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Child in medical isolation vs. Purim celebrations for others
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amother
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Post Sun, Mar 05 2017, 2:24 pm
I was not sure where to put this; it could fit into so many different categories.

My 6.5-year-old daughter had a bone marrow transplant at the beginning of February and was just discharged from the hospital a few days ago. We are thrilled to be home and reunited with the rest of the family after weeks in hospital. She is, B"H, doing really well, but she is still at high risk for infections and other complications. This being so, she has a number of restrictions. One of these is that she is not permitted to be in public places or around groups of people. She is supposed to stay home and is only allowed occasional visitors. We can expect these (and other) restrictions to last 9-18 months, depending on how her recovery progresses.

The kids are all looking forward to Purim. Usually, we go to shul to hear the megillah and attend a communal seudah/Purim party. As an alternative, I had hoped we could get someone to come to our home to read the megillah for us, as my daughter will not be able to go to shul. I also imagined having a nice private family seudah and doing fun activities together as a family.

Now my other kids (ages 14, 11, 9, and 4) are upset with me. They do not want to stay home and say it's not fair that they have to stay home just because their sister can't go out. My oldest has even gone so far as to say I'm, "ruining [her] life!" On the other hand, my 6-year-old cried when she thought that the other kids were all going to go to shul, to Purim parties, etc. without her.

I have no idea what to do. I sympathize with both points of view. I don't want to make my other kids miss out on all the fun their classmates are having, but I don't want to be stuck at home alone with a very sad little girl while everyone else is out partying.
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Iymnok




 
 
    
 

Post Sun, Mar 05 2017, 2:27 pm
Have someone come and read for you and her. Send everyone else to Shul for tha main reading.

Don't have ideas for the seuda. Hatzlochah.

Refua sheleima!
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Liba




 
 
    
 

Post Sun, Mar 05 2017, 2:29 pm
Do you have Chai Life line or anyone else of the sort in your area? This seems like something right up their alley.

I would think that megialla and making home fun would be best, though if your oldest is having such a hard time it might be best to make arrangements for them to spend their day with a good friend doing with the other teens are doing...

Refuah shelayma!! I hope next Purim everyone is healthy and out partying!!
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amother
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Post Sun, Mar 05 2017, 2:41 pm
Liba wrote:
Do you have Chai Life line or anyone else of the sort in your area? This seems like something right up their alley.


Yes and no. We are registered with Chai Lifeline, and they have helped support us through this situation in certain ways. We live in a smaller "out-of-town" community, however, so there aren't any Chai Lifeline events, support staff, or the like. Maybe I will contact them just to see if they have any suggestions.
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zaq




 
 
    
 

Post Sun, Mar 05 2017, 2:58 pm
This is a golden teaching moment. You have middos, priorities, family loyalty, caring and consideration for others, putting other people first, proper behavior towards a sick person, the meaning of sacrifice, the meaning of veahavta lereacha kamocha and so much more.

Your 14-year-old will of course say you're ruining her life. That's how children that age think: in all caps with multiple !!!!!!s. She would say the same if you refused permission to wear purple nail polish or thong undies or whatever else the girls in her crowd have their heart set on this morning.

Nevertheless, at 14 she is old enough to be expected to give up a good time for one day in order to cheer up her little sister who has only recently been sprung from prison and still cannot go out and celebrate. She is old enough to put herself into someone else's place and imagine what it must be like to stay home with nobody but mom for company (sorry mom!)while everybody else is out having a riproaring good time.

Furthermore, are you not concerned that your other children gallivanting all around town might be carrying home infections picked up in the course of their mingling? Understood that it is unrealistic to keep your children home from school for the duration, but surely the parties are optional. We are not talking about an eternal ban but about one day. Yes, a very big day, but still just one day.

If you let your children abandon their sister at this time, you will be teaching them that pleasing yourself and your friends is more important than doing right by your family.

However, I would not let them hear you say that you don't want to be stuck at home alone with just one child while everyone else is out having fun. That makes you sound as if you want the kids to stay home to keep YOU company. Make it about family pulling together for family and doing the right thing, about treating others the way they would want to be treated.

Refuah shleimah to your dd and may she soon be able to go out celebrating with all her friends and siblings.
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simcha2




 
 
    
 

Post Sun, Mar 05 2017, 3:12 pm
I actually see this slightly differently. I think you should allow your other children to go out for part of the day.

It is hard being sick, but it is also very hard being the sibling of someone sick. They give up a tremendous amount without the sympathy. Parent's time that is spent with the sibling at the hospital, and parent's emotional capital that is being spent caring for a sick child. At 14 your dd knows that this is how it is, but maybe she feels, (I believe correctly) that sometimes her feeling and needs need to come first. I am sure that she has quietly (and perhaps not so quietly) given up her wants numerous times having a sick sibling, I'm guessing without it begin recognized every time. You could do this for her.

Tell the other kids they need to be home for seudah but otherwise let them be kids, not just kids with a sick sibling.

At the seudah you can do everything possible to bring simchas Purim to your 6 year old.

