Beyond Amsterdam
If you are the parent of a developmentally disabled child you have heard this one:
You booked a flight to Paris - it was your dream destination - but somehow your plane landed in Amsterdam. Now, Amsterdam is not Paris, but it has its points. There is beauty there, you can see things you never imagined, you are entranced with its flowers, the lovely buildings. No, it's not Paris, but it's still great. And you feel richer because you have visited a place that you would never have chosen, but which has brought you great joy.
This story is used to explain the initial confusion, but eventual joy in the experience of being blessed with a developmentally disabled child.
It is a wonderful analogy, and certainly does capture the experience of a parent who is living a different parenting life than was imagined or dreamed about. However...
Your child is now an adult. As comforting and empowering as the Amsterdam story is, it does not capture the experience of the parent of an adult child with developmental disabilities, especially when those disabilities severely limit the goals your adult child can, or will, achieve. I'm not sure what story would.
I am in the midst of the struggle to navigate this new country. When my son was young, I dreamed of an independent life for him. Although he does have some degree of independence, the reality is far from my dream. Again I am in a country I did not plan to visit.
I don't wish my child to be "better". I dreamed, as every parent dreams, of a rich, full life for my child. What I am struggling with is the disconnect of the reality from this dream. And what is in the future for my child? How do I encourage him to reach for something better, yet step back to give him room to carve his own path?
These are questions that EVERY parents has, and struggles that ALL parents wrestle with. For the parent of a developmentally disabled child however, the struggle is also mixed with a great deal of anxiety - that child will never be totally independent, will always need supervision, support, guidance. And what happens when we, as parents, become disabled ourselves...or die?
You booked a flight to Paris - it was your dream destination - but somehow your plane landed in Amsterdam. Now, Amsterdam is not Paris, but it has its points. There is beauty there, you can see things you never imagined, you are entranced with its flowers, the lovely buildings. No, it's not Paris, but it's still great. And you feel richer because you have visited a place that you would never have chosen, but which has brought you great joy.
This story is used to explain the initial confusion, but eventual joy in the experience of being blessed with a developmentally disabled child.
It is a wonderful analogy, and certainly does capture the experience of a parent who is living a different parenting life than was imagined or dreamed about. However...
Your child is now an adult. As comforting and empowering as the Amsterdam story is, it does not capture the experience of the parent of an adult child with developmental disabilities, especially when those disabilities severely limit the goals your adult child can, or will, achieve. I'm not sure what story would.
I am in the midst of the struggle to navigate this new country. When my son was young, I dreamed of an independent life for him. Although he does have some degree of independence, the reality is far from my dream. Again I am in a country I did not plan to visit.
I don't wish my child to be "better". I dreamed, as every parent dreams, of a rich, full life for my child. What I am struggling with is the disconnect of the reality from this dream. And what is in the future for my child? How do I encourage him to reach for something better, yet step back to give him room to carve his own path?
These are questions that EVERY parents has, and struggles that ALL parents wrestle with. For the parent of a developmentally disabled child however, the struggle is also mixed with a great deal of anxiety - that child will never be totally independent, will always need supervision, support, guidance. And what happens when we, as parents, become disabled ourselves...or die?
You and Kenny have given Lacy so much he would never have had without you. I know that you didn't end up where you planned to go, but I don't know anyone who has done a better job of enjoying their unexpected destination than you have done. Your ability to walk through the many trials you have faced with a bright smile and positive attitude have been an inspiration to me on many occasions. I love you guys and our tender-hearted Lacy who has a life because of your willingness to love and give unconditionally.
ReplyDeleteLOVE your blog. Some days we feel like George Bailey, no?
ReplyDeleteFavorite line from post # 1:
"Again I am in a country I did not plan to visit"
I love the name of your blog. Reminds me of a certain Christmas special song. Ellion loves that song. You and Sandra both starting your blogs in the same week — did y'all cook this up or just on the same wave length. Again, another reason we need to travel together.
ReplyDeleteGlad you started this blog. I think it's good to give others a view from your perspective. I'll definitely look forward to reading more.
ReplyDelete