Worrying about the future

[kimmidwife]

I was thinking today about how much our kids to through on a daily basis. Will they be able to go to college? Will they be able to have a full time job? If they have bad days and good days how will they be able to go to work every day? I worry so much about my baby!

 

[my little penguin]

someone once told me
"worrying is like paying on a debt that you may never owe."

When our kids were infants you couldn't imagine school or leaving them when they had a cold.
the best you can do is prepare them now like any other kid- to take care of themselves while you are their to catch them if they fall.
AND DO not treat them as if they are only crohn's kids.
They are kids first crohn's maybe third or fourth.

College is hard for most kids
as is work for MOM's of chronically ill children
but it can be done
just take it one day at a time.
no more no less.

 

[Farmwife]

Hugs, hugs and more hugs.

I had to pick up ulcer meds today. Not for Grace but for myself. I'm right there with ya.

 

[crohnsinct]

Aw Kim :ghug: These feelings do have a way of creeping in when things aren't going well don't they? I am sure when things get straightened out for your DD, you will be feeling much better....not worry free mind you just much better. I hope CHOP is able to give you some good guidance. Your girl deserves to start feeling better soon!

 

[Maya142]

My older daughter, who has Ankylosing Spondylitis but not Crohn's, is 19 and a college sophomore. She's had a really rough time in college - multiple flares, switched from Remicade to Humira, and had to take a semester off, because she missed so many classes that she got so far behind that it was impossible to catch up. She's finally doing well now and we've learned a lot in the last year. She's learned that having to take a semester off isn't the end of the world, and I'm always amazed by how well she manages by herself, even on days she isn't feeling well and is in a lot of pain.
I used to worry a lot about her going to college (and in a couple of years, M, my daughter with Crohn's will follow!) but now I don't worry much at all. I know if she's too sick to be in school, she'll take some time off, or get the Office of Disability Services to work with her and her professors to give her some time to recover. She goes to school about an hour away from home which is also very helpful - if she feels terrible, she can just come home.
I guess I'm rambling a bit, but what I'm really trying to say is not to worry too much, kids figure out how to manage. It's difficult but it can be done! My daughter is now a Physics major and is doing very well in her classes. She still has bad days but has learned to work around them.

 

[DanceMom]

My daughter is younger than yours, but I'm only able to focus on short term things right now. Like "I hope she can get through school next week without coming home sick" and "I hope she is well for the holidays and can really enjoy things."

My girl is tough. Super tough. I get an upset stomach and I want to crawl in bed and whine. She keeps going and does some pretty amazing things even when she isn't feeling well. IBD doesn't define our kids but it sure as heck makes them stronger.

 

[Amy2]

If one reads the adult section here, you'll see that there is good reason to be concerned. Many people with Crohn's simply cannot work and others cannot work full time. As parents of 2 children with Crohn's, we have tightened our belts, rented out a couple of rooms and are saving all we can for an uncertain future.

I try to spend time planning, rather than worrying.

 

[Momto2girls]

My brother has crohn's that wasn't diagnosed until he was 20 but in hindsight we all believe he had it long before that. He was able to not only get through college but law school, too! He's working full time as an attorney and has two young children. so maybe this will give some of you hope!

 

[Sascot]

I have also been feeling this way the past few weeks, but I have to say that my son's school has been great whenever he is off school. They are very helpful and happy to let him catch up as he can. I am just hoping that as he goes through life, each place, be it work or uni, will be just as understanding and he will do well there to.

 

[Tesscorm]

Kim, when our kids aren't well, it's so easy to imagine that this will always be the way it will be and then, as Amy said, you read through the adult struggles and begin to imagine that as our children's future. But, that's NOT necessarily the case! Many, if not most, parents and members come here when they are in need of advice/support, when all is well, you're not reading their stories of the life they're leading - vacations, promotions, marriages, children, etc. It's so easy to forget there are millions of crohns patients living and enjoying successful lives. While none of us will ever live without worry of what tomorrow will bring, try to balance it with the realization that you DON'T KNOW what tomorrow will bring and that it won't necessary bring 'bad'.

I've mentioned my aunt before - she had an absolutely horrible time for the first 2 years after diagnosis, no meds were working, she was in constant pain, losing weight, bleeding, etc., but they eventually found a med combination that worked and she has done really, really well for the last 10+ years! She ran her own successful (demanding) business for at least 5 of the past years, then retired and, since retirement, travels, socializes, eats out, etc. (But, she does acknowledge her crohns and controls her diet, rests, etc.).

