I was working with Ryan and noticed the shirt he had on. It was from a trip we took when he was being heavily recruited to play college baseball. He has many of these shirts, but this trip was special. We flew to Las Vegas the summer before his senior year of high school. We stayed nights at the Hard Rock Hotel —just a stone’s throw away from the UNLV campus — and spent the days on the ball diamond.
I remember every detail about this trip we spent together. Mostly because this is where he told me he didn’t want to play baseball in college. I respected and supported his decision. He wanted to have a different college experience than sports. He wanted those four years to focus on education and the social life. I admired him for this choice. He clearly had given it much thought.
We flew out on my birthday (June 25th) and Delta promptly lost my luggage (which was found two days later). Ryan thought this was just hilarious that all his baseball gear, that I watched go up the conveyer just after my luggage, was delivered while mine was lost. Really, I don’t even know how it was possible, since it was a non-stop flight. Anyhow, I was laundering the clothes off my back in the bathtub each night with hotel shampoo.
Back to now… I was reliving this story with Ryan (I talk to him all the time). Then, without my mind giving me any fair warning, I said “I’d give up all my tomorrows for just one of those days. Ryan, I’d do it for any yesterday.” I reflected on what just came out of my mouth. Would I really?
Yes, I decided, I most certainly would.
Is there really any tomorrows left for Ryan (or me)? Sure, the sun will rise and set, the earth will spin on it’s axis, and the Chicago Cubs will not win a World Series. These, you can bet a paycheck on. But, I’m talking about living… not life. Like I said some time back, life is so much more than a beating heart.
I could feel the anger swell and I practically ran into the next room. I cursed myself — to hell with saying “Fuddruckin”, I let the mother-of-all-words fly freely and frequently — for breaking my own Golden Rule. I brought this grief upon myself by not living in the moment. I was hurting. Bad. The tears confirmed that. Here I was, once again, feeling the emptiness and despair that is always present, but now magnified.
I had to stand up for myself… against myself. I begin rationalizing that it is just peachy-keen to have this out-of-control tantrum. How could I fault myself for feeling this way?
Then, I looked back at Ryan and was drawn to him.
I looked into his bloodshot eyes and leaned in closely, planting a kiss on his forehead. I could feel his warm, soft breath on my face. His eyes didn’t follow me. They maintained a distance gaze. Although I was smack-dab in his face, his eyes seemed to be looking at something far beyond me. Perhaps miles away. As though he could see right through me. There was no recognition. No acknowledgement. It was if I were invisible.
Where are you, Ryan?, I wondered. Do you have memories? Do you dream? Do you know who I am? Are you sad? Scared? Why, of all the seven-billion people on the earth, did Austin Vantrease and Jonathan May cross you that night? Why did they ever have to be born? What diseased sperm and egg created this evil? How long did it take to teach them that their “manhood” would be defined by how many defenseless people’s lives they can ruin? Ryan, will you ever come back to us? I miss you.
Ryan continued his unfocused gaze beyond me.
Yes, these were my questions to consider. Questions without answers. Like thirst in the middle of the ocean. Hunger surrounded by tainted, rotting meat. Needs that will never be met. Wants unsatisfied.
Is this hell? What do we do to deserve this?
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I rarely comment, but I am one of the hundreds that check on you daily. We are with you and for you spiritually; and always will be, no matter what.
My heart breaks for you and your family. You did nothing to deserve this. I can only imagine how hard it is to see improvements in Ryan, however from everything you report and from what Hannah says I have to believe he is improving. I know these words are little comfort, I wish I could do more. Please know that we are still here and not going anywhere.
We are praying for Ryan’s needs to be met. Of course, we all want to see Ryan continue to improve. The response he gave to the ham juice the other day is a sign he is progressing. Keep up your efforts Ken, you are doing a great job. Ryan can (and is) improving because of you….his Dad.
Ken,
So many posts have spoken so eloquently to your position. So why am I posting? To encourage others to post as they feel led to do so. Your support network is huge, and there definitely is strength in numbers. Thank you for being open to our attempts to help and support you. Who knows? As Scott mentioned, some seemingly random post may contain the very knowledge needed to bring Ryan to the next level.
