Holding back the tears.

[social me]

Although I was just recently diagnosed I have been ill for 2 years prior for another medical reason with much of the same symptoms. I had about 2 months of feeling healthy and not fatigued and then I started getting sick with Crohns symptoms. I guess I am so sad because For those 2 long years I missed out on much of my children's lives. My son now only 3 and daughter 9 I was going through pictures last night and noticed many parties, trips to the park, mommy and me classes, first experiences with my 3 yr old all these moments I have missed and cant get back. I watch my family leave as I lay in bed, trying to pretend I was ok, only to break down crying when they leave. Because I am sick I cant expect them to stop living. So those 2 months made me think ITS OVER.. I made it through and now I can live again. WRONG!! Now I am just as tired and weak, with vomiting thrown into the picture. My 3 year old asks me every day "Mommy you feel better today?" Beacuse he wants to know if I am well enough to dance and play with him. Also everything I can't do now sits all on my husbands shoulders. I have a great amount of guilt because of all this and I feel Ive lost hope. I want to yell at God and just scream REALLY? After all that now this happens. Now I wonder what other moments in time I will miss out on. It feels at times I am not even part of the family beacause of the limitations I have on me. This is the worst of it all, this has become my reality staying home alone tired or ill, missing my family wondering what kind of life is this....besides a painfull one. Sorry feeling sorry for myself, feel like Ive lost my hope. I've tried to be strong but I'm not I am MAD and feel broken.

 

[ameslouise]

Hey Social - It's tough being so sick with little ones around, epsecially if they aren't old enough yet to really understand what's going on. And it's hard sometimes not to feel guilty about all your spouse has to pick up when you aren't feeling well enough to help out.

Try to focus on those things you can do and the fleeting moments when you feel well enough to participate in activities.

When I got home from the hosp after my recent surgery, my son (age 9) was a real trooper. He was preoccupied by my parents being here and enjoying spending time with his grandparents. However, every night around 8, I would ask him to come upstairs and watch TV with me. We would get into my bed and watch a show together and that was our special time.

Maybe you can set aside time to read or snuggle or watch a special show with your little one. Does he still nap? Maybe before naptime you can wind down together, or even take your nap together!

Try to find things you CAN do instead of being mad about what you can't do (though I don't blame you for being mad and broken! We all go thru those emotions at some point in our disease).

Right now I am missing my son's first baseball game of the season as I still can't sit after my recent surgery. But I'll try to have something special for him for dinner to make up for it.

Hang in there. What meds are you on and are they helping at all??

-- Amy

 

[silvermander]

Oh, sweetie, I know how you feel!

I was diagnosed as a child (8y/o). My whole childhood was watching everyone laugh and play while I was reading a book. In my teens I missed a lot, saved my energy up for the big events like dances, prom, etc.

College was even harder. I remember that I had a small bowel resection 11 days before one fall semester. My doc removed my tubes and staples the day before I moved back into the dorms. That first night Green Day was having a huge (free) concert in Boston. There was no way I could go. As my room was right by the door to our floor, everyone checked in with me when they returned, that way we had a head count, so no one was left missing the next day.

Fast forward through a number of other surgeries, lots of life and I'm very happy. My significant other has three kids and full custody. I took in a child who needed a home. She's grown now, but I'll be adopting her as an adult. I seem to miss most holidays and family events as I just am not up to going. I spent Christmas of '09 in the hospital and New Years eve '10-'11 in the hospital. The summer is coming and it's not looking good for me. I might have surgery, so I'll be missing our medieval event (SCA) and a lot of other things.

Yes, it totally blows goats missing all this stuff with the kids, and it will have a profound effect on how they grow up and view the world. But what it also does is makes you treasure those little moments all the more. A simple trip to the store, cuddling in to watch a movie, even playing I Spy on the way to a doctor appointment can be a total blast! You have to make the little things count. That way the memories will be fun ones, not always of us being sick.

