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Thread: Mothering with cf

  1. #1
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    Mothering with cf

    Most mother's #1 priority is their child/family. Mother's with cf have to dedicate a lot of time to their health only to still get sick on occasion. Any tips or thoughts on this subject?

  2. #2

    Mothering with cf

    Hi LouLou,
    I just answered a similar question for Liza under "Not Enough Time in the Day" so I'll post that reply here, too, at the end of this note to you.

    It does seem like us CF moms have an uphill battle with our kids at times. We do everything we possibly can to keep them healthy and then they still get sick "just because." And, that's perhaps why it becomes even more important that we take good care of ourselves otherwise, we will get depressed and burned out. We can only carry on with the stress load that we shoulder for so long without relief.

    There are no easy answers and I gave some ideas in the other post but I also want to add: get help from friends, family and church. I've noticed that us CF moms can be pretty independent and we need to be for many reasons. But on the other hand, we need to realize that we can't do it all alone.

    Hugs,
    Lisa

    Isn't this one of the biggest bummers of parenting- having to set a good example? I just hate looking in that ole mirror sometimes. And, honestly, just an awareness of the importance of example can motivate us to do the right things. I have found that oftentimes, parents will do things for the sake of their kids before they will do them for themselves. And so, this is just a good reminder of how important example is but not meant to cause guilt (we all have enough of that already!).

    Taking good care of ourselves when we have a special needs kid is probably the hardest thing in parenting because of the time demands on us. And, when kids are really little, it's nearly impossible. But I want to encourage those of you with young children that things do get better. Both of my kids are in school now and, although I am very busy, I do have more "mommy-time moments" available.

    But even when we don't have a block of free time, we can all do little things that "feed our souls" like: a quick bubble bath while our partner watches the kids. Or a snitch of chocolate and good coffee. Or taking a 15-minute walk around the block with the kids. Or, spending a few minutes on this website giving/getting support. These are all ways to take good care of ourselves if they are helping to renew us.

    And, even when we blow it, we can still set a good example: "Gosh, I know I'm not supposed to eat that whole box of Trader Joe's Frosted Gingerbread Men but I did. Oh bummer. But, tomorrow will be a new day and I'll do better."

    And of course when tomorrow comes we say, "Wow! I made it through a whole day without eating another box of Trader Joe's Frosted Gingerbread Men! I am so proud of myself!" :-)

    The other important part of example is not tolerating disrespect from our kids. There are good reasons for this which are on the video clip.

    I hope this gives you some ideas. Thanks for your question and honesty.

  3. #3
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    Mothering with cf

    Lisa, While I'm sure some of your advice is applicable. I am the one with cf. My son also has cf but that was not the point of my post. With Mel's recent passing, it has me thinking about parenting with cf and how we can best protect our children while still introducing them to the realities of cf...which really isn't an option not to do since they see our bloody sputum, taking breaks more than other moms for coughing fits, ports, IVS, feeding pumps, hospitalizations, etc. Certainly seeing it their whole life it is probably just a new normal but is that okay?

  4. #4

    Mothering with cf

    Hi LouLou,
    Whoops! I misread your post (sorry) so thank you for clarifying. This is a hard question and Dr. Cline will have more thoughts to add.

    But, it seems to me, that you are in a "better" position than most of us to help your child understand the realities of CF, as hard as they are, and still to impart a sense of hope and optimism. Because our kids take their cues from us, you are your own child's best example and role model for "how to do CF right."

    At some point, I know my own kids will say (or at least think): "Yeah, Mom, easy for you to say 'Be hopeful', you are not the one with CF." That's why I rely on inspiring people like you and Mel to help keep <i>me</i> going. And I share you with my kids as a role model for them.

    Love and Logic teaches that we can build character and coping skills (in our kids) by assuming that children have the strength and ability to handle the truth when it is given in a loving and caring manner. You are almost "forced" into this because you can't very easily hide the realities of CF from your child.

    So, in answer to your last question, yes- it is okay for your child to see your equipment and hear you cough. That doesn't mean that you expose a young child to the most difficult aspects of your CF condition but on the other hand, if you have a bad coughing fit and you cough up some blood, it's how you handle it that will make the biggest impact.

    Rather than hiding it, it might be more productive to respond along the lines of: "Wow, that was quite a cough! I'm glad I got some of that yucky stuff out of my system. Lucky for us, we have great medications to help keep us as healthy as possible."

    I hope this answers your question better. Thanks for being here for us. I think Mel's passing has made all of us a bit more thoughtful about what might lie ahead in the future. And, her example showed us how to make the most of today.
    Hugs to you dear LouLou,
    Lisa

  5. #5
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    Mothering with cf

    LouLou,

    I have thought of these questions as well, though because I don't have CF, probably on a more superficial level. But when I was getting no breaks from exacerbations, I was having trouble seeing anything but downward progress for me.

    I do think that the littlest kids accept normal as whatever is in your home. As they get more advanced observation skills, they start to compare and you hear: why don't *you* come with us to the park? why are you coughing all the time? how come you are so puny? (quoting my son there) when are you going to die? what happens when you die?

    I think Lisa's advice of monitoring your reaction is crucial. I have trouble not getting defensive or frustrated or hurt when my kids compare our family to others--whether from a money or health standpoint. I also am tempted to point out how other families have "issues" which doesn't exactly respect their privacy ;-)

    But I think you can remind your child that each family is different--with a few details (some daddies and mommies don't live together, some families have two daddies, some mommies get headaches or take medicine for bone aches/arthritis. Some people have messy houses, some have neat houses. But families love each other and are all trying our best.

