I hate when it happens. It happens all the time. It never get an easier.
A week never passes without it. It’s always a tragedy how these people find Ryan’s website. My heart breaks every time.
You see, I know what’s happening too. A loved one (sadly, far too often someone’s child) has just suffered traumatic brain injury (TBI). Those who are now suddenly transformed into ‘caregivers” are desperate for information. Hell, I was no different early on in Ryan’s injury. Information on brain injury is so obscure and scattered. This makes perfect sense to me because the brain in not well understood and the people in the midst of dealing with it just don’t have the time to centralize it. I have it as one of my goals to do just this.
Because of the popularity of this website these people find their way here. Inevitably, an email soon follows. You will know some of these people because you see them on the news. Congress members shot in the head… A dad attending a ballgame that is savagely beaten outside the stadium by opposing fans… young children who happen to be underneath an object that falls down on them. Still, most you never do hear about. Those who are in car crashes. Those who fall and bump their heads. Those who drank too much.
Not only do I feel it is my obligation, but I get a certain sense of gratification in being able to help. I wish someone like me had been around when Ryan faced trial after trial, some life-threatening. If I had just known what I know now.
{via breakingmuscle.com}
The questions are often along the same lines. For these, I have little difficulty addressing. It’s when it gets into the emotional turmoil that I struggle the most. I want to hug them with my words. But, how can my words tell them “it’ll all be okay” when I know differently? I’d just be a big, fat liar if I told them “everything happens for a reason”! That, my friends, is B.S. No, it is not true that God (for those who believe) never gives more than we can handle. He doesn’t select those people who have the strength to transcend it. I know! Otherwise, Ryan and I would never be in this situation.
I suppose the one sentiment I appreciate most when people write to me is that they immediately connect emotionally. They thank me for writing, so candidly, about my experiences. They sincerely assure me that they can relate. It’s true, too. People who find themselves in our situation share a special kinship. A bond borne of tragedy, desperation, despair, and unrelenting hope.
I’d like to share my most recent email (names and identifying information masked/changed), to which I have yet to respond. Well, other than to tell this person I will respond. It’s not that I’m putting her off. I just want to make damned sure I get my response right. So, as you read it perhaps you might imagine how you would reply.
Hello, My name is [Shelly]. My son [Jack] was in a horrible car accident [a couple of years ago]. He was [a teenager] at the time and in High School. A commercial van lost control and went over the median head on into his vehicle.
He has a severe TBI. He is minimally conscious. [Jack] has a trach and G-tube. I just started feeding him pureed food by mouth. I am also trying to get his trach taken out. The ENT will not do the surgery until his swallow is stronger. The hospital damaged his trachea so he need to have surgery to have his trachea repaired.
I just started reading about Ryan. I’m so sorry. This is such a terrible tragedy. I can relate to you. I am an business person and I closed my business to take care of Jack full time. There is not too many people I feel understand what it is like. Your page has helped me. Thank you for writing about your experiences.
When I read your post, I cry. You are writing exactly what I am feeling. I will never give up on my son.
I try everything and am constantly trying to find new research that may help him. We live in [the southern USA] and it is so hard to find any doctors here that really specialize in TBI’s. I give [Jack] 10 Grams of fish oil daily. How much do you give Ryan? Is there a certain type you use? Do you feel the oxygen treatments help? I think I am going to start it with [Jack]. He has seizures so at first I was advised against it but I have heard stories of it helping other.
I’m attaching a picture of [Jack] (not shown). As you can see he has extremely bad tone. We tried the baclofen pump but he had to remove it because of an infection. He takes 30mg of baclofen 3x’s daily but it doesn’t seem to help much. We bought him a RT300 bike for legs and arms. That does seem to help some. Do you have any ideas of anything else to try for his tone? I know how busy you are and I appreciate you taking the time to read my message.
You said about a Q and A page. I think that is an awesome idea! It would help so many. Again thank you for your time and writing about Ryan. I always want to write about everything that [Jack] is going through and all of our experiences. I am great with numbers but terrible at writing. Every time I start to write I end up deleting. You are doing something great to keep Ryan’s story alive.
I admire you.
To me, this is the most important way I can help. I just want to get it right. I must get it right!
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Ken, I am sorry it has taken a while to read and respond to this post. From my past experiences and trying to help people with a spinal cord injury I sent my schedule of the day and how everything was done. I know you have it on your computer, what to check when and how you do certain things. That info is invaluable to someone who has NO idea where to turn.
Every human is different so her son may respond differently to meds, etc. but at least knowing how you set Ryan up on this equipment or that equipment may help her see progress in his healing.
I know that I don’t know a tenth of what you know because you are doing it every single day and there is far more done that we have no idea, simply to give Ryan some dignity. But for another person who is doing this every single day those things are important to know (what to feed him, how to change the cath, how to deal with bowel movements, what to look for in temperature changes,….). You do provide a very valuable service not only to your son but also to humankind in helping us understand and showing others the successes and failures you have had.
Ken, what you do each day for Ryan, your family, and all who come here is remarkable. The world is a much better and informed place because of you. Please make time to take care of you.