Keep on keeping on, dear friend, and team Diviney will continue to share, as best as we can, all of the support, knowledge, encouragement, and most importantly, love that we possibly can.
Lots of love,
Cass
Ken
My heart absolutely breaks for you. I wish there was something magical any of us could do or say to make you feel better and to take away your pain. But since there isn’t, just know that many out there including myself are praying for Ryan and for your family on a daily basis. SHSP in Morgantown
Hi Ken,
I know you don’t know me. I came across your site while looking for information about IBRF. Since then you were kind to send me an email. I don’t know if what I say will help or hurt. But I want you to know you are not alone with how you feel. When I saw your site I first thought it was about Ryan Steidl who was another patient at Meadowlands hospital, but soon found out it was another Ryan, your Ryan. His mom and I became friends, and we talked about the same feelings you wrote about above. Once you start the journey of commitment to make your child better you can’t turn back. There is something new being discovered to help these kids all the time, and even though one thing doesn’t work, maybe the next will. It is so frustrating that there is so little research done on the potential positive possibilities. And having to pay money out of pocket all the time just to get any kind of help. I could go on and on, but I won’t before I say too much. I just want you to know that I also feel that rollercoaster of hope and despair, and then depression. Yet us parents still go on. I don’t know how, but we do. I guess we just love our kids more than life ourself, and would do anything for them.
Vivian
Hope Ryan’s QEEG goes well this Sunday. Tell Andrew I said “Hi”
I am a regular follower, but rarely post…always wanting to say something helpful or supportive, but never feeling like I can articulate what’s in my heart. Then often thinking how stupid that is. Saying anything is better than nothing! I am so sorry for the profound grief that you are feeling right now. I can relate to your pain and despair, and how it can come in sometimes unrelenting and unexpected waves. I believe in you and your family, and I know you will get “better” and continue to cope and care for Ryan. Ryan IS HERE, and he is HERE for a reason. That reason is you, Sue, and Kari. Period. Always praying.
You nor Ryan or the family deserved any of this. Let it out man. Please tell me more!!
Ken, I could never imagine going through what your family is. I know what you mean about looking miles away. A Friend of mine had a Brain Anurism then a Bad stroke about 2 yrs ago. She was a Healthy Person and then when this happened to her shes lost so many abilities to do things. She cant walk, talk, Feeding Tube, Cath and When shes looking its like shes lost inside and dont know how to get out. It breaks my heart that we cant do more for them. My Prayer Each and EveryNight is that Her and Ryan Recieves a Miracle From God. She has a special needs son that was her life now she cant do anything for him. I wish there was more i could do but i cant and it breaks my heart. But just hold onto Faith that God will show a Miracle in Her and Ryan.
Have you tried using music daily and often? The special with Congresswoman Gabby Giffords stated they used music to reach her mentally and to re-teach her. Maybe start with a child’s CD of singing nursery rhymes or toddler tunes. If you want to try it, I will go buy the CD and mail it to you. I think I saw them at Walmart.
Music is a huge part of his day. He gets a wide range. from classical to familiar children’s songs. I have many tracks for him, including songs, commercials, and sound bites he loved.
Ken, I can’t imagine the exhaustion you must feel; emotionally, spiritually, and physically. Remember this is a marathon, keep pushing forward, one moment at a time. Ryan is physically healthy at home and not sick in a hospital, he has tolerated all the baclofen reductions well, he is continuing to be relevant (people in other countries check in to see how you guys are doing that is incredible!) I think so many of us that haven’t met you feel as though you are a part of our day and that we know you, but so few of us leave comments so you don’t even know the magnitude of support you have. I hadn’t left many comments because I’m not ‘into’ the blog thing really, my words seem so futile in scale to what you are going through, and quite honestly I don’t want to type anything that sounds stupid. But I felt convicted that here I was not sending you anything because I was more worried about myself than the fact that maybe a simple ‘here thinking of you’ post might encourage you even in the slightest way. Especially since I do think of you guys daily, hurt for you guys, and am a better mother because of your example of what a family is suppose to be. So I am here thinking of you today, praying for you, wishing there was more I could do.
