Managing Your Kids Lives When You Are Housebound...

[Hope]

I know there are a lot of parents with POTS on here. I wondered if there are any tips anybody would like to share? I've been muddling through this bad stretch for almost 2 years. My Cardiologist believes that I have had POTS since I was a teenager and that it's been waxing and waning since then. So I keep telling myself that I am going to pull out of this bad stretch if I keep working on it. Whether that happens or not, in the mean time my youngest son is sentenced to the effects of my illness. My husband works (thank the Lord), even though he has his own health issues, and my other children are grown adults with jobs, college, and their lives. They all do pitch in but it's really not enough. Most of the time he is with me and I can't get him out to be social very often. If I could afford it, I think I would hire a part time Nanny, but with only one of us working it's just not in the budget. I make myself feel better by thinking that he has it better than a lot of other kids in the world, and he really does. But I thought I would see what some of you all do with managing your kids lives when you are housebound?

[Kellysavedbygrace]

I have 4 kids- 15, 13, 11 and 9. I was homebound for the first 9 mos and now I get out but my driving is very limited and some days, like today, I'm in bed all day and driving is out of the question. It may be different when you only have one at home but I can tell you that this illness has caused both challenges and blessings for my children. Not sure what info would be most helpful.

Maybe you can help me understand your situation more.

How old is your youngest? Does he go to school, have outside activities, neighbor friends.? How active is dad in his life? Do you have a support system of family and friends to help?

[Hope]

I also have 4, my youngest is 9. Actually one of my oldest kids are out on their own. The two that are still home ages 21 and 19 work full time. My husband does all he can, but he himself is chronically ill with severe IBS/CFS but he absolutely takes my son out as much as he can, although the bulk of days are with me. I feel my son should be more involved with sports and/or activities, but we can't take him regularly to anything. We take him to events when we can but like you I only drive a little and where we live there are no neighbor children for him to run around with. I arrange for his friends to come over and for him to go to their houses when I can, but that too takes either energy or driving sometimes. I guess there's not much else to do. We all have our crosses in life. I just thought I would see if anybody had a better plan that they've worked out. It sounds like you and I are close to being in the same boat. Misery loves company, it gives me some comfort knowing I'm not the only one. Thanks.

[bebe127]

Hope,

I'm pretty sure you sneaked over here at some point and typed this from my computer! I can so relate. I have two children dd (16) and ds (15) and it has been tremendously hard on them. I homeschool them and always have. In the past, before I got sick, we were involved in everything: park days, music lessons, gymnastics, church activities, PE classes, co-op, field trips and on and on, you get the picture. Since being ill, my life has pretty much been at a stand still and my poor kids suffer from cabin fever much of the time. I don't drive often and when I do, it is only when necessary. In fact, I am actually out of the house 4 out of the 5 school days taking my daughter to college courses, volunteering, and co-op. I feel worse for my son as we live in a rural area and he seldom has the opportunity to see friends and be a part of extra curricular activities other than our co-op. Unfortunately many times he's not invited to things because he usually can't go because I can't take him and I don't really have many friends that are willing to take him along since I can't reciprocate. My children have a different set of friends so they don't often do things together as a group. DD usually is quite busy with her friends, especially on the weekend while my poor DS is stuck home with a sick mom. I so wish things were different.

My husband works as well (thank the Lord) and he does try to find time to spend with the kids either together or separately and that is helpful at times, but it's not like it's an every weekend type of deal. My husband has a very demanding job and he's on-call 27/7/365, so when he has time off, he'd rather stay home and veg, but thankfully he is gracious enough to do some things with the kids. Most of the time when he is off, he's busy taking care of me

Sorry I don't have any advice, I can only commiserate at this point.

[Kellysavedbygrace]

My hubby grew up on a farm. He was miles away from any friends and a get together after school or in the summer was very rare. He reminds me of this often when I start to feel guilty for not keeping up with the neighbor kids who are doing soccer, gymnastics, parties,playmates, etc.

My four are all swimmers so as much as I can (either I take them or have another swim mom- who has room in her car for 4) will take them. Some days we miss practice but bc they do this sport together it is much easier than taking kids to various places at various times. For now it is the only extra curricular activity we have going on outside of church and school. Don't know if you have some sport/hobby that is close by that doesn't require attendance every practice. If you are like me, even investigating that would be a lot of work. A couple ideas I've considered but have not yet done are:

-have a music teacher come to the house and give lessons.

-have a college student from church come over as a big/brother/big sister

One thing I make sure to do is live life with them when I feel good. I've actually pulled kids from school early to go get an ice cream or go shopping on those rare days. Somehow, if I do special things for them when I do feel good it makes me feel like I'm giving them my best.

I also try to keep in mind that they don't really need soccer. They don't really need parties or play dates. Most kids today are too busy- and if my kids aren't running around as much as others being super busy it will be ok. What they really need is a mom and/or dad who love them, are interested in their interests and talks with them.

[bebe127]

"I also try to keep in mind that they don't really need soccer. They don't really need parties or play dates. Most kids today are too busy- and if my kids aren't running around as much as others being super busy it will be ok. What they really need is a mom and/or dad who love them, are interested in their interests and talks with them."

Kellysavedbygrace,

So with you on this one. As long as they have parents that are present and love them, that makes all the difference in the world.

[Hope]

Thanks to you both. That is very reassuring.

