how do you feel about fundraisers for private families?

[AnnieW625]

Does it just seem odd to you?

I have a friend who has a baby with spina bifida, she will be 2 mos. old tomorrow. The husband works full time and the mom is a SAHM who does Avon on the side. They make too much money for their daughter to get social security benefits (which I dont' agree with), and right before the baby was born a portion of their PPO insurance changed so apparently their medical bills might be larger than what they initially planned for. The baby has to see a number out of network specialists so a group of mom group friends (this is I how I know family in question) decided to throw her a fundraiser to help pay for the baby's medical bills. I hate to sound cheap, catty, whatever, but I would've had no issue with this had the baby died and the family needed costs for a funeral, but I just don't agree with this. I got the invite over the weekend and on the bottom the cost of the wine tasting fundraiser was $30 pp or $50 per couple. It also said donations and checks to be made out to "Baby" .

We have a mutual friend who has a son who will be 2 this month and has congenital hydrocyphelus, and she told me while discussing the above matter that her son's medical bills from the first month of two of his life (including 3 weeks in the NICU) were $350K, which was more than they paid for their house. She didn't tell me how they paid for it all, and what was covered and how much they had left to pay, but the same group never even thought to do anything but two months worth of meals for her; or our other friend whose husband had a stroke last year at 43 and all we did was meals. Mom of hydocephylus baby probably would've never let someone throw her a fundraiser either had it come up though.

Thanks for your input on this issue?

[clc053103]

I have mixed feelings. While I always would step in to help someone, you never know what the money is going to cover.

Years ago, a family member was diagnosed with a fatal condition. As a side note, he has defied all odds and is still alive and well many years later. Shortly after he was diagnosed, a fundraiser was scheduled for his benefit, as he was newly unemployed and without insurance. We later found out the funds were used not for medical bills, but to buy him an SUV to "boost his spirits". My family was furious and vowed not to offer to help him again- my parents had been regularly helping them before this.

I agree in your specific case, it doesn't seem right that your moms group has chosen this family's cause to support with a fundraiser, when others appeared to have been in need as well and didn't get assistance.

[randomkid]

Honestly, I see nothing wrong with it if it is friends of the family running the fundraiser. I do think stating a price that high is a bit much. They could have a less expensive fundraiser and just ask for donations or less $$ per person.

I work in the Rehab field and people have fundraisers all the time for their teenage/young adult family members who have suffered a spinal cord injury, head injury or stroke. Often times, these fundraisers are to obtain medical services or equipment that are not covered by insurance. So, why not for a family with a baby who will have a lifetime of medical needs. Sure, it's out of the ordinary for a baby, but I don't have a problem with it at all. If this family can't afford the cost of care, and who can, why can't friends have a fundraiser for them so they can provide for their child?

[BabyMine]

We have fundraisers like that all the time. Most of them are for children with rare forms of cancer. There are so many expenses that go into caring for a sick child.

[lizzywednesday]

I've always been around fundraisers like this, so it makes me wonder.

The first was one of the elder brothers of a grammar school classmate, who was paralyzed in a motorcycle accident ... this was in addition to healing Masses being said for him and other religious 'interventions' at our church. (Nice family, by the way.) The money raised went towards making improvements to their home to make it handicap accessible (i.e. - adding an elevator to their back deck, widening doorways, etc.) and getting a good power wheelchair. But, since this was during the 80s, I don't know if it had to do with unmet needs from insurance payments or if the family simply didn't have the means (which would REALLY surprise me; I've seen their house!) but the efforts were short and the family was appropriately grateful.

The second was another classmate's dad was driving when a tornado hit (yes, a tornado, in NJ) and his car was thrown from the road. He needed extensive surgeries and PT ... and his family was another that was well-liked in the community, and fundraisers were thrown (like spaghetti feeds, etc.) to help the family with the bills and the lost income from the gentleman not being able to work.

Lastly, as part of our haunted house fundraiser for my high school youth group, we helped to raise funds for a family whose infant had some sort of medical issue (I don't remember if it was a genetic disorder or what) and insurance wouldn't cover the expenses surrounding the baby's care. I'd like to know what happened with the family, but I lost touch.

