Emotionally, I’m a mess. I just don’t feel “right” and it’s not going to get any better. Not today, anyhow.
Today… well… I just want to make it through.
Forget that Ryan’s skull surgeries were denied by all the hospitals that the surgeon has privileges. Forget the overwhelming feeling of having to start all over again with finding another surgeon — and hospital — that will take him. Forget the frustration that over a month was wasted in getting his skull repaired as the cranial defect grows. This is all too common in the medical community. I deal with it all the time.
All that matters at this moment is what today will bring. How it will kick the crap out of me. I just wish it were over! I’d give so much to make it all go away.
It won’t, this I know. So I will do what I am good at doing… I’ll lower my shoulder and plow through it.
I know what’s coming. The thing is, that’s what makes it (even) worse.
I need to take Ryan to another surgeon’s office. In a few hours I’ll load the seemingly endless supplies and equipment into the van for our trip. That sucks, yes, but that’s not what’s going to rip at my emotions.
It will be all the staring.
I don’t blame these people, I really don’t. What they will do, unknowingly, is human nature. It’s hard to look at my son. It’s hard not to look at my son. It’s hard for me, as a matter-of-fact, even to this day.
Nope, I can’t fault them for it, but that doesn’t mean it hurts me any less.
“Strength does not come from physical capacity. It comes from an indomitable will.”
Most people don’t realize how much it hurts me. They won’t notice me, the man who is pushing that poor soul’s wheelchair. No, instead they can’t hide their look of… what? Shock? Pity? Repulsion? Horror? Yeah, it’s all these reactions wrapped-up in one.
A few will even cover the agape mouths as they try to hide their wonder and amazement.
Some will gasp.
Not for me, but for them, I’ll pretend not to notice. I might even give a comforting smile to let them know it’s alright. You know what? It’s not though… but it’s not by their doing. This will do what I want, namely, to break their gaze.
Mercifully, they won’t notice that I’m fighting to suppress the tears behind my highly tinted sunglasses. They won’t know that I demand of myself to hold it in — as much as possible — until Ryan and I are in the van. Not until we are heading home and no one is paying attention Then, and only then, will I allow the deep anguish and despair to be released in what is always a stream of tears and uncontrollable heaving.
I read your posts often. You are a wonderful family that have been thrust into the arms of hell, so to speak. My heart breaks for you. I will keep you in my prayers.
I cannot imagine how hard that would be for you. To have your heart broken on a daily basis not only by your son’s condition, but by others’ reactions to it. I must say though that I would probably be at a loss for what to say to you or to him if we should meet on the street. I like to think that I would smile and speak just like I would to anyone else. But I just don’t know. My heart goes out to you and to Ryan. Prayers for strength and healing.
God bless you Ryan and Ken–my prayers are for you finding another surgeon who’s hospital will accept Ryan for care. Prayers and love, Annie
I am praying to God to help you through this difficult time. God Bless you and your family.
Fox 5 news ran a story at 10 p.m. last night about a woman who has launched a “Smile, Don’t Stare” campaign to address the very issue you wrote about. Her son, also named Ryan, is suffering from a TBI. I thought of you when I watched the story and realized that we need a shift in consciousness about how we address people with disabilities and injuries. You remain in my thoughts and prayers.
Your post today really hit me hard for some reason. I am so beyond pissed!
I am not a graphic person but if I was I would make a “tasteful” board sign for Ryan to wear out that has a small picture and names of Jon May and Austin Vantrease with the words….these boys hit and kicked me in the head….Ryansrally.org. Like in the old days when an adulteress wore the scarlet letter….except it’s in reverse. You are not the criminal here and shouldn’t carry the embarrassment of stares.
Ken….if people are going to look at Ryan…which is inevitable, give them something to look at that might bring in readers and support.
Our hospitals deny Ryan care but give care and rights to illegals and terrorists…what the hell is wrong with this picture?
Good vibes sent your way. I’m so sorry that you have to face such tremendous struggles everyday. To say it’s unfair doesn’t even begin to describe it. But through it all your family has stayed resilient, that’s incredible and amazing to me. What a great family you are.