[pink1975]

My three girls are 13, 9 and 7. We invite their friends over for playdates and sleepovers a lot. This gives them the chance to be with friends and I don't have to go out. The friends ride the bus to our house after school on Friday nights and their parents usually pick them up the next day. We have activities, but my hubby drives most of the time so even if I do feel awful when we are out at least I don't have to drive. Also, when I am in bed a lot, my kids are in my room with me. Actually, the whole family just hangs out in my room just about every single night and most of the weekend when I don't have to drag myself to work. We do homework, watch movies, play games and even eat meals together. I was lamenting to a friend that my kids memories of me will always involve me in my bed! At least we are having dinner together every night, it is just not around the dining table, lol.

[Angela]

i have a 3 yr old and my bf has a 11 yr old part time (well, off and on as ex's go) anyway, my 3 yr old is full of energy but I got him the fubu nabi 2 for christmas, best 200 dollars I ever spent. don't pay for apps,only upload the free ones, and it is a solid ipad and he loves the puzzles and drawing and letter/math games the best. awesome for days I am totally crashed out.

[HopeSprings]

Is there some activity he can do regularly on the weekend that your husband can bring him to? My son is 9 too and plays soccer. Practices are Saturdays and games will be on the weekend too. My husband brings him to practice and brings my 4 year old daughter along so she can run around and play while he's practicing. When games start, I'll be there with my little beach chair to watch. He also did karate for a little while and that was a situation where he could be dropped off for an hour, then picked up. Maybe something like that?

It's hard, I know. If it wasn't for my husband, I don't what I would do because he brings them to most of the activities, birthday parties etc. When my son was younger I pushed myself to do a lot more, but as the years pass, I find it harder to push through. My daughter was invited to a tea party last year when she was three and it was at 11:00 in the morning on a weekday. I had to respond with a "maybe" not knowing how I'd feel that day. The day came and I was way too dizzy to go and my husband was at work so he couldn't go, plus I don't know about a man at a tea party with a bunch of little girls and stay at home mothers! Anyway, I felt so guilty, so sad for my daughter and angry with myself, I just cried. I worry about how I'm going to do all the girly stuff with her as she gets older. Kelly's words are reassuring though. I agree that kids are overscheduled anyway and don't really need all this stuff. I think we probably feel worse about it than they do. My daugther didn't even know about the tea party. Just do the best you can.

[Joann]

My daugher is twelve. Before this, we rarely watched t.v. or movies, now we have many programs we watch together. She is also a crafter. We have put a card table in the living room and she is able to do crafts in the same room as me. Before we would have gone upstairs or in the basement for many activities, but I am restricted now to the main level. So our living room is messy but our central living area.

I also have many of her friends over. They are at the age where they really entertain themselves, so if I am feeling bad, I can monitor from the couch or rocking chair. They love making homemade pizza, which is really pretty easy to have ready for them.

When I am feeling okay, I take advantage of it and take her and her friends to DQ, the mall or whatever quick place they want.

She does mention missing all the stuff we used to do, but I tell her we have to be happy we can do what we can, because last year was awful and this year is a little better, hopefully it will continue to get better.

If your child is in school, how about after school activities? Our school has them right after school, so I encourage her to join them. So instead of picking her up from school at 3 I have to pick her up at 4, it is still just one time. Often you can have another parent bring your child home with theirs. In fact the later the better, for many parents that work.

Sports are tough, but again maybe another parent may be able to help. Your two older kids, may be able to help take your youngest when you or your husband can't?

But the others are right, your love and presence is what is really important. Hopefully, they will realize that we are there for them and love them whatever we are able to do. Plus, sometimes the things that they really remember are the things you wouldn't haven't even thought were important. The notes or pictures you put in their lunch, cuddling on the couch, playing their favorite game for the millionth time..

So try not to beat yourself up too much. We all feel the same way.

[Hope]

Thanks for all your input. I really appreciate it! I will just keep forging ahead. Today I was able to bring him down to the park to climb trees (while I watched of course) and have a picnic. Then I had to go back to bed for most of the day to get enough energy to take him to book club this evening which turned out that I was able to do! He saw me taking my blood pressure before we went and he let out a big sigh, I said "What was that for?" He said, "Usually when you take your blood pressure before we leave it means we can't go!" And those days I really do feel bad, but today it was nice to tell him we could go.

[Mydoggielovesme2]

My husband and I are raising our granddaughter. She was 6 when she came to live with us. I had only been sick 9 months. Now here she is 11 soon to be 12 (going on 20 haha) so all she as know is me being sick. One of the things we do together is crafting. She take guitar lessons over Skype. We do puzzles. She has friends over every once in a while. I guess for me, it's not about what she is missing out on, or what I can't do, but, where would she be if we weren't here for her. So many kids don't have parents that give a second thought about them. Tell your kids you love them, hug them, kiss them goodnight. That is what really counts!!

[ladyt]

I agree Whit the ladys above about not feeling to bad. I think also that some children are overstressed and overstimulated today. Does he have any friends living close?

I have a 11/2 year old. So friends are not an issue yet. But i hope the school stay where it is, walking distanse, and also a huge succer feild in walking distanse. I dont drive, so i hope we can have lots of activitis for him close by. But ofcourse parenting and cronic illnes is a challenge. But Whit love and creativity one comes very fare:)

[icesktr189]

My daughter is 3 and its very hard. She has so much energy, so its really hard to keep up with her. I need a lot of help from my mom who only lives a mile away from me. Most days I am just trying to survive lol Thankfully she is starting pre school soon, so I will get a much needed break!

[Hope]

Well, I have found out there is a boy soon to move in next door to us that is close in age to him, and he seems very polite to boot! He actually reached over the gate to shake my son's hand when they met! I will keep praying that this is an answer to my prayers!

[corina]

That would be just great Hope!