Some time back, I’m thinking about eight months ago, I quietly added a way for people to subscribe to monthly donations to Ryan’s Special Needs Trust Fund. You can see it in the sidebar (to the right of this post) or on the home page of the website. I was hopeful that many would notice it and decide to take part, without me having to point it out. Honestly, it hurts my pride — to the core — to constantly ask for financial help and I try not to do it unless it’s dire. Some have signed on. As of today, Ryan receives a total of $185 each month ($2,220 annually) from this program.
It helps. A lot. Knowing these funds are (mostly) steady goes a long way to budgeting. It lessens the burden and anxiety of wondering how we’ll keep Ryan’s care and treatment going strong. Each time a monthly contribution comes in I receive an email alert. I even assigned a special tone to these PayPal messages when they hit my inbox. I immediately tell Ryan the name of the person who is looking after him and thank this person, out loud, to Ryan. It’s just like everything people do for us, in that I tell Ryan and give thanks.
Most of you already know that I name product donations after the people who give them. I even do this with every pill — every time — that someone bought for us. When many give for a cause, say the RT300 FES cycle, I think of them collectively. I have a mental image, like an elementary school class photo, that I can see in my mind’s eye. This all started early on at Shepherd Center (Atlanta) when a women brought us ice packs to control Ryan’s fevers. I called them “Stacy Packs” and the naming convention has stayed with us ever since. For the monthly financial contributions, I make the day in that person’s (or people’s) honor. People might think this is silly, but not to me.
My days are filled with thanks and remembrance. Knowing so many care is sometimes the only thing that keeps me going. So many love Ryan. They respect all he overcame and endured. His perseverance and unyielding determination. Someday, I hope he knows this as I do now.
<via http://darapoznar.com>
Okay, back to the PayPal monthly recurring contributions… this is my completely unveiled and transparent attempt to remind readers that this is available (I’m not much of a salesman, being “real and raw” like I am) and to keep it in mind if the opportunity ever presents itself. Every dollar penny is maximized toward Ryan’s care and treatment. I’m an ogre of a miser about that. There’s no salaries to pay. There’s no administrative costs. There’s no overhead to cover. It’s 100% Ryan’s, 100% of the time. The way I see it, if you pledge your money (be it directly or through products), then I pledge to being the best financial steward possible.
So, hopefully I did well and some might even start now? The “subscribe” button is in the right sidebar of this page. Just so you know, there is no cost to set up a PayPal account. Also, you can unsubscribe (stop) monthly contributions any time you need or want (but I hope that doesn’t happen). It’s really easy. It can be done by clicking the “unsubscribe” button on this website or directly through your own PayPal account. Also, you will receive an electronic receipt (via email) each month to remind you.
One more thing. I just added the total current monthly contribution amount to the sidebar (and home page) so that everyone can quickly see it. I can’t believe I didn’t think of this sooner! I thought about setting a goal, but the simple truth is I’m grateful if just one more person signs on.
Jane – I was just thinking about something…. schools will be closed for the summer….do you think Loudoun County would allow one of their gyms to be used for the event? In our development one of the elementary school gyms is used by Corpus Christi Catholic Mission Church every Sunday. Maybe a tie-in could be that any items not sold for the DeClutter event could be donated to the churches’ outreach programs. Catholic charities, ECHO, etc. Something worth pursuing? Obviously it would have to take place in a gym not used for church or other purposes but it might be worth a try?
Great idea. Christian Fellowship Church (CFC) in Ashburn and Leesburg Community Church have schools with gyms. Maybe that large church on Rte 7 in Ashburn also, Community Church?
I love the idea of a school or church. Last year we tried to use Ashburn Elementary as the location of the actual sale, and the principal we spoke to was awesome and really wanted to help, but the request to let us use it for free was denied by LCPS and if I remember correctly they didn’t want us to leave the stuff overnight. And this time we want to leave it for 3-4 weeks! I wondered if there’s a church that has built a new building, leaving their older building available? It won’t be easy to find a location willing to let us take over for so long unless it’s already empty or at least not being used frequently. If anyone has contacts at LCPS or a private school or church who might be willing, please feel free to check it out and see what’s possible. I was at a storage locker type facility today and I started thinking … “Hey, if we could use a bunch of these at once, and then we could get someone from “Storage Wars” to come to Ashburn…” 🙂 Unfortunately there was no place for people to park and nowhere to do the festival, but we’ve got to be creative in our thinking! Thanks everyone for the brainstorming!
Glad you reminded us all the enormous expenses that were dumped on your family by a few thugs. You should remind us every so often just to jar reality of TBI cost into our conscious. We read your daily posts, but the financial burden you carry is below the surface of our readings even though the wish list is there. I am making a monthly commitment now that I didn’t in the past. I thought giving from the wish list monthly would be an option for me, but after reading that you budget this in, I am adding a small monthly commitment and pray that others can too, even if it’s $5/month or $50/month. It all adds up, you a fellow family need this, I would hope that if I needed this others would help my son.
