*'John, she is going to die. Today she couldn't get up the 
   stairs, I had to carry her outside to the hammock to rest.' 

  * 'Her blood today was, (some horrible number), worse than yesterday.' 

  * 'We are going to lose her. (Where I wondered?)' 

  * 'She'll be in the hospital in one week', (and then the count down began) 

  * 'She will never survive the SURGERY. She may HEMORRHAGE, John, BRAIN HEMORRHAGE, the doctor told me.' 

 * Be honest, above all. Discuss with your children (at their age levels) what their illness is all about, and what will happen to them in the hospital. When you don't do this, kids imagine the worst!

 * If your conversations are private, take them far away from your      children. Children hear everything. Don't assume they are sleeping when  their eyes are closed. I wasn't!

 * Explain the terminology. Surgery, operation, testing etc. 

 * Allow your children to express their fears, and validate their feelings. There's nothing worse than feeling scared and confused and not being able to talk about it." 

"Here are some things that used to made me feel so guilty for being sick and needing to go the doctor. My parents would say, and I certainly will never forget:

 * 'If I had a nickel for every time I took you to the doctor I'd be a rich person.'

 * 'Doctors, doctors, doctors, that is all I ever do.'

 * 'She is always convalescing.' 

"One trick that makes pill taking easier (especially the nasty tasting ones) is to wrap the pill in a tiny bit  of Fruit Roll-Up or Fruit by the Foot." Kim

"It's important that you know about your child's condition, no matter how scary it is. If children feels like they know more than you do (it happens and I speak from experience - mine), they will feel responsible for protecting you. You're the parents, and you need to take care of them, not the other way around."

"Please, please, accept your kids even if they cannot do what you dreamed
they would. My dad hated it that I would never be able to play pro-sports since
I use a wheelchair.  So, he told me continually that I would never being anything
but a space holder. I wanted to prove my worth to him so I pushed myself hard
to get A's. Now when school gets stressful or I think I might be disappointing
someone close to me I zone out, and can't talk (except for answering questions)
I hate it because I kind of get that numb feeling like I just took OTC sinus
meds. From what I have read this seems like a form of dissociating. When it happens 
most people just think I am very tired."

"Please don't try and come up with a diagnosis yourself before my doctor's appointment to 'keep me calm'. Actually, when you say that you know what my problem is it has the opposite effect; it makes me feel like you won't listen if I tell you about any new symptoms, or like you will work backwards and make the symptoms I share with you fit your diagnosis. I know you aren't a medical professsional  and I don't expect you to have the answers when I talk to you about the strange things my body is doing. It is just cool that you are here to listen...that's enough!" Angela

 
 

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Do you have some tips for parents? If you do, I hope that you'll mail them to me in this envelope.