wet ones.  I just cannot put her into someone's else's environment that I can't control but have to be responsible for. This makes for difficult relationships.  People either understand and stick around or don't understand and leave. I've learned not to get wrapped up in any outside personal relationships because people usually reduce the severity of her condition after seeing how well-maintained it is. It's a balancing act that needs 100% participation.

Sophia has contact reactions almost every day. It's usually some unknown cause and, depending on the intensity of the reactions, lingers around for a couple of days coming and going on it's own accord. Parenting a child with a life threatening food allergy is a constant state of observing, protecting, and treating. That is why it is so graciously appreciated when the people in our lives are careful, mindful, and cooperative with our needs. Thankfully we have a few people to help buffer the fear between us and the dangers in the environments. Every child deserves to be kept safe ours just requires more effort.

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