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  • Berkshire Road
    replied
    I'm sure we all feel that way. Could it possibly make me happy to see my 11-year old doing the laundry because *I can't?* (She's been doing this since she was about 9.

    I remember we used to go to waterparks all the time. I taught her to swim and to dive and she is now a competitor in both sports. I used to coach her dive team and now it's a miracle if I can make it to a meet.

    My only advice is, at an age-appropriate level, TALK to your kids about how you feel and how they feel, and make sure they know you're not shutting them out because you're lazy or don't want to be with them.

    Recently we've had some success finding things to do together. My Susannah brings her homework up to my bed to work on it, so we're in physical contact and I'm there to help her when she needs it. We've found board games that we all like. Most recent project is trying to improve her French. She is 6th generation American-born and Daddy doesn't speak French, so it's not surprising that she hasn't picked up all that much, but she brought it up herself: "Mom, if we've managed to retain the language for all this time in this country, I really think I want to keep it up."

    Anyway, just know we ALL relate to that feeling. Of all the things I've lost due to this crappy illness, the ability to be an active mom is probably the worst. But you compensate.

    Carolyn

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  • icsonja
    replied
    Leah, what a wonderful post, you made me cry , but they were good tears.
    I guess I needed a kick in the hiney, I also have a mom who was very ill my whole life and she is my best friend ,I learned so much from her on how to handle the tough stuff in your life with honor and dignity and strength, she is my personal Hero, as is my Daddy for NEVER, EVER,making my mom feel bad about being ill, he did it all and they are still so beautifully in love, 50 years in July. I should be so lucky!
    Oh and just a note my daughter's name is Leandra, but we call her Lea, pronounced Le-ah, like yours...so love your name!!
    Thanks for the uplift,
    Sonja

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  • meme
    replied
    Originally posted by vm
    What a wonderful post, meme.
    What can I say, I love my mommy!!!!

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  • vm
    replied
    What a wonderful post, meme.

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  • meme
    replied
    I wonder about that sometimes too, if I would be a good mother because I wouldn't be able to do a lot of things with my kids, but I do know that I would give any kid a loving and nuturing enviornment that some kids don't get. My mom was sick a lot when I was younger and we didn't go out and do a lot of things, but I still think that she is the best mom in the world. The times we have together sitting around the kitchen table are better than any trip could ever be, and through her, and my own illness, I have learned a great deal about apathy and compassion towards others. My sister is another example of how great a mother you can be without being overly active. She suffers from anxiety when she gets into large groups so she rarely goes anywhere, but her kids think the world of her. She is the perfect mom, always listening to them and baking with them and still tucking her 14yr old son in every night. It will be that he remembers someday and cherishes not one trip somewhere. If only I knew that I would have their relationship someday I would have 20 of them! Quit beating yourselves up. You're better moms than you could ever know. It may seem now that the kids don't always understand why mommy can't go somewhere, but someday they will and they'll cherish the other moments you had together.

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  • icsonja
    replied
    Boy is this a awful part of IC and illness, infact I would have to say that it is very WORST part of being ill and I have been diasabled now 8 years, I can handle the surgeries, the pain, the depression. etc, etc., but having to say "no I am sorry I just can't go/do this today to my kids is the very worst part of it all.
    My daughter is almost 14 and doesnt remeber me not sick anymore, my 17 yr old senior should be having the best year of his life, instead he works fulltime to help out and he help with home and taking care of his sister...can I say GUILT any louder??
    My oldest son, who is 22 and expecting my first grandchild in 10 weeks,did get so much more from me as a mom since I wasnt ill when he was young,my kids all love me, I know they do, they tell me daily, and they are seemingly growing up well, both on A Honors and my daughter is in the all state symphonic band at the age of 13 and is UIL and active in all sports and is class vice president, but I still feel I have let them down....like you said..I want to go outside and have fun with them, but I can't and I don't know what is worse that they accept this as normal and ok or, That this is all they know as normal...if that makes sense.
    So I guess I joined the party (Pity one)...but ..yeah I do understand....everyday.
    Hang in there all
    Sonja

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  • lledoux_2000
    replied
    Christmas Blues

    I jinxed myself. Two days I got online and posted a message about how good things were going - only to wake up the next day in a flare - I never had pain before w/all of this - except after the cysto-thing diagnosis. I've been in bed for two days - Merry Christmas - bah humbug! I tried to watch my two boys open Christmas presents this a.m. but had to get up and leave as I didn't want video of myself in pain! No urethral burning at all - simply feel like someone has poked a knife in my bladder and they're twisting my intestines.
    One thing I've noticed - if I slip up on my diet - I get the frequency and buring.
    If I come in contact with ammonia - I get pain....and I used an ammonia product on my shower doors 3 days ago...
    It's maddening - and I truly do have a lot more sympathy now for those of you that have been battling this pain - I didn't understand before because all I've dealt with is frequency and urgency....
    This too shall pass.... but I've cried all morning because once again I can't be there for my boys and my husband has to feel like a single parent.
    Merry Christmas one and all...

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  • Gaby McCarthy
    replied
    Hi Kelli,

    I feel exactly the same way about my IC in relation to my kids. It isn't always so much about what I can't do (although that really bothers me too), as it is my attitude around the kids. I feel like I'm always so irritable and "snippy" with them because I'm in pain. It seems like every request they make, no matter how small, will take such a monumental effort to get through that I end up just making excuses not to do it. Then I feel guilty and try to overcompensate. It's just a vicious cycle.