Maybe it's a small-town thing or a church-based thing ... although the DH and I saw a poster in the diner for a fundraiser to help another family that's been touched by lymphoma and it just about broke our hearts. We're both active in fundraising for cancer charities and have lost loved ones to cancer, so we're especially touched by situations like these.

I think, in your situation, Annie, it's not the fundraiser but the attitude that's the problem. You have two families who would benefit from a fundraiser or collection, and yet there's only one being helped and that hurts.

[Melaine]

It doesn't bother me. I'm not saying that I would necessarily go to the fundraiser (I'd be more likely to send $$$ directly) but I think it is a nice gesture for the friends to do it. From your title, I was expecting that a family was hosting their own charity and that would definitely be tacky, but I think this is ok. Whether or not they are treating the two families equally is a different issue though.

[TwinFoxes]

I don't really have a problem with it, since other people are throwing the fundraiser for them. I probably wouldn't have a problem even if they threw it for themselves, as long as they were truly in need. Medical bills can be devastating. $350k isn't even half of what ONE of our daughters' bills were. Our insurance paid for most, but we definitely paid a chunk. Add to that my 3 1/2 weeks in the hospital, and yikes! :o I can sympathize with the family. We were lucky enough to be able to afford our bills, but realistically there's just no way that most people can. And I've seen people on reality shows who do a "fundraiser" so they can have a blow-out 30th birthday party, so to me, doing this sort of thing for medical bills is more than acceptable!

That being said, I don't think you should feel like you have to go, or donate.

[MommyofAmaya]

This is also very common in Hispanic communites... though it is usually a $6 BBQ plate at a beer joint. I've never been to one personally, but I would if somebody I know was in need.

[hellokitty]

Stuff like this really depends on some factors. I know one instance where the husband had cancer. He was cured, BUT his wife used his cancer as an excuse to fundraise. She was able to con like over 50K of $ and the truth just came out. Ppl are incredibly angry. One family cashed out their savings to help this couple.

I know another family, mom had cancer, was in remission for about 2 yrs and now the cancer is back. She is a homeschooling mom, but is unable to homeschool any longer. They did a big fundraiser to pay for tuition for 4 kids ($6500 per child for Christian school) and other medical expenses. This is a very religious area, so I am sure that her fundraiser probably did very well.

I think it is sad that some ppl con ppl out of $ by using illness as an excuse, or they raise $ and use it for something that is frivolous. There are plenty of ppl who really DO need the $, but instances like this take away from those causes.

[sste]

This is going to be unpopular but . . . here it is.

If the mom is SAH because her child's special medical needs require that then I would be fine. I would be LESS enthusiastic if the child's medical needs are mild (as I believe can be the case with some SB) and the child could be cared for by a family member or daycare while the mom worked. I think having a parent stay at home falls into the category of want. I would personally be working nights and staying with my handicapped child during the day before I would allow two full-time work out of the home parent families to be donating money to me!

[niccig]

Are they in CA? Medical covers some conditions regardless of income. But you have to really ask around and find out the details. My friend's DS#2 has Downs Syndrome and they were repeatedly told by their case worker at the Regional Center that they were not eligible for MediCal because of income. Her support group of parents with children with Downs Syndrome, told her that her son WAS eligible as it's diagnosis based and nothing to do with family income. It took a few months and lots of paperwork, but his MediCal was approved.

Maybe it's worth them talking to support groups and find out what assistance is available.

[AnnieW625]

No the mom has been a SAHM who has dabbled in some contract work for her old work for at least 4 years as well as selling Avon, and I don't think she makes a lot doing it and from what she has said about her old career she could return if she wanted (she does HR stuff for a shoe manufacturer) so yes it is out of choice that she is a SAHM. Her eldest will go to kindergarten next year so she'll only have the middle boy in preschool a couple of days a week and the baby, but honestly with the new baby I can't even see her doing much contract work. The baby is parylized from the hips down and does have mild hydrocyphelus so it's not just the spina bifida issue. However if I was parenting a spina bifida child or child with birth defects I'd most likely find a way to make it work and would have to return to work at the end of maternity leave.

I would've been up for the $10 BBQ at the park, or even if she came out and said that all of her Avon profits from now on would be funding Baby's medical costs (which I am assuming they are) so she'd appreciate some sales I'd be more apt to buy more Avon than pay $$$ for DH and I to go wine tasting.

