Late yesterday afternoon a comment came in that really concerned me. I responded to it — and have included it below — but believe it is a great topic for today’s post. The comment was related to yesterday’s post, Friday:FES Therapy Cycle, where I share my concern of paying for this new equipment and everything else that is due this year… and for years to come, actually.
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I left my reply and went about the rest of the night. Yet, I couldn’t get that comment off my mind. I mean, sure, it was late afternoon and many people wouldn’t even see it. I could just let this roll off, content that I explained everything well. The only thing is, I must make sure others aren’t conjuring up the same thoughts. Hell, I’m all in favor of skepticism — or am I? — but not without reason. I appreciated and consider feedback, even when done with malice or lack of foresight. My integrity, in the public’s view, is important to ensuring Ryan continued support. Not to mention, I take pride in people believing what I say is the undisputed truth. Hey, I’m an open book — real and raw — if ever there were one. Centerfold, and all.
So, let me just go right to the reader’s comment, followed by my reply.
Comment: I’m a little confused as to why you don’t use the trust fund money for this purchase. Is it earmarked for something else? It seems from your post, and please correct me if I’m wrong, that all the money that people have already donated is just sitting in a bank somewhere. Hoping you have had a peaceful day.
My Reply: I’m happy to set it straight for you. Who knows, maybe someone else, like a new reader, was wondering the same thing. I should always remind myself that not all people are abreast of all aspects of brain injury, or even Ryan. Traumatic brain injury is expensive when it happens and for the rest of one’s life. I would be hard-pressed to find any illness or injury that is more so. In fact, I’ll just state there isn’t any. It touches every part of the body for a lifetime. Most therapies and treatments, including some expensive drugs and durable/therapeutic equipment, are not covered by insurance and Medicare because everything is “experimental” when it comes to brain injury.
Oh, how I wish the Trust Fund just had money sitting in the bank somewhere. It would be nice if we could get to that point where we could start saving for future care and treatment. I want this as the ultimate goal (although not very likely, save an unforeseen sizable donation). But, we must use this and our personal funds all the time (We always exhaust our personal money before tapping into the fund, but in the end they both are entirely expended). Long time readers will know we used it to help pay his medical team, like IBRF last year ($100,000) and again this year (another $100,000), purchase the HBOT ($20,000), purchase the Infrared Therapy Helmet ($6,000), and… well, it never ends. Notice, I said “help pay”. We are grateful for all the help we can get for Ryan. It has given him a chance. It has provided him comfort.
So, I guess you are correct on two assumptions and completely wrong on the third: We are using the money from Ryan’s Special Need Trust Fund and what we have was earmarked to help pay for other things (but it is no longer), but it is not “sitting in a bank somewhere”.
On a final note, it’s humbling and embarrassing enough (as I stated in my post) to be so needy. Although I hope you didn’t mean for your comment to come across somewhat suspicious as I first thought (but decided to give the benefit of the doubt), it bothers me that someone might actually think this way, even when some quick math would prove otherwise. It never even crossed my mind!
Your question is a perfect example of why I like the ability for anyone, without restriction or condition, to leave a comment on this website. There are questions, concerns, and suggestions that I would never anticipate.
I’m not sure where the reader got the idea that all the money is sitting in trust. I don’t believe I even inadvertently implied such a thing. At least I hope I didn’t! Anyhow, I thought it was painfully clear that us needing to float the purchase on a credit card to pull together enough personal funds to cover the difference was evident… evidently not.
Fore the sake of clarity, Special Needs Trust Funds are not really complicated. They’re simple, actually. Let me do my best to explain it in a single sentence: What is donated to Ryan, must be spent on Ryan… with specific conditions and restrictions.
I’m fairly satisfied with that explanation, but there’s more. It’s administered by a third-party, through an attorney, who must approve every expense and account for every penny coming in and going out. You see, Sue and I recommend a purchase (as Guardians) and it must clear two more steps: 1) meet the legal criteria, and 2) be approved by the third-party Fund Administrator. This framework protects all involved, but especially Ryan. This is exactly how we would want it anyhow, since Ryan could outlive us. We feel Kari (our daughter) would be best suited to represent Ryan’s best interest and we would like for her to eventually administer the Fund. Rather than explain more, here’s a one page summary that you can better educate yourself, if you’re interested.