I wish her a Refuah Shleimah and all of you a Purim sameach.
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amother
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Post Sun, Mar 05 2017, 4:36 pm
simcha2 wrote:
At the seudah you can do everything possible to bring simchas Purim to your 6 year old.

I wish her a Refuah Shleimah and all of you a Purim sameach.


Amen.

Does anyone have any fun, but low effort, ideas for increasing the simchas Purim at home for my 6-year-old? I feel really overwhelmed. I haven't even unpacked everything from the hospital yet. I can't cook ahead because everything has to be made fresh the same day to be safe for my daughter to eat.
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notshanarishona




 
 
    
 

Post Sun, Mar 05 2017, 5:03 pm
Maybe a new game? Purim Coloring book? Decorate the house?
I know some organizations will send musicians / singers to come entertain cholim on purim.. depending on how out of town you are and if she would appreciate it.
Refuah shlayma.
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sequoia




 
 
    
 

Post Sun, Mar 05 2017, 5:10 pm
simcha2 wrote:
I actually see this slightly differently. I think you should allow your other children to go out for part of the day.

It is hard being sick, but it is also very hard being the sibling of someone sick. They give up a tremendous amount without the sympathy. Parent's time that is spent with the sibling at the hospital, and parent's emotional capital that is being spent caring for a sick child. At 14 your dd knows that this is how it is, but maybe she feels, (I believe correctly) that sometimes her feeling and needs need to come first. I am sure that she has quietly (and perhaps not so quietly) given up her wants numerous times having a sick sibling, I'm guessing without it begin recognized every time. You could do this for her.

Tell the other kids they need to be home for seudah but otherwise let them be kids, not just kids with a sick sibling.

At the seudah you can do everything possible to bring simchas Purim to your 6 year old.

I wish her a Refuah Shleimah and all of you a Purim sameach.


I totally agree.

Depriving them of a fun time with their friends is a sure way to make them resent their sister. And you won't teach them anything either. Nothing is taught by force and suppression.
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cnc




 
 
    
 

Post Sun, Mar 05 2017, 5:16 pm
simcha2 wrote:
I actually see this slightly differently. I think you should allow your other children to go out for part of the day.

It is hard being sick, but it is also very hard being the sibling of someone sick. They give up a tremendous amount without the sympathy. Parent's time that is spent with the sibling at the hospital, and parent's emotional capital that is being spent caring for a sick child. At 14 your dd knows that this is how it is, but maybe she feels, (I believe correctly) that sometimes her feeling and needs need to come first. I am sure that she has quietly (and perhaps not so quietly) given up her wants numerous times having a sick sibling, I'm guessing without it begin recognized every time. You could do this for her.

Tell the other kids they need to be home for seudah but otherwise let them be kids, not just kids with a sick sibling.

At the seudah you can do everything possible to bring simchas Purim to your 6 year old.

I wish her a Refuah Shleimah and all of you a Purim sameach.


I agree with this but liked the previous post as well because of the point about OP's other kids bringing home lots of germs... is that a concern?
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yogabird




 
 
    
 

Post Sun, Mar 05 2017, 5:21 pm
OP can you and dh switch off? One goes out for Megillah, one goes out with the kids for the meal?

I know it sucks to be stuck inside on Purim, but would it help to think of it as a short-term sacrifice so that you and your child should be able to celebrate many more purims in good health iyh?

Also, I don't know if your child is up to it, but would your docs allow your daughter to go outside for a bit to deliver mm and just see the sites, maybe wearing a mask? I know some protocols don't restrict outdoor activities as long as there are no crowds. She doesn't have to go into anyone's house...

Also, if there's any chai lifeline in your area, you should really approach them with all your concerns, they're generally great about addressing every single area, including food, entertainment, volunteers to take the siblings out or stay with the patient etc...
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FranticFrummie




 
 
    
 

Post Sun, Mar 05 2017, 5:50 pm
cnc wrote:
I agree with this but liked the previous post as well because of the point about OP's other kids bringing home lots of germs... is that a concern?


I think there's room to compromise here. Tell the other kids that they can go out and socialize all they want, BUT, as soon as they come home they have to go straight to the shower and scrub down with antibacterial soap. Hibicleanse is best, if you can get it. Have the older kids help the younger kids, and make sure fingernails get scrubbed well.

Stir fry is a great seudah meal that can be made the same day. It's actually best if it's made and served on the spot, so the veggies don't get mushy. Sliced chicken breast can be cooked in another pan and served on the side, for those who don't like it, or are vegetarians.

Baked fish, and a fresh salad are good. An easy soup can be made with mixed veggies, tomato sauce, and Italian spices. Add a can of beans, and a handful of pasta towards the end of the cooking time. It's very filling and healthy.

Dips should be served in individual containers, to prevent cross contamination.

I wish you lots of patience with the other kids, because they are probably going through a lot of really confusing emotions right now. Are you kids getting any emotional support through therapy, so they can work through things like resentment, fear of their sibling's possible death CVS, jealousy, etc? That will help all of you go a long way.