ETA: just checked mommy group website and same group is doing a craft fair next month, where 20% of proceeds will benefit the family in question.

Mytwosons, lots of hugs to you. That must have been really hard.

[mytwosons]

I'm torn. I have a son on the autism spectrum and insurance has covered nothing. We've spent an insane amount of money on his treatment, and I don't think it's stretching to say it has been financially devastating.

I did have a sour taste in my mouth when a local mom I knew in passing had fundraisers for her child w/cancer. While I was greatful for my cancer-free child, their insurance covered all medical care. She was fundraising for additional things like art therapy. I should add that while I'm sure they didn't want to be out-of-pocket for the art therapy, it wouldn't have been a financial hardship. IMO, she was of the mindset that they shouldn't have to scale back on other optional expenses, like trips to Disney.

ETA: I agree with other posters that you get to decide which families you support.

I have never known anyone to swindle people through a fundraiser. I would expect that is few and far between, but gets a lot of press, so it seems like it happens more often than it really does.

For my "sour" experience, I'm sure a lot of those feelings were based in jealousy/what about us?

I think daycare for your child's friend would be crazy expensive. Care for a child with even mild special needs is more expensive, but if the child has more needs, like your friend's, I'm not even sure she'd be able to find full-time care, regardless of the cost. I'm going to guess the best she can hope for is a few hours of respite each week.

Finally, I think this points out some flaws in our system. I hope your friend can find someone to help her navigate the system and get her family the long-term help it needs!

[kijip]

I think that everyone gets the opportunity to express how they feel about any fundraiser by deciding if they should go/donate or not. There are plenty of individual situations and organized charities that I would not choose to support and there are plenty that I would/do.

[sste]

Well, partial paralysis and the other issues you mention does suggest the need for a parent or loving relative at home. It is pretty hard to find a good caregiver period and for that type of medical issue you would want someone with a nursing/medical assistant background . . .

I guess what is concerning to me is that the baby is only two months and there is already a need for a fundraiser. What is this family going to do long-term? It is only going to get more expensive as that child need therapies, etc. I agree with niccig that the family needs to do much more to investigate state programs and funding. They also need to meet with a financial advisor and an estates lawyer, preferably one focused on parents of disabled children - - they need to care for this child financially not for their life but for HER life.

[Ceepa]

I feel for the other families in the immediate social circle who could also benefit from similar fundraising measures, but if a few moms have made this baby their cause then so be it. Doesn't sound like the mom is asking for funds herself. I guess you could always start another effort for the other baby with hydrocephalus even if it's just making sure people check in with said mom from time to time and ask if she needs someone to go to appointments with or needs babysitting.

I think if any other charitable acts come out of the situation then that can only be good.

[wellyes]

I think fundraising is fine, but it is best when it is about broad community support. Friends are throwing my FIL a fundraising dinner to help start to cover his $100K+ medical bills (hasn't even had his transplant yet). But it's $10 / plate. This is to get as many people to join in as possible. Anyone who feels moved to give more can ALWAYS add to the pot. It's DH's dad so we paid 10x the fee for ourselves into the community pot.

Regarding the OP's situation, I think it's really about having a person onhand who organizes the fundraiser. Newborns are more likely to get one than a kid dealing with an ongoing issue, so if your 2nd friend had had the right organizer on hand upon diagnosis the story might have been different. I think it's sadly just a matter of timing. It's not fair, but I'd rather have community get together to help Friend 1 than to not get together at all because Freind 2 didn't get that support, kwim?

[o_mom]

No the mom has been a SAHM who has dabbled in some contract work for her old work for at least 4 years as well as selling Avon, and I don't think she makes a lot doing it and from what she has said about her old career she could return if she wanted (she does HR stuff for a shoe manufacturer) so yes it is out of choice that she is a SAHM. Her eldest will go to kindergarten next year so she'll only have the middle boy in preschool a couple of days a week and the baby, but honestly with the new baby I can't even see her doing much contract work. The baby is parylized from the hips down and does have mild hydrocyphelus so it's not just the spina bifida issue. However if I was parenting a spina bifida child or child with birth defects I'd most likely find a way to make it work and would have to return to work at the end of maternity leave.