Thank you!
God bless you sir. Please know that complete strangers are praying for you and feel your pain through your words. I am so sorry that you and your family has experienced such a tragedy. You are a man of incredible strength. I pray you don’t lose that strength.
Stay strong sir. Stay strong.
Agree completely with Hannah. I continue to see improvements in Ryan. His recovery will happen in accordance with Ryan’s timeline, which is painfully slow by any measure. The difference in Ryan over the past 18 months has been remarkable, yet improvements are painfully slow by any measure. Time can be remarkably cruel.
We all miss Ryan very much and the tragedy of what those thugs did cannot be measured in human terms.
Remain focused on what matters most….RYAN. That’s about the only comfort and advice I can muster at this time.
I do believe that Ryan “feels” your heroic, herculean effort and your unconditional love every single day.
Stay Strong Ken.
I read this and tears started pouring down my face. I cannot imagine how you feel. I read this blog every day and I think of my son. You have made me learn to appreciate what I have. You are so faithful to Ryan and so open about the pain and struggles you are going through. Know that there are so many people who pray and think of you and the whole family every day. I only hope that I could show the strength and compassion that you and your family show every day of your lives. You are always in our thoughts!
Mr. Diviney,
Everytime in the past 2 years I have come to visit Ryan I see an improvement in his physical appearance and in his awareness. I know that look that he can give, where you feel like he is looking at something way beyond you, but I remember last time I came to visit he looked at me for a good while like he knew exactly who I was.
The way Ryan reacted to all of you in the Thanksgiving video again reconfirms for me that he is still in there fighting. He might be sad and scared at times, like we all are, but having you, Mrs. Diviney and Kari as his #1 cheerleaders must comfort him.
I am sorry that you have been feeling down lately, I hope that you can bring yourself out of it. I hope to visit over winter. Miss and love you guys, send Ryan my love!
-Hannah
You’re a peach, Hannah!
We love Ryan so much — if he wasn’t here … the sun wouldn’t shine as bright and the sky wouldn’t be as blue; flowers would just be flowers instead of a message of hope whispered by Spring. Stars would twinkle but not shine with possibilities. Ryan’s love, which is living and breathing, would live on, but not here where we could see, touch and embrace him.
Everything you said, so profoundly and magnificently written, thoroughly captures your pain…and, our pain as well. We feel all of it too and sometimes the hurt is excruciating.
But, like you, we’re not giving up. All you can do is hug that beautiful boy like there’s no tomorrow. And when tomorrow comes, do it again. He knows you’re there, of that I am 100% certain.
He’s your boy and he’s our boy too.
I know there are some who cannot or will not grasp the full measure of suffering Ryan and the rest of your family and friends have endured. On the bell shaped curve of life, there just are people who fall into that part of the spectrum. A part of their soul is not functioning well.
But we’re here, Ken. And — we still believe in the hope and promise of today — and tomorrow.
I still feel the presence of the Lord every time I am near your son. Thank you, so much, for sharing him with all of us.
Love & faith always,
Paula
Ken,
I follow this blog daily but almost never comment. But recently your pain and suffering has been so raw, so close to the surface… I am so sorry for what you, Ryan, Sue and Kari are going through. I wish that I could make it all go away and that things could be the way they SHOULD be. I wish your days could be filled with more than just the standard set of what must be done depending on what the time on the clock says. I wish you would just get one decent apology/ acknowledgment of responsibility/ ANYTHING from just ONE of the people who caused this. That troubles me as much as everything else- that no one of those responsible or their family members have ever reached out to you. That is just insane to me. What kind of people ARE these (don’t worry, I already know…). I don’t know if there’s anything I could do to help but I wish there was. I’m sorry for all of you. I hope you know there are many people who follow your daily tasks and it effects all of us deeply. Stay strong, we are with you. Please, please, please try to find a little time SOMEWHERE to focus on yourself. Take care Diviney family!
Their lack of remorse has the same impact on me.
