so let's talk about the money

Spoke with Miss. Case Manager recently. While driving through the middle of a downpour. My ravenous rugrats in the backseat clamouring for McDonald's.

They don't understand why this was more important than chicken nuggets. Why this could decide the fate of future chicken nuggets.

Oh the oblivion of childhood...


Miss. Case Manager assured me that all the necessary approvals have been processed. I mentioned the pending Neuro-Surgeon fee. She was surprised and replied that it would be a little bizarre to approve the surgery but not the surgeon. I couldn't agree more! Though I haven't heard from Dr. RockStar's coordinator yet.

But at least that's one thing I feel more settled about. Not that Dr. Neuro-Surgeon was going to charge us an astronomical amount. Actually...I think $4000 is quite reasonable as neurosurgery goes. My chicken nugget lovin' youngins might not have agreed.

Lucky them.


Had lunch the other day with Mrs. Coach. She read one of my loopy posts...and thought getting out of the house would be a nice change of scenery.

(if you're reading this Mrs. AllStar...I had such a wonderful time! It was fun hanging out with you. Chatting. Munching soup n' salad. Ummm...sorry for breaking the no-med-talk rule! Btw...your warm spirit has really truly added some sunshine these past few months...and I think you should know! Even if I do think you guys are bonkers! In a really sweet way... ;)

They're so crazy. Insisting on putting us up in that swanky hotel. Again!

How could we say no? I mean we'd love for Coach AllStar to coach Toby again next year!

::wink wink::

So compliments of Coach & Mrs. Coach...we'll be swanky for a few nights. And then move on campus once the grid placement happens. Walking distance is important post-surgery...I'm thinking.


I've had several people asking me about holding a fundraiser.

And I've been mulling the idea.

I just can't seem to reach a decision point on it.

I hate feeling like a mooch. We are not the only family dealing with medical fiscal needs. And really in the scheme of things...our needs are so little. Medicaid is covering everything medical. We don't even have co-pays. The only things we'll be in the hole for are travel expenses...and because it's been a crazy year with J's dad and various out of state Trevy medical trips...that means no vacation left. Jonathan will have to take FMLA. We have a little money tucked away to help...thanks in part to a handful of generous friends. Jonathan's boss actually offered to let him use his vacation time from next year's pool. We opted against. Because who knows what next year may bring? And besides...I know other families who have had to do the same. We're really not that special.


Plus it worries me that I'm not sure how it would affect our Medicaid status. Which hinges on annual income. I know...I know...fundraised mulah is not income. I know that. You know that. But I'm not so sure they know that. And my concern is not founded in my own loopy head either. Went through hell last year...right around this time...when DHS dropped us in the middle of 40k-a-vial-ACTH! Thankfully we sorted everything out. But my blood pressure still elevates any time I think about that nightmare.


That said...I am not too proud to apply for grants. Especially those supposedly geared towards children with epilepsy. I would think 100s of seizures a day...circling the brain surgery theater...fits that profile.

But maybe I'm just too hard to please?

Perhaps my expectations are too high?

It could be I'm just looking for a fight? A place to vent the stress?

So what has my panties in a bunch now you're wondering? You knew the ranty was coming...right?

Well...the truth of it is...I've been nursing a bit of a grudge towards the Epilepsy Foundation for awhile. Some rather insensitive things have been said.

Remember my

B&M fest after getting some cryptic responses regarding the Kiffen J. Penry Fund?

After that short dialogue...seemed to me a pretty pointless road to pursue.

But then out of the blue...a local brain surgery mommy emailed me that monies have opened up for the fund again. She even attached the application for me! It was so thoughtfully sweet.

And I was feeling all warm & fuzzy & hopeful...

Until. Of course there's an until...

I began reading the questions filling the mile long application form. Warm & fuzzy & hopeful blanched. And morphed into pissed off & annoyed.

Here...you read the eligibility requirements and tell me what you think:

(but please keep in mind The Foundation's motto - Not another moment lost to seizures)

Applicants must demonstrate financial need -

Okay. Totally expected and within boundaries of proper dispensing of funds.