Saying this as gently as possible... it is not possible to know what you would do until you are in that situation. Something I know you are well aware of from your previous posts. :hug:

I look at that situation and think "there is no way she can work" - the cost of three kids in daycare is going to eat up a huge chunk of salary. Special needs care is even harder to find, more expensive, and you have to worry constantly about someone being a competent medical provider on top of the usual stuff. Until you have actually tried to find this kind of care and looked at what income you would make after paying those expenses, I don't think you can really say what you would do.

[egoldber]

Until you have actually tried to find this kind of care and looked at what income you would make after paying those expenses,

Not to mention that there will be significant time off from any job needed for doctor's appointments, therapies, etc.

I think the PP who pointed out that there will be significant, on-going medical bills for YEARS has a good one. I hope that someone is working with this family to help them navigate the health care and social services bureaucracies.

I do agree with the OP that when a group sponsors one member for some type of outreach like this and has not done the same for others, it can be a very awkward situation.

In the case with the baby in the NICU, I think a big part of it is that many people simply have absolutely no idea how expensive NICU care. They sort of assume it's just "covered" like any birth and don't realize the staggering costs that are often involved. I have also found that hospitals tend to be pretty good about having people on staff who work with NICU parents to help them navigate the billing/insurance/Medicaid maze, whereas once a child is discharged, then they are often on their own.

[AnnieW625]

Saying this as gently as possible... it is not possible to know what you would do until you are in that situation. Something I know you are well aware of from your previous posts. :hug:

I look at that situation and think "there is no way she can work" - the cost of three kids in daycare is going to eat up a huge chunk of salary. Special needs care is even harder to find, more expensive, and you have to worry constantly about someone being a competent medical provider on top of the usual stuff. Until you have actually tried to find this kind of care and looked at what income you would make after paying those expenses, I don't think you can really say what you would do.

Yes probably true, but I guess I am really lucky that I have an amazing daycare provider who I have been spoiled by so I think I tend to take that for granted and think more positively about being able to work with a special needs child than others might. And FWIW the craft faire will be done at a public place and there will be more public participation for that event and there will be more selection of stuff to buy and such.

[crayonblue]

I'm seriously about to blow up after reading this. Can we please have some sympathy for people who are going through unbelievably difficult circumstances?????????????????

A friend of mine held a fundraiser for us shortly after Carmen was diagnosed. I would hate to think that people would have opinions about me staying home, whether we needed the help, if we had exhausted our money supplies and options, etc.

Unless you have had a child with astronomical medical expenses, you cannot understand the impact. And I'm not just talking about the doctor bills. And I'm not just talking about the financial impact.

You know, sometimes JUST HAVING SOMEONE DO SOMETHING KIND makes all the difference in the world.

Adios. I mistakenly thought I could come back to the BBB but I was wrong.

[kijip]

Can we please have some sympathy for people who are going through unbelievably difficult circumstances?????????????????

You know, sometimes JUST HAVING SOMEONE DO SOMETHING KIND makes all the difference in the world.



:yeahthat:

Thank you for saying this, I was struggling to find the right words. I don't think it is reasonable to judge people for deciding to SAH with a child anymore than it is ok to judge mothers for preferring to work outside the home. This family has been handed an enormous challenge and if people want to help, great. Bless them for their efforts!

[o_mom]

I'm seriously about to blow up after reading this. Can we please have some sympathy for people who are going through unbelievably difficult circumstances?????????????????

A friend of mine held a fundraiser for us shortly after Carmen was diagnosed. I would hate to think that people would have opinions about me staying home, whether we needed the help, if we had exhausted our money supplies and options, etc.

Unless you have had a child with astronomical medical expenses, you cannot understand the impact. And I'm not just talking about the doctor bills. And I'm not just talking about the financial impact.

You know, sometimes JUST HAVING SOMEONE DO SOMETHING KIND makes all the difference in the world.

Adios. I mistakenly thought I could come back to the BBB but I was wrong.

I'm so sorry Lana. :hug: Please know you are missed here. I hope that your perspective can enlighten others. I can't even imagine what it must take and refuse to judge any family going through these things.

[citymama]

I think it is fine and understandable. It does take a village to raise a child - especially with special needs. I would have no problem receiving such an invite. At the same time, if someone invited doesn't want to participate, it shouldn't be viewed as unsupportive.

