You must know, I love to read your comments and emails. Honestly, I bet most people don’t understand how much it means to me. There are many who are better at expressing my feelings — in their comments — than I can. I’ll write a post then read the associated comments and think, “Yes! That what I meant to say. Thank you for clarifying my ramblings.” One person in particular (who will be identified simply as Paula) does this quite well.
Still, (almost) every comment makes what I write exponentially better or encourages me to stay the course. Last week I received an email from a follower, Jacquelyn Cowley (name used by her permission). I thought it might add perspective on what my family goes through… everyday. She spoke of her ability to understand my suffering because of her own similar experience. For her it didn’t last well over 5 years as with my family, but it hurts just as much. I also know that you, as a supporter of Ryan, must have gone through some life-shattering turmoil yourself or are innately empathetic; enough so that you can feel others pain.
For those who fit this description, I suppose it never stops hurting. Who really cares what brought us to this point?
Thank you for hurting… right along with me.
Here is what she wrote:
I’m reaching out to you because I know your grief. I have followed this blog [RyansRally.org] for well over a year now. The pain and sadness used to shake me… I couldn’t imagine the pain you felt. What a huge responsibility to forever be indebted to the ones you love… for a reason that was out of your control. The wave of emotions through pain, sadness, anger, then back around again.
I would read people’s comments and how sweet and kind they were to someone they barely met… then there were those uneducated fools who have to troll the internet looking to stir the pot. I actually donated to the Amazon Gift Registry because I thought “every little bit helps… I’m sure he could use a new pair of pajamas”.
Little did I know that just a few short months following…. my family would be right in your shoes.
My sister [Michelle] suffered a brain aneurysm July 2, 2014; she was just 26 years old. Because she had age on her side, she survived the ruptured aneurysm and remained in a comatose-state for two months following. Everyday spent in the hospital with no response. She had seen the best-of-the-best in the neurosurgery department. [At] the beginning of August was finally considered “semi-comatose” and off to rehab.
After just a week in rehab she suffered another hemorrhage in her brain… ultimately the final “blow”. Again, she survived, but was given a 10% chance of waking-up and 0% of a meaningful recovery. She was [respiratory] vent dependent and unresponsive.
On October 14, 2014 my 26-year-old sister passed-away due to a brain injury that none of us had any idea about.
That’s when I joined the “What is God Bandwagon”. No “God” would do this to my sweet sister, No God would take away [your] son. This is not the cycle-of-life. No parent should have to take care of their child for their rest of their life… or in my parent’s case, no parent should have to bury their child.
I am not sharing this story to put my grief on you… because I sure as hell know the sadness that looms over you. But I wanted to share that through her entire journey with brain injury, I found myself referring back to your page. I shared it with my family, I read it at night when I was laying in bed.
We did two short weeks of hospice care at home with Michelle and I now know how trying the process of taking care of a loved-one really is. It’s something that no person should ever have to endure BUT we do it. We do it because our love for them outweighs the sleepless nights, the bathing, the changing of the pads, the turning to prevent bedsores, the medicine administrations, etc, etc, etc. It truly is a never-ending cycle and I commend you. To do this daily, all the while maintaining a blog to keep others informed of your daily struggle, is really a feat.
In closing this letter, I want you to know I am there with you. I understand the sadness… the constant fight with yourself about all that’s lost. Michelle never got to get married, have children, and watch them grow. I understand the anger because all of this was stolen in an INSTANT… just like that, they are gone. I understand the struggle… forcing yourself out of bed each day to take care of your son.
I see what this has done to my parents— that happiness that was drained from our life. As much “fun” that we could have on vacation, a holiday, etc. will still NEVER be as “fun” as it was. There is a piece that’s been stolen from our lives.
You are doing an excellent job… you really are. Taking care of Michelle for two weeks while I was 36-weeks pregnant was indescribable. You’ve done this for FIVE YEARS… 5 WHOLE YEARS and he’s still hanging strong. I know first-hand that nothing anyone can say will lift the burden or make you feel better. There are no words to reconcile or rationalize the dis-justice that these young souls have had done. Just keep up the good work, and know that there are others (us here in PA) who have walked in your shoes…
Even just for a short while.