The next question is where my blood began to boil...

Applicants must demonstrate attempts to exhaust at least three other funding sources within the county and state where the patient lives -

They even supplied ideas like local churches. Yes...let's hit up all the churches first. Because they're not already in the giving back business via food banks...community enrichment venues...sponsoring overseas missions...or shoot walk-a-thon-ing for various foundations. Maybe even in support of The Foundation because a member has been touched by epilepsy in their ministry?

And of course denial from insurance and last year's tax records are demanded.

But seriously? Are you kidding me? I don't know of any other funding sources in my area sporting the motto - not another moment lost to seizures! And the fact is...I placed a call to my local branch to ask that very question. What grants are out there for families like mine? She had no clue. Although promised to connect back with me...either herself or put me in touch with another family. Yeah...I'm still waiting. And further more the next time I find an email request to host a WALK A THON and provide funding for YOU? I suggest that you darn well better have proof that YOU'VE been declined by THREE other funding sources!

Not much makes me cuss...

Applicants must provide jusitification for obtaining medical treatment/services more than 50 miles outside of the patient's county/state -

Wait just a bloody minute. Who made you my son's care giver? Where have you been for the last two years while our family has been in the trenches waging war with this monster? As we've lost more moments than I can count to the seizure monster. Sure you have fancy shpancy websites. And fundraiser events. And celebs to pimp your agenda.

Meanwhile...no celebs in my home. Just a little baby. A real life hero. Saturated in seizures. Day in. Day out. Moment...after freaking moment slipping by and stealing his life and future from him.

So pardon me if I pull a flippin' out and say HOW DARE YOU!

YOU...who aren't even aware my son exists...are now at the same level of responsibility regarding when - where - whom - and how his epilepsy is treated?

Shouldn't parents (or patients...the epilepsy community is made up of more than the catastrophic genre. I can only hope & pray that Trevor has the ability to make his own choices regarding treatment someday!) have the right to decide...without interrogation...where is the best place to seek treatment? So that not another moment is lost?

Of course...I'm the mooch. I understand that I'm the one hand out...asking for the grant. You have a right to your questions. That's true.

Although it seems to me that you're a wee bit over protective of that money. That money given to you. To be dispensed to families like mine.

I mean...don't you think it's a little over the top to send an application as specific as the one I filled out when we applied for Katie Beckett? Or SSI?

When any Information Specialist could pick up the phone and chat with my son's Dr. Neuro for a pretty convincing "justification" of what our hardship is?

You know what? On second thought.

Keep your freaking $1000 maximum.

And I'll keep my dignity.


~Mama Skates~ said...

wow! un-freaking-believable!
& a $1000 max?!
get the heck outta here!

baby trevor's mommy said...

To be fair...it's $1000 max every two years...

but still!


Adesta said...

wow D. I can see why you are so angry and frustrated with the foundation. That is not fair no matter how you look at it.

I'm thanking God for Mr. & Mrs. Coach for helping out once again in your time of need.

Liz said...

That is all nonsense. I'm sorry that is what you are dealing with in the lead up to the big day.

We found out dealing with cancer charities that there is a whole load of BS involved in it all. For example, the leukemia and lymphoma society has grants that they give to patient's families, but they don't do it for ALL (acute lymphoblastic leukemia) because it is too common and they would run out of money. But most of those kids' families have to deal with chemo for 2.5 to 3.5 years at a minimum which can really take a toll financially for many families. And that treatment is much linger than other leukemias that they do give grants for.

Oh, and the Locks of Love foundation doesn't give wigs to cancer kids. They give them to kids with alopecia. They deny most cancer kids because their hair will grow back within a year usually. But cancer kids are how they get donations.....

The American Cancer Society gives less than 2% to pediatric cancer research, but kids are disproportionately represented in their ads. Ugh.

It is all disappointing. Big charities are just like any other big for-profit company, often with too many strings and hoops to jump through.

So sorry.

Anonymous said...