You are touching countless lives in so many positive ways through this blog. You are such a blessing to all of us as well as to your family, Ken! Thanks, hugs and continued prayers for all of you <3
Love this fam and pray daily for their strength and courage and renewed energy each day to carry on:)
This made me cry! I am not in your position or her’s with her son, or any other parent dealing with such horrific tragedy with your child – BUT, I symnpathize, have compassion, and wish my best prayers on to ALL of you. Your posts are inspiring, and I follow some other families going through their own horros of injury or illness (RTG – Tripp Halstead, etc). It has truly inspired me to pay more attention, help where I can, and be a better person to everyone…. be mindful of the kinds of things others may deal with everyday, through no fault of their own – and I teach my 15 year old the same. Thank you for being the words and the voice that many need to hear, to make this world more loving and kind to one another, and to recognize the different facets of ANY kind of debilitating injury or illness among others. Bless you!!
Hi Ken and to the mom who wrote to you,
I didn’t read all the responses above so I may be duplicating some info. I also came to your website Ken because of research in TBI. What I have learned through my daughter’s injury that hyperbaric oxygen has seemed to help some, I know of two TBI patients it has helped. For my daughter it didn’t help and I know of three other TBI patients where it didn’t make a difference. As for tone, Botox has helped my daughter the most along with physical therapy. Recently spent $7800 on one perispinal enbrel injection and it didn’t help even a tiny bit. I hope this info helps a little, I also keep researching for new hope. Thanks for all your posts Ken, it makes a difference.
Vivian
Ken, I see no reason why you couldn’t share information that you come across with this mom and anyone who asks for info about TBI. You have brought Ryan a long, long way with therapy. I don’t think anyone would file a lawsuit against you or us for sharing information. I am famous (or is that infamous) for sharing information about disease. My husband of almost 55 years jokingly, but lovingly, calls me Dr. No Jo.
Thinking of you and hoping Ryan is coming along well after the surgery. Love and prayers.
I came upon your website searching for information about brain injuries because my son had suffered a severe TBI resulting from a snowboarding accident. I remember reading Ryan’s story all through the night and into the early hours of the morning. I too felt a connection as no one quite understands the emotional roller coaster caregivers and families face unless they have also been there. I have since followed Ryan’s story and every post, praying always for your son as well as my own, oftentimes finding comfort just in the knowledge that we are not alone in our journey. Thank you and God Bless.
Ahhhh……such a bittersweet entry. I cannot place myself in your shoes, or in Ryan’s or in the shoes of the family you write about,, because I simply cannot comprehend that pain and suffering. But I can understand the need to want to help to offer support and advice. And to be truthful. The truth can be painful, but it remains the truth. It may be beyond what we may be willing to accept, or up to dealing with, or praying or wishing for. You are on a road very few of us, even with all of our personal heart ache, sorrow, pain, loss, can truly understand. Your heart, resilience, and sheer will power are greater than you know. You are an inspiration to many of us who cry every time we read your posts and then hug our loved ones a little closer. Wish I could hug you and your family. With love
Bless you Ken, You are helping so many people with your knowledge. Most of all our Ryan, Can’t help with info ,but will always be here in spirit supporting you all. Hugs to you and Ryan and of course Sue and Kari
Bless you and yours, sending love, prayers and plenty of hugs!!
I’m so glad that you are here for others and at the same time sad that you have had to experience this to have the knowledge to help others. Hugs for strength!!
The bigger tragedy would be to have all this knowledge and not being able to put it to use to help those lost souls just encountering similar experiences. I am sure you are a huge comfort to many who need it most.
Ken, thank you for reaching out through your pain to others. I don’t have the answers. I don’t have the questions–theyre harder. I believe God is with you, Ryan & your family in this difficult time. We all struggle through great odds, some greater than others. We do the best we can, muddle through somehow. I always think of my retired Pastor’s sermon one time, “We never know what burdens people are carrying. God be with you and keep you in his care.
Ken, you are getting it RIGHT. Just doing what you are doing, living your life, this life – not the one you chose, not the one you wanted, but the life you have, you are getting it RIGHT. If someone chooses to believe there is a reason for everything, maybe that reason is so YOU can help others, so that Ryan can be the poster child for how to care for a brain injured person. Not that I believe in a reason for everything, but those are my thoughts.
*unoticed! Dang spell check
I admire you for so many different reasons,but the first and I believe the most important is for never giving up on Ryan, no matter how difficult or confusing things get, you never leave him nor stop believing in him! I have been following Ryan’s journey since I first heard about him! Although, I do not have any idea what you may be going through, I know how many people your words and story helps! Ryan and the whole family is in my prayers several times a day! I don’t know anyone personally with any TBI, but I am a very proud RTGA supporter and your just amazing with your knowledge, words, advice and support and I just wanted to let you know that it does NOT go noticed! God bless you and I pray for strength, support, knowledge, and understanding for you as you continue to love and care for Ryan and everyone else you reach out to to help and support! <3
You are doing the right thing.. You have touched so many of us.. I myself have a little boy.. He’s fine… But because of you and your family putting Ryan’s story out there.. I couldn’t help getting this feeling that it could happen to anyone of our children. You brought a healthy beautiful boy into the world and his life was taken away.. Please stay strong.. Not only is Ryan depending on you.. But u have thousands more people who u are helping as well.. God bless u all.. I pray for u and your family.
If we had a penny for all the research articles on TBI.that you (and we) have read in the past four-and-a-half years, Ryan’s trust fund would be filled to overflowing ten-fold!
Mr. Diviney…you’re an amazing man and father. Thoughts and prayers, as always, for Ryan and the family. Stay strong!
Agreed!!!!