I also know of one SIL's uncle who has had crohns since a child - he is a dentist with his own practice. Another SIL's sister is a VP at a large, mid-size company and is quite successful professionally. When Stephen was diagnosed, suddenly I heard of so many others who have crohns - a colleague's hockey teammate has crohns, colleague said he's never noticed any difference in his lifestyle, daughter's best friend's dad - has his own marketing company and teaches dance... while I don't know these people well (or, some, at all) nor their day-to-day situations, they are people who are doing well...

I certainly don't think there's anything wrong in preparing for problems (and, OMG, yes I do worry about worse case scenarios and try to plan for them!!) but I try to remind myself that planning for these situations doesn't mean that they will come true.

But, I guess, it's not easy for any of us to 'forget' about the fear and worries... :ghug: :ghug:

 

[kimmidwife]

Thanks all. Hearing everyone's stories is reassuring and making me feel a little better.

 

[Twiggy930]

This has been a worry for me the last month or so too. It is just so horrible when they aren't feeling well and there is no clear cut path to getting them feeling better.

 

[Brian'sMom]

Lets just all say and hope, "Our kids will be fine because the scientists will find a cure while they are still children". They seem confident there will be a cure... please oh please be sooner than later!!

 

[Mom2oneboy]

(((Hugs)))) We all worry about our kids and what the future holds. It's the fear of the unknown that can be so scary. If I look too far out in the future I can get scared about so many things. Worry robs us of the joys of today!

 

[ChampsMom]

Oh Kim... I so understand what you mean. Alex will be 17 this month.. 17?! He has one more year of high school and then he will leave to serve a 2 year mission for our Church. Just the thought of it sends a wave of panic through my body. Faith is the only things that keeps me going...

I love MLPs quote - that's a keeper! Thanks!

 

[DustyKat]

Hey Kim…:ghug::ghug::ghug:

Worry, worry, worry, worry…the story of my life! :lol: So much so I have even considered changing my name to WorryKat! :eek2:

Seriously though, what the future holds surely does leave you breathless at times and while there certainly are those on here that have disease that affects them far more severely than others it does skew the overall outlook as those are in remission and/or working and/or are going through milder times etc are for the most part not here.

My two have had their trial and tribulations both pre and post op but they finished high school, went onto uni and both have now just completed their undergraduate degrees. Sarah is moving onto a postgraduate masters and Matt is moving onto honours.

My husband’s cousin that has Crohn’s has 5 year old twin girls and lives and works on a sheep property. She also does the most fab cake decorating! Yummo!

The butcher in town has Crohn’s and works full time.

I just found out a few days ago that our new neighbour has Crohn’s, he owns a business and works full time.

Another older lady I know has had her fair share of issues over the years but throughout that time she, married, had two children (now grown) and has worked all her adult life.

These are the people I know personally and as Tess has said…there are others that I know of through friends that are doing equally as well.

Now all I have to do when the black dog comes a calling is think of these bods and remember that the glass is half full as opposed to half empty!

Onwards and Upwards!

Dusty. xxx

 

[Tesscorm]

I recently read a new thread in the My Story section... this is the link to the story. Although this young man is currently in a flare, he has such a great attitude and outlook that I wanted to share it. It certainly helped remind me that good days do follow the bad ones and, over time, the good can certainly outweigh the bad!! :ghug:

http://www.crohnsforum.com/showthread.php?p=728210&posted=1#post728210

 

[CarolinAlaska]

I'm always worrying too. My biggest worry is how Jae will do in high school, then in college, etc. These comments were reassuring to me too.

 

[Psugirl]

I'm still new to the forum and haven't gotten on since Lauren was in the hospital. She is 19 years old and was diagnosed with Crohn's on October 4, 2013. She will be leaving for Tallahassee in January to attend Florida State University. We are so happy for her & she is so excited to go away and experience college life! It's bitter sweet now because of this diagnoses. She is supposed to be starting Humira but we are still waiting on insurance approval (not worried about that as we have good insurance). Her Crohn's is severe and on top of all the "normal" things we as parents worry about with sending a child off to college we now have this to worry about. I have the same worries about sending my Crohn's child out into the world by herself. I just hope we can get this under control so she can be successful.

 

[Psugirl]

Oh, by the way, I still haven't figured out how to flip that dang picture!!!! Lol

 

[Farmwife]

Dusty or Jennifer or anyone but me, can you rotate Psugirl's avatar? Thanks

Psugirl, I hope things get sorted for your girl soon. HUGS

 

[DustyKat]

Only admin has access to changing avatars. I am sure Jennifer will be along soon.