Here’s the thing, it helps being reminded that I’m not the only person on this earth to hurt so deeply… to ache from exhaustion… to find a way to make it through one more day. Selfishly, I find your grief, despair, anger, struggles, and COURAGE as a way to cope.
Is that so wrong?
No. It’s not… because I hope you find the same resilience, love, and dedication in me. Well, at least for as long as I can hold out. Yes, you and I share a certain kinship that some will never understand (thankfully).
Have a problem, need to vent?
Go to sharemypain.org and do it
It’s the best place to receive feedback for any frustration, from your daily issues to even the most unusual events.
I had a great experience there, people are smart, nice and they respond quickly. They solved my problems immediately.
Hey hey hey, take a gander at what’ you’ve done
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I'm pretty much in love with those tights. I've just spent the past few days going over your entire blog and I think I've enjoyed every single outfit I've seen so far. Thank-you immensely for blogging!
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May 16, 2011 at 7:08 pmI bought my daughter a large Rose Quartz stone & she wears it on a long chain almost everyday. It has the Ohm symbol etched in the center & when I bought it the symbol was painted black but I scraped off the black paint, it looked too harsh for such a pretty stone.NO CONTROL ISSUES HERE!!!!Beautiful stuff Dixie! Reply
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I’m out of league here. Too much brain power on display!
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How perfect that this post was on April 1st. That is the day that my amazing husband of 37 years passed away of cancer. I had taken care of him for 13 months. And while not any where close to the same level of care that you provide, I couldn’t bring myself to let anyone else give him his tube feedings or his meds because no one could or would take care of him the way that I did. Watching him go from a 257 lb “all man” that worked 18 hours a day, 7 days a week, his whole life, for us, h?is family, to a 126 lbs, totally dependent shell of who he had been was the worst pain I had ever felt. But….which is worse, then or now!
Karyn Mandracchia Ahern via Facebook says
Praying for your family daily
Ann H Tearle says
SHSP NGA. Not a day passes without me thinking of you, Ryan, Sue and Kari, and praying for you all. That is just the way it is. Team Diviney, you are my family too, even though we have never met. Oh, Ken, the words have all been said and I couldn’t say them better than have been expressed by all on this site. Just know, you all are dearly loved and cherished and my prayers will continue until forever.
Michele Davidson says
Dear Ken, Sue & Kari,
It has been a while since I checked in, but I think of you often and sometimes hear the projects next door and now the dogs running in the hopefully coming spring season! I cannot imagine the depth of grief you experience but truly admire your unconditional love, unselfishness, and your 24 devotion to ensure Ryan receives the best best care possible. I sometimes see Sue drive by when I have Grant outside and while she ALWAYS has a smile and a wave, I sometimes wonder if she feels a pang of sorrow that Grant has the abilities he has despite his many challenges while Ryan is unable to express his appreciation for all you do to make his life the best it can be right now at this time. Life is not always fair, and you know that better than anyone. We try to face our challenges as best we can and make the best of what the cards deal. Grant has developed two seizure disorders and been diagnosed as being legally blind this past year, but as you know, love can conquer all. I was diagnosed with ovarian cancer and am battling this while getting chemo, but with tragedies sometimes (in our case) have come the unexpected blessings… like remembering how much we love our kids, seeing strangers reach out and care, a phone call to remind you someone is thinking of you, or a note or package arriving from someone to ease some of the burden that daily life can bring. Please know our family continues to hold you in our thoughts and prayers, you are thought of often and while your journey seems lonely, there are many many people who care about your family, and Ryan! While life sometimes seems so unfair, I do believe in miracles and hope and pray one comes to Ryan! I am home and on leave, so if you ever need a shoulder or some company, let me know…I’m right next door!!
Great story by Jacquelyn. Glad I logged in today to read it. Have a good day as we countdown the days where it gets warmer and soon you and Ryan can enjoy the outdoors on the patio.
