Over the past several years I have sat down many times to try what I will again today. Each time I got nervous and deleted everything I worked on writing over several hours. One day, I might get the courage to hit the “Publish” button and share my thoughts. The risk, it feels, is too great. What if I’m not clear? Misunderstood?
Well, if you’re reading this (i.e., I finally had the balls to post) then I ask to think of me kindly. Maybe even put yourself in my place if you can do so.
On the surface, my message might seem to be all about money, donations, and gifts. I suppose it is… on the surface. Again, I only wish that you give me the opportunity to explain and take you deeper. My struggle — the yoke I bare — happens often every day.
How it feels
This morning, like every morning, I went to Ryan’s Wish List. I want to see if anything he needed was ordered overnight by someone. Yes, something was purchased which fills my heart with appreciation. I tell Ryan all about it, from the person’s name to what is now on its way (I also tell him when it arrives). But, it never fails, I begin feeling badly immediately. Let me correct myself on that last sentence… it’s not that I feel badly so much as I feel guilty.
Why? It’s simple, really.
I know there is little practically no chance that I can ever repay this kindness. I also know that no one expects me, but this knowledge is the spoon that feeds my guilt. It feels as though I just keep taking, taking and taking some more. I do this without even so much as a hope of ever letting people know truly how much it means… let alone returning their generosity. I worry that my “soul” is acquiring a debt that would take thousands of lifetimes to repay. Then, I worry the generosity will suddenly stop.
On the cosmic balance sheet of give-and-take, I’ve run up quite the tab. I decided that, when it comes to family, my very “being” is worth the debt.
It weighs heavily on me.
![[via www.nanamee.com]](https://i0.wp.com/ryansrally.org/wp-content/uploads/2014/01/yoke-i-bear.jpg?resize=246%2C205&ssl=1)
[via www.nanamee.com]
Hey, I tried to do it on my own for a while. I pushed on, in spite of myself, for entirely too long before I failed. Horribly. I faced a choice: my ego or Ryan’s well-being. The choice was easy, but swallowing my pride was not. I was like throwing-up backwards.
To my credit, or discredit, I just didn’t know how expensive it would get. It took about three months to vaguely understand. Then it just kept getting worse. I cringed when the real cost was calculated. Remember, Ryan’s (projected) lifetime expenses — as filed in court documents — exceed $22 million! Insurance helps, at least for now, but it doesn’t come close enough to keep our household financially afloat. Personally, I don’t know anyone who makes that sort of money, but I can tell you it’s not me. Fundamental math should have been enough for me to see I wasn’t good on my own. But I let my pride stand in the way almost until it was too late.
Thank goodness you came to the rescue!
I didn’t want to be needy. I didn’t want to be reliant. I didn’t want others to know I could not provide. It was humiliating but, by damned, I needed to get out of my own way. I reached out timidly, cautiously, and humbly. You were already willing to be by my side. All I had to do was ask! You took my hand… and refused to let go because it was all about Ryan, not me! Thank you for teaching a stubborn, proud bastard a lesson or two.
Please know, I hold on to you dearly.
How it is
I’m not unlike others in this situation, even though mine is likely worse. They will tell you that every time they receive a gift, they are both eternally grateful and eternally demoralized. Every little bit helps… and that is so incredibly true… but every little bit hurts. It chips away at a person’s sense of spiritual self-balance. It tilts the scales, more-and-more, away from leaving this world a better place because of one’s contributions.
I am never so humbled by these two things: my neediness and your giving.
Oh, for all that is good in this world, I hope I’m making sense.
Also, people will tell you figuring out how to make it through the day is one thing, but what about the months and years ahead? For today, I know Ryan has a pillow to lay his head on. His comfort is assured, at least for now. Heck, even take away his pillow and he will have my arm. The one thing that haunts me above all other is what would become of him without me and his family?
Would the link between Ryan and Team Diviney be broken?
Would he be placed in longterm “care” to wallow away his life in a hospital bed? Void of all the activity, interaction, and love he is accustom. Would he be slowly forgotten?
Would Ryan become irrelevant?
You see, there’s really only one thing that can possibly stop this from happening. You. More truthfully, your generosity. The Ryan Diviney Special Needs Trust Fund is in place because it survives as long as Ryan does. Every penny that you donate, or ever will, goes into and through this fund. It is for Ryan exclusively, no exceptions, so long as he shall live. Any residual will go to our daughter, Kari for her to execute.