Have a wonderful, happy, and healthy Purim, and my your sweet daughter have a refuah sheleimah!
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Rutabaga




 
 
    
 

Post Sun, Mar 05 2017, 5:57 pm
Wow, OP, that is a lot on your plate!

Can you find some sort of compromise that will work for most if not all of your children? For example, there are many options for leining megilla both at night and in the morning. Maybe your husband can take the other kids at night and someone can come lein for you and the 6 yo. Then do something different in the morning.

Can you make a family seuda at lunchtime so you can have your family togetherness but then let the older children go to the communal seuda later in the day?

Maybe ask the older children what the one thing they don't want to miss is and plan accordingly.
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rachel6543




 
 
    
 

Post Sun, Mar 05 2017, 6:03 pm
I agree with FranticFrummie, how about compromising? Can't you have a nice family meal in the late morning or early afternoon and do fun games together.
Then in the later afternoon & evening have the other kids go out to a party?

That way your 6 year old gets time with the family and the rest of the kids also get time with their friends too.
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studying_torah




 
 
    
 

Post Sun, Mar 05 2017, 6:11 pm
What about hiring a musician to come and play, a magician, a clown etc who can come and make the home lively?
And definitely schedule your seudah time ahead of the communal one- your kids have the best of both worlds.
I know you said there's no local chai lifeline, what about a non jewish organization that helps sick children?
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amother
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Post Sun, Mar 05 2017, 6:13 pm
yogabird wrote:
OP can you and dh switch off? One goes out for Megillah, one goes out with the kids for the meal?

I know it sucks to be stuck inside on Purim, but would it help to think of it as a short-term sacrifice so that you and your child should be able to celebrate many more purims in good health iyh?


I actually don't mind being stuck inside AT ALL. I'm fairly introverted, and I'd rather just have a low key time at home than go out to a party. I usually do go out despite this preference, but I do it more for my family than for myself. The part I'm dreading is being stuck at home with a crying child I can do nothing to comfort or cheer. She's old enough to know that her siblings are going out to do fun things without her. It's just sad and depressing.

yogabird wrote:
Also, I don't know if your child is up to it, but would your docs allow your daughter to go outside for a bit to deliver mm and just see the sites, maybe wearing a mask? I know some protocols don't restrict outdoor activities as long as there are no crowds. She doesn't have to go into anyone's house...


I'll have to ask about that, but there isn't really anything to see outside on Purim in my area. She is supposed to wear a mask anytime she goes out, but I'm not sure she's supposed to be around people unless we know their health status (I.e. not sick or having had close contact with a sick person). People around here generally drive to deliver their MM. We could probably do that. Usually, when we do this, the kids just stay in the car, because it is a hassle to unbuckle and rebuckle the car seats over and over, so it's not that exciting. She's (mostly) not allowed to eat other people's home cooked food, either, so I will have to take things out of the MM she gets as it is. I'd rather she didn't even see the stuff.

yogabird wrote:
Also, if there's any chai lifeline in your area, you should really approach them with all your concerns, they're generally great about addressing every single area, including food, entertainment, volunteers to take the siblings out or stay with the patient etc...


I will call the regional office, but it is 7 hours away. There is no office in my area. I will see what they say.
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esuss




 
 
    
 

Post Sun, Mar 05 2017, 6:24 pm
If you have a local yeshiva can you ask them to send their boys over to dance in your house for her for a short time? Or hire a clown or other such entertainment for a small family group in your own home?
If you make your own exciting party for your daughter she may not mind staying home while the rest of you of your family goes to community event.
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amother
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Post Sun, Mar 05 2017, 6:26 pm
cnc wrote:
I agree with this but liked the previous post as well because of the point about OP's other kids bringing home lots of germs... is that a concern?


Yes, it's a concern, but the doctor told us not to prevent the other kids from going places. She said they should wash their hands and change their clothes when they come home.
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amother
Gray


 

Post Sun, Mar 05 2017, 7:38 pm
OP my son had a bmt almost 2 years ago. We were in isolation for 19 months. Being that our logistics were so different from yours, (he was 11 months old at the time, only one other child at home at the time) I don't have a ton of practical advice, but I'm sending many, many hugs and good vibes. You will get through this.

I remember very clearly that time period when we had just gotten home from the hospital. There was no time for anything. Life revolved around giving medications, and keeping the house as germ free as possible. When I look at him now, it's hard to believe that just a year and a half ago he was a hairless, very sick and very fragile child.

Hang in there, OP.
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amother
Yellow


 

Post Sun, Mar 05 2017, 8:39 pm
To me, the abandonment the 6 year old might feel is worse than the 14 year old's FOMO.

I'm with Zaq. Family first, especially in painful situations.

Maybe I feel this way as a childhood cancer survivor? The warmth and support of family and friends carried me through a very traumatic time, helping me emerge virtually unscarred. Your daughter needs her family to help her recover, emotionally more than anything. Your 14 year old will remember this as The Year Purim Was Not So Fun But I Did The Right Thing. The world does not end when a teenager does not do what all her friends do.

(Or maybe I feel this way because I just watched a character on This Is Us give up on a dream he had been working on for a long time, to be with his brother in his moment of pain...)
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