I stood in the doorway between Ryan’s room and what is now his therapy area. It’s the middle of the night. The house, and every human and animal in it, is asleep. Well, except for me. There will be no sleep for me tonight. I’m pulling a “all-nighter”. It’s my second one this week.
As a full-time caregiver, it comes with the territory.
Shadows of the Past
The house is quiet (save the continuous hum of various medical devices) and dark. I have one leg on each side of the doorway threshold with my head resting against the door frame. I look back to Ryan. He is sleeping… as far as I can tell, that is. Sue is cuddled up next to him in his bed. Her face is pressed against his cheek; as she typically does when there is no nurse. The cat is snuggled into the crook of his other arm.
If for any other reason, this would be worthy of a picture for the ole’ scrapbook.
Panorama of Ryan’s Room.
I suddenly remember back to the time when Ryan was in high school. He wanted this area as his bedroom but I always felt better having him upstairs. At that time it was our storage room in the back corner of the basement. Really, it was nothing more than the area where we stored boxes of items that we probably never would get back to opening for decades. More than a few of those cardboard containers moved with us twice without every being opened. Once nicely stacked and organized it had become nothing short of a total mess as the years went on.
I realized Ryan wouldn’t recognize the space any longer. It had changed so much, yes, but I imagine he would wonder why we decorated a hospital room to suit his tastes. How would he ever make the connection that this was our previous basement storage area?
Ryan works hard to keep his muscles in top condition in the space that once had foosball and billiards.
I looked out of his room to another space he would not recognize any longer. The area that once was about fun and entertainment. The foosball table is long gone; replace with a hyperbaric oxygen chamber (that he almost certainly has no idea what it is). The burgundy-felted billiards table has vanished. Gone too are the bookcases that shelved all of his and Kari’s awards and trophies. The huge leather sectional sofa that he spent so many hours on watching sports and hanging out with friends is now relocated. These familiar items are replaced by an assortment of therapy equipment, medical devices, and related supplies.
Nothing is as he would remember it.
He wouldn’t even know he was in our house. To be fair, it doesn’t even look like a person’s house — let alone ours — so I wouldn’t blame him one iota. So much has changed; both inside and outside these walls. Nothing is the same: People. Life. Time. Me. Ryan.
Yes, especially Ryan.
Hope
So often, in the still of the night, I must remind myself that a new day will wash away the darkness and give another chance at… what? Normalcy? Yes, normalcy seems to fit. It’s one more shot to find our way back to what is familiar… even if it doesn’t look quite the same.
It is hope.
What would I be without this? Where would I be? To me, hope is a flaxen-haired angel that unselfishly gives to me something I simply could not live without. To not have hope it would probably just about kill me. Sometimes… many times… hope is all I have. Hope compels me to never give up. I never will…
until all hope is lost.
You should know by now — at least I think you do — that I am a realist. I know what I’m up against. I get it. There’s no sense or value in fooling myself. I’m scared by it, but not at all intimidated to carry on. Neither are you. Let’s face it, the odds are clearly not stacked in our favor.
Still, you share my hope. You are relentless in your compassion, support, and generosity. You care deeply for my son by continuing to give his life meaning. His voice and words have fallen silent by senseless brutality by violent thugs, but you allow him to speak through you. You see, you do this every time you share his story or think of him.
Most of all, you refuse to allow others to forget.
Life Lesson
As much as I hate it to be my only son as the reason, his life teaches us something greater than merely his circumstances. I thank you for your profound wisdom in recognizing this… and then taking action to do something about it. To willingly feel the sorrow — when the easy thing would be to turn away from the pain — is truly emotionally pure.
Do you even realize just how special you are? I’m humbled that you are known collectively as Team Diviney! You bring such honor to my family’s name through your association.
Now, before you start, I’m going to gently cut you off. I’m 100% certain most of you were already thinking of commenting something to the effect of “No Ken, it is you who is special. We are only glad that you allow us into your life and include us in caring for your beautiful son”.
Am I right? (No need to answer… I know I am).
Well, taking care of a one’s child — as I do with Ryan — is one thing. Taking care of another’s child — as you do with Ryan — is entirely different. World’s apart! You taught me how to love and care for others for compassion’s sake; something that never grabbed my heart before you offered it to me and my family. Quite frankly, I was shocked by it! I’m embarrassed to tell you that I even became suspicious. I never had the insight to grasp the significance of it. I’m not saying I was mean or a dick, because I wasn’t. What I am saying is that you where on an entirely different level. A higher and more sophisticated stratum of the human element.
