I just read the most amazing article about the grieving process that parents of disabled children go through. We were told when Sweet Pea was first born that we should grieve, but I wish I had read this 16 months ago! I would highly recommend reading the whole thing for those interested. Thank you to Chase & More for sharing it!
Full article by Ken Moses, PhD is available here: http://www.pediatricservices.com/prof/prof-15.htm
Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental. heart-felt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as pan of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on one's ability to separate from the lost dream, and to generate new. more attainable, dreams.
As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.
In almost twenty years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgment. Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it. Any use of grieving theory as a recipe is strongly discouraged.
And an unrelated, but great exchange between a mother and grown son with DS can be found here. Thanks Kristin!
You know whats so funny, I never worried about what Jax would never do and his disabilities. The one thing I stressed about when he was little was not being able to breastfeed my last baby. He did a little, enough to satisfy me. Now I just wish he would do "typical" Down syndrome stuff!
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