Ken, your strength and determination are inspiring.
Prayers and thoughts for you , your family and Ryan. I hope you find a doctor and hospital that will/can help.
The amazing strength of the Diviney family! I pray that your walk will stay positive no matter what you face and despite the looks and comments! I pray for continuing strength!
The compassion at Ryan’s Rally is palpable. I hope you succeeded in your quest, Ken and that you are resting now that this harrowing day is over. I’m sorry you were so vulnerable today.
I can’t even imagine what you and your family have been through. I admire your strength and unconditional love that you have for Ryan. I hope and pray that you can find the surgeon you need to repair Ryan’s skull and that he has no complications. My heart goes out to you every single day and the hope that those boys pay for the rest of their lives for taking away Ryan’s future!
I would not pretend to understand what you do every day. While it doesn’t make it right stares, etc or partly due to the fact that people don’t know what to say, are afraid of what they say may be upsetting to you AND result in the guilt that is realized when you are so thankful that it is not you doing this daily. My hopes for you is that you have everything you need each day to take on the challenges of that day. God bless
Hope it wasn’t too bad .Ken, and praying things worked out with Dr and hospital
I pray for your family and can’t stand that the hospitals are denying this. I wanted to tell you (briefly) my story of insurance denial for a surgery that would relieve me of 17 years of extreme pain. Insurance denied me 4 times. I called and spoke with supervisor of supervisor at the insurance company and got nowhere. Eventually I decided to use social media to my advantage (The Facebook page of my insurance company, my Facebook page and all of my friends pages along with anyone they could share it with. I asked all my friends to go to my insirance company’s FB page and paste a pre-written statement saying basically that they were aware of how the insirance company was treating me (I had two separate dr opinions stating this surgery would relieve 80%+ of my pain). Then I looked up the executive officers email addresses at the insurance company and began emailing them daily. Everything posted on FB or on Twitter or on emails was pure fact so they couldn’t do anything about it. Long story short, eventually my surgery was approved (the executive medical director of the insirance company actually called me….they wanted the social media attention to stop.) I also created a petition on change.org. Tagged change.org on all my posts so everyone that ‘likes’ the Change website would see my request to sign it. I also sent my story to every news channel FB page I could find….as well as tagging a few well known celebrities (hey, whatever it takes).
Anyway, I just wanted to share my story…I am sure you have considered and tried every option you could think of.
God Bless you and keep you! You are awesome parents! Continued prayers!!!
Hi Ken. I’m so sorry to read this recent posting and of the additional pain and BS you have to endure. I don’t understand the specifics. I am more than familiar w/hassles & onuses placed on us by the–almost oxymoronic–US healthcare system. Two years ago, I had to change almost all my doctors because all but 2 were on staff of a major area hospital that decided they were no longer participating providers in my insurer. My endocrinologist pulled some strings to maintain our relationship, charging my insurer the participating provider rate. Medicare is another wonderful headache! “Obamacare” is a beginning but we need to completely overhaul this country’s health care delivery system. My husband, Tim, a native of Wales, will soon be off to his semi-annual Artist in Residence “gig” in Paris. He raves about the 2 countries health systems. Neither is perfect but what is?!
I pray everything works out for you & Ryan. As I’ve said to you many times, we don’t know what Ryan may comprehend. It may be more than you think. He knows you are there for him and your love. I pray that everything works out for you. don’t worry about people’s stares, etc. Ignore them. And those of us w/disabilities have to navigate the world as best we can. Not everything, alas, is accessible. (I walk w/a cane post fractured hip & was informed, Friday, I have had a “slight stroke.” I was going to quip, “Is that like being slightly pregnant but my drs. were all business. No levity!) We all muddle through the best we can. Know that God is with you in all of this and the prayers of so many lift you up to Him every day.
God bless,
PK & Tim
Praying for you guys. I admire your strength!!!
prayers for your family…..
Praying for Ryan, you, and your family, as always.