I took one look at the application and decided against it too. It's all about endurance. If they can weed out 90% of the people, they can reduce the number of applications they have to review and make it look like they are fulfilling a large percentage of requests. It stinks.

I think you'll have more luck with your local community - carwash benefits, beef & beer benefits, spaghetti dinners, etc. My kids swim team always has a swimathon fundraiser to help someone on the team. They gave us the money to help with our travel expenses. It was a big surprise and very appreciated.

We made Priceline our friend. I think the most we paid for a hotel room in Detroit was $35/night. There are some tricks to Priceline, so if you are interested, I can help you out.


baby trevor's mommy said...

Adesta...I think every foundation/charity/non profit whatever...reaches a point where it's more about getting money than giving money. In some ways you have to have protective measures...because there are crazy greedy people out there. But still...a little more human interaction would be nice. Grrrrrrrr...

Liz...what you shared makes me literally want to vomit. If I'm ever involved in something...it will be grassroots oriented. And if it ever reaches the place where it's about padding pockets...I'm out!

Erin...hmmmmm...you're tempting me with the Priceline tricks!


MJStump said...


I'm pretty certain no one thinks you are being a mooch...just trying to utilize the "resources" out there to relieve some of the stress that goes along with Trevy's surgery.

I use the word "resources" lightly because it seems as though no one can really qualify for them, and that no one has the time to exhaust all of those outside places...hello, someone has to take care of the children. It is very disheartening hearing all that you are going through on top of all the emotional stuff.

So where does this money really go? My hubby and I were thinking of taking a trip with Kylie to DC next year for the National Epilepsy Walk, but what for?...why try and get money and walk for a cause that doesn't support those living in a seizure saturated world. Just isn't right...another thing that is so messed up.

Hugs and prayers,

JSmith5780 said...

My personal opinion is people's experience (good or bad) with the Epilepsy Foundation is completely dependent on the Affiliate office they are working with. I have heard horror stories of the MA/RI office.

Conversely, my local Affiliate is fabulous. In NY we have Medicaid waiver, this is Mediciad that waives the income of parents because of disabilities. To remain eligible for waiver, we have to have a Medicaid coordinator and attend Family Education Training. Both of these services are provided to us by the the local Affiliate. They even went to their Board of Directors and asked for special permission to accept Connor has a client, even though he does NOT have Epilepsy so I only had to have one coordinator. (OK, rambling!) Anyway, this coordinator oversees everything. They work with us on coordinating therapies, they go to CSE/CPSE meetings, they go to doctors appointments, they help search out funds if we are having problems. In short, they have been with us every step of the way over the past 4+ years. In turn I support them. I chair their parent support group, I go to bowl a thons and walk a thons. I was on the parent panel at their last conference. I think it's a win-win for both of us.

In regards to Penry. We've used it many times, but I have never actually seen the application. Our coordinator from the Affiliate office handles it for us. I recall she asked if we sought help from community and churches and I said we aren't members of a church and our family was unable to help us. I guess that was sufficient.

I am not trying to belittle your experience, but I don't want everyone to think that every Affiliate is bad. I think you unfortunatrely landed with a bad Affiliate Office. I wish you lived in NY so you could experience our Affiliate.

Interestingly enough, I heard Penry funding wouldn't be back until next year.

OK, I will finish my book. As I said in my comment on the previous (later?) post, I am glad to see you back online :)


JSmith5780 said...

Now, after that essay....

Mr & Mrs Coach... YOU ROCK!!!

Colby said...

Danielle...Ditto all the ablve...And ditto to your post....Been in this almost 25 years now, and, though there are some RARE exceptions, these so-called non-profits are just a racket...I have also found applications ridiculously longer than SSI's...And it seems alot of charities want to "fund" the least expensive treatemetns, equipment, etc., so they can get the number of people SERVED way up there to impress future donors...And so on and so on....

And who has the energy or time to organize and execute their own fundraiser anyway? We are too busy giving 24/7 medical care!

Crazy, crazy....


(Love your "to be fair..." addition in these comments! Ha Ha!)