For Ryan’s sake, I hope someday “all the donations are just sitting in a bank somewhere, and I think no one would have a problem with that either.
When I read that you had to reply to a question such as that one it bothered me. Alot of people dont realize the medical expenses that severly brain injured people incur on a daily basis. Because Ryan isnt self functioning and is in a bed or sitting position for much of the day is wrecking havoc on his internal organs. Our bodies are made to move around in all different directions. Our bodies NEED it. Our internal organs depend on this movement. Especially the organs that produce waste. Not to be gross but have you noticed that if you’re walking and you have to use the bathroom the more you walk the worse it gets?? But if you’re sitting you have a bit more time that you can wait?? Movement is helping your organs eliminate waste. Eliminating waste is essential for just about every organ in your body and when you’re stationary for extended periods of time your body cant get rid of every bit of it always and sometimes it causes infections. So this is a good portion for the need for the excersizer machines to help keep his muscles and internal organs functional and then any money they might have in the bank must probably be used for doctors, supplies, special diets, meds,etc… When a person is injured like this they dont just lay there in the corner of the room and not create extra expenses. So I’m sure this family is doing everything that they’re supposed to be doing with every penny donated and then alot of their own earnings. So before anybody questions maybe they should read up on things like this. They’re taking awesome care of their son/brother and I admire them for it. This is a family full of heroes in my book. Families dont love like this anymore and I’m sure they would give all they have or ever will have if it would make Ryan back like he was if even for just one day. I’m sorry I used your blog to rant but hopefully somebody learned something from it. Have a nice day.
I agree with everything you wrote. There is a vast knowledge deficit when it comes to brain injury. People have no idea what it takes to keep someone healthy long enough to recover from a traumatic brain injury.
Great response! God Bless you! HELLO RYAN!!!!!!!!! (I think he heard me 🙂
Stay strong dad; so many are praying for you; I thank you for these posts because they compel me to pray each and every day for Ryan and your sharing makes this all the more real to me as a supporter and prayer partner.
Your family is doing an awesome job and everyday I also pray for your strength, that needs are met, that other people are informed of this situation and that Ryan can sense the love surrounding him.
Love and prayers!
Thanks for the TBI Financial Management Class 101. I was truly shocked by the yearly cost of IBRF, let alone the other financial burdens of Ryan’s care! As a single mom putting 2 kids thru college, I give what I can when I can, to help Ryan. Tho I have never questioned how the money is handled, I too appreciate the time you took to inform us. Education is never a bad thing, even when it’s not a necessity. You and Sue are truly the most selfless parents and I admire your commitment to Ryan’s comfort and care… and HEALING!
Thanks for the TBI Financial Management Class 101. I was truly shocked by the yearly cost of IBRF, let alone the other financial burdens of Ryan’s care! As a single mom putting 2 kids thru college, I give what I can when I can, to help Ryan. Tho I have never questioned how the money is handled, I too appreciate the time you took to inform us. Clarification and education is never a bad thing, even when it’s not a necessity. You and Sue are truly the most selfless parents and I admire your commitment to Ryan’s comfort and care… and HEALING!
Ken, You and Sue are doing a great job! I never question or care what the donations are spent on, but it is interesting to see what you can and can not purchase. Anyway, change of subject…..is the book where you are a centerfold out yet? Keep us posted it might be a best seller!
The person who asked the question is ignorant to suggest that the money donated is “just sitting in a bank somewhere”.
I’d like to tell this person to their face: Instead of being so nosey and tactless, in the future, please have more tact, compassion, and commonsense before asking such an inappropriately worded and dumbass question.
Honestly, people like the one who asked such a negatively veiled question make me want to make a “special” donation for them in order for them to get their head examined.
Thank you Ken for you tact and compassion in responding, shows your level of integrity which has always been above reproach and something the person who asked the question should hope to be able to strive for.
I am pleading that the public sharing of ill feelings stop. This is not the platform for such back-and-forth. I’m sure there is some venue where difference can be aired, but it’s not here in Ryan’s name.
Carly, you’re absolutely right, I have the Diviney’s back. In the like kind, individuals find certain posts offensive for certain reasons. I have my reasons, and you have yours. Vive la différence, Carly.