So, you see, people that find themselves in a situation such as ours usually worry less about what this day will bring. They are concerned about next month, next year and beyond. It’s a constant struggle between how and when to provide. For Ryan, I generally use the Wish List for urgent or upcoming items (i.e., next few months) and the donations to his Trust for the future (when possible). Both are equally important.
How it has to be
I would give anything — and everything — to have “the old Ryan” back. There is no amount of money in this world that would change that. Oh, just to go back to the way it was and only be concerned with pulling together enough money for a proper wedding or helping with a down-payment on a home for our son.
…or our retirement, for that matter.
Still, I must face the reality of the awful situation that violent attackers, Austin Vantrease and Jonathan May, put Ryan and my family in. As I see it, they are not stepping up to the damage they caused. They placed a monumental financial burden squarely on others. I doubt they give a hoot that Sue and I are struggling. Based on Vantrease trying to offset his civil obligation with your donations (which he was flatly denied), I’m guessing he doesn’t give a damn about you either.
This means I must turn to you for any help you can offer. It’s not about the money… but it is. All I ask is that you please excuse me if I have trouble looking you in the eyes out of my embarrassment. The fact is, I’m not at all worthy of your kindness… but Ryan is. Yes, he surely is.
Okay, I’m going to hit the “Publish” button and hold my breath. Did I get below the surface and explain this at its deeper level?
Ken, I understand some of what you are going through. Our son is chronically ill and has been since he was born. He has Mitochondrial disease, chronic Asthma, IBS, Chronic joint pain, 2sleep disorders, Aspergers syndrome, and depression (which comes from dealing with all the health issues). We were just told that there wasnt anything else they could do only to treat the symptoms as they arise. We make 1 to 3 trips to Riley Children’s hospital per week. There have been times just recently that we have had to ask for help. I understand the feeling of guilt and embarrassing times when we have had to beg for financial help with food, clothing, & propane for our furnace to keep warm. But Ken remember you are asking for help because we love our children. There is a famous saying that I have to repeat to myself once in a while “Pride comes before a fall”. I know its hard to put your pride down. Plus if you don’t ask for help no one will know you need help. We can’t afford to send any money but please know that you, Sue, Ryan, & Ryans sister are all in our thoughts and prayers. Sending hugs to all too.
Well said. Praying for y’all. You are a strong strong man. Good gives you strength to keep going. God doesn’t call the equipt, He equipts the called. Much love and respect.
Ken,
I hear you and understand this emotion completely.
I will begin by stating a core belief………..I believe that it is better to give than to receive.
Every day, I wish like hell this had never come to pass with Ryan. You know this well.
Given that we are faced with the reality of Ryan’s situation, I also feel fortunate that we are able to help.
For every debit that you feel is being taken from your soul, know that there are a lot of credits being applied to the other side. People feel good about helping Ryan. They really do.
In a really odd (f-ed up kind of way), Ryan is providing opportunities for redemption. I’ve done some very seriously bad things in my life and have hurt others with my unwarranted selfishness……….Ask me about Ryan and I will tell you that I have done what I can and what I am capable of doing for that young man. One of the few areas in my life where my conscious is completely clear. What we have done, we have done for Ryan and we have done it for no other reason.
The future is always uncertain and know that there are a whole lot of us that ain’t going anywhere.
SHSP
I too am glad you hit “publish.” People love you and your family Ken. Our dear dear Ken. Each of us holds you all in our hearts and prayers. I am sure you have no idea how many petitions go before God every single day and he hears and listens to every one. Why isn’t Ryan healed? I have no idea but there is a lesson to be learned here. People are basically good except for those sly sons of a motherless goat that placed Ryan where he is now. However, the lesson? Love conquers and comes to the rescue every time. You talk about how wonderful we all are for helping in your time of need but you are amazing!! God has given you strength, mercy and grace in taking care of Ryan. We are all here admiring you and how you have taken such wonderful care of him. YOU ARE AMAZING! Did you get that or do I have to say it again? Sit back, take a deep breath and still your mind for at least 5 minutes. Hear the faint whispers of prayer for you? They are deafening aren’t they? People love you and your family Ken. Rejoice and be glad for that. We got this! Remember? We are here for the long haul. Can I get an amen people?
Ken, agree with the others. Your payback to us is this website, your postings and your amazing care of Ryan. I have become more aware of others requests for donations since Ryan’s attack. I don’t donate to others that often, but when I do I always think of Ryan and the enormous financial cost of his care. Shame on his attackers, Jon May and Austin Vantrease, their friends who stood by and watched and the judge who presided over the civil suit.
