Just one day off

A

Aboveallislove

Super Moderator
So was at the hair salon (woops, typo, but now THATwould be nice!) and overhearing the ladies next to me chatting about one lady whose son just started football and they practice everyday and even though it's just up the block, the drop off and pick up just is constant and "oh, can't we just have one day off."

They. Have. No. Idea. How blessed they are.
 
T

TreasureGoddess

Member
AMEN!!! :) I just got back from my sister-in-law's house. Her daughter is going gluten free and it's the most dramatic thing my SIL has ever dealt with in her life. She was so very VERY stressed out at having to SUBSTITUTE gluten free flour for regular flour for her (very VERY healthy) teen daughter. She's been sobbing for two weeks over the situation. Her daughter thinks it's no big deal as most of her friends are lactose intolerant, gluten free, etc.

I had to give myself a little internal attitude adjustment as it was ALL I could do not to point out what my kid deals with daily.... and go back to being sympathetic for the new stress brought into their lives.
 
R

Rebjane

Super Moderator
I've struggled with this; however I know that i am very fortunate and try to instill this in our family. It could always be worse..There are kids whose parents don't love them or live in poverty etc.

I did have a "down" day last week. It usually happens when my daughter health is very good ironically. I was juggling getting treatments done with a teen attitude and feeling like I was pulled in all directions. I just walked away and cried. I was thinking I can't even remember what it's like to be able to just be spontaneous and go off for the day without packing a small pharmacy and 40 pounds of medical equipment. My daughter also cried. It was not a good moment. Husband came home a few hours later and let me know I am only human and to give myself a break.

Anyway, I don't think anyone can understand; in fact I am sure I don't even totally understand how my daughter must feel; but she knows I always have her back.
 
R

Ratatosk

Administrator
Staff member
I struggled with this a lot when ds was a baby and we were getting used to a routine. The unfairness of it all. Once in awhile it still hits home, but for the most part we've got our schedule down, got things figured out. I'm sure as we end up having to add more meds or treatments, ivs in the future we'll have our moments yet again. Last December was the first time EVER in 12 years that dh and I left town and ds in the care of his grandparents. My MIL remarked that even though she knew we did a lot, having it printed off/written down and being responsible really hit home how much we have to do.
 
A

Aboveallislove

Super Moderator
Yup, I hear you. A good friend and I years ago came up with the routine quip after venting about something "well, at least we aren't starving in Ethiopia," as a punctuation of sorts that of course we knew we had it good and there is so much worse. But there are days like that aren't there? And the language just dug like a dager "can't we just have one day off." (And I could see the whole glutten free thing stinging like that too). But I also know we are so blessed and I also know that others have it so much worse. But it still sucks!
Occassionally, I'll remember the "good" of it, and try to point it out to DS. So a couple nights ago when he was doing his vest we were playing this silly game I came up with to make it go faster (a bunch of balloons around the room, a wrapping paper tube and socks which he put on the tube and I had to "shoot" and get all the balloons out of the room before the timer went off.) I said, "Hey, I just thought of something, if you didn't have cystic fibrosis, we wouldn't have all this time together making up fun silly games." Unfortunately, he's too smart for me and just said "Oh, yeah, we'd just have time to do it without the vest." But he did buy the I probably wouldn't be so creative about it. Augh. And hang in there. We all have those days and your DD learns that it is okay to have them, even when she is strong most of the time!!
Hugs
Rebjane said:
I've struggled with this; however I know that i am very fortunate and try to instill this in our family. It could always be worse..There are kids whose parents don't love them or live in poverty etc.

I did have a "down" day last week. It usually happens when my daughter health is very good ironically. I was juggling getting treatments done with a teen attitude and feeling like I was pulled in all directions. I just walked away and cried. I was thinking I can't even remember what it's like to be able to just be spontaneous and go off for the day without packing a small pharmacy and 40 pounds of medical equipment. My daughter also cried. It was not a good moment. Husband came home a few hours later and let me know I am only human and to give myself a break.

Anyway, I don't think anyone can understand; in fact I am sure I don't even totally understand how my daughter must feel; but she knows I always have her back.
Click to expand...
 
E

ethan508

New member
I'm grateful it is me with CF rather than my kids. You CF parents deserve a major award. It is far easier for me to handle my own care (especially after not really knowing anything different) than it would be to motivate and worry and stress over a child. That being said, I believe (or hope) that my parents are now enjoying 'a day off' from the CF routines now that I've grown responsible for my own care.
 
K

kenna2

Guest
I know what you mean. I worry sometimes, that because of all I've been through with my CF, that I have no sympathy when people say things like this or feel their world is crashing down over what I think is the smallest challenge. I have to try to remind myself that this is big to them (because they have nothing else to compare to) and to keep my mouth shut. I do however roll my eyes and laugh in private. My parents constantly call me their "Warrior or Biker Chick".
 
J

joannemk

New member
I'd give anything to go back to all the meds and treatments.When it gets tough just remember how lucky you are to still have your children.My daughter Jessica died on July 23rd 2014.....she was only 20 years old....there are so many young people that have died from this illness....think of them and their families when you start to complain about how time consuming c.f. treatments are.
 
T

TreasureGoddess

Member
joannemk,
I'm so very sorry for your loss.
OH absolutely I am thankful to have all these treatments and medicines as that's what's keeping my kid mostly healthy! We live in a time where there is a lot of potential, yet there is also the threat that any little cold or infection may make our children sick and they may well not recover.
Whenever I get feeling a little too overwhelmed, a little "why us?", it seems that's when I run into someone who has a much tougher life and I remember how lucky we are. My son actually points out situations and points out how lucky we are.
 
N

nmw0615

New member
My parents always told me, "Your best day will be someone's worst day, and your worst day will be someone's best day." I still repeat that to myself. There's nothing wrong with having a pity party for a day, but we can't be consumed by it.

(P.S. My family always would take one day off, except for pills, when I was healthy and we needed a mental break. No vest, no treatments, no mentioning of CF for an entire day. They were awesome. I'm usually too sick to take days off now, but sometimes on a weekend, I'll choose to sleep in instead of vest one day)
 
You must log in or register to reply here.
Top