One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Saturday, February 11, 2006

confession

Sending off a thank you to Andrea to thank her for her amazing organizational skills, I finally expressed the reservations that make this all so hard at the same time that it inspires so much gratitude. And it occurred to me that it's worthwhile noting my reservations for the record. I feel a bit guilty about this idea of fundraising. I mean, I know we can't afford 3,000 a month without going into some serious debt, and I know that this whole situation has left me feeling seriously uncertain about whether or not we will always be able to pay for the care Annika needs, but I also know that there are many more kids out there with families in even more dire situations. So I'm simultaneously relieved that so many people have made such generous offers and also embarrassed a bit, as if we've made a claim to hardship that is not ours to make. Anyway, I would be crazy not to be seriously grateful. And I am. Grateful, that is. Not crazy. Or only a little crazy, anyway. Now to ask for another favor while the asking is good. The reason that setting up a COTA account is not immediate is that we need not only paperwork filled out by Annika's doctors to confirm her legitimacy, but we also need to enlist 3 volunteers to run the campaign. The volunteers include a campaign coordinator, a media coordinator, and a trustee. We haven't yet received the paperwork describing in detail these positions, but basically the campaign coordinator runs the show, the media coordinator makes sure that the events are publicized, and the trustee ensures that donations are accounted for properly and that funds are only given out for approved expenses with receipts and all that. I have a friend back home with experience in public relations who has already volunteered to be either the media or campaign coordinator (Thank you, Jane!). So that leaves two positions we'll need filled before we are up and running. I'm assuming that the campaign and media coordinators should be local, and I know that some of our friends back home read this journal, so I thought I'd throw it open to see if anyone has the time and energy to volunteer. It seems reasonable to me that the trustee for the account wouldn't necessarily need to be local, in these days of electronic transactions, although some of you COTA vets out there might have different advice. I do know that the trustee cannot be any member of our family. So if there's anyone out there that feels like they might have the time to take on any of these positions, please drop me a line at moreenaATgmailDOTcom. I feel like Andrea, who has already made this page, and Phantom Scribbler, who is hosting this discussion, have already created their own positions of web publicists/coordinators. Geez they are fast. And effective. Please know that we are trying to go about this in a way that is financially responsible, so that everyone can rest assured that this money is only going to approved expenses that are not covered by insurance (so for instance, there would be no double-dipping, "paying" for anything that is already being paid for by some sort of coverage). I think that COTA asks the transplant center to estimate what sort of goal should be set for fundraising. COTA's usual policy is to distribute any unused money to other children's COTA campaigns. I'm not sure what happens if the fundraising actually exceeds the goal set, but I'm thinking that a good idea would be to donate any excess to the American Liver Foundation's Biliary Atresia Research fund. Biliary Atresia is the liver disease Annika was born with, and it affects about 1 in every 15,000 babies. The cause of the disease is unknown, and there is no cure short of liver transplant, which obviously brings its own set of difficulties. Tanner's mom, Stacy, gave me this idea, and perhaps the funds could be donated in memory of Jayli, a beautiful BA baby that many of us still miss. So that's what I've been thinking, here in Chicago. The snow falling today was really floaty, and Annika loved the site from her 6th floor window. Now that it's dark and she can no longer see the snow, she's indulging her new addiction, Pokemon movies. Oy. She is so the daughter of a computer scientist.

18 Comments:

Anonymous Beanie Baby said...

I understand the feeling of guilt, but truly--just because someone else is being stabbed and left in a ditch for dead doesn't mean you don't have a right to feel badly about just being stabbed. There's always going to be someone, somewhere, worse off; that doesn't mean you don't deserve help, too.

I do understand. But if I didn't think this was teh right thing to do, I wouldn't do it. And if we end up raising extra and it goes to some other child who needs it, too--that's great!

2/11/2006 10:17 PM  
Anonymous Rowan said...

Wow, beanie baby sure does have a great visual there. But seriously, ask for help when you need it. You do realize that there is a whole community surrounding you that has literally been waiting months to have some way to help. I know that most of us wish that it could be in some less dire way, but we'll take what we can get.