Ken, thank you for your patient and informative response. At $100,000 per year just for the IBRF, I can see how there wouldn’t be much money left anywhere. I checked out their website, which is very impressive. I’m curious what they have done for Ryan. I’m sure it’s plenty at that price…I’m just wondering how that works since he is not ‘on site’. I also appreciate the mostly kind comments from your other posters. I’m sure they realize that if people are donating money, they have a right to ask questions from time to time. Some posters, however, like Paula, always seem to attack anyone with something out of the ordinary to say or ask. I’m sure she is just trying to have your back, so to speak, but she isn’t doing you any favors. It turns people off. As my mother used to say, “You catch more flies with honey than vinegar.” Not a bible quote, but I have found that philosophy very useful throughout my life. Wishing you peace and healing.
I am pleading that the public sharing of ill feelings stop. This is not the platform for such back-and-forth. I’m sure there is some venue where difference can be aired, but it’s not here in Ryan’s name.
Thank you for sharing. I can only imagine the incredibly high cost of caring for a family member at home with TBI. I donate as often as I can ( and I do not know you, not have I ever met anyone in your family)and I do not worry about how the money is being spent. I know from this blog that your first concern, and that of Sue’s, is always focused on Ryan. Once you mentioned what the estimated yearly cost of care was….for every year, from now until Ryan is no longer here….and it is staggering and would for anyone even with two high incomes….
In my mind I have never questioned how you spend the money. I could care less if you buy food or underwear for yourselves, but I know you do not. My worry only is will you always have enough money to care for Ryan, and many days I worry that you do not.
With the exception of a few followers who themselves are caring for a loved one with very high medical costs, I don’t think many of us can imagine what you are talking about financially…..And I know my credit would not cover even a tiny portion of what would be needed. Fear not Ken, let’s hope the questions and concerns voiced are presented in order to be better educated and to possibly have a moment of imagining themselves being in your shoes for a day, or week, or month, or year, or life. Or for that matter, in Ryan’s shoes.
Ken, You amaze me with all your patient explanations.We could never doubt what you do, we know it’s all and only for Ryan. I ,for one ,have gotten much information from all you’ve written and I thank you. Hope and pray someday there will be no fund and Ryan will be well again!! Always here and following Ryan~ love Gail
Ken you explained it perfectly. I never thought of anything like that either. My prayers continue for Ryan and his family.
The fact that you would even have to break this down for anyone makes me want to cry. I will never understand this world.
“We feared the heartlessness of human beings, all of whom are born blind, few of whom ever learn to see.”
– Georgia O’Keeffe
The Famished Road, ch.1.
I have complete trust, confidence, and admiration for you. It is clear from reading this website that you’ve set everything up in the best way possible, and you have sacrificed everything to take the best possible care of Ryan. Still, those of us who don’t have intimate knowledge can’t possibly have a full understanding of everything. I appreciate that you gave Carly the benefit of the doubt and answered her question so patiently, kindly, and thoroughly. It could have been me. I certainly mean no harm! I know I’ve learned a lot through your patient explanations. Thank you for continuing to give them.
Thank you for taking the time to educate all of us. We do take you at your word and trust that all of the decisions that you and Sue make on Ryan’s behalf are full of integrity, so I assumed from Carly’s original comment that she was just asking for clarification on how Ryan’s Special Needs Trust works, and your response was just what she was looking for. No need for any cat fights here!
Ken, there will always be people in the world who are just “negative”. They are constantly questioning without trust, commenting without concern, and in general, sad people without any faith. You DO NOT have to explain your completely humble and loving intentions for your son, when people like this make comments. It only fuels the negativity. Besides, it takes your mind and inner self off of your task.
Much Love
Cats fights are surely unnecessary — but standing up for someone is always the right thing to do — in my humble opinion.
Oh, the photos you find! LOL Very informative post here!
Ken, I don’t know if the person asking the question is a new supporter or not, but I am glad the question was asked. You explained it very well for the commenter as well as for those who may have the same question/s. Is is very informative, and we thank you for the time you take FOR US! I don’t know how you do it, but we are truly grateful.
Always here with love and prayers. NGA
Your response was right on and even to me a long time reader a reminder of what needs you need now and in the future. My BIL birth resulted in him being TMR and he will outlive my In-Laws and he will rely on myself and husband for his care which we will welcome with open arms…who wouldn’t do this for family!! Again I don’t comment enough but you and your family are doing an amazing job with Ryan!!!