Hi Ken, one of the deepest truths I’ve learned since becoming a part of Team Diviney is how much we need each other. We cannot control the evil that insidiously roams our world, but we can control with whom we associate, so like spokes on a wheel many of us rotate with you and your family at the center. You write from the heart and enlighten and teach, and we listen and learn.
I often wonder how many readers are silently relating to the pain and suffering you endure. A great many, I imagine. They keep returning to hear the thoughts of a man who, more than most, can empathize, sympathize and understand. For this reason they don’t think twice about sharing your pain.You and your family are thought about by hundreds (probably more like thousands) of people every day. It may not lessen your pain to know this, but it might, albeit slightly, lessen the sense of loneliness and isolation that can darken the soul.
It is past five years and we’re still on the journey, still reading whatever you offer and still holding on. The lifeline isn’t straight, it’s in the shape of a circle and you’re in the middle of it. When the waves of heartache, exhaustion and hopelessness set in, remember we are surrounding you. We are like emotional oxygen to each other and we have to stick together so we don’t drown in a tidal wave of despair. We need hope, encouragement, support and strength. We need each other
Sending you my love, prayers, thoughts of springtime, and, always hope.
Always holding all of you in love and gentleness. Together we can support and uplift one another. While I do not know your specific pain, I know grief and loss. Ryan is special to us all and you are someone we can all look up to….peace to you this day Ken.
Always thinking of your family. God bless you on Easter and ease your day.
Natalie Waggener Sawyer via Facebook says
Hoping and praying that you know you are not alone ever
Survivors! That’s us! Some of us have survived greater difficulties than others, but never-the-less, we are all survivors here. We have this in common and can relate in this way. Survivors–and stronger because we survived!
Stay strong–our mantra, if you will. We must stay strong, because NOW we know! We know that in order to survive “what’s-about-to-happen-next,” we must Stay Strong–physically, mentally and spiritually. And, Ken, whether you realize it or not, you may not be religious, but you are spiritually strong. How else do you think you could survive? I feel it whenever I am near you and when I read your writings. I sense that Ryan knows who I am (call me crazy, but, hey, we all had lessons back in the ’60’s, don’tcha know)! I am sure that you are extremely sensitive, too, as is Sue and quite likely Kari. It is developed over time in a situation such as Ryan’s. This is the reason the parents and family of Terri Shaivo know in their heart of hearts that their daughter was murdered by starvation. I followed Terri’s parents for a long time and they knew there was more to their daughter than others could sense. There us much to be learned about intuition and sensitivity.
Thank you for sharing the story and the comments.
STAY STRONG, Divineys and Team Diviney. We are in this together!
Happy Easter! <3
Schiavo, for the record.
Vanessa L. Richardson says
Good evening your entire family: I have enjoyed reading these posts so much in the past, and I am catching up after weeks of missing them. Most of us have not yet experienced anything quite like what you are going through, but many of us have watched friends and loved ones suffer without a clue as to how to ease the pain and let them know that we care, and that we are there for them. But somehow, as we pour out our hearts, I believe that the Lord always tells us exactly what to do, and He leads us to do the very thing that our families need most. From what I can determine, Ryan needs you exactly the way you are caring for him. You are his eyes, his hands, his legs, his ears, and his entire body. Ryan lives through you and your family and daughter. There is no way in the world that Ryan would have survived this long without the love you and your family and other caregivers are pouring into him. I thank God for you, and I most assuredly believe that Ryan feels that love everyday. What an amazing demonstration of love and strength. You all inspire me every time you share updates, pictures, etc., and I am praying for your strength to remain vigilant and care for your son like no one else can. Have a blessed Resurrection Sunday
Lisa Svendsen says
The only thing that helps me get through your suffering is knowing without a doubt how much Ryan loves you, and how amazingly proud he is to have you as a father. Still here. Still praying. Always
Nadine Blaschak-Brown via Facebook says
I’m pleased for you that you have so many people here who do care for you all the time and that their efforts are not in vain…they genuinely do help you. I’m the first to admit I will never be able to understand or begin to articulate what you go through… yet, I believe I relate to your suffering through my own personal pain. And I possess compassion and empathy. I, too, often find the words of other’s best express my grief.
