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Thread: Mothering with cf

  1. #11

    Mothering with cf

    Jeana,

    I think your idea to get your kids involved in activities and build ties with the community is really good.

    Also, I would think that encouraging them to share their fears and feelings about anything as much as possible with you and their dad, starting long before things get scary, may also be helpful in the long run.

    It is tricky though. My hunch is that you don't want to start reading books about dying parents or talking too much about your health/life expectancy because you will just make them live under a cloud of fear when they are probably too young to understand time and probability very well.

    I am so sorry about the girl you spoke of. Is their anyway that she can babysit/be a mother's helper for you? Sometimes being around other adults who are not part of the family is really helpful for kids in bad situations--gives them a breather from the sadness.

  2. #12

    Mothering with cf

    <img src="i/expressions/face-icon-small-sad.gif" border="0">
    oh my gosh!! i know how u feel. when i think about it i want to cry, because i think that a child shouldn't have to see there mommy be in the hosp for 2 weeks, or have tubes comming out of there bodies. i don't think that a mother should leave her kids for any reason. if i miss my daughter so much, i can only imagine how my daughter feels. (she's only 4) but on the other hand i understand how important it is to take care of myself in order to be with my daughter, and take care of her. my daughter tells me to do my breathing treatment when i am starting to cough. she helps me with my iv meds when i am able to go home with them. she is so understanding and so smart that i kinda makes me feel better knowing that she knows i am comming back. and when i do my breathing treatments we play cards together. when i have to spit it out she puts her head in the pillow or just turns around. kids are smart and they understand more than we think.

  3. #13
    Hmm, I took this topic a different way. I am a mom with CF. Sometimes its very hard to balance the needs of my two kids and husband with what I need to do to stay healthy. I definitely know that when the children were younger, my FEV took a real hit because I wasn't getting enough sleep or exercise. Thankfully I am part of a team and we both realize that if we want there to a long-term, sometimes something has to give in the short-term.

  4. #14
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    Since I wasn't diagnosed with CF until after I had kids I think my perspective and my health may be different from other CF mom's, but I think after diagnosis I am now a better mom.

    I truely enjoy the little things each day. I take more time to listen to my kids now. I make sure I make them happy in ways that matter to them verses ways that matter me to. I recommend the book Love Languages of children. My one daughter feels loved by words of affirmation and is emotionally crushed by verbal criticism. To make her day happy I must remember to compliment her on each good grade no matter how easy it may he for her to obtain. My other daughter needs quality time. So if I ask her to read to me while I vest her whole day has gotten happier.

    As I write Im in bed sick and missing our family karate class which I really enjoy, but I know my kids emotional buckets are full even though I did not go to karate with them tonight, so I don't feel guilty taking time for myself and squeezing in an extra vest and hypersal treatment.

    CF stinks, but knowing I have CF has made me a better mom.
    38 year old with CF mom to two wonderful daughters (1 treated for, but not diagnosed with CF) and a supportive husband

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