Talk About It Tuesday - Explaining Lupus to Children

Having two children of my own, I found this article published by the Lupus Foundation of America very helpful. Check it out!

Explaining Lupus to Children

You have lupus and you don't understand it -- How can you explain it to your children?

By Robert H. Phillips, Ph.D.
Center for Coping with Chronic Conditions

This is a very common problem. How should you explain lupus to your children? For young children, less of an explanation will be possible, perhaps only including some reassurance that you'll be OK. With older children, explanations can be more detailed. Encourage questions. If your children really don't want to ask you anything, they won't. But they know they can if they want to. Upsetting thoughts kept inside can be destructive.

Questions from older children will probably be more direct and more specific. Resulting discussions, if handled properly, will not only be helpful for your children, you'll enjoy them. Great feelings of closeness can result.

The way you answer questions depends on the age of your child as well as how much information is desired. Provide answers specifically for the questions. Don't go into detail, unless your child asks for more information. Try to determine what the child really wants to know.

Be careful that you don't frighten your child. Be careful of what you say. You know what you mean, but how will it be interpreted in your child's head? Think how you want your information received.

You want your child to share feelings with you about lupus. Showing that you accept having lupus, and that you don't mind (and even welcome) questions about it, will keep the lines of communication open.

Specific Issues

Frequently, children will ask you (or think about) whether you're going to die. They may see you in bed a lot. They can tell you're not able to do what you normally do. You may be having difficulty "getting around" adequately. You may need a lot of medical attention. What you say then? Reassure them that you're not going to die. It might be helpful to bring them with you to speak to a professional (your physician or your child's pediatrician, for example).

What happens if lupus physically prevents you from being a "good parent" as you'd like to be? How do you explain to your child that you can't take him/her somewhere, or that you can't do what you promised?

Children don't want to understand when they're upset. Start by emphasizing that you have no choice. Try to make "deals". Remind your children repeatedly that there may be times that you won't be able to do much. Work out ways that some pleasant time can be enjoyed together when you do feel up to it.

Spending "quality" time with your children (special time where you really share feelings and activities) is more important than "quantity" time (how many minutes or hours you're physically with them). Spending quality time, talking with your children, and being open and receptive are the most important ingredients in helping your children handle your having lupus.

Monday's Moment With Author Paulette Harper Johnson

Join me in welcoming author Paulette Harper Johnson to Hold Your Hope!

Who is Paulette Harper Johnson?

Paulette Harper Johnson is a wife, mother, grandmother, writer, speaker and child of God. I am the visionary behind “Write Now” releasing the word in you literary workshops. Workshops designed to coach aspirating authors in the areas of creativity, development and publication of Christian books.

Can you tell us what your latest book, Completely Whole, is all about and what you hope readers will take away from it?

Completely Whole brings to light those issues that have blocked our path to total wholeness. Everyone desires to be whole and embedded within Completely Whole are keys that will assist the reader in identifying, facing and eventually conquering those places that have kept them from walking in wholeness. Areas that have been a constant struggle for one to obtain victory, be it forgiveness, substance abuse, or divorce. Completely Whole deals with the whole man spirit, soul and body.

3 John reads “The Pastor, to my good friend Gaius: How truly I love you! We're the best of friends, and I pray for good fortune in everything you do, and for your good health—that your everyday affairs prosper, as well as your soul!” It is the desire of God that we prosper spirit, soul and body.

What I want readers to take away when they read Completely Whole?

My focus in writing is to enrich the lives of my readers. I had a reader make this comment about Completely Whole “It speaks” and that’s what I want it to do. I want them to come away knowing that they have the ability to live a full enriched life.

I want to make several impacts on readers: First I write non-fiction inspirational books so this means my books should have a lasting effect on a person’s spirit. Inspiring and encouraging them to pursue with passion a better fulfilled life. I want my writings to give strength, encouragement in the time of need. As they read Completely Whole, I want my writings to engage, stimulate and edify them spiritually.

If someone were to write a book on your life, what would the title be, and why?

WOW that’s a hard question. I like the title “A life preserved” I pick this title because this is exactly what God has done in my life. He has preserved me for the season I’m living in right now. Years ago going through one of the most challenging times I felt my life was pretty much over. I faced great insurmountable odds of every recovering from the loss of family, ministry and close friends. Yet God in His infinite wisdom knows how to pick up a shattered life and bring one to a place of restoration. When all hope was gone and life became unbearable, God stepped in and not only intervened but has totally transformed my life better than I could have ever imagined. A life preserved for such a time as this.

What 3 nuggets of wisdom would you offer an aspiring writer?

Three things I would give new authors: First is to be patient. Connecting with your audience and branding yourself will take time. Especially for new writers, the market is flooded with books for readers to choose from so by keeping this in mind you must be able to patiently wait your time to shine.

Secondly: I would suggest promote, promote, promote. I can’t stress that enough. Your book/books will stay alive as long as you keep them if front of your audience. No one is best suited than you to promote and market your products. If writing is your passion you will continue promoting and marketing your books even when it appears no one is buying.

Thirdly: Use social networks to connect with readers. By joining social networks it presents a platform for you to share with your readers your events or next book release. Readers must be able to find you either on your website or any social network you have joined.

Had you not followed your dream/answered your call and become a writer, what career path do you think you would have taken?

Right now I’m living in my purpose. I’m a minister, inspirational speaker and life coach. Had I not answered the call to write, I believe a void would have been in my life. Actually writing was birth from the personal pain I went through years ago. My first book “That Was Then, This Is Now” came out of going through a devastating divorce.

What has been your most memorable encounter with a reader so far?

The most memorable encounter with a reader was when I received an email telling me how my first book That Was Then, This is Now brought her comfort. She had been going through some hard times and my book brought her encouragement amidst her difficulties.

Has a review or profile ever changed your perspective on your work?

Not at all. Actually when I hear how my writing has made an impact on someone’s life, that is so rewarding to me. These types of testimonies keep me wanting to put more quality books in the market.

In an interview with Books In Sync, you were quoted as saying that you chose to write non-fiction inspirational books because "There is a need for people to be inspired and encouraged." I wholeheartedly agree. Can you tell us who or what you read for inspiration and encouragement?

I generally read books written by other inspirational speakers such as TD Jakes, Joyce Meyers, Miles Monroe just to name a few. I’ve grown to enjoy some Christian fiction, those stories that have a restoration message will get my attention.

What is your HIGHEST HOPE for your writing career/ministry?

My highest hope for my writing career is to write full time. I would love to devote all my energy to writing and speaking through workshops, seminars and conferences.

What else do you want readers to know?

On a personal note: I enjoy jazz and gospel music. I love playing cards especially spades. I love traveling. I am also a licensed and ordained minister.

Literary speaking: I would love to do a book discussion with your book club and or women’s group. I am available for a phone chat and teleconferences. Visit my website for all events, speaking engagements, workshops and book signings (I might be in your area) I’d love to meet those who have embraced my writing without them there is absolutely no reason to continue writing.

I’m currently working on two projects. Victoria Living for Moms which is an anthology is slated for release in May 2011 and my own book For Such a Time as This will also be released in 2011.

How can readers reach you and find out more about your books (e-mail, website,etc)

There are excerpts and reviews of my books on my website:

www.pauletteharper.com and I’m on facebook under Paulette Harper-Johnson

And via e-mail: info@pauletteharper.com

I also have a blog Empowered to Proper which I am a blog tour host: www.pauletteharper.blogspot.com

Korika, I want to thank you for the invitation to be featured on your blog. It truly has been a tremendous blessing.