What do you do?

2

2sickkids

Guest
With your spare time? I always laugh when people ask me that. With both kids having cf everyone tells me I need to take time for myself. I spend most of my day cleaning cooking walking my dogs doing pt with they baby doing either my meds or the kids. When I can sit down for awhile I like to read to my kids or let my 2 yr old paint or try to play to guitar. I plan on teaching them to play the trumpet or french horn to they have plenty of things to keep busy. But I like to just hang out with my kids in my spare time it seems most people I come across think there should be something better for me to do. What's better then watching them learn new things! My baby finally started rolling and yesterday he made noise other then the newborn sceam for the very fisrt time. I about stroked I was getting real worried since we know he can't hear out of his left ear.
 

anonymous

New member
I'm right there with you. I would rather spend my spare time with my kids any day, rather than by myself. I hear the same thing, too, all the time. It's sad that the world we live in is focused so much on me time, people don't realize how much happier they would be if they had less me time and more time to focus on making their family and others happy. I have two with CF and nothing makes me happier than making them happy, we spend all day, every day together and none of us would have it any other way.
 

CFHockeyMom

New member
Spare time? That's funny <img src="i/expressions/face-icon-small-happy.gif" border="0">

I'm pretty much of the belief that once you decide to have children, you've also decided to give up your spare time (i.e. "Me time" ) for about the next 18+ years. Sure I get about an hour a day in the evening just before I go to bed but that's just really to wind down and plan for tomorrow.

I do think it's funny how our society has adopted a "Me time" culture. That's not really the attitude you should have when you decide to have children. After all, it is the equivalent of two full time jobs (more if you have kids with CF). Last I checked kids need parents 24/7.
 

JazzysMom

New member
During my recent hospitalization one of the things my Dr. focused on during my discharge planning was needing "MY" time to do treatments etc. She said "farm" my daughter out to people now that she is 7. My daughter has never stopped me from doing treatments. When she was younger caring for her made it more difficult to care for myself, but now she actually helps me. When I am on IVs at home she helps with the set up & using the saline/heparin flushes. She puts my meds in the neb etc. My Dr. does not have kids so I was quite upset about her statement. I spoke with her about it after I calmed down & asssured her that my daughter being with me is not a bad thing. If I need "MY" time then I will tell my husband that I need it & he will take my daughter somewhere to have Daddy/Daughter time, but that is when I determine.
 

HollyCatheryn

New member
Amen and Amen!We have an anti-child, anti-family culture. Think of it. We are pressured to give our tiny babies to baby-sitters at least once a week for time with husband (as if tiny babies really interupt a conversation or a nice walk together), then our toddlers need to be in Mother's Day Out, then they go to preschool. Then they go to school and we are pressured to schedule after-school activities. We are pressured to only have one or two children, at most three, so that we can get back to doing adult things and so we can spend more money on them (as if what children REALLY need is money spent on them). At my last hospital stay, it seemed as if all the difficulties in making it work, centered around my daughter being with me. They told me I should wean her and send her to stay with someone. They wnated me to stay in for 3 weeks. I kept trying to tell them that even if I did wean her, which I thought was not what SHE or I needed, she would still have to stay with me. We had just moved and had no friends in the area, my husband had to work and the family we had close-by was ill. I was IT. I pushed and finally they worked it out for me to do IVs at home. We've fought that from the beginning. Somehow, choosing to meet your child's needs is viewed as inherently detrimental to adult-life, but how much more adult can you get than caring for children and being totally responsible for them?I remember people giving us the same crap about "me" time or "couple" time. I kept telling them that we had our daughter because we wanted to be with her and raise her. In my experience, being focussed on "me" time only serves to make me discontent and selfish. By giving of my time freely, I lear what is really worth spending my time on. There have been times when I have not spend as much of it actively with my daughter (though we are never separated as a regular part of our routine). During those times, we have both suffered. This time when she needs AND wants me is so short. I have a much better chance of her wanting to be with me when she gets older if I am available to her now. If I spend all my time trying to get away from her now, why in the world would she want to be close to me when she's older and less dependant?Sorry about all that. This is obviously very close to my heart. I just try to remember that I am her parent, not her babysitter. I am the one who is supposed to be constant in her life, rather than to just drop in for a couple of hours of "quality time". Of course I will acknowledge that there are instances when we really need a sitter, but those are very specific circumstances, not just a planned part of our week. How does a child feel when you say that you just can't be sane ulness you get away from her for a while? Hmmmmm.
 