All I can offer is love……
I am grateful that I don’t have to walk your road. This hand you’ve been dealt is awful. I can’t throw pretty platitudes at you. The whole thing sucks. I admire your strength, loyalty and resolve, but that doesn’t help you. I care and that is all I can offer – an ear to listen. Oh, and cyberspace hugs. xxxx
I’m glad this day is almost over for you and Ryan, and I hope the trip was worth it. Stay strong <3
Prayers you find some comfort on your journey.
More love coming your way, then you can possibly imagine!
Ken…have you heard of the Oklahoma Surgery Center? They don’t take insurance at all, but charge prices that approach 80% off the ‘insurance price’. They are unconventional, and may therefore take Ryan without needing to get an ‘insurance pre-approval’ for the surgery….they don’t need one (!)
I realize it’s a long way from home, but it may be worth a call…
Tom McClelland
I hate this for him, you and the rest. I keep wanting to say its gonna be ok. Just so ya know we are all still praying for a miracle. I respect you more than you will ever know.
In my prayers.. People did this to my dad also he had Lou Gerighs disease (ALS) and he couldn’t swallow talk or walk and people would just stare.. I raised my children that is wrong to stare at someone and the right thing to do is say a prayer for them and that is how they are raising my grandchildren.. God Bless
Maybe if you tell that person staring to teach other’s that violent acts aren’t victimless it will make them think deeper.
It’s beyond difficult. I remember the first time it hit me how sickly my mom looked dying of cancer when I noticed all the people at the airport staring at her. Looking at me as though I was some monster putting her on a plane. I was supporting her decision to find a clinical trial. Her last dying wish. I parked her chair facing a window so she wouldn’t see all the staring people, then I went into the bathroom stall and broke down and regained my composure ( as best as I could) before coming back to her.
You’re right. It’s human nature, but it still hurts.
Stay strong Ken. You are an amazing father!
You are always in my prayers
I wish there were words to tell you what an inspiration you and your family are to so many…On bad days like today please know that you’re all in so many peoples thoughts and prayers. Hugs and prayers!
Ken I love seeing pictures of Ryan…not because my heart doesn’t break to see him but because it reminds me to take a moment to say a prayer for him. Hold your head high Ken…you have nothing but pride with that son of yours!:) Let everyone see your pride and joy! Ryan is unlucky for what has happened to him and all that he endures…BUT he is the luckiest to have a father such as YOU! A father who has and always will do anything for him!!! You hold your head high for yourself and your son! Love and prayers to you, Ryan and your family from here in Kansas!
Warm hugs of comfort from a follower in Ohio
PS – I will also like to add that nothing removes the pain in our hearts everyday. Nothing removes the financial woes, pending medical procedures which manafest into clogged arteries of red tape and BS. I can only find solace in breathing & telling myself that we will be okay; things will be okay. That the obstacles put before us on any given moment will be overcome and when all is said and done, all we can do is the best of best within our capabilities of doing. United we stand; providing strength, love and support to all the families who face similiar trials and tribulations. My son’s attackers were never found. So let us remain unified and find the power in numbers to keep our bodies and minds superman & superwoman strong; unconquerable; unstoppable for as long as we may live. Breath, relax (yeah right), and find solace in knowing we/you are doing/going above and beyond most human beings physical & mental limitations. Please help us to feel this peace and calmness within our hearts as often as all the external interferences will allow us to. May the forces of all universe, magnetic fields, energies, mystical and miraculous anomolies send forth their almight powers to please help & guide us. All my love, maureen
I would LOVE to live near you to walk with you to carry 8×10 glossy of the mongrels that did this.. Only to tell people stare at this… This is to blame…. Yes THIS…. Not THEM!!!
Ken I keep saying over and over again that I hope that miserable SOB rots away in jail. Not sure how you get through the day and it is ok to be an emotional wreck sometimes , you have earned it!
Much love to you all! Give Ryan a hug!!
Ken,
Such poignant words from the heart of a great man truly helps remind me every time to keep praying for the Diviney family, keep perspective on the blessings and challenges we face and keep loving those around us.
