Comments on: One Day closer…

By: M

Tue, 22 Dec 2009 00:33:52 +0000

You have done a amazing job with Ky and you will continue to. I have to say that I have all those fears with M – She is still in diapers and almost 4, her belly and back side are covered in scars,she knows and has gone thru much more in life then most will and is a old soul who wants to take care of everyone. I am sooo worried what she will have to go thru. Could we not just have all of our IA kids grow up together??? Keep up all of your hard and wonderful work… Ky is Perfect!!

By: a stranger

a stranger — Thu, 17 Dec 2009 16:50:24 +0000

And never let her forget that, although her BODY may be an inconvenient wreck, SHE is perfect just the way she is.

By: E

Thu, 17 Dec 2009 03:37:54 +0000

Many children’s hospitals have psychologists on staff who help kids with congenital or chronic medical problems cope with the reality of being different. You may want to check about that now so that when she does realize that other kids don’t wear diapers, etc. you have a resource ready for her.

By: Misty

Misty — Wed, 16 Dec 2009 19:53:13 +0000

You could put the Ariel panties over her diaper. My little boy loved that. When she gets older will she be able to hold anything in? I am not sure of the physiology. As a mother I cannot imagine how you must feel. Why must kids be so mean? I pray that you will be able to help her in the best way possible. That you will be given the words you need to explain and repair hurt feelings. For strength for Ky and understanding for her friends. Best wishes…

By: Tricia

Tricia — Wed, 16 Dec 2009 17:23:27 +0000

You are right, she is not like every other kid. Sometime in the course of FigNewTon’s illness, I realized that and it became OK. And now with Butterfly, she appears so normal that sometimes I have to fight to get her the care she needs or I am seen as an over reactive parent by other uneducated parents. Continue to relish in the miracle that is your child. That will give her and you strength to face the days when nothing seems normal. Continue to show her unconditional love. Continue to teach her to be gracious and forgiving. Sometimes even teach her that other people can be ignorant, that they don’t mean to be hurtful, they just don’t have a clue. You can do this. You have to.

By: Danielle

Danielle — Wed, 16 Dec 2009 14:30:13 +0000

You’ve done such an amazing job thus far, I have no doubt you’ll find the strength and words you need to tackle the next obstacle too. Just relish in the delight that you have the chance to even worry about things like this. She’s a true miracle!

By: stacey

stacey — Wed, 16 Dec 2009 12:59:17 +0000

It is the things that wound our children that cause the most pain. My children do not have her medical challenges, but it still kills me when they come home crying because someone was mean or would not play with them – we want everyone to see and love the child we know is inside. There will be very hard days outside your care, but the best thing she can carry with her to meet those challenges is the knowledge that she is deeply, truly loved by you.