Oh, Ken–you actually DO ‘pay us back’ — you see, every day you care for our beloved Ryan, it is ‘debt PAID IN FULL.’ You are his advocate, always. SHSP daily, NGA EVER. Love to you all, Annie
I too am glad you clicked publish. I’ve created a new FB account and so all of my connections are screwy and I’ve lost touch as a result. Here’s the thing…behind this post is the noblest of intentions, loving your son. Let people help you, there is no better vocation or cause than loving a child.
Ken, I hope and pray our souls can’t acquire debt!! On the flip side, although it would be nice, My belief is that giving can’t earn us a place in heaven either. I totally understand never wanting to need something from anyone. If you lend me 14 cents, I’d have to give you a quarter in return but that comes to borrowing…Just because your family has a Need doesn’t mean you are Needy….Forget the Guilt..You are wasting your precious energy!! (Not that I’m in your shoes) Nobody does anything that they don’t want to do and most are being dishonest if they don’t admit that they get some type of personal gratification out of it. Look at that as your reciprocation:0)…Plus, there are so many measures of giving. You “Pay It Forward”…Educating about TBI, groundbreaking proof that people such as Ryan can do well and thrive physically with proper attention. You also contribute heavily to fostering positive feelings in others about “The Human Spirit”, “Faith”, “Hope” and “Compassion” & a sense of community and trying to believe that justice should prevail (if that’s even remotely possible) from unjust tragedy. I could go on and on but I wouldn’t want to flatter you too much:0) Ryan is Relevant!! Happy to be a part of his Team. He is incredible!! Give him a hug for me.
Thank you for reminding me of the heavy burden you carry every day. I really don’t know how you and your family do it. I very humbly offer a donation and a few items on your wish list. Your story has paid me back ten fold many times. It’s humbling, grounding and inspiring. Thank you.
When you allow someone to help you, you give them a gift!
Ken, your writing and your words are able to reach people soooo deeply, you have such a gift. I TRULY believe you are an angel on earth. I read the updates, follow the story and like so many others, pray for your family all the time. What I have just read both touched me and hurt me. I hope to God that you can see the UNBELIEVABLE, INCREDIBLE, SELFLESS “job” that you do in taking care of your beloved Ryan. There TRULY are no words, no words that can describe to you what a hero YOU are. I feel such a connection to this story, as I said, I lost my 29 yr old brother to a brain tumor 14 yrs ago. We took care of him at home (which I believe is the greatest gift you can do for them-keep them home) just like Ryan. I see my brother in Ryan’s place, Kari is just like me, and then there’s you and your wife-just like my parents. The reason I felt hurt after reading your post was because you, YOU feel less of a person/man for asking for help in the care of your son. Are you KIDDING me, Ken??????!!!!!!!!!!!!! NEVER, EVER feel less of the hero you are, my friend, in asking for some much needed help and much DESERVED help out of the sheer, deep love you have for Ryan. Those who have hearts, who love their families and kids to no end, like you do Ryan, absolutely understand and I’m sure most of us, if we had it, would give you the world and more. TAKE? You never take, Ken. I don’t think it’s in you to even know what the word TAKE means. You are give, give, GIVE and my God, there has to be a great outcome for all of you after all you’ve been through and deal with every minute of every day. Unless someone is a 24-7 caregiver, they could never know what a rewarding, yet draining role it is. It’s a “job” you never leave, it is your life, your 24-7. I wish the scumbags families got to live in your shoes for a week at least. Those disgusting pieces of scum wouldn’t even last a day, literally. They get to go on with life, go on trips, celebrate occassions, etc. and never feel an ounce of guilt. They aren’t worth a pot to piss in-they are scum, heartless scum. Compare them to you and your family is like black and white, night and day, they are incapable of even FEELING an ounce of compassion, they sicken me to no end. Ryan has you all and you are doing more, a million times more than anyone else could ever do in taking care of Ryan. You truly are his earth angel and you have played the biggest role in his life, his heart and his care. We love you Diviney’s, it’s as though Ryan is ours, and you are our family, all of us. If I had any amount of money, it would go to you to help the most deserving family I have ever seen, but sadly, I’ a stay at home mom without an income so I can only offer prayers and love. If I ever win a lottery-expect a knock on your door! Stay strong, never, ever feel guilty or less of a man/provider to ask for help. You are more than a million men put together in every way and deserving of all the blessings and help you can get. You are a hero, Ken, don’t forget it.
