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.Yet, I have to do it. For Ryan’s sake, I must! And I will. Without you, our family simply cannot provide all that is necessary for Ryan’s care, comfort, and recovery. You continue to give and expect nothing in return… that is exactly why I want to return this blessing to you many fold. When (If) the time comes, just look me up (hopefully you won’t need to look down!) when you need your halo polished or wings fluffed.
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?