Never be afraid to ask. It's just sad that we live in a world that has created such an environment of guilt.

I don't have a lot of time available, due to Kajsa's own health issues. But if there's anything that would require just a few hours per week and can be done from a distance, please let me know.

2/12/2006 1:04 AM  
Blogger academic coach said...

When we rounded up academibloggers to set up a hospice fund for Badger's husband, I just set up a web page that provided a link to a pay pal account. The money went to Badger's bank account to use as needed. While you are trying to get something more official set up, can you just set up a paypal account (via Beanie Baby's page for Annika)? That way, those of us who "know" you can start sending some money now. We raised over $3,000 for Badger this way.

2/12/2006 7:44 AM  
Anonymous Anonymous said...

Holy shite! Go away for a few days and look what happens. I can't believe I missed these posts, Moreena. It's so much to take in all at once: the staggeringly outrageous insurance debacle, on the one hand, and then this energetic, heartsoaring pledge of love and resources from far and wide. I am totally blown away. I'll see what I can do on my end, once there are accounts to publicize. Also, I am very very crafty in a number of ways.

It's great to hear you talk in that up-close way about Annika, her moods and amazing ways of being and intelligence. It's as if you're getting some trees back into your forest, if that makes any sense as a metaphor.

I'll look around at all these other sites to see what needs doing. Wow.

xo Catherine

2/12/2006 8:09 AM  
Blogger Moreena said...

Andrea (Beanie Baby) - well, yes. of course you're right. I think that there is a strange guilt that parents in this position feel, anyway. I mean, so much money is being spent to save my child's life, and there is no question that she is worth it. Every penny. But your heart breaks when you hear of so many children dying for lack of even the most inexpensive antibiotics. And this episode has just caused that guilt to flourish, full blossom.

I talked to my husband this morning on the phone and he said, "You have a right to feel any way you want, but you also know we can't afford this. And it's good to accept help when it's offered."

So thanks. I can't stop saying that.

Academic Coach - I will look into that next week. I may be able to speed up the COTA account, as well. But the COTA donations would be tax-deductible, which is another plus.
Thank you so much.

2/12/2006 10:35 AM  
Blogger Phantom Scribbler said...

Does Annika's Pokemon interest extend beyond movies? Because we have some serious Pokemon paraphernalia sitting around here begging for a good home.

2/12/2006 10:40 AM  
Blogger Running2Ks said...

It's ok to ask for help. What you are going through isn't fair, and people love you all!

Andrea is amazing, and I am so thankful that she is helping you so much!

I hope you get all of the support and help you need--in monetary and prayer forms.

2/12/2006 11:29 AM  
Anonymous Amanda said...

okay, so I don't really know you, but I've become very interested in Annika's story & am now appalled by what your insurance company is doing. I posted about it on my blog & while I'm sure I'm not a high traffic blog ~ maybe it will help a little

2/12/2006 11:44 AM  
Blogger Running2Ks said...

BTW, I emailed you a couple of button images --for your approval. I hope a lot of people post links to you and Andrea so that you get all of the help you need!

2/12/2006 1:06 PM  
Anonymous Kristen (Havalah's mom) said...

Moreena
Ah yes, fundraising does come with a bit of guilt and uncertainty. I would think less so for you. As far as a lot of families out there that need it more, well a lot of them probably qualify for government programs etc. And really look at what your daughter has been through and tell me there is something in existance that she does not deserve. As far as the trustee position goes, ours is not local, but you do have to send the receipts/bills etc to them in the mail... then they make photo copies of it and send in that along with some paperwork they have to fill out in to COTA and then COTA sends the reimbursment check to you. So your trustee doesn't have to be local, but it might make things easier and quicker if it is someone you se on a very regular basis, like a neighbor or a coworker. You also need to think long term in that this should be a person that you think will be a part of your life for years to come, and it should be someone fairly organized.
After you have the three core people, you'll need to get a whole team together of people who want to help, and COTA will send out a volunteer coordinator to come meet with all of your volunteers in person and talk to them about how to get started, and brainstorm ideas and help them get organized. I think the more people that you can get to come to that initial meeting the better, although certainly non-local people can do events in their own areas as well.
As far as reaching quaota's etc. COTA will probably give you a fairly high goal. it seems like the most common goal they give is 100K , i wouldn't be shocked if they gave you an even higher goal. I don't think you can donate anything above that to a different organization, but I can't say that for certain. Anyhow I am here if you have questions!

