Author: Karen

Today is an anniversary, albeit an awfully tragic one. I have been dreading this month for a while now. I wasn’t even sure if Bob would see March 2019 or his 33rd birthday. March has his birthday as well as mine and so many others who mean the world to us. March is also (ironically) Brain Injury Awareness month.

For those not familiar with the story, since I have not posted a single thing about it on social media, here is a quick recap:

One year ago today at approximately 4:30 pm, on an icy road, my husband lost control of our van and crashed into a tree. He was unrestrained and was partially ejected through the passenger side window. He sustained a traumatic brain injury called a “diffuse axonal injury” (DAI). It is a shearing injury where the connections in the axons of his brain get damaged and lose all of their critical connections. He was in the ICU for 8 days, in a coma for 19, and in an acute care hospital for about a month. He spent two more months at Magee Rehabilitation Hospital, where he received top notch care and I was spoiled by their staff. He was discharged home on June 20, 2018, three months to the day from his accident. Bob attended outpatient physical, occupational, and speech therapy after discharge and completed behind the wheel training to start driving in the beginning of February.

Here is an update since November:

It’s not easy. Different things trigger his anger and it’s hard to determine what those things are and when they will rear their ugly heads. My best way to describe him is Jekyll and Hyde. He also runs out of energy fairly quickly, and also can’t predict when he will run out. Bob’s analogy is a gas tank in a car that no longer has the gas gauge. You just don’t know when it will run out, and when it does, he is done. A nap will usually recharge his batteries. Interesting that his engraving to me on my wedding band says, “Girlie, you recharge my batteries”.

The house is always a mess (which could be the 3 year old and 1 year old as well) and Bob misplaces a great deal of items which is frustrating to both of us (lost his wallet at the hospital yesterday when I was in for a quick procedure).

But Bob also surprises me a great deal. He has stopped by work and dropped off iced teas and lunches and snacks. He has also stayed to eat lunch with my coworkers and me. He has fully embraced “Schroeder Medical Transport” and has been taking J and/or Michael to many doctor’s appointments so that I can be at work. J is up to 6 therapy sessions per week and we have been swapping those responsibilities. This house spent much of January and February bogged down with sicknesses. Bob desperately wants to go back to work full time, but his medical team has advised him that full time work isn’t wise at this point. He is going back for a speech re-evaluation next week because he knows that he isn’t yet the best that he can be cognitively.

Every day is a struggle, sometimes it’s a battle. We’re trying to heal a brain, heal a family, heal a marriage. Please keep us all in your prayers. We are all trying (sometimes each other’s patience) and learning how to deal with our “new normal” and that’s an awful phrase to hear because we understood our old normal and it worked.

And that building I kept seeing progress right by the Ben Franklin bridge? We passed it on the way to Philadelphia for a seventh grade field trip last week. It’s nearing completion on the outside, but still has a ways to go on the inside. Kinda like Bob.

Michael the fixer. He loves wearing goggles and using his tools.

Madelyn Grace is here! Brittany and Joeys princess was born February 4. Michael adores Maddie!

Much love and thanks for all of your support and love.

Karen xo

I just reread my post from almost two months ago. And I started to tear up a bit. Bob is getting better by little bits every day but it is so hard to see when you are right there in it.

It’s easier to recognize the improvements when you can distance yourself from the situation. Which is what most of you who see or talk to him on a weekly or monthly basis feel. “He seems great!” “Back to his old self!” Nope.

He’s getting there. It is slow progress. Just like the building that has been under construction next to the Ben Franklin Bridge.

It has come a long way since April when I started driving up here.

We have this saying framed in our kitchen.

And I need to live this saying. And be a better “cheerleader” for every little step of progress.

But my default setting is “critical”. And it isn’t a good look on me. Never has been. I’m critical of myself and my surroundings and also of Bob.

And it’s only because we are both so frustrated with the whole situation. His depression is worse than ever and we are continually seeking therapy and medication management as well as strategies to help him cope. His headaches have been crippling for the past week or two.

Bob and I both got a stomach bug at the beginning of October. His was so bad that one night (around 3 am) he passed out in the shower. Bob fell onto the floor and in the process hit his head on at least the bathroom door. I took him to the ER the next morning and he had a CT scan. It didn’t show any bleeding, but after a head injury, you are more likely to sustain another head injury or have seizures.

They also ran through the suicide question list and he was at risk based on his answers, but not so bad that they kept him. We’ve been close to calling the police for help for him a couple of times. The depression is that bad.

