Sunday, January 12, 2014

Bee-Worthy Share: Thought of the Month

On our Facebook page, which you can join as an audience support member by clicking HERE then clicking "like" there, we look forward to several regular occurrences:
*connecting with new families who stumbled upon the page and thought they were all "alone" facing a diagnosis of hydranencephaly

                          sharing our bees...

and the "Thought of the Month" from our friends at You and Your Disabled Child on Facebook... 

Not only are theses thoughts easily to relate to, but they're perfect for allowing me to discuss a topic that myself, our hydran-families, and most families of an individual with special needs face. 

For January 2014: "Don't ever pity the parents of a child with disabilities - I can guarantee they are likely to be stronger than you, have a more generous heart than you, understand the real values of life more than you ever will, suffer more heartache than you could possibly imagine and take it in their stride, have patience in volumes beyond your comprehension and will undoubtedly experience unconditional love of a kind that will probably never come your way. Admire them, respect them, accept them, sympathize with them, support them - and maybe even be in awe of them - but don't EVER pity them, that is something they just don't want or need."

It has been nearly 6 years since I became a parent to a child with complex medical concerns of the biggest kind, a terminal condition; that moment Brayden was diagnosed with a brain abnormality during an ultrasound and we were encouraged to terminate the pregnancy. The worst emotion to be shared with me from well-meaning family, friends, and strangers was (and still is) pity. I know it is not intentional, simply an attempt to show empathy and understanding, but to be the subject of pity is a not so nice place to find yourself.

If you have a parent to a medically complex child in your life, there is very little you need to do to be supportive of them. 

simply "listen" and just "be"

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