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.
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!