I once co-hosted a fundraiser for a friend of mine who had to file for bankruptcy because of enormous hospital bills for her young husband who had recently died of cancer. It was "give according to your ability" with a $10 minimum. I wish we could have done more for her. I have no problem with fundraisers for people who are facing such unexpected expenses and challenges. Especially if I'm not able to help in a hands-on way, I'm glad to be able to pitch in in some small way.

[sste]

Lana, please don't be offended. I don't think anyone is saying that that family doesn't deserve sympathy and support . . . the question is whether we would be comfortable giving $50 or whatever it was. And my answer does depend on whether the illness requires a stay at home parent and the family situation (and again I note that SB can range from a mild impediment to a severe disability), the ability of the parents to fund the medical expenses, whether I have the sense that my donation will make a positive difference, etc. Also, for me I would be so personally opposed to receiving money from my friends that I would wonder whether the friend described in this situation is even "on board" with the fundraising.

For me the decision is not give or don't give. It is WHERE I give my money. DH and I donate very generously in a planned (and tax-advantaged :) way). And I prefer it that way because I don't like to make choices among my friends and because I think that some individuals - - certainly, not you Lana - - but some individuals do not handle money issues well at all.

[AnnieW625]

I'm seriously about to blow up after reading this. Can we please have some sympathy for people who are going through unbelievably difficult circumstances?????????????????

A friend of mine held a fundraiser for us shortly after Carmen was diagnosed. I would hate to think that people would have opinions about me staying home, whether we needed the help, if we had exhausted our money supplies and options, etc.

Unless you have had a child with astronomical medical expenses, you cannot understand the impact. And I'm not just talking about the doctor bills. And I'm not just talking about the financial impact.

You know, sometimes JUST HAVING SOMEONE DO SOMETHING KIND makes all the difference in the world.

Adios. I mistakenly thought I could come back to the BBB but I was wrong.

I do understand the impact to a point. I had a child that was diagnosed with Trisomy 18 and we made the extremely hard choice to terminate the pregnancy knowing the baby would most likely spend it's entire or most of it's life in the NICU. I absolutely hated making that choice, esp. at 24 weeks and being Catholic, but honestly there would've been no way out for us finance wise had our child been born, we bought our home in 2005 and I need to work so I can continue to have our home. Had we had the baby we most likely would've had to short sale and start renting so we could afford to lose my income. Selfish to some, but not to us.

I do have an amazing amount of sympathy for this family and while I have chosen not to give monetarily to the wine tasting function, the mom will continue to be my Avon lady as long as she is in the business and I want to be there for them in many other ways. I will also probably go to the craft faire and get some great soaps another friend is selling. I hope the event is a success. My friend and I are both devout Catholics, we were pregnant, found out about our child's birth defects at the same time, we were due within weeks of eachother (her baby was born on my baby's due date, and was 5 weeks early) and I will always have a special connection to this child and I'll remember her birthday every year for as long as I have the memory to do so.

Lana, I am very sad that you don't feel like BBB is a welcoming place. I have read many of your posts about things you have gone through with Carmen and I applaud you for you that. You have a heart of gold and are a wonderful mom. My DH is half French Canadian and so Tays Sachs could also be present in any one of my pregnancies.

I am sorry my words about her being a SAHM offended and that is her choice to make. I have never once told her that her choice or any mom's choice to be a SAHM is wrong. I answered a question that someone posted. I honestly do not think there was any harm in that.

[maestramommy]

I've seen a lot of fundraisers for medical research because of individuals since I've moved to this town. Fredrich's Ataxia, brain cancer, Leukemia. However, there was one boy who was the recipient of fundraising/community service. He was disabled in some way and his home wasn't able to accommodate his special needs. His family made to the finals of Extreme Makeover but wasn't chosen. So then some movers and shakers in the town decided to build a house for the family that was made for his needs. They just finished the house earlier this year. A LOT of people were involved in the building, like the HS football team, boy scout troops, local contractors.

I've never seen this kind of fundraising effort before. Maybe it's more common in smaller communities where everyone (sorta) knows everyone.

[Ceepa]

:hug: :hug: Lana :hug: :hug:

I understand if you can't be here right now, but you're welcome and missed.

[Moneypenny]

And my answer does depend on whether the illness requires a stay at home parent and the family situation (and again I note that SB can range from a mild impediment to a severe disability), the ability of the parents to fund the medical expenses, whether I have the sense that my donation will make a positive difference, etc.