Glad you published…you have a way with words. You should not feel sorry for asking for help for your son/family. Stay strong. I will continue to keep Ryan and your family in my prayers.
I also wanted to add that you are doing an amazing job of taking care of Ryan.
I was so happy I could do something for Ryan, like buying a box of meds he needs to help him through the days ahead! I know your family is grateful for anything anyone does to help out. I have been following your story and it just breaks my heart. I think of Ryan and your family often. I am a ICU nurse from Pittsburgh. If you ever have questions, don’t hesitate to ask.
You deserve everything you get from good people, Ken Diviney.
Hi Ken, all of us here — we’re right where we’re supposed to be. We feel drawn to Ryan and connected to your family. It’s a pull upon our souls that never leaves. What we get in return — hard to put into words, but — it’s a sense of comfort that comes from knowing where we belong. We need to be here.
The moment all hellfire rained on Ryan and your family, some chimes must have sounded in the heavens signaling that an angel on earth needed help. It wasn’t even a question of “will you go?” but rather, “go.” So here we are, right where we’re supposed to be. How could we not be? Look in the mirror, Ken. You had us all when you said, “I’m the Dad.”
All I know is what I see — a family full of love, and a young man who is healing because of it. Ryan is filled with a loving grace. He is a blessing to all of us. But we would not have been able to know him and love him and your family if you hadn’t allowed us to have that opportunity. It’s not often a person gets to see something — and someone — so extraordinary. This is the other side of the coin you must know. Thanks for opening the door so we could come into your lives. Those who haven’t joined the “Team” yet don’t know what they’re missing — so much love and so much grace…and it’s *amazing*
We have never met, but I have a sweet friend who keeps me up to date on your son’s condition. There are very few in the Unites States — much less the world — who could afford, on their own, to provide the care Ryan requires. Through no fault of your own, and no fault of your son, you have found yourself in this situation. How could anyone have anything but sympathy for you? Anyone with a heart must feel compelled to help! God calls us to “do unto others as you would have others do unto you”. And, I personally derive great joy when I do something for someone else. Especially someone in need of my help. But, I empathize with you. I do not like asking for help. Nor do I like receiving help even when I haven’t asked. I understand your guilt and feeling demoralized. But, please know that those who are helping are doing so with joy and love in their hearts. You’ve given an open invitation to the hearts of many through the website and Amazon page. And, those who have a love for your son and a compassionate heart and feel called upon to help are the ones who do help. I promise you those who are helping will gain as much from the experience as Ryan will. You’re a father who has been called to do hard things…and who does hard things with great love. Ryan is blessed to have you as his father. I pray for God’s blessings upon your family.
“For today, I know Ryan has a pillow to lay his head on. His comfort is assured, at least for now. Heck, even take away his pillow and he will have my arm.” …those three sentences break my heart. No one can ever say that you aren’t doing this for your son.
Ken, my brother, please do NOT ever feel guilty. You have suffered as much a loss as Ryan. You have nothing to apologize for, to be ashamed or embarrassed of. Your love for Ryan shines through and love conquers all. I bring up Ryan every Wednesday at our Cathedral’s weekly Prayer Table. Deacon Sue already anticipates my request! Sunday, we will welcome and formally install a new Canon Missioner who will coordinate the Cathedral’s now somewhat fragmented outreach. When he and his wife and the dog get settled and he begins to get a feel for his job, interacting with other clergy and outreach people I will speak to him about perhaps our Cathedral purchasing something for Ryan. Establishing our food pantry and developing guidelines for its use as well as taking over coordination of the Albany Overflow Shelter will be among his first priorities. But I will approach Father Hunter as he develops parameters for outreach and again, takes over coordination of a fragmented outreach. You remain in my prayers and again, will be brought to our weekly Prayer Table. And you are NOT “begging,” Ken, my brother. You are asking out of love for your son. I’m retired, on a fixed income, struggling with some health issues so I cannot do much financially. But I can and will continue to pray. Be at peace, my brother.
Dear Ken,
Like Carla said,we will always be here as long as we can.To see how far Ryan has come because of such a loving and devoted family is the best,
No,can’t ever imagine how you feel or what you’re going through,but Ryan has become such a big part of so many peoples lives ,he will always be RELEVANT and we are the ones that should be thanking you
Love Gail
Ken and Sue, I truly believe that we are guardian angels to and for each other, on an as-needed basis. I cannot even begin to fathom your journey, but please know that I carry you and your family in my heart and in my prayers – always. I just ordered some things for Ryan off his Wish List; I prioritized by need so I could assist with what he/you need most right now. Every single day we each decide how to spend our monies – Starbucks, dinner, the movies…. or, we could go to Ryan’s website and offer an ounce of relief. I have chosen the last option. Paying it forward. NEVER, EVER regret hitting the PUBLISH button, Ken. My heart feels so much better helping the Divineys. Thank you for allowing me to be a part of this.
