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 I was wondering if there are any moms out there with a young child with Crohn's who are trying to work and take care of a sick child.  My son was diagnosed at age 6 and his hasn't been an easy case.  This Summer has been a very bad one for him and he was just released from the hospital due to anemia and dehydration.  I am trying to continue to work and manage his care but it is getting really hard to do both.  Need any suggestions, I am getting very tired and frustrated.

 Reply posted for MARSHA.

If not for FMLA I would probably be unemployed by now, I have missed so much work in 2 years but I continue to work as often as I can due to the financial hardships this disease has brought forth, I can not afford to quit and stay home which is what I would much rather do, since daughter was DX 2 years ago. It is not easy but we all do what we have to and struggle thru. No that u are not alone.

 Reply posted for MARSHA.

It is such a hard balance, I hope you will find what works for you.  Those of you who have family close by are lucky!  We have great friends, and they do help, but I feel like I want to be the one home when my son is sick...

I just aw a quote in Sport Illustrated about a disabled athlete who was told, "tough challenges make tougher people, and you will always be up to any challenge."  What one of you said about not letting your kid feel sorry for him/herself, helping them feel like they are in charge and can handle this, is so well-put.  We feel that way too, even though it's really hard some days.

I wish all of you other working moms and your kids the very best...

 Reply posted for kimvann.

 It is easier when you have family and friends to help out but not everyone is that lucky.  I am one who does not have that help.  While I do have family and friends that live close they also have families and work too.  So as a mom who has no help and has to work full-time, I am finding it very difficult. 

My son also never lets his disease get him down.  He never complains or asks why he has this disease.  We only miss school when we have doctors appointments(we travel 3 hours to his GI doc) and only when he is very sick.  He plays whatever sports he wants and participates in any activity he wants.  So I agree it is very important to let these kids know that this is just something they have but not to let the disease run them. 

 Reply posted for IBDaMom.

My daughter was diagnosed with Crohn's when she was 7.  She'll be 10 at the end of October.  I work full time, but I have an excellent support group of family and friends who help take care of her when I have to work.  I have been blessed with a very family oriented employer, so they are a little more lenient when one has to be out for a school play, sporting event, or a sick child.

The one thing that I have taught my daughter is strength of mind.  She has to chose whether to let the disease control her, or whether she will control the disease. We don't let her symptoms get her down.  She gets up every single morning during the school year and goes to school.  Some days she may be late because of the time she spends in the bathroom, other days she may have to come home early because the cramps are too hard for her to handle.  Even if she is so tired she can barely wake up, we send her to school.  She does not feel sorry for herself, nor does she allow others to feel sorry for her.

We practice breathing exercises for the cramps, and exercises similar to the ones that most parents used when a child is a baby and has gas.  While there is no medical proof that either helps, they help her mentally control the symptoms.  It works for her. 

Our school works closely with us, so every single person that comes into contact with my daughter is aware of her condition, her limitations, etc.  Her phys ed teachers are especially tuned in due to the fatigue factor.

Although this is a very, very brief synopsis and doesn't even begin to describe our trials and tribulations over the past 3 years, to answer your question, yes, it is possible to manage a full time career and raise a child who has a chronic illness.

Kim

 Reply posted for sandpiper.

 Hearing from you guys has helped alot.  Right now, fingers crossed, my son seems to be improving and I think will be able to start school on the 18th.  And I have made the decision to rearrange my work schedule and cut my hours some, although I will still be full-time.  I can only play it by ear and see how things go.  Like it was said with these kids you never know, they could leave the house for school feeling great and in an hour feel terrible.  But everyones input has helped me feel better.  And my son is more important than any job so maybe soon I can cut back some more.    

 Reply posted for IBDaMom.

Answer:  it's too difficult, especially if you have a demanding job.

When my 12 yo was first diagnosed with Crohn's, I took a month of family leave, and then later asked to cut back my hours (I already work part-time but cut back from 3+ days to 2).  He's been doing well, and I was just wondering if this was the right decision, and thinking of increasing my hours again, when he had a minor flare a few weeks ago.  All I could think of was, thank God I have more flexibility now than I did.

Parenting a kid through this takes a lot.  I don't think I would have the emotional reserve to handle it if I were working my old schedule.  I love what I do but it is just not as important to me.  I know many of us moms need to work full-time for financial reasons, though--I wish I knew what to say about that.

 Reply posted for MARSHA.

i'm so sorry to hear about your son. i hope his dr. can get him under control in the next couple of weeks so he can start school. it would be *** him and you too. the fml is a tough call and not a good long term option. it's hard enough to plan for the days they have no school let alone sick days. it may end up being 2 to 4+ days a month. can your job afford that? mine really can't.  i'm running out of vacation days. i will keep you and your son in my prayers.

 Reply posted for IBDaMom.

  I am finding myself in the same position you are in.  Do I just take some Family Medical Leave for now or cut back to part-time?  It is very hard to monitor your childs care and work full-time.  My son has been diagnosed with Crohn's for almost three years now, he is also 9.  Taking care of these kids is itself a full-time job.  Right now I am also looking at the possibility of him not being able to start school on the 18th because he isn't doing well.  He is in a big flare and we had to switch med from 6mp to Methotrexate injections which made things so much worse.  Now we are back to the 6mp but trying to get his energy level(anemic & dehydrated) up is not going as quickly as it has in the past.  Having other mother's to talk to, and working mothers when you are trying to do both helps so much.       

 Reply posted for MARSHA.

Dear Marsha,

I was actually going to post a similar question. I have a 9 year old daughter with Crohn's while trying to work full time. Due to the unpredictability of the disease course, I was wondering if any other Moms can manage a full time position, or do most consider it too difficult??  My daughter was diagnosed in April of 08, so we are new at this. She has responded well to the intial treatment, but it has only been 3 months. Somedays she doesn't have a lot of energy due to the medications, but I still have to ship her off to the YMCA summer day camp. She enjoys it and has fun, but I can tell, she would rather not have to go every day. I am preparing myself for the eventual need to cut back to  part time.