Sure-as-shootin’, I’m a better person because of you. Damn straight, I am! I’m also filled with deep remorse that I was too self-absorbed to understand what seems to come naturally to you. Ah, yes, ignorance is most certainly bliss. Some days I literally watch items fly off Ryan’s Wish List and it adds to my regret… because I now know better. I wish I had been even a sliver as you. Even though you repeatedly tell me that I owe you nothing, the truth is, I owe you everything.
I fear that, because of the circumstances, I have lost the opportunity to make it right or redeem myself. With such a debt how many lifetimes will it take until I can “pay it forward” and be as worthy as you?
It’s unimaginable how I could get to where you are.
In thought, Ken is sweating and tired from working with Ryan.
It might sometimes be best to learn a lesson the hard way. As I did. It certainly drove home the point, but I can also tell you that it can hurt like unholy hell for a long time afterwards. Still, it was well worth learning and I hope that someone takes my experience to heart to save them from being like my former self. It’s damned easy to be kind, generous, and loving to family…
But you, and people like you, are special souls to care for others like one of you own.
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It takes all sorts and flavors of people to wholly care for each other. Y’all are so lovely to allow people in 🙂
Hope, my friend is what we have .
Paying it forward doesn’t have to mean buying things or paying for something for someone else. When you share Ryan with us and write about how much care he requires, what those thugs have done to your life, etc., – I see that as a way to pay forward and teach those of us who have no clue what you and your family are going through. I read your blogs and it absolutely hurts my heart because of the mental, physical, financial turmoil you live every day. You tell it like it is and in a way that is easily understood, as much as anyone can understand that hasn’t gone through anything remotely similar. Perhaps you are paying it forward more than most.
Well said Sir. Well said
It’s because you make Ryan feel like our family through your raw, compelling writing. And we’re happy to help. And to keep hope alive.
You pay it forward every single day. Your demonstration of love and caring has helped many of us love and care for our families in a way we didn’t think was possible. Thank you.
Mr Diviney, your words are so raw ~~Thank you for sharing your emotions with us…God bless Ryan and your family <3
Hope through suffering–you are the poster man for Hope. Without hope, we are lost. Sharing the hope and the love.
We love you and your family, Ken! How could we not? You are right in saying that Ryan’s significance to us goes far above and beyond his circumstances. You are also wise to hold onto hope for new life — that is the message of Easter. And, yes, it’s humbling to accept the gift of grace, but it’s always free. We would give you more of ourselves if we could, but we also trust in God to meet all your family’s needs that we cannot. I pray for Him to sustain you through each day (and long night), and thank Him that He does. You’re pretty special to Him too, whether you realize it or not. Love you Divineys!!
We all love Ryan and your family Ken. We will never forget.
It takes a village to raise a child. Ryan’s village is larger than most but no less a village. Much love to you, Ryan, and family.
Sir I have watched you and your son from the other side of the window, putting my hands on the glass hoping you can see me. I live in your heart I hear your soul communicate with your son as if he is in a bad place but he’s not. he is with me working hard on restoring order to our civilazion. I cried the first time I saw the article in the washington post and im crying now and that lets me know that hes ok. Ive sent you a Wizard of Oz get well card. My angels have surrounded you past to presurve your future and it is with us. Please give my regards to Ryan. All Seeing Eye
Ken, Thank you for the beautiful post. Hope,prayers and love are always with Ryan and you all Never give up .We sure won’t Always here NGA
I cried as I read this. I can feel every feeling and emotion you had as you wrote this.Everyday I check to see an update you may have written. You are by far the most unselfish man i know. Your friendship , wisdom, guidence oh the list goes on…Is more to us than anything. We are thankful for people like you. That alone is a gift to us. This world can be so cruel and ut is wonderful to see people like u. Your so honest, open. Dedicated not only to Ryan and your family But to us as well and consistent.I wish I was there to help you and your wife. I would love to see you and your wife go on a vacation together or sit on the beach and enjoy the warm sand and the ocean waves. Thank you for being you.