Much love, big prayers, good karma.
Karen
You are strong and loved, thank you for sharing. I have so much in common with your journey and your struggles, I am so grateful to read your beautiful words because I know there really is someone who knows how I feel so intimately, it is shocking to me reading the words of other care givers how connected I feel to you even though we’ve never met we share a piece of suffering and while each persons challenges in life are unique I instantly recognize the voice of someone who has shared such deep pain. You are strong and loved. Thank you for sharing.
I’ve said many times that I don’t know how to explain the connection that I feel with Ryan and your family. I just know that in my heart, that you would do the same thing for someone else. I know your faith has waivered over the years, but I believe that God doesn’t give us more than we can handle. Maybe that’s why we are all here for you. There has got to be a happy ending to this. Give Ryan a few extra hugs tonight. He has touched many lives and I will not stop supporting your efforts because I feel your pain, your feeling of helplessness because I’m a parent too! Keep your chin up, you’ll never walk alone.
So glad you hit the “Publish” button. Very touching, Ken. And, yes, for Ryan. SHSP, NGA ever. I know times are hard for all of us, but it is truly amazing how much a few dollars from many can help with Ryan’s care. For Team Diviney, Ryan’s well-being is truly a cause greater than ourselves.
Thank you, Ken, I did purchase some things this month, I don’t have much but I will do what I can. I to have 2 children and 2 grandchildren, I know others would help me if the “shoe was on the other foot”. It is my belief to help who and what I can, when I can. You owe us nothing and never will. What I choose to do is strictly what I can do. When I text you and you text me back, it warms my heart to know that you are the kindest person who loves his son, and a family that needs to be together with their son. I don’t know you but love your family and pray for Ryan to come back to us, I hope and pray that I will see this day soon and I helped in some small way.
Ken you are beyond worthy of our kindness and Sue and Kari all in the interest of Ryan. No one asked for their life to be changed that night, Ryan was innocent just living the college student life. Which should have been one of a million memories he would make in his young life . Two evil men made a choice that destroyed a whole family and stole a young mans life . There are parents who would have already given up , who would have place their child in long term care , and made weekly or monthly visits. That is not what you choose to do. Your family stepped up and did what you thought was right. That is exactly what I would have done as a parent. So Ken in my eyes you are a completely amazing man who is worthy of any and all praise you receive!!
It is an honor and blessing to invest ourselves in your family, and you are making truly remarkable contributions to the world — for which Ryan will always remain relevant. And feeling humbled by grace is a good thing, spiritually speaking. We love you Divineys! Thank you for allowing us to come alongside you on this journey with Ryan <3
My dear friend, you explained yourself perfectly.
I know you know that when people give/make donations, it’s because they WANT to, not because they feel they HAVE to. Further, those that do give do so with a charitable heart, because that’s what God instills in us. We do not look for accolades. It would cheapen the benevolent act.
Team Diviney will continue to keep Ryan relevant as long as we are here. The love we have for Ryan and your family is constantly on our hearts. Please, please, please do not feel guilty about asking for / receiving help.
I know I sound like a broken record, but I really do think we should put a fundraising challenge out. I would love to see people in other cities/states organize bake sales, concerts, bazaars, craft shows, karaoke nights, 50/50 raffles, golf tourneys, etc. Every little bit helps.
God Bless You and your precious family, Ken.
love,
carla
45 days, exactly, after Ryan was attacked… In the middle of your nightmare, I had just arrived in Roanoke, Va, to see my sister 4 days after we lost Mom. Snow had prevented us from being together. Within an hour of arriving, you checked on us. You had just found out about Mom, having never met her, or me for that matter, in person. You owe us nothing. Ever. That kindness will never be forgotten. Score: tie.
Wow! After taking care of my in laws for 3 years if they had given even one tenth of a shit like this, life would have been so different. For them it was all about the money and them holding on to as much as they could. For us it was more about making life the best it could be for them and keeping them healthy. They never saw that even though we explained it over and over again.
Glad you hit publish it is nice to see you humble and know that there is a bigger cause, not you but your son. I am glad there are people who feel the way you do. It does make you more human than most. 🙂