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  • Allowing Hope Into Tough Days

    Posted by Christie Patient on July 19, 2021 at 6:11 pm


    Last week, my column was about something that has kept my mom and I connected and hopeful throughout our roughest patches. The idea of wedding dress shopping together was common ground for us when I was an angsty teenager, and it was one of the scarce few morsels of hope for the future that we allowed into the ICU. When my mom was fighting for every breath on a ventilator for three months, fantasizing about the future seemed unwise. Yet, we allowed ourselves to indulge in talk about “the dress”.

    How has hope played a role in your journey with PF? Have you allowed yourself to dream of the future without limits? Or have you given yourself some boundaries when it comes to hopes and dreams? Have you created a whole new set of hopes and dreams that you are working to achieve with PF? Let us know in the comments how you and your family have moved through your tough moments.


    Ben Robinson replied 2 years, 11 months ago 4 Members · 4 Replies
  • 4 Replies
  • morton campbell

    July 19, 2021 at 10:30 pm

    I dream

  • Tamara Cathey

    July 23, 2021 at 11:33 am

    It is very difficult when all you can do is sit still or lie down in order to get enough oxygen.

  • Christie Patient

    July 24, 2021 at 1:54 am

    @tamierni, Indeed. PF takes so much from us. I only know from a caregiver’s point of view, but I saw how painful the sacrifices–“simple” activities–were for my mom. I feel for you. Are there any small goals that you set for yourself or routines that you practice that make you feel hopeful and joyful?

  • Ben Robinson

    July 28, 2021 at 11:56 am

    Keep fighting til the end is my motto on this. Go down swinging and take some doctors with you. LoL  Cheers!  Difficult days coming for me a test, a doctor, a drivers license renewal and a vaca with the grand kids   All a struggle and an imposition on others with my condition at hand and oxygen in tow.   Battle Speed!  Raaah


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