anonymous

New member
I am a fan of "me time" and try to take some every evening while Sydney is sleeping-during this time I read books or watch tv. I also walk for 2 hours each week while DH gives Sydney her bath - the bath/bedtime ritual has "belonged to them" since she was born and they love it bc it is "their time" so on the nights I am not walking during bath/bedtime, I try to relax. I also make myself have "me time" for 1 of the 2 hours that she naps each day...I usually am on the computer, reading or watching Dr. Phil during this time. I get quite a bit of me time squeezed into each day bc I only have one child and she sleeps for 14+ hours each day. Let's see, I go to MOPS twice a month (Sydney plays with her Grandma during this time-which she LOVES!) and I also take her to some play groups which may not sound like "me time" but they are since I get to have some really nice adult conversations while Sydney plays with her friends. We are both pretty social (she more than me) so we try to get out of the house a lot and find fun group activities to do.

We are planning on going away for 48 hours during the first weekend in July and while I am nervous - I am also excited to have some "adult time" with DH! We are doing one of our favorite things (roller coasting) that we haven't done since Sydney was born (I just don't think she would be too excited to ride on the tallest coaster in the world!!) so it will be good for us to get out-but I know that I will miss Sydney like crazy!! Some people may not agree but Dh and I do feel it is important for OUR marriage to do these things once in a while.... <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kelli - who has only been away from Sydney (2 wcf) for one night so far!!
 

JazzysMom

New member
When my daughter was younger & not into Daddy as much, we were inseperable. Now she does things with Daddy that Mommy doesnt & I miss her during that time. She has been away from me enough (especially this year) while I was in the hospital & I dont want to push her away while I am home. She might want to play with others or visit, but she needs to know that I am home or not far away. I realize that her need is still great even tho she is getting older. My husband is very home oriented so most of our things are family based. I like that. Even if we arent doing "family" things its nice to know that everyone is home.
 

JazzysMom

New member
I am sorry, but I had an additional comment. A friend of mine gave us a gift certificate for a local restaraunt & we decided to use it for a "date" night. So many of our friends who have children have these so I thought we needed it. It was a nice evening. Just a few hours & we had fun, but it wasnt the same. We are so use to doing things as a family & unless we need to talk about my health etc without little ears hearing & its something that is not a bedtime topic (meaning lengthy & full attention/alertness is needed), we much rather eat together.
 

NoDayButToday

New member
Kelli,
Are you referring to Kingda Ka at Great Adventure (the tallest coaster in the world)? If so, my friend said it was the scariest thing she's ever done- she actually has bruises from the rapidness of the speed increase! Have fun-- I want to try it sometime this summer too!
 

anonymous

New member
Hey Coll! The coaster I am talking about is called Top Thrill Dragster at Cedar Point (in Ohio)...I am not 100 percent sure if this is up-to-date still but on the Guiness World Record site, it says it is the tallest and fastest in the world........I am actually not as excited to ride it as I am scared but I am sure it will be a neat experience! I am the person who stands in line while thinking "why am I doing this, I don't want to do this, etc" but then LOVES the ride (especially once I am off it!!). I haven't been to very many amusement parks, just the ones nearby where we live (Kings Island and Cedar Point, both in OH) but I would love to travel around and visit more!

Oh wait, after I typed that stuff above, I decided to google the Kingda Ka and found that this is a new ride (although it is out of operation right now??) and it IS bigger and faster than the Top Thrill!! Geesh, how big and fast can they possibly get?? Looks like the Guiness site needs updated!!