    Now when these comparisons and discussions move to death, religion/metaphysical stuff is individual to the family...or even the parent. My neighbors' relative are all in heaven. My deceased family is energy in outer space--I think that is how my kids interpret my answers...

    It is hard to imagine how you can prepare your child to lose you when he/she is 12 or 17 or 22 or any age. A close friend of mine lost his mom in a span of four months to brain cancer when he was in college. It derailed him for a couple years, partly because the illness was a total surprise. He is now a happy and successful person, but I know he misses her 12 yrs later.

    I would hope that the love and logic thing of installing an inner parent in your child, so that they function well without constant intervention works. I lean toward thinking that nature also determines how much children are self directed versus adrift. But if you optimize the "nurture" component, then you've done the best you can. But this mostly addresses the question of how to prepare your child to recover from your loss enough to function well. I think your child will always carry you in his/her heart and miss you. In a way though, that is the human condition and eventually no one escapes loss. Though in no way does that make it easier to accept, particularly for younger children.

    I'd love to hear what you and others have been thinking/doing in this area.

  6. #6

    Mothering with cf

    Hey, LouLou:

    Gosh, I often think that two healthy parents have it SO easy. Single parents have to take care of everything. And of course, the same extra energy is called for when a parent has a chronic illness.

    It is most helpful in both cases to build really loving and good support group. Of course that alone takes some time and energy, and sometimes we're so busy putting out fires that we put off those all important catch-up calls and notes to friends.

    Sometimes I've felt many individuals are too slow to ask others to help out. After all, in giving to one another, real character growth takes place. And we don't want to deny others the chance to grow, do we!?

    If we show an honest concern, listen and help as necessary when we hear of the trials of others, then they will almost always help out when we need a few extra hours or even days of help.

    The nice thing about most people is that down deep they are nice! And want to helpful. So, without being sucky, demanding and entitled, let's take advantage of their need to grow.

    And when we, as adults are ill, we give our children a chance to grow when we are honest with them about the higher expectations that we will need to have of them.

  7. #7
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    Mothering with cf

    I have a hard time with this, I feel like I spend SOOO much time making sure my husband, step-kids and own daughter are taken care of that at the end of the day I KNOW I forgot to do my meds or exercise. I know that I need to do them and that if I don't I won't be here to take care of her or anyone. However for some reason its still hard. I mean I never forgot her meds when she is sick (No cf) but stuff for colds or whatever...so WHY is it so hard for me to remember mine?

    Another thing that is hard is finding enough time to get GOOD sleep, b/c I know I need it. I like to try and take naps when she does, but honestly sometimes I just wanna sit down and do something for MYSELF without having to get up 500 times for a "dink" or this or that, ya know.

    Parenting WHILE having CF is hard, b/c sometimes there just doesn't feel like enough hours in the say UNLESS I revolve it around cf. Where is the balance?

  8. #8
    jennylivingston
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    Mothering with cf

    Although I don't have much advice, I wanted to post and say YOU'RE NOT ALONE. I too have really begun to struggle with this, and although I haven't found my comfortable balance yet, here are some thoughts:

    I had my first adult hospitalization when my daughter was 3 months old... I don't think that's just a coincidence. Being a parent can be difficult for anyone, even MORE SO for us when we're not entirely healthy to begin with. I feel SO GUILTY when I'm more worried about my daughter bringing germs home with her (to me) from daycare than I am about her getting them in the first place. I know her immune system can handle a cold, but there's no guarantee that mine can.

    We HAVE to take care of US in order to be there for our little ones later on. I find some comfort in the fact that I think in the long run Morgan will just be happy that I'M THERE. She probably won't even remember that time I let her sit crying in her infant swing so I could finish my TOBI.

  9. #9
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    Mothering with cf

    Kind of along the same lines, I recently found out something about a child I know. Apparently, her mother has heart issues that will ultimately lead to her death, but not exactly sure when. She looks like she's nearly there. Anyway, the child used to be this bubbly, happy, playful child and since the mom was diagnosed with the heart problem 2 years ago, the child has completely withdrawn. Barely whispers when she talks, doesn't smile, has no friends... It's really very sad. She's 13 and my son's only 5, otherwise I'd suggest he befriend her. I try to talk with her, but she really needs someone her own age.

    Anyway, it made me think about what's going to happen with my kids when I get really sick (that and Mel). And I'm very concerned. I'm going to try to be as active as possible and have them be as active as possible in sports and other activities outside of our home. But I wonder what else I can be doing so that my children don't end up like this other child.

  10. #10
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    Mothering with cf

    Kind of along the same lines, I recently found out something about a child I know. Apparently, her mother has heart issues that will ultimately lead to her death, but not exactly sure when. She looks like she's nearly there. Anyway, the child used to be this bubbly, happy, playful child and since the mom was diagnosed with the heart problem 2 years ago, the child has completely withdrawn. Barely whispers when she talks, doesn't smile, has no friends... It's really very sad. She's 13 and my son's only 5, otherwise I'd suggest he befriend her. I try to talk with her, but she really needs someone her own age.
    <br />
    <br />Anyway, it made me think about what's going to happen with my kids when I get really sick (that and Mel). And I'm very concerned. I'm going to try to be as active as possible and have them be as active as possible in sports and other activities outside of our home. But I wonder what else I can be doing so that my children don't end up like this other child.

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