how did I miss this one.....

[Guest guest]

Wow- sometimes when I am reading, I miss the posts that are very close to my

heart! This post was from Jody-

I could have all but written this email! Except for a few things--- we only

had 1 child at the time Bob was diagnosed…. And this has been going on for 4

½ years! Now that it has been so long, I too, FREQUENTLY, need time to feel

sorry for myself- and often act like a baby and get disappointed and sad and

stomp my feet when I can’t have what I want from my husband. This disease is

just horrible.

I think I’ll email Jody separately but WOW- just when you think you are the

only one!!! This group is great and it makes me happy to see another caring

spouse here!

T

BTW, I need a moment to feel sorry for myself. Then I can get it out and

remember the blessings and have a great day! Okay...I feel sorry for myself

because I miss my husband. Not just the big, strong guy who can do anything

I need him to do, but the snuggler. We used to snuggle on the couch every

night, now he lays with his feet up on pillows every night and there is no

room for me to snuggle in. I feel like I'm the mom and the dad running the

house by myself...I take out the trash, I carry the boxes of Halloween

decorations/ Christmas decorations/ etc. up and downstairs, etc. I'm tired

and lonely sometimes. When he is flaring he sleeps all the time, when he is

not, he still sleeps so much (he slept till 12 noon yesterday and then we

were off to dr appt and rushing back to get Gracie off the bus, then rushing

through dinner, I put the kids to bed, and he is done, on the couch, no time

for his wife. It sucks! And this is every day!!! People say to

me...it must be nice having him home from work all day! Yeah, right. I

talked to him more when he worked full-time! Okay, now the good. He is still

here with me. There have been times we've been able to just get off the ride

and stop and talk. But mostly the reason he isn't there for me is because he

is there for our kids which is our priority together. All of his spare time

during the day is spent with them. And I am so blessed to not have time with

him because that means that we have them and he is a great Daddy. He puts

them to bed every night almost (tucking in, reading books, snuggling... I

get the hard part of baths and brushing teeth although he has been able to

take over some of that these last few weeks so that feels good), he does all

of the laundry (except I carry up and down the stairs and put it away), and

he makes us laugh. And, he doesn't ignore me...he tries to give me what I

need, too, and he loves me...I feel it so it isn't as

bad as it feels some days. Anyway, there is so much more, but I feel so much

better now. Thanks all for listening!

Back to work...the baby is done with breakfast, the preschooler is crashing

trucks everywhere, Mark is still sleeping and the 18 mo old that I watch for

2 hours in the mornings will be going home soon (her mom works days and her

dad works nights so I help out during the crossover hours), but for now is

wreaking havoc in the living room...toys, toys, everywhere!! !

Have a happy day!

Jody