Ken’s words are beautifully profound and totally hits home. Many of us on here are parents of children with extraordinary medical circumstances in some way or another. Myself included. Many of us on here are caregivers for our children as well. A position we never asked for — but are blessed to have in many ways. While we would never wish this life for our children…the lessons and inspiration it provides US, their parents, and all who care to be involved with us…is simply amazing. When a community gathers around your child and shows you that HE MATTERS to them — tears flow, and flow and the gratefulness in your heart is forever imprinted. Whether it is a local school group who works hard to create an event to raise $1,000 —- or if someone is blessed to be chosen by this amazing RTG community for what must feel like life-altering assistance that we pray to be chosen for — a beautiful imprint is left on our hearts forever. Thank you, Ken, for so eloquently stating what so many of us feel. I am praying for you…and Ryan…and your family. Blessings! ~ Kellie
God Bless <3
Im speechless ! God Bless You all!!!
Mr. Diviney, I have been following your posts only just recently and have a profound respect for the dedication u have to Ryan. I look at that picture of you sitting down after working with Ryan and wonder how u have become so well trained to care for Ryan as u do….it is ASTOUNDING! Before Ryan was injured, what was your profession…a Doctor, Physician’s Asst or Nurse…seriously. Everytime I read one of your posts, I ask the same question in my mind….How did you learn all of this. I took care of my terminally ill husband and I know we learn in general what to do wity help from nurses or doctor, BUT ler me tell you, NOTHING ON THE LEVEL OF WHAT U DO WITH RYAN. THANK YOU, for taking my question.
Wondering why the two boys that beat him are not spending the rest of their lives in prison? Just makes me sick. His dad is a hero.
Praying for Ryan
Praying
This is such a hard story to read. It makes you realize how violent our world is. When did we start living in this mess that makes things like this happen? I’m in such shock for the fact that the 2 boys that did this aren’t in jail forever. Drug dealers spend more time in jail & these heartless, idiotic boys got a slap on the wrist for ending a beautiful life. Such a shame! Praying for Ryan & his family.
I have been following Ryans story through his sister Kari for over a year now and I pray for him everyday!!
Prayers for you and Ryan. God Bless you both.
Prayers for Ryan and his family!!
My prayers to him and the family. Could barely read the story, as it so sickens heart that humankind is so cruel to its own!
I could NOT fathom if it were one of my children. I know faith in God is imperative in a situation such as this, BUT….. ! I am a believer in the Lord, its just hard to understand the why’s of it all. God bless ur family today and forever!!!!
Love in Christ;
Lisa D.
Taylors, SC
Hi Ken, I’m still wrapping my mind around the fact that Ryan was in the ICU due to a serious blood infection along with kidney stone problems, and the next thing I know he’s home and doing very well! His ability to fight off infection is remarkable!! Yet another (big) testament to the impact your therapies have had on Ryan’s strength and health.
I didn’t know your family at all until I met you after Ryan came home from the various rehab places. So I’m kind of ad-libbing here, but, weren’t you a coach for some of your kids’ teams? Did you participate in their various sports events starting when they were small? Did you help the teams with fundraising and various activities? I am guessing that you did. I wasn’t a part of those, because my kids weren’t in sports. But I always admired the parents who expended so much effort to make the sports programs happen for the kids.
I look at everything you did on behalf of the kids as being very generous and inspiring! You had that specific calling along with the necessary abilities. I certainly didn’t have your skill set and drive. That was something you in particular were equipped to do, and, just as important, you were willing to do it. This willingness to participate was needed for the happiness and success of many kids!! So don’t sell yourself short in the generosity and willingness to help other kids department. You have done that and then some!!
Your post today is deeply touching. Thank you for your honest and beautifully penned thoughts. They will stay with me for a long time. You’ve given us a lot to ponder about what matters in this life.
I remain still here, still praying and still keeping the faith for our boy. Sending love, hugs, good thoughts and fresh hope which, thank God, comes new every morning.
Paula
This Breaks my Heart!! Yet I see such Courage & Hope. God bless all of you!!
Ken,
Looking at your photo shows everything you and yours have gone through/are going through, I’m saying a prayer for you and your family, wish I could have known you in better times; but, as I like to say, the brain is amazing in the ways in can repair itself!
