One of the best books I have read about having children with a disability is ‘Lessons I Learned From My Child’. I have loaned it to a friend and can’t remember the authors at present, but it was written by a psychologist, and parents, with parent stories for illustration. It was published in New Zealand and takes you through the process/stages of grief when there is disability in the family.
The ‘lesson’ I most appreciated from the book was that when there is disability in one’s family, especially a child, grief is usually perpetual. Death is an event, and although the pain and loss is revisited throughout life in varying degrees and hopefully with decreased intensity, the event has passed. When a child has a disability grieving events keep coming; milestones reached late or not at all, life experiences not to be had or that show up ‘difference’…I appreciated this the most because I learned that my grief was normal even in these circumstances, and I know that grief needs to be experienced – allowed – in order to process through it regardless of how many times I face this process. My recent, and not-yet-complete, journey through a grief of another kind confirms this to be true, as does much research.
I have learned many other lessons from and because of my children also. As a result of needing input from physiotherapists, occupational therapists, speech therapists, early childhood educators and specialist teachers, orientation and mobility instructors (and often doing these things alongside families with myriad disabilities), I have learned much about the human body, mind, soul and spirit. I have learned much about the impact of each of these on the other; the impact of relationships on the individual and vice-versa; the impact of the inner self on development, interaction, attitude, influence…
From my children specifically, I have learned not to be afraid (though I often still am). My children have taught me what it is to accept myself, because they do that of themselves. As their parent, I have learned that as one of their primary care-givers and instructors, I contribute to who they are but I do not entirely make them who they are. The uniqueness of every individual is beautiful, mysterious, challenging, enlightening, confusing and a wonder to me.
There is so much in others that I wish to be a part of me. Some of these things I can learn and develop, but some are not mine to have. They belong with someone else as parts of me are mine alone, and I need to be ok with that. To be reverently made is a wonderful truth.
Embrace yourself and those around you, making each of us more of a wonder – daily.