Katie, you are a very good writer, so please, please, please write. This just might be the most important thing you will do all day! Thank you.
She sure is.
Ken, I honestly feel that Ryan is in there and waiting to have that door open enough to make the connection. Just watch that Thanksgiving video again and notice the responses from him….the movement of the right hand, maybe not a full-fledged “thumbs up”, but look at it…he IS trying to connect with you! Or look at that shower video…..he knows the water is refreshing to drink! You can never give up trying to find that right key or keys that will open that pathway for him to come back. Don’t see it as a blank stare he’s giving, but more that his brain is still healing and he can’t control his eyes yet. Yes Ken, I really believe Ryan is there, and also think that he feels the frustration too. Although he can’t verbalize it, he is probably very comforted by all you’re doing to try and help him come back. Don’t ever give up trying different things. You never know what seemingly odd thing might cause a breakthrough.
Ken, maybe Ryan needs help re-learning how to do things. Instead of just telling him to do something like wiggle his toes or raise his arm, have you done the motions for him while repeating it? I know it will take endless repetition, but might be worth a try if you’re not already doing that.
Yes, I agree. I put familiar objects into my therapy with him (e.g., baseball when doing arms).
If you are moving his arm, are you telling him he is moving his arm while you’re doing it? I don’t know if that makes sense the way I wrote it, but maybe he needs the connection of the words and movement together so his brain can be reminded to connect the two things. You could try for something small, like wiggling his toes or fingers while telling him what he’s doing, then tell Ryan to wiggle his toes by himself. It could take many repetitions to see results, but can’t hurt to try.
I guess the best way to explain what I do is it’s exactly like teaching an infant.
I ran into a processing problem with my husband when he was in a “coma” – or so they said. The doctors and nurses seemed hell-bent on him making the “peace” sign with his fingers to show that he had understanding of his surroundings. He did do other movements, but whenever I showed the docs, they said it was coincidence or “unintentional” movement. Anyway, I finally decided to “teach” him the peace sign and not take it for granted that he understood it or knew what it was. For around a week or so, I consistently said “peace” and moved his fingers into the correct position. Eventually, he did it on command. It was the same with a baseball. I kept putting it in his hand and making movements to throw it. Finally, he did. “Thumbs-up” took about 3 weeks while in a coma. Also, remember that Ryan may have paralysis and not just a lack of connections. My husband is awake and functional now (4 years have passed), but he will never move the left side of his body again no matter how many times we ask him to (the right side hematoma damaged those connections). He is now is hemiplegic. Even his eyes suffered from 3rd nerve damage due to brain swelling. He was “in there” and could hear us at a certain point, but the brain was shut down to heal. I told him that he really should make it a life path to go to the families of brain-injured individuals to tell his story.
Hmmm. I think I’ll try the peace sign beginning tonight!
You are so honest about your feelings, Ken. I feel like it helps for you to write to us, and it really helps us, I think. Speaking for myself, I wonder the same things that you do. I will never forget Paula’s poem, “Where do You Go?” Ryan does seem to respond at times but not at others; I have seen this in videos. I felt like he was right with Kari for Thanksgiving and was waiting for the pumpkin pie. :)Imagination? I don’t think so! He is here, just not in the way you are accustomed to, Ken, but we have to believe. I know none of us are ever going to give up hope. Hope is everything! Always here with much hope, faith, love and prayers for Ryan’s recovery.
Stay strong, Ken, stay strong. I am thinking and praying for all of you.
Ken,There are no words that can ease your pain or loneliness for Ryan and we all hurt for you, Each day and the next must feel endless to you, but seeing how Ryan has progressed ,even just a little ,is slowly bringing him back to you, I know you’ll never give up, Ryan will be back .Always here to listen to you and help in any way. You are never alone. Love Gail
Oh my God. Tears are flowing – you have no idea how many of us feel your pain. I have never met you or Ryan but this has effected me in such a profound way, I have no words, just prayers that some day these posts will be of better times. My youngest is turning 22 today and I couldn’t give him a hug today without thinking of Ryan – they look so much alike. I hope brighter days are ahead. Love to all of you.