our parents, kids and spouses

[Guest guest]

I think for a parent to have to face that their child, no matter what age, has a

serious illness is hard. No matter how old we are, our parents love us

(usually) and to think we have a disabling illness causes our parents to have

pain and grief for us, on our behalf.

Our kids, well, MY kids, they seem to accept me how I am, they never get

embarrassed by my scooter, braces or cane etc- cuz I have been blunt and frank

with them, without these aids I could not do all the things we want to do as a

family, and they can SEE it.

Even helping me comb my hair, sure they grumble, aw mom.....and I calmly say

well then, I am NOT going out in public, I cannot comb my own hair today and I

refuse to have your teacher think we do not care about grooming. Take your

pick. My husband? Hm, he is a touchy spot- due to his own illness, and when he

was diagnosed I know I was so crushed, but I was also angry- he is supposed to

be my partner and gosh dang if he is sick or disabled or dies, who will be my

life partner? We have been a good match, but if he cannot do the things he has

been doing, who will do them? When I got sick, I could see the same kinds of

thoughts going thru HIS mind. He sure was scared, wondering if he could really

take on what ever my needs might be. Truth is, some days due to HIS illnesses,

he can't, and we both sit here feeling terrible cuz we cannot take great

wonderful care of each other, we worry about the kids, and yes, we get mad cuz

gosh, that spouse should take care of ME. Ah, we limp along....he loves me, I

love him.....we love the kids they love us.....and some days we just sit here

and say who cares what the rest of the world thinks? We are here, we love each

other---- and we know if we are doing what we CAN do. Hold your head up- do

what you can, skip what you can't ignore the ignorant and realize sometimes you

just worry about the things that really are life or death.

I will not die just because my cousin does not realize what RA is.