WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Wednesday, November 28, 2012

Should I Give?

I have not spent a whole lot of time in the Mito World the last few months. However the little bit that I have chatted with folks, there is a burning issue.

There are many of us "Mito Families" who have found ourselves donating money to help various other Mito Families who have expressed a need.

This is a good thing to help other families who are struggling and have less then you have, but how would you feel to find out that you have donated to families that have more then you have?

Pretty rotten feeling. I know first hand.

Statistically those with less are more willing to give more. I suspect that is because we know what it is like to struggle to pay rent, to eat, to keep the power on..

Been there and done that- no fun.

We don't have a lot of money, we have years of medical debt and student loans we pay each month which doesn't leave a whole lot. Yet, I am grateful we can pay our bills. So grateful, that if I have extra money it feels great to help other families who are at risk of no shelter, no gas, no food.

I really "want" a new couch. You can see by the picture that it should have been replaced a long long time ago. Do I "need" one the way some family needs food? Or needs electricity? No. When I see a fundraiser to help a Mito family or other family suffering from a devastating disease I have grabbed my couch replacement fund and donated. I don't mind my ratty old couch at all if I can go to sleep knowing I helped someone from living in their car.

What doesn't feel good is knowing that my donations and tax dollars go to families with a new couch, cellphones, traveling on vacations, medicaid, 2 new cars(less then 10 years old), own a nice home in a nice neighborhood. My donations go to families that have MORE then I do- that doesn't feel right at all. Morally it really rubs me wrong.

So I no longer donate to Make A Wish. I don't donate to a lot of different private fundraisers or fundraisers where they do not make sure that the families receiving Aid really "NEED" the aid. I don't put our money in the fireman's boot for the MDA.. I don't give to the UMDF.. Or toward Susan G Komen..

I am starting to really wonder what other people think is a "Need" vs a "want"?

We are getting closer to Abby turning 18. In theory, it is now up to her to apply for disability etc. Based on all the other Mito families, we could have back doored the system and had her signed up for free medicaid years ago because if you have Mito or other major health issue they don't deny based on income. Had we not fought the feeding tube so hard and been so willing to devote the past year to every calorie it would have been even easier to get her freebie coverage. Meaning if you are a Mito family making 150,000 or more a year? Yep you can get medicaid while our Senior Citizens cannot afford to take their medicines to stay alive- legally not a thing wrong with it, morally I find it offensive. Derek and I have put into the "system" all our lives.. so on that Abby would be just taking what we put in.. but if we can provide for her and still have food and shelter, isn't it our obligation as her PARENTS? We brought her into this world be that she turn into a famous ballerina or disabled, she is ours-our responsibility not my neighbors. All the financial planners recommend we help her apply now, because if something happened to us it could take months and months to get her application processed- it feels so wrong though...

I buy all my clothes second hand so I can afford my shoe addiction! :-) I buy all our furniture secondhand so we can afford to buy new tires or brakes when we need them. This year Abby could no longer go to the movies so we have been saving our change for 3 years and cashed it in to buy a nice big TV to have a "pretend" movie theater in our rental home. I sure would love to have a Vitamix- but I bought a Ninja because the Ninja was 1/6 of the price and worked nearly as well. The money saved went to pay for extra safe food and pay bills...Covergirl works just fine, and box color for 6 bucks covers my grey's just fine.
(Had to share a pic of this much change! Over a thousand! Our bank only had one office that would exchange if for us without charge, so if you are ready to exchange yours make sure you call ahead!)

We aren't hurting- frankly, we are doing pretty well and able to save money for the first time in a long time. We made a choice years ago to have me at home full time instead of working to compete with the Jones. I want to help those with less, but how do I know who has less?

It is a darn shame that too many of us who feel it is our duty to give to those with less no longer want to give. I know there are Mito Families(and lots of other families out there working so hard to stay afloat) out there who really are struggling, who have given up their cellphones,eating out, cable,homes,cars, vacations, and even food, who struggle very hard NOT to take charity, those are the families I want to help- but once bitten twice shy as they say.

So this year, maybe I will use my charity dollars on a new couch? Or splurge on a new outfit instead of secondhand?

Because based on what I am seeing we are giving too often to those who have far more then we do- until I KNOW my private donations are going to those with a true "need" and not just "wants" I might as well buy that couch, or add it to the saving account. I cannot do much about where my tax dollars go, but my couch fund I control.


Reagan Leigh said...