    And also because my kids are adopted, I start to wonder if they wouldn't have been better off with their birth parents. I adopted them to give them a better life, and I know that in many ways they do have a better life, but there are times I feel that I fall far short of the parent that I aspire to.

    I guess I've just joined the pity party in a major way (I'm having a bad day .... can you tell?). But, even so, my kids are the one thing that keep me waking up and plugging along each day. What I need to do is remind myself each morning when I wake up how lucky I am to have them when for so long my dreams for children were unattainable. Because they mean everything to me, and then I need to use that moment each morning to pull myself out of my "funk" and this unending pain and just get on with things. Acceptance is the key and I still struggle with it. Oh well. Thanks for enduring my monologue (sp?) and here's wishing everyone better days and a wonderful, painless (or less pain as may be the case) holidays!!!

    Gaby

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  • Teri
    replied
    My kids are grown with kids of their own now. I think back to when my oldest grandchild (he's almost 13 now) was a baby. My husband and I basically raised him for the first 3 years of his life plus I worked full time. The trips to the play ground. To get icecream. Out to breakfast EVERY Sunday (I remember when he was in his terrible 2's and would refuse to sit at the table in the restraunt and he'd spend his time sitting UNDER the table [img]biggrin.gif[/img] ) those days were so great. Now, we have 9 more grandchildren and when I am lucky enough to spend time with them it's spent reading....which I have found to be a very very special activity to do with them. It's like they want the other grown ups to play with them and it's only grammy who is allowed to read them stories, but I miss the old me and the physical things I use to do. If a kid called needing a babysitter it was ALWAYS an automatic "YES!!! HURRY, BRIING THEM OVER!!!!" That's gone and I miss it so much. I missed my children's childhoods because I was a single mother working 60 hours a week and I looked forward to the day I could leave my job and spend all my time being a grandparent. But, it wasn't meant to be.

    I know that my grandchildren love me as I am but it would be so great if they could love me the way I was.....my oldest and I talk about the things I used to beable to do, my school days, my bowling career, and I can see it in his eyes that it's hard for him to imagine me being able to do those things and it hurts. It hurts alot.

    BUT, we are doing the very best we can with what we've got and beating ourselves up isn't going to get us anywhere. When I'm having a bad day, which seems to be every day lately, I am reminded of everyone here and I KNOW that no matter what, I'm not alone and no matter what, there is another person feeling and missing the same things that I am........

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  • ICNNINA
    replied
    Kelli, your post really touched my heart. I know how hard it is to struggle with illnesses adn the children. I do the same thing. One particular time, my son age 4 begged and begged me to take him to the park. Its only 5 minutes from here, BUT they have NO bathroom there, and I was miserable and couldnt take him. The look in his eyes when I said no, crushed me. Then my daughter who is 6 has commented before, when I was in a really long flare, that "you never feel good Mommy" Its so hard to hear. Hard to face, hard to explain to them, and I too spoil them rotten because sometimes we cant do the things we want to. I will have to say though we just do different things together, Hubby does more of the active stuff when I feel bad and, I spend more time talking to them, reading stories,coloring, cuddling, watching a movie, etc. Anything to keep that bond strong. Honestly though its hard, they are what keeps me going! and I have heard alot of other moms with IC say that too. Keep your chin up hon, Im sure you are a wonderful mom! Big Hugs, Nina <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

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  • vm
    replied
    Heck, I feel good most of the time and feel like a crap parent! <img src="graemlins/eek.gif" border="0" alt="[eek]" />

    But I know what you mean. When I have bad flare days I feel super guilty. [img]frown.gif[/img]

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  • LDS
    replied
    Kelli, I feel like this almost everyday. I have a three year old who is very active and wants me to play all the time. He now asks me if "my belly" hurts every time. It makes me feel like an invalid and I'm on 45. Sometimes I just take pain meds and go out, just because I don't want to miss so much. But, you are not alone at all and my heart aches for all of us.

    Take care, Lesley

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  • Kelli
    started a topic Ever feel like.......

    Ever feel like.......

    You're not a good parent? Since IC and other things have pretty much taken over my life, I am unable to do alot of the things with my kids that I miss alot. We used to play kickball out in the front yard, or play baseball. We used to ride 4 wheelers and go karts on a homemade track here at the house. At night we would goof off and wrestle around and since I have two sons, we would have tag team matches, my oldest and I VS my hubby and youngest. Yesterday, I went out to the back of our property, where the go kart track is. It's all covered over with grass and barely looks like a path at all. I realized that the kids barely took out the go karts this year, and I think I seen my hubby on the 4-wheeler once. It kinda makes me wonder, because I don't go out there, and spend most of my day in the house, if they just didn't want to ride and leave me in here alone. [img]frown.gif[/img] I volunteered for Junior Acheivement in both of my boys' classes this year. I have done my oldest boys class and will do my youngest in Feb. I am on the PTA and plan to run for the school board the next election year. I want to be involved with my childrens school. But I also want to be a part of their everyday lives as well. Which is something that hit me pretty hard seeing that track covered with grass. Then it made me think of other things we used to do and haven't been able to. I feel so awful for them. I didn't even realize that I had taken so much from them. Not that I did it on purpose and I know I didn't, I just didn't notice it until now. It kinda makes me wanna go buy everything in Toys R Us for them just so they would be happy. But I know it won't replace our family time. The hardest thing I guess to deal with is when they want to go somewhere and I say I don't feel up to it, my oldest said to me one time, you never feel up to it, and went upstairs to his room. I cried to think that they were missing out because of me. ok, sorry to have written a book, and I'm gonna hop off my pity pot now. Just wanted to get this off of my mind. Thanks for listening.
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