Ben’s Story

Site created on August 4, 2021

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Newest Update

Journal entry by Christine Dewberry

Hi everyone! It's been way too long since I sat down to talk to you all but there just wasn't enough wood around for me to knock on to feel like I could take a chance and write. I'm so happy to tell you all that isn't the case anymore! Ben has made leaps and bounds since the disastrous holiday season that left him, and the rest of us, just about at our limit of what we thought we could take. It's absolutely amazing to me how far he's come in these last 2 months. I just counted and recounted because I can't believe it's only been just over 2 months since he got out of CCH the last time. For the better part of January, Ben was really just surviving the after effects of those surgeries. Unlike when he was released from Bryn Mawr in November, he came home barely able to even walk and every single thing in his world was so much more difficult than before. I think it took a while for all of us to settle back in and understand just how much his body had gone through while he was back in the hospital. He pushed hard though, not allowing himself to be overcome by the setbacks. I'm sure that doesn't surprise you guys either, does it? Ben definitely has proverbial nerves of steel that allow him to feel the frustrations when they hit but then put them away and get back to fighting to get his life back again. That drive continues to serve him well. He's put up with 2 months of more medication than you can imagine (taken at different times of the day because why would it be easy?), significant wound dressing changes twice a day, the worry of some of the wounds getting worse before they got better, so many doctors' and specialists' appointments week after week, me giving him the antibiotics through his PICC line every single evening before bed, restarting PT/OT and so much more. It was a LONG 2 months, that's for sure, but HE DID IT!! The first month was just managing the fallout from December but this last month was all about recovery. I've been so excited to sit and tell you all of our great news! 


I'm sure it will blow your minds to hear that Ben was finally able to move back into his college house on March 6!! It was a surreal day for sure. It had been just over 7 months since he had lived on his own so we know how anxious he was to get his independence back! He still has a lot of recovering to do but he can do that safely on his own now from his house a few miles away, feeling like a 22 year old again. Officially, on the record, I will say that we are honestly beyond thrilled for him. It's what we all worked really hard for these past months and it felt great to be able to give him that freedom back. Unofficially, off the record, 😭😭😭! I don't know how to really put our feelings into words. I guess even though the writing was on the wall for a week or two before his great escape 😉, we were still in shock when he just didn't come home with us last Sunday evening. Our worlds were turned upside down on August 3rd but we each settled into our roles long ago. Then, in what seemed like 100 years and also just the blink of an eye, our worlds turned upside down again last week. Well, maybe they flipped back to right side up again but we can't even tell anymore. LOL Either way, he was just gone. I won't even try to describe our feelings. It's overwhelming and impossible to put into words but I don't underestimate you. I very much remember how supportive and understanding you all are so I'm sure you can imagine the flood of different emotions that comes with Ben's recovery and freedom. Mostly though, we are just incredibly happy for him. Though we were all affected emotionally, the real crosses have been his to bear. At times it's been manageable for him and at times it's been brutal on him but he fought his way over every hurdle. We knew he needed to work his way out of here and back into his own world in order to feel like himself again. Even though we worry and it was pretty darn hard to let him go, we absolutely know how much he needed his independence again. I still wake up a bit shocked that I'm not needed for daily meals and meds and wound care and rides anymore but I know that will fade in time. What I hope will be left is just the memory of the hardest year of all of our lives. It has tested all of us on levels that I don't have words for but our faith and strength as a family (with the support of so many of course) carried us through. There are plenty of blessings to focus on, many lessons that were learned and lots personal strengths that were discovered. For all of that, I'm grateful. 

Okay, so Ben's progress is real...
His medications have been cut in half now and though he's stuck on some long term, some maybe even for life, he'll be off several more in the coming months. His surgical wounds are healed and miraculously, you won't even find a bandaid on him. He could definitely win any scar contest but he's fine with it because they all tell his story of survival. His drop foot is thankfully more than 50% back and he doesn't even need his brace anymore. In fact, two weekends ago, Ben walked a 5k with several of us in the family in support of a good friend and his family. I'll never understand how in two months, Ben went from barely being able to walk to walking a 5k. It's mind blowing!!! He still battles the neuropathy in his hands but it's getting better as time heals the nerves. The next months will be critical for nerve regeneration as the one year mark from when the neuropathy began approaches. We've been told that most of the nerve recovery will happen within the first year so fingers crossed that he continues to make strides. His overall strength is improving at a staggering rate too! It's measurable at PT and OT so the numbers tell us he's getting stronger but we can actually see it too in daily life. He even went to the gym once or twice last week because finally, the LONG 8 WEEKS of the PICC line antibiotic infusions are OVER and they've cleared him for workouts. He is also more than 3/4 of the way to his weight goal which makes us all happy! He looks like himself again which we know helps a lot. The drastic weight loss from his long ICU stay was tough on him but he is healthy again, looks great and feels much more like himself than he did when he got home in November. I know the constant doctor appts have been hard on him but even that has changed recently. One or two docs have now said "Call me if you need me!" and the others are putting many months between appointments now. That's when it really sets in for us that he's doing so well. And last but definitely not least, he is DRIVING again!! The docs cleared us to take him out and test him and we were actually amazed at how well he did from the first moments back behind the wheel. Of course we had to make him ease back into it for safety's sake so for almost 3 weeks, he only drove with us so we could be sure his reaction times, control, etc. was where it needed to be. It all checked out and he is as good as the rest of us so he's driving on his own again. Unreal!

Along with everything else comes great news on Ben's buddy, Ryan. He's also doing very well, and although brain injuries are harder to measure definitively, Ben and friends say he's closer than ever to getting back to himself too. He also still has a long road of recovery ahead but I have no doubt he'll get there. He's another determined young man. Their roads are long and different and I know that realistically, both of them are changed forever in some ways, but they are strong and smart and they will keep working toward putting this behind them. Both Ben and Ryan are aiming to return to classes at UD next fall but that isn't set in stone for either of them yet. Ryan is still waiting on his driving license to be reinstated and isn't living back at the house quite yet (he did stay one night this weekend - yay!) but he has been back working at Klondike Kate's for a couple of months now. He started with bussing, moved on to expo and now he's even back to bartending! I imagine he's not far from clearing those other hurdles because he just doesn't give up either. Though Ben's hand strength needs a little more time before he can go back to working at Kate's as a server, I think you'll be able to catch both boys working there together again soon enough. Let me warn you, it's an astounding feeling to see them both in one room so be prepared. ❤️

Well, I've written a book...like the good ol' months I suppose. 😬😂 Steve and I wish we could have called each of you personally because that's how much your support has meant to us. As we are put this ordeal further and further behind us with each passing month, we hope you know that you are always close in thought. I don't know if there will be anything newsworthy to post going forward (I'm pretty sure Ben stuffed most of it into these past 2 months), but you all have my cell. We have been forced back into "normalcy" so we have free time again for lunches and dinners now. Shoot me a note anytime! 

With much, much love,

Christine and Steve XOXO

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