Joe
Dear Ken, please know that you are not alone carrying the crosses which have been placed upon us. I too struggle in this world, which has very little place in it for those with disabilities. Just going through the airport with my son was enough to bring me to tears yesterday. Odd thing is I cannot figure out it they poured out from me for what he has to go through, or if they flowed upon themselves for the anguish, & dispair he has to go through, ,while others just past by and stare, were only concerned with themselves and their place in line; as I struggled to carry his baggages and push him in his wheelchair. May a higher power take us to different plane, one day in time, where all the unselfish, all giving human natures, pain, and the capabilities or lack there of, let us join in harmony together. I cannot imagine any circumstances more difficult than the ones i am challenged with daily and the extreme inner strength we have found to forge forward in the days of turmoil and having to lift equipment and such which for most would be unthinkable. We have to do what must be done with all of the obstacles placed before us for we have no choice; for the love of our children it would be easier to give him my healthy body, and mind, to live a fruitful and happy life; with that I could find peace in ending my time here on earth. I struggle with what today will bring, and cannot think of even tomorrow….we must believe that all that we can do will not be in vein, and that we do know we are blessed as there are those that do hear & respond to our cry for help. You are not alone Ken. No story is two alike; each one with their own unique circumstances, only difference that many sit in their own silence, alone, no family, no nothing, hoping and praying that with each new day the sun will shine down upon us and bring a positive difference than the day before. Giving up is never an option so we waste no time doing everything we can for our loved ones, each & every second of the day. My thoughts & prayers I wish to express to your family and to all of the families who are faced with sufferering and feelings of total helplessness upon resting their head in the evening, middle of the night, middle of the a.m. and as the calendar shifts us into another day. May one day in this life time or the next we come to understand “why”. My love to all. maureen
A smile and strength to you on your journey with Ryan today!
I am so very sorry. It hurts to read this, which only means your pain is off the charts. You are an amazing father and caregiver. I stand in awe of your strength.
This post literally, took my breath away. Such an eloquent understanding of human nature. As always, prayers to your family.
One more hurdle In the line of so many. So so sorry Ken When people stare they’re saying what s handsome Father and son Lets say a prsyer for them. Good luck in a new surgeon and hospital The best for Ryan And remember All here and praying We’ve Got This
Your family has more strength and faith than I have seen 50 families exhibit all wrapped up in one family! You are all in my thoughts and prayers.
Thinking of you often prayers for answer on dr God bless you all 🙂
Praying that you make it through this day with your head high. Don’t let the stares bring you down but lift you up cause you are an amazing father doing what is best for your son.
I pray for you guys! The Diviney Family is amazing, I never really got to know you while I was at Broad Run and I think at the time both were already graduated. But once a spartan always a spartan. I know it may sound easy for me to say that there’s a light somewhere at the end of this tunnel and brighter days for you all. You all have got so much strength and pride into Ryan and I’m sure you all have your low moments but if there’s a family I truly look up to it’s yours. You all are incredible beings I may not have known you all very well but like I said once a Spartan always a Spartan! I’ll be praying for you continuously!
Angelique
Dear Ken: Some will look at him and look at you and say to themselves. Wow, that is one absolutely amazing devoted loving father. They will have some compassion in their hearts for a situation they don’t know the details regarding, but they will KNOW in their hearts that you are a hero. Hugs.
My son is very much like Ryan and we to drag the equipment and wheelchair fight trying to get through the damn doors ….. We to deal with the stares the pity the curiosity so e days I break the moment and smile other days I want to say didn’t you mother teach you it impolite to stare? I hold my head high not for me but for my son who I can only imagine feels much worse at times then we ever will! My gut wrenches and I to hold back the flood of emotions hugs papa bear xox
I can’t recommend this doctor more highly than saying he is insanely talented and caring. http://www.josephmichaelsmd.com/ He does wound care and the plastic surgery he did for my father in law was amazing. He is VERY talented. Tell him Leo Morin’s daughter in law had you call. He will help you.
