Friday, February 08, 2013

Your input

I'm actually working on this book every day. Every day I'm doing something to move this book forward. And I've decided to do it in public rather than in private. And I'm enlisting your help.

Here's a comment I received from one person on my post from day before yesterday.
AnonymousKaren Ras said... "Glad you're writing this. Even if there are other books on the same topic out there, we can always learn from the different circumstances and varied solutions. Please write truthfully about the real stress a handicapped child puts on a marriage, and how you work on that every day.
Much love and best wishes."
This was great advice and something I will take seriously.

Tomorrow, the Charming and Beautiful Susan, Allie, and I will drive an hour and a half North to see Susan's folks. I've prepared a list of questions to ask and discuss on the way up. I'll record the conversation and use it in the book. The topic of the questions will revolve around what Karen had suggested: "Please write truthfully about the real stress a handicapped child puts on a marriage, and how you work on that every day." Good stuff, Karen.

Here are the questions I've prepared:

  1. How long did the worst of your grief last?
  2. How do you deal with grief now?
  3. Do you feel like you deal with it well?
  4. How could you deal with grief better?
  1. what is the most confusing thing about being the parent of a disabled child?
  2. what is the most confusing thing about parenting our particular disabled child?
  1. how do you feel when you see a "normal" child?
  2. when your ordeal first began, how did you deal with seeing normal kids?
  3. has normal been redefined for you?
  4. what is your new definition of normal?
  1. what happens when you meet other parents at a playground?
  2. how does Allie do at the playground?
  3. what are you able to do with Allie at the playground?
  4. how has going to a nearby playground become therapeutic bonding experience for you?
  1. do you ever feel bitter?
  2. what about?
  3. how deep does it go?
  4. do you think it's permanent or is it something  you'll eventually be able to work through?
  5. how will you work through it?
  1. do you have an easy life?
  2. do you think others have it easier than you?
  3. do you think it will ever be easier?
  4. has it gotten easier?
  1. do you get enough help?
  2. who helps you the most?
  3. who do you wish helped more?
  4. do you think your expectations of people are too high?
  1. what is most painful about life?
  2. does your pain have a purpose?
  1. do you feel isolated?
  2. is this something that you've done to yourself or is it something that's happened to you?
  3. do you think you'll always feel isolated or is this just a season you're passing through?
  1. where do you get relief?
  2. have you always sought out healthy relief?
  3. has seeking peace taken you off course?
  4. do you find solace in your relationship with Jesus?
  5. what verse or verses of the Bible bring you peace and solace?
  1. does having a special needs child help or hurt your faith?
  2. what do others say about your faith?
  3. do you feel like you live up to what people say about you?
  4. how do you share your faith?
  1. how has your love changed or grown?
  2. how do you know God loves you?
  3. has your capacity to love grown or diminished?
  4. is it harder or easier to love your neighbor now?
What would you contribute to this list. Share your thoughts with me in the comments. If you want to know, someone else probably will want to know, too.


Anonymous said...

One of the most challenging things for me as a father of a special needs child is pondering the future. How long will we be able to give our son the care he needs? Physically, will we be able to care for him? What if we are forced to put him in a home? What if we lose his insurance coverage? These are all thoughts that creep up on me if I don't take it one day at a time

Chris B

Bryonm said...

Great questions, Chris B. I will definitely discuss them with my wife and see where the discussion goes.

We definitely wrestle with these questions. We worry about our health since we are actually the grandparents in our situation. We have good insurance for now, but how long will that last? What's next?

Good Stuff, Chris B.