An open note from JA families to others PART TWO: What we would LOVE to hear....

I had an overwhelming response from the “What NOT to say” post, with many requests for a follow up to tell friends and family what they should say to JA families.

In just a few short weeks, you can read all about it in my book “Living With Juvenile Arthritis:A Parent’s Guide,” but I decided not to leave you hanging. The following is another excerpt from the book, and a couple suggestions for friends and family members that want to help, but don’t quite know how, or what they should say to those struggling with JA.

Although this was written from the perspective of our JA family with insights from hundreds of others in our exact situation, I have found that parents of children with different chronic illnesses have said the same things… both in the what TO say, and what NOT to say categories. Its not disease specific- it is situational. If you have a child struggling for their life for any reason, or if you deal with chronic illness yourself, these are all the things you want to hear from those who care about you. If you really want to help more than saying just the right things, stay tuned for the next post. In the meantime, here’s a quick tutorial on things we would love for you to say (and mean.)

THINGS YOU SHOULD SAY:

I can only imagine how hard this is for your family. What can I do to help?—Showing empathy, but not marginalizing what we’re going through means a lot. If you can sincerely offer to help, it means even more.

I’m not very familiar, can you tell me more?—We want to raise awareness for the chronic diseases under the JA umbrella! There are nearly 300,000 children diagnosed, but surprisingly few people really understand what it entails. Raising awareness will ultimately increase funding and improve the chances of finding better treatments or a cure. At a minimum, it will help you understand what we are going through!

I know he looks good, but how is he really doing?—This makes me feel like you care and you really “get it.” Just because he is looking better doesn’t mean things are easier yet. He could look horrible by the end of the day! The cycles with this disease can be pretty wild.

What a great kid. He is so amazing/happy/brave/strong though all this.—Thank you! These kids go through a great deal, and it’s wonderful to be recognized and built up, especially when so much is at work against their self esteem. It’s true too, these kids are amazing!

I know this is hard for all of you. You are doing a great job.—Parents need some affirmation too. Sometimes it seems as though we are making gut-wrenching decisions for our kids on a daily basis. The “right” choice is not always clearly defined. It’s nice to hear when you do think we’ve been doing a good job!

How are YOU?—It’s very nice to be recognized for the things I’m going through in relation to my child’s disease. I feel their pain, and so often I wish I could take it away from them. If I could, I would suffer through it instead of them. It’s comforting to have a friend ask about me too.

I’m running by the grocery/pharmacy/coffee shop, can I grab something for you at the same time?—We will hardly ever ask, but if you offer, we may just take you up on that, especially if it’s not out of your way! A routine errand for you could be an insurmountable obstacle for me today. Don’t doubt the power of a small gesture.

Can I have one of your other kids over to play/pick them up from school while you are at the hospital/doctor?—Just knowing I have a few people who are willing to help and that I can fall back on if I need to, is a huge relief and a worry off my mind. If you say it though, please mean it.

I am thinking of you/praying for you.—If you mean it, this gesture is simple and comforting. It’s nice to know we are not forgotten when we often drop off the face of the earth! Thoughts and prayers are always appreciated. This doesn’t mean we have to break everything down about God’s plan for us—just that we are included in your prayers.

Jingle Bell Run

Mary, Martha & Myositis

Can I Get A "High Five?"

Nelson Mandela

Why We Advocate