OK...so I don't really agree with what you're saying, but that's OK, I still like you! I'm very thankful for the assistance we get, because even though my husband has a good job, we would never be able to afford Reagan's therapies, medicines, doctors appts, nursing, and medical equipment without it! I understand that we're not "entitled" to it, but I'm thankful for it!! I also feel if you're going to give, you should obviously research the organization you're giving to and be comfortable with how they are using the money, but once you give, it's given!! Be happy with what you've done, don't look back jealously thinking you should have kept it for yourself...after all, that defeats the purpose of giving in the first place!!! And Make a wish...yes, there are people that abuse the system, but I don't see anything wrong with a family taking a trip (they would probably not be able to afford otherwise ) with their child that may not be alive next year! That's what Make a Wish is for!! Just my opinion!

Diane said...

So not directed at you guys! Reagan really really needs the extra services and I know you have sacrificed .

I had a different audience in mind when I let loose my rant! :-)

You have never represented yourselves in anyway but upfront..
We give to the Veterans monthly, and family and a few other close to my heart organizations and glad to do it..

Unfortunately, there are simply too many folks who "manipulate" the system- which is very different from having a true need-

We are leaving it up to Abby whether she wants to apply- even if she stays as she is, since she hasn't left the house in months except for a Drs appointment and sleeps 16 hours a day to keep it stable, I know she cannot have "gainful" employment.. and the whole reason for your hubby and mine to put into the system is for these very situations- but I have to wonder where it ends..

Jealous isn't really how I feel- but more very sad- we know so many people who have lost their jobs and struggle without asking for help- and I cannot help begrudge past donations to help folks with the means to help themselves when someone else is going hungry or homeless -

Heavy hearted! But glad to have you give me some balance! Hugs! I think until the Mito world has more accountability for helping families I will continue to help out else where- and look for at least an improved secondhand couch.. My daughter suggested some fun duct tape! LOL

Jenna said...

I am so grateful for medicaid. I honestly don't know how we would survive with out it. (I really don't know how Matthew would survive) There is really not a day that goes by that I am not truly grateful for it's existence and us being able to have it. My husband owns his own business, he doesn't make much money, it looks better on paper with out expenses taken out, like office rent, over $600 gas bill a month, etc. The truth of the matter is we really do struggle to get by most months. We live in the crappiest place I can imagine, when the economy started crashing his business took it really hard, and this place we live was supposed to be a temporary stop that has now been 4 years. I pray for the day we can get out of here and even though most months we can afford to pay a higher rent we haven't been able to gather the money to move. I have sacrificed a lot to be home with Matt, at times it doesn't feel worth it, but we both agree it is better for me to be home with him. Even if I had a full time job I don't know if we could afford all of Matt's medical expenses.
We do have some luxuries we don't need. Not a new couch, we spend very little on clothes, but we do have season tickets to Sea World and we do take Matt out to Chuck E Cheese and places like that more than most parents. We do try to live very cheaply to cover the bills we have.
I am not trying to be defensive, I do want you to know that I truly appreciate medicaid. I have met and know many families who abuse the system and it does bother me. I would hope that I would never be thought of as one of them. (If you saw the area we live in I am sure you wouldn't think we were)
At the same time, other than medical I have never asked for help with Matthew. I have never wanted donations because I have scraped, found amazing deals, worked for friends, sold things etc to get him everything he needs. He has so much, but that is because he has always been a priority. He has never seen a holiday or birthday with out presents, and he has never been with out cute clothes. (Almost all of his clothes have been bought at garage sales, thrift stores, and craigslist.) I try to be resourceful to give him everything he could want or need. (with in reason)
I can't imagine asking for donations, I have never signed him up for extra gifts from other groups or anything. I would hope that those can be given to other kids who have less. I know that is probably not the reality, I know that I have given to a lot of people who have more than me. I do like to help others.
If you don't give money to charities this year, that is a personal decision. New couch fun seems great! (I hate my couch my husband traded for a job... HATE)
If you decided you want to donate something to another family, I do know a family in true need that is very scared on how they are going to survive. I don't know them personally but it is a mito mom I follow, and she shares more than I would ever share financially. I don't really tell many how we are doing financially because I do like to be more private.

Diane said...

My big issue with medicaid as a secondary for people who have private insurance is that if you qualify not based on income but disease it is a slippery slope to Obamacare- Socialized Healthcare. If you can pay, you should. When we no longer expect folks to pay when they "can" we have accepted Obamacare-
I know lots of very good people that I love want Socialized Healthcare- we don't.
I also know we have a terrible problem with medical costs- most of us who have not accepted government programs and have children with significant health issues have filed medical bankruptcy and that is just hard on the taxpayers as taking medicaid when you can afford your bills-
Sure, medicaid would help our family a lot. It would allow me to buy a couch when I need it, or not sweat over donating, but looking at the "big picture" 20 years from, is helping our Country to continue expanding social programs based on disease and not income? That only works if we accept a socialized healthcare system.
But my biggest peeve is that the definition of "need" is much different today and I guess I am old school :-)

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