David Chagnon
Prayers continue for Ryan and for all of your family! It has been a privilege to be part of the RTG Army, and to give a little (and pray a lot) to change what we can, to help ease a burden for a while, or to give a little extra HOPE when someone needs it. Prayers, as always! <3 🙂
Prayers for Ryan and his family. May God place his hands over this great family and give them strength and healing. God is great!
God Bless you all!
Hi Ken,
After reading your message today, I am struggling to find the right words to reply. Instead, I would like to share with you a few of my favorite “HOPE” quotes:
“Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”
― Emily Dickinson
“It is often in the darkest
skies that we see the
brightest stars.”
― Richard Evans
We will always be here for you and your family.
We are Team Diviney
We will always have Hope
We are Diviney Strong
Love,
carla
Thanks for writing this Carla….words simply failed me today…just tears. BUT, hope, always, and love and prayers always, for Team Diviney
Prayers for Ryan and his family!! I am a 24/7 caregiver to a special needs child. It does get hard at times to not know what will come up next. With my son, we are on constant watch for seizures or many other health issues that creep up.
I admire your honesty, strength & tenacity. During this Easter season, I’m reminded of another Father who loved his “only begotten son.” His son paid the ultimate price so that we could learn the most important lesson…..just as we learn from Ryan & your unfaltering devotion to him. God bless.
You are such a special father to care for your son as you do.
We ALL have to have HOPE, Ken. We are all very much lost if we have no hope. You have shown us love and great will be your reward in heaven for the love you show on a daily basis for Ryan. May you be strengthened and comforted by the beauty and glory of Jesus’ Resurrection at this Easter time. In the end, Ryan will be restored to wholeness, you and your family will be reunited in the bliss of heaven and God will take care of those thugs. A Happy & Blessed Easter to you all from Tim Montgomery & myself.
God bless you and your family, so brutally honest it Made me cry. When u accept people’s blessings wether it be financial or prayer whatever it may be you are blessing them. 🙂
My prayers
Praying for peace in your heart.
Caring for each other, our own and others, to me, that’s what makes us human, not just people. You remind us what real purpose is. Thank you.
Without hope we are nothing.
Faith, hope and love, the three most important things in life we all need. Always thinking of you.
Sending Prayers To Ryan & His Family.
God Bless you all….
Prayers!
Ken, I really enjoyed reading today’s post. I just want to add one thing to your comment about how we allow Ryan to speak through Team Diviney. Yes, I understand and agree on how it’s accomplished by every time his story is shared, and at times when when we think of him… but for me it’s when I pray for him, and I pray for your family. In my experience, I believe God does answer prayers, and that’s why I don’t give up. God Bless you and your family this Easter Sunday.
You pay it forward everyone you type and keep us updated on Ryan. With the cards we get at Christmas. You are a very special soul and the love you give to Ryan is what I would Hope to give my child in a tragedy like this. I look forward to every update. I might not comment always but I read them all. You are an inspiration to many of us parents. When my son is being a hellion yes I called my child that I think of what you go through every day and put a smile on my face and think if Ken can handle what life has thrown him then surely I can manage an almost 13 year old who thinks he is king of the world and mouthy to no get out. Keep up the love for your family and I will keep raising my child to hopefully be a great man like you
Sending healing energies
Amazing dad!
Beautiful post, thank you Ken. xoxo
Prayers for all!
Ken, keep hope alive always!!!! Thanks for sharing your thoughts with us.
Saw an article today that someone posted about how PET scans can help to determine the consciousness level of someone in a vegetative state…made me think of this young man and his devoted father who cares for him.
Through the most brilliant sunshine and the darkest storm, there will always be hope.
Don’t ever forget, Ken… Hope.
Very Touching…and Inspirational….From Both You…and Team Deviney…Praying For Ryan…Family…and Normalcy In Good Time… 😉
Everyone needs HOPE to get through things, you are one wonderful, caring Father, I wish I had to chance to meet your wonderful family. I wish you all nothing but the best, God bless Ryan and your Family always and forever <3 <3 <3 <3 We are all part of TEAM DIVINEY !!!!
Everyone needs HOPE to get through things, you are one wonderful, caring Father, I wish I had to chance to meet your wonderful family. I wish you all nothing but the best, God bless Ryan and your Family always and forever <3 <3 <3 <3 We are all part of TEAM DIVINEY !!!!
Up late tonight and thinking of you there…Ken; you are an amazingly *gifted* writer. You repay with every word you write