Today's the day...six years ago since our son was in a terrible, near fatal car accident.
Today...I'm just gonna ramble about some memories that have been rattling around in my head the last couple of days. Sort of a "stream of consciousness" kind of post. Might be long, feel free to skip it if it's not your thing. There are a lot of memories, so I'll just pick out the stand-outs.
(Well, so much for pulling out a few memories to share. I started writing and it just kept coming. I'm not editing, just posting it as is~ that's the type of post it's meant to be, I suppose. Read it if ya like. I decided to break it down into a couple of posts because this is getting quite long and I don't have any more time to spend on it today. So, more to come)
Here we go!
When I got the phone call from Rick~ I remember where I was, what I was doing. I remember calling my mom & dad and asking them to go to the hospital (we were in Arizona, Curtis was in Utah). I was on the phone with my mom at the same time the police were at the door with my dad. (Really? That's as far as I could get with the writing before I got choked up with emotion? This is a story I've told, remembered, lived so many times...strange when those emotions come flooding back).
That first night: Calling my friend Jeniel, talking with the neurosurgeon on the phone, praying with my children, crying. Not being able to be there, relying on our family (my parents, my 2 brothers, Rick's parents, Amy & Gary) to be there for us. Their constant vigil in the ICU. Trying to figure out how to get to Utah in the shortest time possible. We were going to drive, but the hospital begged our family to try and find another way, driving is too risky when you are in shock. We ended up flying to Utah the next morning, flight arranged and paid for by Gary & Amy.
Trying to get everyone packed and ready to fly to Utah very early the next morning. Praying for, and receiving help to find all the things I wanted to take with me; pictures, Curtis' favorite blanket, a stuffed doll from his childhood (Curtis slept with his Cabbage Patch doll, Buddy, until he was 12!)
My dad and brother meeting us at the airport. It was kind of emotional. The very, very long drive from Salt Lake to Provo. Probably the longest drive of my life.
Our family and friends & some of Curtis' friends gathered in the ICU waiting room.
The long, slow walk down the hall to see Curtis for the first time. You know those horror movies with the hallway that keeps getting longer and longer...that's what it felt like.
Seeing Curtis for the first time. Wow. No words can describe. I didn't cry. To be honest, he was unrecognizable. The only thing we recognized were his very ugly feet! :) The first thing I said, as I stood in shock at his bedside: "Oh Curtis, what have you done?" (There comes those pesky emotions again).
Hours and hours and hours spent by his bedside. While family kept a supportive vigil in the waiting room. Making friends with some other families that also had loved ones in the MICU (Medical ICU.
Wonderful, amazing doctors and nurses who have a very special place in my heart. I really believe we were blessed with the best of the best.
Visits, care packages, food, money from caring, loving friends & family.
The first time Curtis opened his eyes. I had just walked in to his room. I was alone...and kind of freaked out a bit! He wasn't awake, but had his eyes open a little. I thought something was wrong. Or at least more wrong than things already were! Thank goodness for our nurse, Barb. I hurried out to find her. Nothing was wrong, just the process of waking up from a coma.
One of the nurses telling me that Curtis always calmed down when I was there. His blood pressure, heart rate and ICP (intracranial pressure) would always go down when I was there. This meant a lot to me.
Learning a whole new lingo.
Glasgow Coma Scale (his was a 3, the lowest possible score),
Vena Cava filter, restraints, ICP, PEG tube (feeding tube), ventilator, vegetative state. Many of these words I already knew, experiencing them first hand was a whole 'nother thing.
Emily seeing Curtis for the first time. It was really hard for her. He was pretty banged up.
After 2 weeks, we realized this was gonna be a long haul, so we flew with the other kids back to Arizona so they could get back in school. They had been in school 10 days before we pulled them out to go to Utah. I don't know how my kids passed school that year. It was a rough, rough year.
Leaving Curtis behind @ the hospital, being cared for by the doctors and nurses, and being watched over by our family. Hard, hard, hard! Our kids being allowed in the MICU to stay good-bye to Curtis before we left. At this point, still not sure he's gonna make it. Not sure he'll stay alive until Rick & I can get back the kids settled in AZ & then fly back to Utah.
Crying in the airport terminal as we waited for our flight. I have absolutely no words to describe the devastation I felt at having to leave Curtis at this point. Funny memory from that day (well, funny that I remember it, the incident wasn't funny) Steve Irwin, the Crocodile Hunter was killed that same day & it was all the big news of the day that everyone was talking about.
The flight to Arizona~ I sat with the boys and Rick & Emily were in the row behind us. The lady sitting next to Rick struck up a conversation about why we were traveling. As Rick briefly told her our story, she expressed her condolences and then asked some questions, she was very nice, but I remember feeling like I wanted to just turn around and scream at her to shut up! (I didn't do it!)
Later, as we waited at the baggage claim, this same lady found us and asked for our son's name so that she and her family could pray for him. We had this same type of kindness repeated over and over and over. Not only by family and friends, but by total strangers.
Some very sacred, spiritual experiences. Too sacred for me to blog about.
Meeting one of my former Young Women when we toured the rehab facility at the hospital. She was there with her mom. I completely fell apart that day. (Thanks Janice, for letting me cry on your shoulder!) Probably one of my worst days during that initial hospital stay.
