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Young lady with CF and her views on life, illness and dying

karastikarasti BreathingMinnesota Veteran

http://www.cnn.com/2017/07/05/health/claire-wineland-cystic-fibrosis-eprise/index.html

A good story about a young lady born with Cystic Fibrosis and her views on her illness. She has been a practicing Buddhist, meditator and yogi since she was quite young.

VastmindHozan

Comments

  • HozanHozan Veteran
    edited July 5

    Thank you @karasti . My 5 year old son has cystic fibrosis. The treatments available today are great and continued research will lead to even better treatments in the future. Certainly there is a much brighter future for people with CF than there was in times gone by. Article highlights the importance of the state of mind and attitude needed when facing a long term illness. Thank you for sharing.

  • karastikarasti Breathing Minnesota Veteran

    @Hozan, my temptation is to click the heart emoji but it conflicts with its "awesome" designation, so I'll just <3
    I hope science continues to make leaps in treatments available for your son. It was interesting to me that she chose to forego a transplant with the idea that this is her body. That would be a hard thing to deal with as a parent, when you want to think of your kids living really long lives. It's interesting how we do that, as parents. We have a hard time applying our same life rule and logic to our kids (or letting them do the same for themselves). Wishing your family and your son well. Having a child with a chronic medical condition is challenging and stressful in ways people just don't understand, and in our case, at least our son's condition is well-manageable.

  • HozanHozan Veteran
    edited July 5

    Thank you @karasti . ❤❤ right back at you! After a lot of campaigning in Ireland we have got Orkambi funded by our health department. This particular drug goes towards treating the root cause of CF and not just the symptoms. He will be able to start taking it when he turns 6. Our son is very healthy and happy and we adore him. Luckily he hasnt been very sick but his treatment is our "religion". We stick to all our physio, exercise, nebuliser and nutrition/vitamin plans like glue. His younger brother who is 3 does not have CF but hangs out with him during physio in solidarity as he worships his older brother lol. I totally agree the stress and challenges can only be fully understood by somebody in a similar situation.
    Life is good though and I have been blessed with 2 beautiful sons. I have nothing but gratitude for my life.

    lobsterpegembara
  • karastikarasti Breathing Minnesota Veteran

    That is good news, on all fronts! Keeping on top of things is so important, and can be so hard if you get burned out! It sounds like you have a great family plan and support in place to help each other out. That goes so far <3 The courage that both young and old have in dealing with what life hands them is always amazing to me. Of course I would love if our son didn't have diabetes, but I think it has played a part in him being who he is because he has a different view on life.

    Hozan
  • HozanHozan Veteran

    Yes I agree! Of course I would love if my son didn't have CF or if there was a way I could take it instead of him, I would do it in a heartbeat. Having said that our son is who he is CF included. He is such a clever, warm hearted boy and feisty too! His feisty determination will serve him well on his path with CF once we teach him and he uses it constructively. He has just finished his first year of proper school and he burns with a fierce interest in life and learning.! I am certain his future is bright. I hope to your son's diabetes is managed well and that it impacts on his life as little as possible. ❤❤

    lobster
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