Omg, this makes me sick. You are an amazing person, Ken. I would personally like to make Austin Vantrease and Jonathan May suffer for the remainder of their lives. I cannot imagine the strength you have to muster to get through a single day in order to not cave to that rage. I’m so sorry, Ken.
Compassion might be there also, please don’t forget how many people care about all of you and want to lift you up and give you the strength to soldier on. Hugs and prayers!
Your endless devotion to your son is miraculous & inspiring. I pray for comfort for you & your family.
Happy belated Father’s Day because you so deserve it!!!! You are an inspiration to me as a parent. Your love for Ryan is undeniable and your strength is truly amazing!!! Praying that today goes as smooth as possible:).
Hi Ken,
People’s behavior and actions can be extremely hurtful — but sometimes, it seems, they just can’t help themselves. Of course what people miss is what they don’t know — sometimes it’s almost like an honest ignorance, so people do what they do — they stare. People are especially afraid of and often condemn things they don’t understand. Sometimes they don’t want to understand and sometimes they just don’t. Their reactions can range the gamut from shock and surprise to plain old garden variety rudeness — all of which I’m sure you’ve seen.
If we were born with the gift of “extra sight,” by that I mean the ability to intuitively recognize, understand and know things about others, all of us might be a great deal more evolved and thus kinder and gentler with our fellow man. Alas, tis not so. Therefore, anyone who is the least bit different from vanilla has to do what you do with your amazing son, and put shoulder into the world and push forward. You have been doing this for a long time and it just wears you out.
Just remember something, though — those folks — the strangers — they are not us. I wish Team Diviney could be there to surround you and Ryan as you go to your various appointments and destinations. Believe me, we’d be happy to inform anyone staring in our direction about the daily challenges you and Ryan face, about the strides Ryan has made, about the sacrifices, pain and heartache you endure. We wouldn’t be mean or rude about it, we would just explain these realities. I imagine many would stop in their tracks and hug you, some might even offer to get involved and actually help, and a few might just turn and walk away. But all of us on Team Diviney would still be there for you.
I am truly sorry about the reactions you must see and how bad it makes you feel. You don’t need or deserve that and neither does Ryan. Here is a big hug from me and my family to you. Remember it when someone stares. Remember we are here, we’ll always be here, and we know you as a wonderful family.
Thank you for sharing with us what’s going on. I know it must be painful for you to even write about it. But I’m glad you do, because we want to know, and we care.
Sending you hugs, love, prayers for extra strength today — my heart is with you.
Paula
My mom is handicapped and people stare at her and ask her questions. She used to Make faces at them to show them how ridiculous they’re being. However, turn it into a positive. Every person who may “stare” may have a heart and say a prayer for him and for you, and there are never enough of those.
I hate that you have had to endure the pain that you have. All of you.
There is a special place in hell for the two that did this to your family.
We know you will appeal, and we are confident in your ability! Rest easy, please. <3
I hope and pray you get the help you need I will keep you and Ryan in my prayers. God be with you today.
I shared this post with my kids today. My heart breaks for you. I always want to say something to parents in similar situations to encourage them and I never know what to say. I love how you serve your son. We are praying for you.
I really hope you get him the help he needs.
Stay strong! You are an amazing man! How his surgery could be denied & you have to go through this is horrific! My son is graduating High School this week. Reading your posts reminds me to appreciate every second of this precious life! God Bless you!
Sending positive thoughts and love.
I have a son, and as I read your posts I can’t help but put myself in your shoes to imagine the heartbreak you must face every day. Your struggle represents so much to so many. We see your dedication through the pain and it is a testiment to the love we all have etched in our souls for our children. As you go through this and many other difficult days please take a moment to close your eyes and “see” all of us out here lifting you and Ryan above the crowds know you are not alone. We are all cheering you on with tears in our own eyes!
I’m sitting here and I can only imagine what you are going through on a daily basis let alone having to go out. Lugging all the equipment in and out and I can only imagine how you feel when people stare. Im sorry you have to go through that my friend.you are of a rare breed. A great man. When you feel like you are breaking down,it’s not that you are weak it’s just making you stronger.
