Friday, March 12, 2010

Every body's down

I have had a very hard week, and by the looks of facebook so have many others.  I was actually in the middle of a full blown "why me, why Tyler" break down when I got a call that my mom was not doing well  Suffering from Copd, Emphysema she has had hard days, but never that she couldn't get out of bed,  or not being aware of what day it was...So Saturday I went over got her out of bed and took her to the hosp.  For some reason it was hard, really hard to hold back tears.  Hadn't even talked to the doc yet and I was so shook up.  Never really just  watched her breathe before. How did I not notice before how much she really struggles to breathe.  I guess it progressed fairly slowly..kinda snuck up on me.  She was the same old mom to me, just toted an oxygen tank with her every where.  She never really complained, took her meds, was on oxygen couldn't work any more...But really didn't look like she was struggling until Saturday.  Watching her like this has made me realize that she is not going to be around forever...She is not the invincible person I thought she was.  My grandmother died from Emphysema when I was younger but I don't remember her fighting to breathe like this. maybe I was too young to really understand.   I sat with my mom while they did her breathing treatments, I held the mask over her nose and mouth for her telling her to "just breathe" and when she answered with "I just can't anymore" My world crumbled..She is going to struggle for every last breath...and all I can do is hold her hand...Is this what its going to be like for Tyler?   How do people stay so strong...I feel so helpless and useless...


  1. Hi Kristine,
    My name is Christie and I'm 53 years old with cystic Fibrosis. My mother has COPD and Emphysema. For years I asked my Mother to quit smoking and she always said "I'm going to die doing what I want to do" My argument was "you want to die like Grandma (My grandmother died of lung cancer she smoked for 30 years)One night she woke up and couldnt breathe so Dad had to call 911. She spent the night in the ER and never smoked again. She has these "bouts" now about once a month and each time she says "I don't want to live like this anymore.She has asked me several times. How do you do it? I just answer I don't know. I know God gives me strength and so does my Husband and Son. I don't think about tomorrow, I live one day at a time and never pass up the oportunity to have fun. I never have a "Well I should have done this or that...Now about you beautiful son. Every cystic patient is different. Look at my age. Suppose Tyler live to be my age or older. I know a man who is Double Delta and he is 79..You will find the strength when you need it, as for feeling helpless and usless.You have children that think you can do no wrong nd love you very much. You are thier Hero...Hold your Mothers hand and tell here you love her. Love heals

  2. Kristine-

    I watched my father pass away from pulmonary fibrosis, I've been in your shoes too...even though in the back of your mind that you know if things go "correctly" you won't outlive your mom, but that doesn't make it any easier.

    A few years after my father's death, Gavin was born...and as you know the CF diagnosis. I felt like I was being haunted by my history with my dad and I was never going to get away from it. I clearly remember say, "it's happening all over again!"

    It's ok to have bad days...I honestly blame it on the weather! No matter where you live, at this time of the year we are just DONE WITH WINTER! Frustrated with the season, frustrated with being inside and frustrated with LIFE! So when life throws you off course at this time of the year, I think it just makes everything that much harder to bear.

    I have to remind myself, our CFers are going to be SO much stronger, braver, patient, perseverant (is that a word? lol) etc. than the typical kid. Gavin has barely been on this earth for a year, and he teaches me each of those skills each and every day.

    I wish I had words of wisdom that could make everything better for you, but we know its not possib;e. Just know that it's ok to have the not so good days, its ok to grieve, and its ok to be sad...but then the next day you gotta wake up & keep on truckin! That's what us Super Mommas gotta do!

    Love you lady!