Met a 10 year old girl today

Chloe has a permanent ostomy because of severe Crohn's. She was such an inspiration to me. We stood in my supply store chatting and comparing our supplies, "You show me your ostomy and I will show you mine". Hers is high up like mine and she asked about bathing suits for when she gets older. So sweet. I told her she could rock a bikini if she wanted but I wear a tankini. Her mom was just amazing, let her daughter tell her story and when Chloe skipped off to go and look at new samples, I had the opportunity to speak to her mom.

It just amazes me every single day how many people live with these diseases that rob us of so much and yet, they overcome the adversity and skip around a medical supply store like it's the most normal thing in the world. Chloe, you rock, your mom rocks and I can't wait for our visit over tea.

After we all got what we needed, Chloe and I skipped out of the store together, she 10, me 41. It was an amazing, chance meeting and she has forever changed my outlook.

"and she has forever changed my outlook."

Not mine. My thinking goes to a whole new level. It is this very acceptance and going on with life that slows the medical industry in finding cures.

If people weren't so accepting of their situation, in MASSES, the whole industry would run differently. There would be massive allocation of funds in medical research and cures.

Oh, you got U.C. or Crohns, well, we got a "cure" for you, have surgery, get a bag or a pouch and get on with life. Yeah...ok....this is not right.

Of course she overcame her adversity, what choice does she have. Either fall in depression or persevere. I guess, she has a strong character, for what it's worth and at that age.

This goes for all sorts of diseases, this compliance and acceptance, makes me sick to my stomach.

Buuuuuut, sometimes there is light at the end of the tunnel. They have some form of cure for Hep C, so somehow, somewhere people complained and wanted stuff done and it happened.


Anyways, I'm just ranting here, sorry.

Thank you Silent Lucidity. I was about to say something I would have regretted.

I have my life, I am happy and I don't actually give two hoots what anyone else thinks. I harbour no ill feelings towards what has happened to me. Acceptance and healing has helped me to move on.

I have every right to post my opinion. It is an open board, we chat with other people. You don't like what I write, there's an ignore button. Use it. K?

If people weren't so accepting of their situation, in MASSES, the whole industry would run differently. There would be massive allocation of funds in medical research and cures.

I'm afraid this sums up how I feel, exactly.

But that said, I am glad Chloe seems like a happy kid. In my admittedly extremely limited experience, children seem to accept physical limitations with far more stoicism and flexibility than most adults do, and it can be quite humbling to see.

But when they grow into adolescents, they may start to react much more strongly against their disease or disability. Let's not romanticise it too much.

Well as they say it's the squeaky wheel that gets the grease, so to speak.

That said, it is interesting that once we have the surgery we (speaking for myself) lose interest in IBD. I never visit the IBD forum here at HealingWell and that is why I ( had UC) originally signed up. What drives most of us are primarily our self concerns or concern for those we love. So given we are essentially self-concerned and self-absorbed the 10 year old girls attitude regarding her situation seems rightful in that she is living life and not shirking from it. She will be challenged, as she gets older but seems to have a good base from which to deal with what lies ahead in adolescence and beyond. As is said "walk in beauty."

Post Edited (rdm) : 5/9/2014 11:12:35 AM (GMT-6)

KMF,

lolololol, what are you implying..lollol

rdm said...
That said, it is interesting that once we have the surgery we (speaking for myself) lose interest in IBD. I never visit the IBD forum here at HealingWell and that is why I ( had UC) originally signed up.

Please do speak for yourself on this one.

As somebody who had Crohn's of the terminal ileum before surgery, my chances of Crohn's returning is extremely high. In fact I'm worried it already has, because of certain symptoms. I have not lost interest in Crohn's at all. I'm also limiting my vegetable/fibre intake just like I did pre-Crohn's. For some of us, having an ileostomy does not rid us of all our pre-surgery issues. (Re Chloe: when I read that she had severe Crohn's, my first thought was: "I hope your Crohn's doesn't come back." I would never tell her or her mother that, obviously, but if I was that girl's mother I'd be terrified of the possibility.)

Okay, time to bring on the big guns in the battle of the quotes...

"Two things are infinite: the universe and human stupidity; and I'm not sure about the the universe." - Albert Einstein

¬_¬

Hi Larasmom, Thanks for sharing such a lovely story. It's like you were both meant to be there at the same time. Enjoy having tea togetherx

KLR13, you need to be seeing someone. Those aren't issues you need, or should be putting up with.

Ok, KLR, to be honest, by your post I thought you were a troll for a second. Then I looked at your older posts and it seems you do have serious tech issues with your ostomy-- so sorry to hear that. So I apologize for the accusation... but it is simply not normal for an ostomy to be either leaking or smelling whatsoever. And to use a term like "freak" on an ostomy support group?

Post Edited (Probiotic) : 5/17/2014 7:34:55 PM (GMT-6)