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I was diagnosed at the age of 28 at the time my kids were 8 and 6.  As they get older they are faced more and more with mom being sick.  There are more and more things that I miss out on.  When I was first diagnosed I was a single parent.  Since then I have married and my husband has to take up more and more of my "slack".  Do other parents have the same problems? How do you keep from disappointing them when special events come up?

 Reply posted for Jamie111922.

My kids seem to be dealing with it okay. They definately notice a difference. When I am feeling well we are on the go all the time. I am constantly looking for fun things to do with them. I have wanted to be a mom for as long as I can remember. I want to enjoy my kids to the fullest extent!

However, when I am not feeling well - things aren't so great. The worst is when I am in the hospital. I love my husband to death, but he is the baby of 8 and pretty spoiled. I am the one who takes care of just about everything (give the guy a shopping list and I'm lucky if he even brings back one or two things from it). So when I am in the hospital I worry about what is going on at home. Fortunately I have my mom, my sister-in-law, and my aunt who are wonderful about stepping in and helping out!!!!!

I was most recently in the hospital in June because I developed Pyoderma Gangrenosum (it is a disgusting sore that looks like my leg is rotting off). I was there for 6 days. My poor kids were so unhappy! They did come and visit me, but it is not the same.

Then when I got home, I still couldn't do everything I normally would. I definately couldn't play ball and such because of the painful sore on my leg. Plus, I am being treated with Prednisone and dealing with all of the side effects from that. I go from super energized to completely exhuasted. I also have roid rage - my patience is shot. I worked with people with disabilities for the last 10 and 1/2 years - I am usually a very patient person - NOT ON PREDNISONE! Not to mention that all I want to basically do is sleep and eat, but I haven't slept through the night in months!

Oh - this isn't helpful. I am just getting more frustrated as I type this - sorry.

 Reply posted for Jamie111922.

When I was diagnosed, my daughter was 2 and now she is 11, she knows when I am having a bad day, and is so used to only going to stores with close by bathrooms, and going hiking with me, and having to hold the dog's lease because I am going to the bahroom behind a tree! She is a great kid and I think that sometimes he worries about it being passed along to her. I try to reasure her that it is not always the case. Sometimes we just have to laugh about it. It helps, alot.

Good Luck! remember that kids are more understandng than adults sometimes. At least my beautiful daughter is!

 Reply posted for Jamie111922.

My husband has crohns, for about 17yrs now and we have been together for about 19yrs...married 16.  We have 2 sons, 6yrs old and 5yrs old.  There are many things that he has missed because of the crohns and the boys know that if daddy can make it, he will. 

Like someone else said, we don't normally make real plans, if we do that is when something will happen.  Like Murphy's Law or something.  So we don't tell the boys if we are thinking of doing something, we just go.  Now school stuff or soccer or scouting, then those are pre-planned and I handle most of that. 

You just do what you can, and make that time special...that is what they will remember!

 Reply posted for mommy2twinz.

Thank you and you're right a great man to stand beside me is awesome.  there are times I wish our life wasn't so complicated but I know that we aree meant to be together and I know that what we have is true love.  Thank you so much for your response because sometimes you feel that your thoughts and this disease aren't validated.  It helps to know that there ae peole out there who have the same feelings that i have it keeps from feeling sorry for myself.  In the beginning that was a feeling I always had.

 Reply posted for Jamie111922.

    You are very lucky to find a man that will help you with your two oldest, I know first hand from when my mom remarried for the fourth time what a differnce a great step-dad can make in a child's life. I totally feel for you and will keep you in my thoughts with that new little one and your two older kids.
    IT's tough being sick and having kids, but I know that we aren't given more than we can handle. I try not to get too down on myself when I can't do things "healthy" people do and I hope you try and be optimistic too. It's comforting to know that I'm not the only one going through these feelings and issues.

 Reply posted for mommy2twinz.

I can't imagine what you go through I just had a baby too 8 months ago.   It just seems harder the older my kids get because they know the pain and have seen me at my worst and as a mother you don't want them know that kind of pain inflicted can be put on someone they love because you know that they can't do anything to help you and somtimes that makes it worse because mine know what it was like before Crohn's and then they know what life is like now and my new daughter will know what it is like now when I'm sick.  I do try to not make promises anymore as that tends to upset the natural order im which my house runs.  My husband does more than you could expect it is harder for me to let him because my oldest children aren't his and I can't let control go as easy as I would like to.  It just seems to get harder because I have always been there for everything.

 Reply posted for Jamie111922.

    my girls are two right now, so we have a while before i think my girls will actually realize i'm sick. sometimes they say sorry mama you don't feel good cause they can see when i'm obviously hurting. i feel selfish for having kids knowing i was sick. i didn't realize it would be this tough. my husband is pretty good about compensating for everything i lack in, he'll take them to the park and swimming, but i feel bad cause i can't do the mom thing... the hardest thing right now is we are potty training and they were doing so good, but it's stopped. i can't be consistent for one cause i get so sick i just lay on the couch and parent from there sometimes and also they see me in the bathroom hurting and crying so they want no part of that.
funny the how being sick affects so many aspects of life.

 Reply posted for Jamie111922.

My girls are also 8 and 6 and I was diagnosed 1 year ago. My first line of defense is I don't make plans with them. When I feel good I take them somewhere and we have fun. With things like soccer I try my best to be there. I don't feel I am pawning things onto my husband. That relationship is special too. Sometimes they do get disappointed but I'm there for them in those cases too. I had to learn not to be super-mom and relieze they love me for who I am and what I try to do is just as important as what I do.