I think the point is that you have no business deciding whether the illness requires a SAHP unless you are one of the parents.

[sste]

Then don't ask me for money.

The problem with requesting money is that it invites (eta: internal) judgment as people decide what is the best use of their available funds. We all only have so much money. We must decide what to do with it. We must make judgments about the best and most productive uses of our money even BETWEEN different charitable causes.

I am not making a personal judgment about the family or saying they aren't good people or their situation is not sympathetic. I am making a financial judgment about whether I should shave $100 off my annual leukemia research donation or whatnot because this is a situation of greater need and greater benefit. And to me just as it matters the charity rating and administrative overhead of the leukemia foundation it also matters what my perception is of the needs of the family, how dire the situation is, if they are using their resources well, etc.

The family has become a private charity . . . that is the tension inherent to this situation.

[MelissaTC]

I think this is one of those situations where you either decide to help or don't. I can not imagine having an ill child and being in a situation where I would need help. If I did, I sure hope that people would be willing to share their time, kindness and money if needed. No family should have to go bankrupt for caring for an ill family member.

[schums]

Just because someone in your social circle has asked you to help doesn't give you the right to decide how other people should live their life. Wow, I hope I never need help from "friends" like you, because I couldn't handle the judgement that would come with what should be a free will donation.

[schums]

Just because you made a choice that was different than your friends doesn't mean that your choice is the *only* right choice. The choice that was made was right for each of you in your own situation. I don't think you should begrudge your friend the help others are offering. If you don't want to go to this fundraiser, then don't, but don't act like the fundraiser shouldn't happen.

[sste]

Schums, before you judge too harshly I statistically donate more to charities both in percentage terms of income and in absolute income than the vast majority of the country and I would imagine the majority of BB's posters. I believe very strongly in planned giving - - and not in handing out bits and pieces in an emotional and unplanned way.

My personal philosophy is to give generously . . . and thoughtfully. I don't want to shut off my brain and act entirely on emotion when I know that there are many worthy causes out there and I need to prioritize.

[kijip]

Then don't ask me for money.

The problem with requesting money is that it invites judgment as people decide what is the best use of their available funds. We all only have so much money. We must decide what to do with it. We must make judgments about the best and most productive uses of our money even BETWEEN different charitable causes.

Actually, I think it invites a yes or no. We give mostly to education for people with major barriers to education and basic human services but also occasionally to arts organizations. I personally never give to animal welfare organizations or alumni groups, but when I get asked (usually by a friend hosting a table or doing an event) I just say no, thanks and wish them success in reaching their goal. I don't think the friends hosting this need anything but a simple yes or no. If someone does not want to give, that is a-ok but speculating on the need level of the family is OUT of the range of yes or no.

[schums]

Schums, before you judge too harshly I statistically donate more to charities both in percentage terms of income and in absolute income than the vast majority of the country and I would imagine the majority of BB's posters. I believe very strongly in planned giving - - and not in handing out bits and pieces in an emotional and unplanned way.

My personal philosophy is to give generously . . . and thoughtfully. I don't want to shut off my brain and act entirely on emotion when I know that there are many worthy causes out there and I need to prioritize.

I'm glad you donate lots of money to lots of organizations you choose to support. I do too. That's not what this is about. It's about thinking you have the right to judge someone. If you don't want to contribute, then don't, but don't make value judgements about that person.

And FWIW, I think that sometimes, we do need to act on emotions. Should people who generously donate to natural disasters (think the $$ raised for Katrina victims) be told to turn off their emotions because that donation might not be the best tax shelter for their money?

[sste]

I don't think I was clear enough, I would NOT tell that to the family!! My post was in response to the pp questioning as I read it making an internal judgment.

Perhaps I should have clarified that I meant that it invites internal (or in this case BB) judgments, not that people should explain to a family why they aren't giving them money!

ETA: Schums, perhaps the various posts have been confusing - - I don't actually KNOW the people that the OP posted about. I was just sharing what would inform my judgment about whether or not to donate in an abstract situation such as the one the OP described . . . and perhaps you lost track of which poster I am but I thought their situation did sound serious with the partial paralysis but also potentially troubling in terms of long-range plans for the child versus potentially a "band-aid" fundraiser. Obviously the decision to contribute or not contribute to a cause is always going to entail a value judgment of some sort, otherwise why not contribute to everything?

