One of the blogs I follow, "5 Minutes for Special Needs", posted on the topic of isolation. Today was one of those days when I pondered this feeling of being alone.
Roa and I are joined at the hip, it seems. So, I am never truly alone. However, I feel very isolated in other ways.
I have daily visitors- armed with therapy balls, wedges, equipment and toys for distraction. I get out of the house to visit additional therapists, the toddler classroom, or stores with all of that equipment and toys for distraction. Occasionally, I take a little guilty ME time and go out for dinner with friends, or Bryan and I will get out for a date, but overall, it is just.. The King and I.
Even on the days that I am surrounded by other parents of toddlers, family or friends. There is that sense of separation. The Unicorn among the horses, if you will. No one in our circle of life can fully grasp the day in and day out living Cerebral Palsy.
Those that attempt to ask questions and want to be apart of it, many times do so with caution--How do I ask this question, how can I appear knowledgeable and interested, what can I talk about that doesn't offend?
Others just flat out don't ask and aren't interested. It is those family and friends that we find ourselves distant from. Not because they don't focus simply on Roa in our conversations, but because they do not acknowledge our grief, hope, and ambitions while living this unwelcomed life of reality. Living Cerebral Palsy.
On the other hand, we have great friends and family who participate in our life such kindness and caring. Who jump up and down with us when Roa does a GREAT feat, no matter how small.
But... they also share with me their child's accomplishments and latest milestones sometimes with a tone of guilt or sometimes with such pride and joy. Either way they share, once again,... I am at the place..... Isolation. Separate.
Even in every day life, such as Roa's first visit to Burger King last Saturday. Roa attempted to sit in the restaurant high chair, wear his Burger King crown, and carefully balance his little body while eating the first fast food french fry of his life... We were set apart. Viewed from onlookers as different.
The Unicorn waiting to be like the rest of the horses.....
A Unicorn is a majestic beast, however. One that is used to standing tall and doing it's own thing. One that is accustomed to being Isolated and viewed in a different way. Isolation leads to self reflection, after all. Self reflection leads to the desire to better yourself by helping others in life understand differences. Embrace others and focus outside the corral of horses.
So, we will embrace Isolation for today,... the King and I. and carry on living Cerebral Palsy.
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