2/12/2006 1:49 PM  
Anonymous peripateticpolarbear said...

I wonder how often they deal with virtual communities? Moreena, I was going to say I would be the trustee, but it sounds like it would be better if it was somebody local, and maybe somebody who has a real name other than polar bear. And maybe somebody you've met once. BUT if you need someone and nobody else local steps forward, I can do it.

2/12/2006 2:05 PM  
Anonymous peripateticpolarbear said...

R2K: we're collecting buttons at Andrea's place (Moreena linked to it in the blog.) You might want to add your ideas there!

2/12/2006 3:29 PM  
Anonymous kathy a said...

dear moreena -- i understand the guilt, but right now you have your plate full, and every parent knows the urgent obligation to care for your own.

i think gifts via paypal or otherwise are just gifts and not taxable. but you still might want to set up a separate bank account for medical expense gifts -- will just make sorting things out easier.

kristin -- you are wonderful!

2/12/2006 6:43 PM  
Blogger liz said...

Moreena, I think it's great you're letting us help.

We all love Annika. We all love you. We all want to do SOMETHING and this we can do.

2/13/2006 6:14 AM  
Anonymous Anonymous said...

Ditto what Liz said! EXACTLY!!! Many of us have been following this blog for some time and we have come to love Anni and want to be able to help in some way. I think all the ideas here are great and only wish I were more crafty! I am going to try to come up with something to donate but may have to stick with the monetary contribution. Please continue to let us know of ways we can help. Trust me - this makes us all feel better - knowing that we, even in some small way, are helping!

Enjoy the pokemon!!

tina

2/13/2006 7:00 AM  
Blogger LoriLaurieLauri said...

Exactly what Liz said! I've been reading about Anni for many months now and I would love to do something, anything to help...hell, you could even send Frankie down to me! (Now I know Frankie certainly doesn't need that, but...there just isn't much I can do from Texas!)

Anyway...Now there is something I CAN do! I'll be sending you and some of the other ladies an email about it shortly. And please let me know if there is anything else!

2/13/2006 10:54 AM  
Blogger Marc said...

Please don't feel guilty for asking for assistance. Nobody should have to give up everything they have worked so hard for or consider filing bankrupcy in order to care for a sick child, especially when the financial responsibility should really fall on the insurance company.

I also don't think you should feel like you have to limit any donations you mighr receive strictly to paying for medical care. The idea of the Four Diamonds Foundation (the organization that Penn State's Dance Marathon supports) is to provide comprenensive support for families. This includes assistance with medical bills but also "expenses that may disrupt the welfare of the child, such as car repairs, rent, or household utilities." They also provide extensive support for siblings. Often times siblings of chronically sick children feel neglected when all the attention is put on their brother or sister. Using donations to provide a special outing or a nice gift for Anni's sister should not make you feel guilty.

2/13/2006 11:49 AM  
Blogger Amanda M said...

Hi all,

I raised 1/2 million for a theatre a few years back, and what I found is that people were honored to be asked to give. For that effort, it was a matter of following the ball downhill - people were offended if they weren't asked. See how that works? All our donors wanted to feel part of something larger, and if they weren't asked they felt left out....So asking is, in a way, just a way to be polite...

Plus, practically, it gives all us readers something to do with all this grief/fear energy around Annika's tribulations, because your writing isn't just a story that we read and forget, it's something that stays with us all day, even all week, and we cry and we laugh along with you....

So, I at least am honored to be asked to make a virtual casserole, and totally relieved that there is at least a little something I can do to help.

2/13/2006 8:31 PM  

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