Prayers to you all. May God strengthen you, uplift you and lead you to the surgeon that will make the difference. I pray that Ryan will be restored, strengthened and blessed! Much love and prayers ~ the Dodson’s
The honesty of your post hits me to the core. How can you live this life? How can Ryan live this life? But you both do and you push through no matter. I hope your visit brings positive news and some joy and love find you today. You deserve that. May God continue to keep you in His care.
Love and prayers!
Prayers for you and your family today and everyday
I was going to pray for strength, but, obviously, you have that. So, instead, I’ll pray for at least one kind smile instead of a gasp.
Sending you love and prayers,and strength
My tears are constant when I read your blogs, but the strength of my prayers are strong for you & your family. God is with you constantly & I have learned he only gives us what we can handle. Our reward isn’t here on earth, but in heaven & I KNOW The Lord is awaiting your families arrival 🙁 I wish I could help. I wish I could take all the pain away that your family holds. I wish this world didn’t hurt with all the suffering but please stay strong. Stay strong for yourself, for your family & for Ryan. He is a fighter & he has learned that from his family. If you ever need anything, please contact me. I don’t have much, but I would give it all 🙁 God Bless you all <3 <3 <3
Bless your family’s hearts. It breaks my heart reading your stories and seeing your pictures of what once was and what is now. Ryan is so blessed to have a family like you…such love that refuses to give up on him. You are all in my prayers, especially during your search for his new surgeon. I honor your strength and fight for your son! God bless you all.
I wish I had words to comfort you…my heart goes out to you and your family…
Once again I totally understand. As the Mother of a son with multiple special needs and a Grandson with Tourettes (also sucker punched and suffered broken jaw, lots of pain and humiliation for most of his 19 yrs), I have seen the stares many times. Some are naturally curious. I have to admit I may be guilty of this once in a while–I want to let them know that I get it. I just don’t know how to start conversation and sometimes the caregiver doesn’t seem approachable.
Stay strong Ryan’s family!
I chocked up Reading this. when I read your Blogs/posts I feel like I am going threw the emotions with you!. I know how you feel! Even though my son was born with medical issues and challenges I go threw the same daily struggles with people. Its so tough! you never get over it! One time I felt like the worst parent by thinking it would have been better if my son was dead. ! Not meaning it in a selfish way , meaning it in a way that he dont have to go threw the embarrasement and the looks. It kills me inside. But because of him he has been my inspiration and the reason to keep fighting ! 20 years dealing with it sometimes I wish I could run away and not look back! We are human!! I love my son just like you love your son. I wish there was something I could do for you , Wish I could be there for your appointments(but yet again my mouth can get bad if I dont hear what I want to hear lol) I am prayng for you and your family always xoxo!
Thank you for holding your head up and pressing through these difficult times. Thank you for staying beside Ryan. May God bless this loving and loyal family.
Strength and prayers to all of you. You are the most amazing and loving family that I have ever seen in a long time..
God bless all of you, I cannot even imagine everything you have been through as a family. Thoughts and Prayers for Ryan and your entire family ♥
I hope you have success w this new surgeon. I can’t imagine your frustration and sadness
My thoughts and prayers are with you and your family.
I pray that your journey no matter the looks is positive. Then the looks will easily be forgotten as you fight the next battle for Ryan. You are doing an amazing job and still fighting. The people who are looking do not understand his battle or how it came to be. You do. Take pride in knowing there is a world of people out here that do and even if we are not there we support you from here. Good luck today. Praying for you guys.
Just keep strong, everything will be alright. Ryan needs you guys to stay strong for him because without you guys knowing it, you are his strength. He counts on you everyday and yes people will stare but like you said that is human nature and I am sure that you will find another surgeon and they will be amazing and do wonders for your family and for Ryan. Just keep your head held high. I know it is tough right now but just know that you have a million people following you and giving your strength from close or even from a distance.
Ryan is so lucky to have amazing parents like you. Your strength shown in these posts never cease to amaze me. Prayers coming your way as always.
The strength of the Diviney family is amazing. In my thoughts and prayers as always.