Anyway, you will have to let me know what you think of it!!
Kelli
 

mammabettybear5

New member
hi i also have 2 children with cf,my time is just that my time with the kids i have 3 other children at home and my husband works 15 hr days 6 sometimes 7 days a week.the soc worker is always telling me i need a break but with 5 kids and the treatments,vests,meds and all i cant seem to make time for my self when i relly get to the point when i just have had it i come here and read,even if its only 5 mins it helps,im 33 and sometimes it feels like im 80,,lolbut i wouldnt give my life up for anything ive been fightting cf for 13 years now.have been told my son would never see 1,then 3 then 5 finally told them to stick it up there ear hes now 13.life is never easy its how you handle it i believe if you ever need to talk feel free to email me,best of luck
mammabettybear
2kids w/cf 3 wo/cf
raymond-betty@sbcglobal.net
 

rose4cale

New member
ME TIME just sounds awful and selfish, but I think it is important for us to have our own quiet time which is what I get when my kids are napping. My 5 yr old takes quiet time in her room. I usually check the computer, CLEAN and if I am lucky, run on the treadmill. My husband works so many hours and I have become a stay at home mom so I am with the kids 24/7. Which I wouldn't have any other way. We LOVE our family time. So many of our friends are running in different directions than their spouse and kids. They drop their kids off with any family member that is willing to take them. We take our kids everywhere with us. But as my husband and I were saying during his lunch today, it's time for us to get out for an evening together. We were married for 6 years before we decided to have children and it's nice to re-connect every once in a while.

So BEFORE we had kids our typical weekend was spent boating, golfing, skiing, going out for dinner and drinks, camping, bike riding, running, walking, roller blading and watching a WHOLE movie. We can still do most of that now, minus the drinks and whole movie. It's just that more time is spent preparing to do it then actually doing it. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
S

SeasonsOfLove

Guest
When Coll was a baby and I was a stay-at-home mom, I too tried to "recharge my batteries" during naptimes - even though the common advice you receive when you have a baby is to nap when they nap! I find computer/video games relaxing, and after some time - I'm proud to say that I got the the very very end (8 levels in all I think) of Super Mario Brothers!

Take care everyone,
 

HollyCatheryn

New member
I want to clarify my previous post. I came across very strongly because I feel very strongly, but I do want to be clear on this: I believe in the importance of caring for yourself. I know that if we are not healthy (physically, emotionally, spiritually) we are not as good to our families. I also do not believe that motherhood means you have to give up things that you love (intellectual, active or adult things). What I have a problem with is the idea that somehow you cannot be a good mother or person unless you can do those things without the bother of a child around. Everyone finds different ways of doing this. Some have posted about using naptimes for doing things they enjoy. My daughter has always played well by herself and I usually would use the time when she was engrossed in an activity for doing a treatment, reading, writing, checking email, making phone calls. Other things I have learned to do WITH her instead of without. I have changed my exercise so that I do things that she can either participate with me or at least go along. I have learned to read the things I want to read, but read them aloud so that she is being read to. Anyway, I just wanted to make clear that I don't think neglecting yourself is the answer.
 

JazzysMom

New member
I also believe that as CF Moms, its beneficial for our children to realize that we cant entertain them all the time. My daughter was taught from the time she was old enough to be mobile & understand that she needs to pick up toys (within reason) & I cant always do what she wants when she wants it. By no means have I neglected or deprived her. However; today as a 7 year old, I am proud to say that if I need some time to do something she will entertain herself with no problem. I also have a great helper around the house including cooking meals. I was petrified of being like my neighbor/friend who constantly complained that she didnt have time for anything because she was cleaning up after everyone. I use to listen & be sympathetic then I finally said & whose fault is that?! Its a balance. I dont think many people truly realize what being a parent entails & most of them dont have the added tasks of caring for a chronic illness. I have always said that many people are spoiled & dont really know what "stress" is. I dont want to generalize that too much because I know there are exceptions.
 
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2sickkids

Guest
Knowing that I have chronic health problems as well as my sons having cf. I consider every silly thing they do great. I get upset when I see people yelling at they kid for being kids. My oldest loves to help me sweep and mop and supervise while I cook or do dishes. I worked too hard to get them to take them for granted. I was told both times I was pregnant I might not make it so all I want to do is spend as much time as I can with them. I must admit it is funny cleaning while they nap or going to the grocery store while the they sleep with their dad being me time strange but it relaxes me. We do our breathing treatments together so watching tv is not really an option with three nebs going at the sametime it gets loud. Then I do cpt on both of them at the same time. My oldest is starting to try clapping on everybody when they cough now. If anything I feel bad for their dad he is working all day every day then he comes home and does the lawn or takes the trash out. If I 'm not well at the time he'll do anything I didn't get around to. He has to worry about all of us plus the bills. If I get too sick he tells me goto the hospital. He's never sick so he is always after me about my blood sugar and meds he always says I know the boys got their meds but did you take yours.
 
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