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i am totally at a lost on what to do with my kids. i am newly diagnosed by a blood test and thigns but no diagnostic test has found where my crohns is, so i guess you would all say im in the midst of a full time flare. but i have a son whos almost 4 and a 2 year old daughter. most days im too tired ot get out of bed or my stomach hurts or i have no energy from being sick the day b4. i can barley pick them up, i cant bring them ne where bc im afraid of getting sick in public ecspecially if im with them alone..i could go on but you all know the life..but my question is how do i make this the best i can for my kids and husband. and is there ne way to help them understand im not just becoming lazy? i dont want my kids remembering mommy always saying i cant play im too sick. im on anxiety meds but they dont take the reality of this illness away or watch my kids while im in the bathroom every 3 mins. any help?

 Reply posted for sheekies.

Thank you all for your wonderful posts! What great ideas! I have a 2 and 3 year old and feel constant anxiety about what I am doing to them which only makes things worse because it is out of my control. But my attitude and the love I can share is under my control. I realize that now.

Do any moms out there want to start a separate yahoo group to share our daily struggles with children and more good ideas to cope?

-Victoria

 Reply posted for JennJenn.

I love your post. I was that Mom. I worked so hard trying to entertain during my illness flares.

Try Blue's Clues , or I Spy. My boys were entertained for hours with I Spy. We would take turns picking things out in the room until one of us found it.

 Reply posted for sheekies.

I don't know if this is too late. Your post was last month. I smiled reading your story because of my experiences, and you know what? I don't feel bad or guilty about it. I did what any single Mom with 2 toddlers has to do. Run to the bathroom with them following right behind me. I brought them both in the stall with me and they faced the door. I apologized over and over all the time. "I am so sorry boys, Mommy is sick we will be out of here soon."  I know where every bathroom in Clearwater Florida is, if anyone needs to know. Ha ha ha. Oh, and the clean big one's too!

Anyway.. back to your story.. I didn't stop living with this new disease. I took my boys everywhere. They have lived with me going through this for 10 years, bless their hearts. They are 12 and 14 now. We have a strong bond and talk about everything. They are my rock! As I am theirs! We have had awesome times during remissions and not so great times during flares. They never complained, not once. They knew the LOOK, you know the look on your face when you need to know just how many steps you have to take before your butt hits the toilet. When they saw that look they stopped what they were doing in the store (yes even at Toys-R-Us) they followed closely right behind me to the bathroom. When they got older they waited outside the door. Now that they are teens, they know the look so well, they say, "Mom we will be right here, go ahead, we will just fine."  I am going through a horrible flare-up right now and I came flying through the front door from work last night undoing my pants as I ran to the bathroom, only to sit down with...you guessed it! NO TOILET PAPER! I just bursted out laughing. I called Sam to the door, he said there was none in their bathroom either. He immediately, without asking hopped on his bike rode to the convenient store on the corner and got toilet paper.I thank Jesus every day for giving me the most polite, understanding, and compassionate children.

 Reply posted for sheekies.

post3

When you are in the bathroom…

-Have them sit outside the door and sing songs for you

-Have them make faces, happy, sad, mad, etc. and you guess which they are making

-Have them draw pictures and tell them to put them in the mail slot by sliding them under the bathroom door

I wish I had advice regarding your husband, but I have the same trouble with mine. We have been together for 17 years &he has been with me for all of my hospitalizations, but still doesn’t understand that I’m not being lazy. If he doesn’t offer, suggest to your husband that your children sometimes need some special time alone with daddy.

 Reply posted for JennJenn.

Post2

Don’t stay in bed all day. Rotate sitting in the living room, lying on the floor in their bedroom, sitting on the kitchen floor, with lying in your bed throughout the day. When I need to rest in bed, I bring the children with me & play bed games like these:

-Lay in bed on your side, with your eyes closed. Have the children take turns drawing shapes, letters, or numbers on your back with their fingers. Your job is to guess what they are drawing --- you can ask them for clues too.