[citymama]

Back to the OP now....Annie, I wanted to add one thing to what I said earlier which is that I think you need some space from this friend. Clearly the similarity of your experiences, and the different choices you made, are extremely painful for you right now. (I'm thinking about your other posting on her blog entry as well.) I think it's OK for you to put some temporary distance in the friendship for a while, for your own sanity. Just make sure you do so in a subtle way (just take the time away rather than tell her you need space), or she might be extremely hurt. I suspect she has her hands pretty full right now and a lot on her mind.

[AnnieW625]

Back to the OP now....Annie, I wanted to add one thing to what I said earlier which is that I think you need some space from this friend. Clearly the similarity of your experiences, and the different choices you made, are extremely painful for you right now. (I'm thinking about your other posting on her blog entry as well.) I think it's OK for you to put some temporary distance in the friendship for a while, for your own sanity. Just make sure you do so in a subtle way (just take the time away rather than tell her you need space), or she might be extremely hurt. I suspect she has her hands pretty full right now and a lot on her mind.

Thanks I was thinking the same thing today. We don't see each other much so if I stay on the sidelines a little while longer I don't think her feelings will be hurt. We aren't super close but she is someone I do have a fair amount in common with and would like to consider her more than just an acquitance. I did see her and the baby a week or so ago and honestly you couldn't tell that she had spina bifida she looked just like a normal 2 mos. old premie. Thanks again for the kind words and advice.

[Laurel]

These kinds of events are very common in my community, and I frequently attend/donate. We even have a local non-profit whose sole purpose is to give financial help to families of children with medical issues, and they have really fun fundraising events.

Honestly, a wine dinner with the money going to a worthy purpose sounds like a great evening out to me. However, I can see the perceived inequity when this has not been done for others in similar circumstances in the past.

I agree with the previous poster that you need some space from this friend, Annie. I totally get why you would want to do that. :hug:

[Sillygirl]

I think it's a damn shame that it's necessary. And that the OP had to choose between an abortion that was against her religion and losing her house due to medical bills.

"Necessary" in the US, that is.

[gatorsmom]

Lana,
I was just thinking about you today and hoping that you would come back. Didn't I read here recently that are expecting??? :boogie:

Please come back. Think about it this way, you could be a gentle witness to a more considerate way of life. Your posts are a wonderful inspiration to all of us. Please know you are needed here. :grouphug:

[ha98ed14]

I think it depends on the situation and every tragic situation is different. I think fundraisers thrown by churches or other charitable organizations that can, in a way, verify the need appear more legit and I would probably feel more comfortable donating to one of them.

What I think is interesting about this story is that the same group of friends did meals only for others, but this lady gets a fundraiser. Is she the "hub" of this circle of friends? It would not surprise me if her closest friend suggested it and everyone else went along with it because they did not want to appear unsupportive. I think you have ecery right not to go, ESPECIALLY in light of the whole facebook diatribe. (I am assuming it is the same person.) Go if you want; don't if you don't. If you feel you must do "something," send a check for $20 made out to Baby back with your RSVP card with "no" checked. I'm sorry you have to deal with this. I had similar feelings when my friends gave a baby shower for a woman I kinda know who was having her 4th child, a boy. She also had an older boy 18 months older that his new brother. They have a succesful family business. I thought it was a bit much. In the end, I didn't go and didn't send a gift either. :tongue5:

[klwa]

I can understand why they're doing it, and would contribute. Do you think it's possible that they feel GUILTY for not helping the others out at the time? Or that they possibly approached the others and were turned down? Around here its common for families or churches to throw fundraisers for people who are dealing with large amounts of medical debt.

[dogmom]

Not to mention that there will be significant time off from any job needed for doctor's appointments, therapies, etc.


In the case with the baby in the NICU, I think a big part of it is that many people simply have absolutely no idea how expensive NICU care. They sort of assume it's just "covered" like any birth and don't realize the staggering costs that are often involved. I have also found that hospitals tend to be pretty good about having people on staff who work with NICU parents to help them navigate the billing/insurance/Medicaid maze, whereas once a child is discharged, then they are often on their own.

