Tuesday, August 6, 2013

Lopsided benefits - children with disabilities

I am a person, who by my own admission, clings too tightly to those things I love.  It always revolves around people but at times it can be directed at a well loved pet, a  favorite shrub,  a place, a sentimental round about of emotions.

I enter this circle with the unintentional intention of never leaving; clinging to those who impact my life positively and at times people who impact it negatively.  I am in a revolving door of emotions; holding on when I should be letting go; seeing through my own tinted glasses virtues and traits in people that are not there, and when I should be running in the other direction, instead I draw the circle tighter.

When you are raising a child with a disability you are subjected to that revolving door of emotions more than is comfortable or natural. You have caregivers come who lift you up out of some very dark spots; give you a reason to believe or hope things can be better, when you have hit rock bottom, and in my case, I cling to them like a  human life preserver, not relying on my own strength and conviction, but instead  allowing them to direct and drive through the commotion, while I jump in the back seat.

While is is natural and necessary to allow others to take over when you are on this long journey of disability support, it is not in my best interest or any parent's best interests to completely turn over the reins and step back. To do so is to court disaster and emotional disintegration.

I have been guilty of that this past year -  attaching myself like a strip of velcro to the vitality of another; and crossing off  all the negatives in my mind, of where this was going to take me.

I cannot hold onto others with an iron claw grip.  I have to allow my strength and resiliance to rebound.  Yes, allow help, support, respite, but don't give up your captain's hat. You will invariably need to get out the sextant and chart your own course in due time.

If you stay in the crow's nest, keep your eye on the horizon, the curve is less steep, the shock less painful when your "crew" abandons ship.

I say this out loud to myself as much as an affirmation as I can muster today as I figure out how to take back the helm, steer the ship and keep my course.

Two years ago when I started the business for Andrew I started it with a sense of purpose and determination. That has not changed. Though I mourn for what I wished would have been a longer relationship with our support person, I have to accept that this is not the way this ship was charted to sail.

I have to allow the drift and believe I can manage the wheel once again.


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