We are at Magee for another follow up with Dr. Kucer today. We have an independent medical exam with a neurologist next Tuesday and an appointment with his neurosurgeon, Dr. Stidd, next Thursday.

Michael’s birthday is next week – on Halloween. We’re having a “little” party for him (it got out of hand quickly).

And he starts his first day of big boy school. Tiny baby had surgery last week and I met his biological parents. We have three nights of therapy a week with the kids. So yep. I’m a little overwhelmed. But I’ve got my big girl pants on and we just keep swimming.

Thanks (as always) for your continued prayers and support.

They just do. They are a horrible horrible thing to experience. They can be caused from a stroke or blunt force trauma or by being shaken as a baby. Or a host of other things. And you can’t see this injury. And that sucks too.

I had a great day yesterday. Long, as usual, but good overall. Mikey “helped” me at school for a couple of hours and then we went to the “big city”.

Mikey typing up my lesson plans for me. It’s gonna be a lot of “sbavahshndnxnnnnnsjnsn kammxndbanmmmmmmdnsjahsbnd” for the first week.

Daddy and Mikey at the only remaining original wall of the John Ross house (Betsy’s husband) which is where we go to see Bob’s neuropsychologist. Society Hill Dance Academy is on the first floor. The first lesson is free. I’ve been wanting to go for the past two months. Might need to pull the trigger and get my dance on while Bob’s at therapy.

I did a bang up job (where I didn’t bang anything) parallel parking. I have gotten better and better with it, but this was a one shot deal. I didn’t have to go back and forth like a K turn. I was so proud of myself. My fear of city driving has all but disappeared over the last five months too. And it’s a good thing, because we are back in Philly again today for more appointments.

We went to Jefferson this morning to see a new neurologist. And we will see Dr. Kucer and his former therapists later on today. Bob completed some cognitive testing today at Jeff. It was a test he’s taken repeatedly and he did well on it overall. Our ride in today was a rough one. He was filling out the packet of new patient information for Jefferson and was very overwhelmed very quickly. He was also very short tempered with me and let himself out somewhere along Walnut Street to walk to the hospital on his own. 🤦‍♀️ He got lost along the way and went into the wrong building. But eventually made it to the appointment. The plan is to cut back on a couple of meds that can also be affecting his mood and cognition.

It feels good to blog again. It helps me to unload all of the stuff rolling around in my head. And I love the supportive texts and emails after I publish a post. It helps to lift me up and I didn’t realize just how much I needed it and how much I have missed that these last two months.

Keep the prayers coming. For his brain to heal and for him to develop lasting strategies to compensate for the deficiencies. For patience on both of our parts to cope with the changes and “new normal”. For the lawyer to contact me back about appealing his disability denial. For us both to understand that we are on the same team.

Bob used to say “same team” to me anytime we got in an argument so that we would both remember that our end goals are always the same and that we would work together better. It’s something that we are starting to say more and more to each other now. You are all also on our team now (whether you like it or not). 😘

Same team.

I got a shower tonight. In my own shower. And it was amazing. Stood in there for 45 minutes. Enjoying my shower beer. Staring at the tree and weird foil designs in there. Reminiscing about my grandmother saying she would “send me back to the Indians” if I took the fancy shower curtain off of it’s hook. Which always made me wonder “why back? Did I come from them in the first place?” This was over 35 years ago and she was born in 1921. So consider the context. She was a saint. RIP my darling Clementine…any-who…I digress.

The shower. We haven’t had but a trickle of water out of the shower head since we’ve been home in June. We’ve been showering at the office (aka our old apartment) and at anyone’s house who would let us. Like nomads. And while the hospitality has been lovely, it just sucked.

So it was amazing to have a little bit of normal in a summer that has been anything but.

Today marks ten weeks since Bob’s discharge from Magee. He was at Magee as an inpatient for 9 weeks. That period was a cake walk compared to now. Really, March 20-June 20 was so simple. I worried about Bob, but I didn’t have to care for him day in and day out. I’ve been wanting to blog and have the title be “Summertime…and the livin AIN’T easy” but I just haven’t had the strength to do it. Because I feel like anything I have to share is so incredibly negative. And I don’t want to be “Debbie Downer”.