I just want to point out that even having a baby for one week in the NICU can cost hundreds of dollars out pocket that people don't think about. You want to spend all the time with your baby, parking is $10/day, coffee for you and husband $4, lunch, dinner, sodas. Siblings? food for them. It's easy to say, well pack a lunch and budget. Really, that's what you want to be doing with a tiny little peanut of a baby in an isolate with all those fears running through your head? Toy or coloring book for siblings. Extra babysitting. Take out meals at home. Late fees on your bills because someone that credit card payment didn't get into the mail. Maybe even hotel room if you live far from the level one NICU. This kind of stuff just adds up soooo fast and it is a "minor" expense.

[egoldber]

Ah yes, I had forgotten about all that stuff. We were lucky to live 5 minutes away from the NICU and to have lots of family around to take care of Sarah. Otherwise absolutely, all those expensives add up soooo quickly. It always astounds me that many hospitals expect parents to pay for parking when their baby is in the NICU!!!!

[AnnieW625]

I think it's a damn shame that it's necessary. And that the OP had to choose between an abortion that was against her religion and losing her house due to medical bills.

"Necessary" in the US, that is.

It's harsh when you look at it that way, but quality of life for our 3 year old and baby 2 was also a big factor. DH and I didn't want the baby to suffer and we didn't want our daughter to suffer. I like my job and it's flexibility and it pays well and pays the mortgage and I would've hated to have to give it up for some time.

[TwinFoxes]

Ah yes, I had forgotten about all that stuff. We were lucky to live 5 minutes away from the NICU and to have lots of family around to take care of Sarah. Otherwise absolutely, all those expensives add up soooo quickly. It always astounds me that many hospitals expect parents to pay for parking when their baby is in the NICU!!!!

Yeah, this bugged me, the paying for parking. We got month passes (three of them, sigh) which cut down on the cost, but still! I did mention that $350k wasn't even 1/2 of ONE of my kids' stay...and they couldn't comp the parking??

[kijip]

Yeah, this bugged me, the paying for parking. We got month passes (three of them, sigh) which cut down on the cost, but still! I did mention that $350k wasn't even 1/2 of ONE of my kids' stay...and they couldn't comp the parking??

And it's not just $4-5 to park for the day anymore at a hospital, it's closer to $10-20. We spent a small fortune on parking during my mother's last illness. It serious felt like I was putting a down payment in the parking garage itself after a week or so! And she was essentially in the hospital/at the hospital several times a week for something or another the last 6 months of her life. I am not buying bags of concrete to build my own garage, I just want a small spot for the day. :)

[dogmom]

Yeah, this bugged me, the paying for parking. We got month passes (three of them, sigh) which cut down on the cost, but still! I did mention that $350k wasn't even 1/2 of ONE of my kids' stay...and they couldn't comp the parking??

Most hospitals, at least in urban areas, don't control their own garages. If I forget my ID badge to get me into the parking garage on the night shift for free I have to pay $40 to park, even though they have my name and can look it up. Parking is a huge issue at many hospitals, and many hospitals were short sited and leased out parking to the management company in the 90's during one of the last cost crunches to make a few $$.

[niccig]

To the OP, there are many ways you can support your friends. You can go to fundraising, you can contribute to charities, you can help out with dinners or baby sitting their other children. There is so much you can do, you just need to decide what works best for your circumstances.

My friend invited us to the annual dinner fundraiser for Downs Syndrome Research. The tickets were $75 each, plus babysitting, plus silent auction purchase. It was too much for us. But I told my friend to bid on something for us. We got a $100 gift certificate to a local restaurant and paid $60. She was so grateful that we contributed, that she will babysit for us when we go to the restaurant. Often, it's just the fact that you are supporting them that matters, not the monetary amount.

[megs4413]

you know if it was a friend, i'd probably go to help them, though I do think $50 per couple is a bit much (depending on your location i guess...around here it's a lot!)

Lana, whenever I think I'm having a hard day, I think of you guys and shut my yapper. Your family is very inspirational and I'm glad I got a chance to "know" you for awhile.

we paid out more than $16K in medical expenses for DS last year, AFTER insurance. I can only imagine what people deal with when they don't have insurance and have a MORE serious condition than what DS has. We're about to have surgery #6 in just over two years' time, and I'm just PRAYING we get it in before the end of the year (he's on the waiting list for a spot) so that I don't have to pay out the deductible right away. It's tough!