SHSP, NGA!
Ideas for fundraisers:
Hat Day (at work or school) – Everyone wearing a hat (or rally cap!) donates $1 (or more if you want)
Dress Down Day (at work) – same idea
Donate your pay for an unused vacation day/sick day
50/50 raffles at local events
Home Run donations (every home run hit by your favorite Pro Baseball Player add a dollar or two to a special “Ryan Account.”
Excellent ideas, Carla!!
Good ideas Carla!!!
Beautiful post with a very important message to anyone that can help… as NIKE says, “Just Do It”. Please help the Diviney’s help Ryan.
Ken,
A thought…
RE: The monthly recurring options… are you able to add more options between $20-$50? There may be some that can’t do $50.00, but, can and want to do more than $20 but aren’t left with that option. This could be a win, win for everyone!
With love and in prayers,
Keri, MY Frankie and Family
Is Ryan able to collect Social Security? There is such a thing as the compassionate allowance whereby a person with a large number of medical conditions qualify. Reason why I ask is that I collect Social Security and get email update’s from the Social Security Administration and compassionate allowance is one area that is always mentioned. Give it a check on there web page. http://www.ssa.gov
Ken (& Will):
I do know about this, and I am sorry I hadn’t thought of it sooner.
Unfortunately, TBI is not currently on the list of 165 conditions covered under the SSA CA program; but they do add new conditions from time to time; and people can advocate to have specific conditions added at hearings scheduled from time to time. New conditions are being added as of August 13, 2012, in fact. Certainly, TBI such as Ryan has experienced fits the SSA’s definition of a Disability; and could possibly be advocated for and added to SSA’s list.
Perhaps this could be a group project?
The list: http://www.ssa.gov/compassionateallowances/conditions.htm
Excellent post, Ken!! Thank you so much for this reminder! After reading it, I realized we all need to be reminded reguarly about the Wish List, Paypal donations, and the ongoing need for fundraisers. Speaking of fundraisers, I only see a couple listed on the dance card for the upoming months.
Team Diviney let us band together in collective thought and action to create new funddraisers that will ensure our boy continues to receive all the help we can give him. Many thanks to one and all. And God bless you Ken for just being an amazing person.
Love, hugs, always praying
Paula
Ken, Anything you do for Ryan’s sake could never be “silly”.And yes we all love Ryan and try to help in any way we can. Nobody likes asking for monetary help(I can tell,especially you) but when life’s situation makes it impossible to do on our own,thankfully there are kind and caring people to help. Keep up all you do for Ryan and we’ll be right behind you and Sue! A peaceful day for all
love gail
Not silly at all. Very heartwarming in fact, and we are convinced that Ryan hears every word of thanks and encouragement you share with him. Thank you for sharing your warm fuzzy side with us today too 🙂
Wish it could be more — much more!
Lordy, Lordy, now you’re reading minds. I was just wondering if very many contributions are made these days via Pay Pal or other means. I am sure surprised to read this! Can you also remove warts and moles, or do you have other talents we don’t yet know about? So help me, I really believe that we are more aware during the phase of the full moon — telepathic even!! I’m thinking what I going to have for lunch today. Place your fingers on your temples and tell me what am I thinking? If you are correct, my donation is in today’s mail. No joke!
This could be fun! (donation in the mail anyway :)!)
Getting really serious now — any further news on the Declutter event that you know of? Anyone out here have any ideas for fund raisers? I’m wishing there would e an update on NBC Washington, Today. Washington Post, or some other means. I know there is money out there — trouble is, it’s still in some folks pockets. We need to get the word out again!
Always here, wordy but supportive in every way. Love and prayers.
Okay. I’m game. I guess tuna fish and/or salad.
Declutter Event is stalled.
You’re only half-right, but the funny thing is — Tuna was yesterday — delayed mental telepathy — LOL. Today I’m picking yesterday’s left-over Maryland Steamed Crabs — to go on my salad! 🙂
Okay, sometimes I just need a swift kick in the pants! 🙂 The Declutter team is looking for a suitable location for this year’s event. Last year we had the blessing of not having any idea what we were getting into when we started, so we just jumped right in. This year, we need to find a location that will accomodate the response we know we might get (and that we want!) Ken, if you have any readers who work at the Bloom (aka Food Lion / Delhaize) corporate office in North Carolina, we’d love to hold the event at the empty Bloom location on Belmont Ridge Road. I’ve tried to contact them, but I can’t actually talk with them on the phone and the ‘contact form’ is geared towards people who want them to donate cookies & food 60 days ahead of an event. I also have an email into Brambleton HOA and have ruled out the Gold’s Gym complex. We need a very large space indoors and ideally a large area outside for the “festival” to go with the sale. Brainstorming welcome!