-Reverse roles. They are the grown ups and you are the child. They need to tuck you in, tell you a story, sing a song. You then pretend to sleep by snoring.

-Play doctor’s office --- they give you a check-up by looking in your mouth, ears, etc.

-Play beauty shop – they pretend to wash your hair and style it with their hands

-Bring crayons and paper into the bedroom and let them sit on the floor and draw pictures.

-Get some picture books for them to look at. My kids could spend 20-30 minutes quietly looking through the books. If they get bored, have them name everything they see in the book.

-Nap together --- have a contest to see who can fall asleep first.

-Have them build towns with their blocks on the bedroom floor, and then ask them what each item is that they made.

 Reply posted for JennJenn.

Post#2

 Reply posted for sheekies.

I have had Crohn’s for 25 years, have two children --- ages 6 and 7 and have had flares several times a year since they were born. You are not alone! I still have occasional pangs of guilt that I am healthy enough to play with them 24/7. Do what you can ----- and try to make everything into an adventure.

I will post some things that have worked for me in several posts

Post#1

-Get two boxes, bring to the park for 5-10 minutes  to collect leaves & sticks for a “nature collection.” Tell them it is a race and you are timing it to see who gets the most.

-Read them a story about firemen or fire trucks then drive to a fire station (you don’t even need to get out of the car). Park in view if possible, point to the building and explain that is where the fire trucks live, firemen sleep, etc. maybe you will get lucky and they will be washing a fire truck outside!

-Drive around your town for a few minutes and have the children look for specific things such as red cars, green lights, police cars, circles, etc. They will be very excited to call it out each time they spot one.

 Reply posted for asohn.

Oh- I wanted to also address the fear of going anywhere.  it was like that for me too.  I mean how do you RUN to the bathroom with 2 kids.  Most parks etc have restrooms so I would meet other moms for playdates and I told them about my UC and asked if I had to run to the restroom could they watch the kids.  Not only were they wonderful but alot of moms told me about their IBS issues.  Funny how once you open up how many other folks have bowel issues too.  At first I would only go for an hour- I was afraid the kids would have a grand mal fit but they did okay.  Or get some really fun outside toys and make your own yard a fun place to be.  If you have to run just grab the kids and run inside.  Another thought- computer games?!  If you have a lap top you can all pile into bed and play games.  PBS has alot of fun activities online!  Heck I have even had the kids "picnic" on the floor next to the bed because I was so tired!  

 Reply posted for sheekies.

I too have a 4 and 2 year old.  For about a month we had to put them in daycare because I just couldn't take care of them.  It broke my heart.  Slowly I would pick them up earlier and earlier and finally we could leave them at home.  The bed became a playground.  We bought big poster boards that we could do puzzles and drive cars on.  Meals were simple- and hugs were plenty!  I changed diapers on the floor if it hurt too much to lift onto the changing table.  We often all napped together.  At first alot of people jumped in to help but as you know this disease is chronic and people go on with their lives.  Thats okay- I appreciated the help when I had it and I figured I had to figure this out myself.  Hopefully the anti-anxiety pills will help.  I started them too because I found myself so frustrated and yelling more than I ever wanted to.  Luckily they are young enough that they don't realize that mommy hasn't been able to take them to the zoo and stuff like that.  I am getting better- and you will too!  Do what you can when you can.  Kids remember the love- hang in there!

 Reply posted for sheekies.

My children are four and six and I was diagnosed almost a year ago.  It is very hard to take care of them when you feel miserable!  You didn't do this to yourself and you cannot help being sick.  Your children will get used to it, in a way.  I have an enormous amount of guilt when I'm missing out on playing with them and going places with them.  But when you're really sick the best thing to do is rest.  It took me a long time to get there but it is truly the best thing.  Oh well if you have to put the t.v. on a little more than usual, it's okay!!!  My husband quit his second job because after work somedays, I went back to work full time after five years of part time, I couldn't do anything with the children.  Hang in there and try and give yourself a little bit of a break!!!!!

ngc