• Bob’s depression and his short temper are the things that stand out to me the most since we’ve been home. And his inability to follow more than one, maybe two directions at a time. The short temper is getting a little better, but the whining from our almost three year old sends him over the edge. If you package that with the tiny 7 month old foster baby crying, he has to put on noise cancelling headphones and walk out of the room or house all together. Leaving me to tend to the kids on my own.
• We have had an OBSCENE amount of appointments, procedures, and therapies. Countless trips to Philly. We were there three times a week throughout July. Michael has had three therapies a week as well as ENT and cardiology appts for a heart murmur. He’s just fine. Tiny baby will soon have four hours of therapy a week as well as ongoing appts with pulmonary, ENT, and gastro. And his breathing has been all over the place this summer with his allergies. I’ve had a mammogram, colonoscopy and upper endoscopy, and our poor cat had mouth surgery to remove a mass (not cancerous). And both cars have been in the shop for major brake repairs and my pesky tire that gave me trouble months ago FINALLY just got totally fixed.
• Bob has been going to OT, PT, and Speech essentially three days a week all summer. He also sees a neuropsychologist every week in Philadelphia and she’s amazing. He’s on antidepressants now which aren’t helping, so we’re still working on that. I’ve almost called 911 out if concern for his well-being on more than one occasion. When I tell him he looks good, his response is “I’d look better in a coffin.” He often tells me he feels like he’s trespassing. When I ask him to explain, he says “On earth. I should have died that day”.
• I’m doing my best to be supportive and understanding of a brain injury that I don’t fully understand and the no one can see. And we have no answers on when he will be “better” and when we have to just accept a “new normal” because he will be as good as he will get.
• For those readers who are friends with either of us on Facebook, you know we post next to nothing. And as of this moment, have posted nothing about the accident. But I did post about the opportunity to go to Eagles training camp with a group from Magee. My post was typical Facebook happiness. But the reality was that Bob had a massive headache from the music and noise after about 5 minutes. He felt like it should be Christmas morning and he should be jumping out of his skin excited (his words). But he wasn’t. I went to the bathroom at the conclusion of practice and left him in one spot holding all of our stuff. I told him I would be right back. When I got out, he was gone. I figured, in typical Bob fashion, that he had headed to the car without me. So I started for the car. He wasn’t there. I panicked because he didn’t have his phone and I had NO CLUE where he could be. Thank goodness our friends Keith and Ron from Magee found him and brought him to the car for me. So stressful to lose him, but a great day meeting Wentz, Foles, and Pederson among others. Once in a lifetime opportunity.
• Please keep praying for all of us. I go back to work next week. I’m not ready. Not my room. Not plans wise. Not mentally in the right place to start. This summer was not a recharge for me. I worry about leaving him here all day on his own in his depression. He will be at Bacharach three mornings a week but it’s still a ton of time here by himself with little monitoring. He has a hard time remembering to eat or figuring out what to prepare for himself. He watches the same movies repeatedly. And tells me the same stories. Over. And. Over. And he was also recently denied his social security disability claim. 🙄
• If anyone tells me one. More. Time. how I must be so excited to go back to work for the break, I will lose it. Everything here won’t go away. All of the same responsibilities will exist. I’ll just add on my duties at school. Still appts and phone calls to make. And now papers to grade and lessons to create. Along with everything else teachers do. It will be a change of scenery and maybe a distraction. But not a break. Please pray for me.

And I should have called the plumber two months ago. It wasn’t even that expensive to fix.

Green circle is my grandmom’s hook. Blue circle is my shower beer cup next to shampoo and conditioner. You can see the super cool tree. Don’t be too jealous.

Mikey helping Gaga with our yearly tomato processing.

Mikey at Mullica’s National Night Out. He wants to volunteer for Weekstown’s fire company.

Bob and I with Swoop and the Lombardi trophy at training camp.

THE TREE. Bob really thought if he went to the tree that he hit with the van and saw it that it would jog his memory. We both also thought that he would remember everything as soon as he walked in our house. Both untrue. He wasn’t sure where we kept the plates.

Bob was discharged from being an inpatient at Magee Rehabilitation hospital yesterday. June 20 was three months to the day from his accident. We said a bunch of goodbyes, I shed a few tears, and had a handful of meetings before we departed.

Bob and his Occupational Therapist, Brian

Ranit, his physical therapist

Ashley, his speech therapist

Melissa, his nurse during the day

Buckling up to head home.

Our stop for lunch. Bob’s request

We are home and working on our “new normal”. A few friends and family members stopped by last night to visit and welcome him home. We are heading out to the supermarket now and hopefully home for a nap later this afternoon.

Thank you all for your well wishes!