Get some books of fun little crafts and games that don't require you to be up and running around with them. Yesterday I gave my 7 y/o a piece of paper and told her to go through the house finding items A-Z for a scavenger hunt. She had so much fun with it that her 14 y/o brother joined in to see if he could find A-Z from where he was sitting, not even standing up. We got a game called Headbands where you have a card on your head and one minute to ask questions to try to figure out what your card is. We went through the whole deck of cards in one epic game, so now we all have to make up our own card - with pictures drawn on them - for more games.

It's all in making the little moments that you don't feel like crawling under a rock and crying, the best that they can be. One of my best friends has kidney failure. The two of us swap off kids when one of us is in the hospital, has a big doc appointment or just having a craptastic day.

Keep your chin up and make those little moments count and those are the ones that will mean the most to the kids.

 

[social me]

Thank you Silver and Louise. Silver I smiled when I read what you wrote about snuggling. I snuggle with my son in the morning before daycare, even though I am at home just dont have what it takes to care for him. Then at night we cuddle for an hour or watch curious george. On a good day I will turn on the radio and play all his favorite songs and we will dance and I love every minute. The other day Julian wanted to stay home from daycare and be with mom he said but I was so sick I just couldn't so he kissed my belly and said "there all better, no more owey. now I can be with mommy." It was hard because he cried having to go and that hurt so much because I would love nothing more. But our relationship is built on love and many hours of cuddling in bed.

My daughter Leanna (our neice) came to live with us 2 months before Julian was born and he was very sick w surgeries for the entire first year it was very scary. We were also informed then we would no longer be able to have any children,all while we are trying to help a 5 year old understand she wont be living with her mom again and we will be raising her. Now she is 9 and has adapted well and is very understanding of the situation but she does like me to be involved in school and do girl stuff. So at times we play spa, nails and a facial mask and just talking is our special time. I live in Ohio and my sister, Leannas bio mom is an 18 hour drive away to North Dakota. We also lost our mom in the last year so that wasn't easy. I am the oldest of the siblings so I try to be the one to keep our family together. I appreciate the ideas you both have sent and I love the scavenger hunt idea. I am a Social Worker but growing up my dream was just to have children and have them grow up healthy and happy. So I feel like I push hard to get better quick because I am needed and I love them all so much and want to share with them the world and teach them how to love themselves and be good to others. I do that, I guess its just from a bed most of the time, but I am doing that. So I will remind myself of that.

Silvermander thanks for the post, while I read yours I hurt for you. To be so young and have to miss out on so much, I couldn't imagine how lonely you must of felt at times. Then to have to go through so many surgeries, well it makes me feel like baby when I hear how hard Crohns has been for others. I am scared of the big C because my dad had colon cancer and my mom had breast cancer so it puts me at higher risk. Anyway I think you are both very strong and very supportive. I guess when you are hurting or mad it is hard to see your blessings in life. This site has been so helpfull to me but at the same time to see so many struggle with their own issues, well as a Social Worker I wish I could help everyone. I am blessed to have a supportive husband but he too is sick with an Immune Disorder and stress makes it worse so in the last few months it has came back and attacked his body more then ever before and I have alot of guilt because he has to do so much to make up for what I can't do. We have had to learn to let things go. Today I would love to mow the lawn but it aint gonna happen, we have learned to live with dishes in the sink and dust, somthings just arent as important anymore.

I have always been very outgoing and wasnt one to sit at home for long so its been hard but I am not the only one I know we all struggle. Thank you both for reminding me to look at what I can do instead of what I can't.
PS. How do I post on my profile what meds and treatment I am on? Again THANK YOU this weekend has been a tough one.

 

[ameslouise]

For your profile, go to "usercp" at the top of the page on the left. This will take you to the page to edit your profile. Go to "edit signature" and you can type in anything you want to put at the bottom of your posts.

 

[xJillx]

I am so sorry you are down. But I wanted to say you sound like an amazing mom! Though you may not be able to jump up and run around all of the time, you clearly show your children how much you love them in many ways and that is the most important thing. I sure hope you start feeling better soon!

 

[social me]

Jill thanks for saying you think I sound amazing because much of the time I feel weak and not good enough when it comes 2 being a wife and mom because I wish I could do so much more. Jill you have been so good to me with all kind words and understanding. Thanks Jill.