Recently, while watching a BBC series on Netflix, a character said something that resonated with me. It also reminded me of you. It went something like this…
“People say they understand your pain. That’s impossible. No one has a clue about grief. Not real grief.
I used to assume grief was something inside that you could fight and vanquish, but it’s not. It’s an external thing, like a shadow you can’t escape. You just have to live with it. And it doesn’t grow any smaller.
You just can’t accept that it’s there.
You kind of grip onto it after a while.
My life got stolen that day. The best part of me got killed.”
For me, that’s what I imagine consumes you. And I’m so very sorry.
Liza Krause via Facebook says
Always praying for you…
Jenny Duffy says
The sun is shining today in Virginia and soon it will be warmer. Do you have an opportunity to take Ryan outside when the weather permits? If so, hopefully you will be able to very soon.
Sending positive energy to you and yours.
Ryan's Rally LLC says
I do. I get him outside almost daily once the temperature rises above 65 degrees.
And, a la the 2 leads in Brokeback Mountain, We DONT know how to ‘quit you,’ Divneys, but rest assured, we WONT!
One of my favorite movies !!! and such a great line ~ I am afraid you all are stuck with us, good, bad, and ugly. I think about ya’ll all the time, pray for ya’ll too. Hang in there, even though I have my own crosses to bear, still ya’ll are always in the back of my mind and always in my heart.
I am reminded again of a powerful sermon the now retired Pastor of my former church once preached: We never know what burdens people are carrying. I don’t remember what scriptural passage initiated the sermon. But it is so true. Only God knows what burdens some people are carrying. And, as we begin the holiest season of the year in the Christian churches, I have faith that God is carrying these burdens with us. Jesus carried these burdens Himself as did His Mother.
I don’t know why these things happen. Why DO bad things happen to good people and vice versa? I do have faith that, in the end, God WILL “set all things right in heaven and in earth.” And then, let’s hope, the mystery behind all this human suffering will be explained to us. Certainly, your blog has brought together thousands of people who don’t know each other, don’t know you, Ryan & your family personally. But WE CARE. If that eases your burden slightly knowing how MUCH we care, how many prayers ascend daily, then we have done our “job.”
Tim & I cared for my aging mother for almost 7 1/2 years after my dad’s sudden passing. I wish, sometimes, there had been an Internet & blogs back then. Just to share one’s pain and frustrations–as well as the joys & surprises is in itself “therapeutic.Mom had a penchant for blurting out the darndest things during dinner, e.g. “All you homosexuals are alike!” which blew us out of the water–we were never sure how much mom understood. To have other people laugh & cry WITH you is therapeutic. Mom hid her increasing mental failings with great charm & an infectious grin. We will always be grateful to our Alzheimers Support Group for their sharing, caring & support.
You have US to cry and smile with you. And, a la the 2 leads in Brokeback Mountain, We DONT know how to ‘quit you,’ Divneys, but rest assured, we WONT!
God bless & Happy Easter (though if we get snow showers Saturday into Sunday, Merry Christmas may be more apt!) PK Miller & Tim Montgomery
Amanda H. says
This is exactly how I feel too! Even though I have never met you or your family, my support is always here for you!
That shared pain and relentless unconditional love that many of us experience for our children, whatever challenges or special needs they may have, are what keep drawing us back to you and your family, Ken. We get it. I get it. And we can never let go of you Divineys, no more than we could ever let go of our own children. Please lean on us in any way you can — we need to draw the strength and encouragement to carry on from one another. Thanks for getting it and being there for my family too <3
Karen T. says
Love you Divineys – still here, still praying, not going anywhere
Rhonda Morin says
Through these types of writings we see a glimpse and can imagine the heart wrenching pain. Sometimes I even feel it if only until something in my reality catches my attention and later I realize I don’t really know at all. My hopes and wishes are for you both.
Gail Doyle says
Thoughts and prayers for this lady and her family. Like you said , Ken, thankfully most of us can not even imagine what you all go through,but we are there for you always, trying to lift your spirits or help however we can.
May you stay strong,mentally and physically .”You Got This” and “We’ve Got You” Ken and Ryan and family. Love to all t