Re: Amber---make a wish, etc...

[Guest guest]

Amber,

My son is 6 and just received his wish on 2-28. And other that his

confirmed dx of cf he really doesn't have any of the main symptoms of cf. Their

dx has to be considered life threatning and that is all. We decided to go ahead

and do his wish while he is healthy enough to enjoy it. I am also a Make a Wish

volunteer and please, please do not think he has to be " sick enough " ) In

fact 80 % of all Make A Wish children are still alive. )) doesn't

know exactly how cf can end, he just knows he has very special lungs that need

to be taken care of...........

Deana

Mom to 12 no cf and 6 wcf

Re: make a wish, etc...

You are not a weak person at all. In fact I think you are very strong to be

able to admit in writing what I am sure is dreaded by all on this list, yet

we, myself in particular, are too afraid to say out loud. I know we are all

strong on the exterior, put up a good front for our kids, but are truly

horrified on the inside about the path we will travel in our journey through

this disease.

I haven't contacted make-a-wish for my son yet. The reason? I'm scared to

death to think about him having to make one big wish. I'm scared of how it

might affect him, you know, the whole idea of , he's a terminally ill child,

so this is one of the last big bangs,etc... In no way is he " sick enough "

now, but I also worry about waiting until he is sick that he needs oxygen

24/7 becuase would he really enjoy whatever he wished for?

Don't worry about the motorcycle too much. Our whole family has been riding

motorcycles since we could all hang on! In fact, before Nick was diagnosed I

used to put him in the front facing baby backpack, strap him onto myself and

take him for a ride on my bike or put his car seat in our dune buggy and putt

around the dunes. It was the only way to get him to sleep. The gentle

rumble of the engine and swaying as we went over the bumps in the sandwould

lull him into a peaceful sleep! then I could go ricky racing in the desert

myself! (Sometimes us moms need a break) Of course, my mother, husband, or

other family member would be at the trailer watching him and his older

brother.

Amber

Nick's mom

[Guest guest]

Thank you to all of you for your words of encouragement and reassurance. I

guess I still have a ways to go.

Amber