Staying at the Guest House at the hospital. Rick flying to UT on Friday night or Saturday morning, and flying back to AZ early Monday morning. Having to transfer to the Hampton Inn the last 2 or so weeks. They were incredibly kind to me.
My mom and dad spent every day with us for the whole entire 2 months we were at UVRMC (except for a couple of days when my dad got sick). My dad was never afraid to help with Curtis. He would feed him, hold his pee bottle for him, and push him in his wheelchair through the halls of the rehab. I relied on their support a lot. Rick's parents were also awesome. Rick's mom flew to AZ and lived there & took care of the kids so I could stay in Utah with Curtis and so Rick could work & then be free to fly back and forth on the weekends. Never could have done it without the help of both our families.
Inpatient Rehab. Hated it at first. It was a hard transition. But once we got the kinks worked out~ I loved it there and the nurses, therapists and PCT's (patient care techs) became my family.
Long rehab days. I would get there about 8 AM and leave about 10 PM.
Walking across the street every morning. And back to the Guest House every night, feeling very much alone.
One day, our nurse Fanice came in and asked if I had had any lunch yet. I replied no, and she encouraged me to go take a break; "I'll watch over your boy while you're gone." What a kind, sweet thing for her to say to me.
More new terminology:
Rancho Coma Scale, neuropsychology, left side neglect, adaptive strategies, post traumatic amnesia, the
GOAT, severe traumatic brain injury.
The medical staff were always so amazed at how big Curtis was. He is a big kid. He was too tall for the beds, his feet always hung over the end of the bed. Everyone also thought him to be much older than 19.
Helping Curtis shower for the first time. I'm sure it was a scary experience for him too! He was still not fully awake yet. I had to convince the PCT that it would take more than the two of us to help him, and I was right! There ended up being 4 of us and I think we were all drenched by the time we were through.
Pureed food, doctoring up pureed fish with sour cream so Curtis would eat it. Curtis always wanting more milk. Curtis being very adept at eating the Jell-O and spitting out the fruit that was in the Jell-O. He also really liked chocolate pudding and did I mention milk?
Curtis having to learn to eat, walk and talk all over again. Rick spending a Sunday afternoon helping Curtis find his voice. He was talking a bit at this point, but always in a whispery voice. So Rick helped him figure out how to make the sound come out louder.
Curtis spilling soda and ice cream in the same spot in the hall outside the gym. I think they've since replaced the carpet in that hall with hard flooring. Good choice!
Eating at the hospital Snack Shack. Developing an "addiction" to Dr. Pepper (someone was always bringing me a DP!)
Late night conversations with some of the PCT's.
Waffles
Thumb Wars
"Mr. Brody" (aka Gary Coleman, yes the celebrity)
Curtis wanting to go all over the hospital looking for "that tiger movie" to rent.
Being recognized all through out the hospital because of our daily rehab walks with Curtis.
Funny, sometimes strange and bizarre conversations with Curtis. I've said if before~brain injury recovery is like living in a real-life hallucination! One funny conversation we remember was with Emily. They were talking on the phone. He told her he was a "B". We are all worried about what was gonna come next, but no, he literally meant a bee, a fat, orange and black bee.
Another time, some wonderful friends in AZ had paid for Emily to fly to Utah for the weekend. That Sunday, we were in his room, Curtis was in his wheelchair, he had to be strapped in (restrained) and he was trying everything he could think of to get Emily to unstrap him so he could get up and get out of there! It was quite a funny conversation that we captured on video.
The first time that Curtis actively participated in Speech Therapy (even if it was brief). He read through a stack of flash cards, out loud! It was awesome!
The first time Curtis could answer the GOAT correctly after his therapy session. Or at least mostly correct. Even if he had forgotten by the next session.
Curtis did not make much progress in rehab. It was a discouraging few weeks. Once he had his second surgery, he started doing much better and the next thing I knew, we were being discharged.
Having to help hold Curtis down while the nurse took the staples out of his head (from his last surgery). He was furious with me! "You held me down while she hurt me! How could you do that to me!?!" It was not always fun being the mom/nurse/caregiver/therapist.
Our final staff meeting. Saying good-bye to the doctors and therapists we had grown to appreciate, admire and love. Not-so encouraging words from the physiatrist (rehab doctor), statistics, data, prognosis is bleak, blah, blah, blah. Followed up by kind and encouraging words from the neuropsychologist. Thank goodness!
My friend Connie coming to see me just a day or two before we left to take Curtis home. Curtis was in full-fledged Rancho IV at this time and I wasn't dealing with is so well. Connie was kind, patient and even made me laugh! She knew some of the staff there, and let's just say the psychologist was very earnest in her attempts to help.
The absolute fear Rick and I felt when we walked out of the rehab unit for the last time, Curtis in tow. He was at a Rancho Score of 4. Not a really good place on the scale to be. He was very, very inappropriate and combative. Saying we were scared to death is a gross understatement.
The drive home. It was horrible! Curtis was sick and confused. He thought we still lived in Spanish Fork & couldn't figure out what was taking us so damn long to get home (his words). He wouldn't keep his seat belt on, and he wanted to stop about every 1/2 an hour. He was exhausted and it was a difficult 10 hour drive home. Stopping at a park near a Wendy's and letting him sleep on the ground on a blanket. Hiking across the parking lot to buy him a chug of milk when we stopped at Pizza Hut in Flagstaff for dinner.
We got home late, but all in one piece. The next morning, Rick went to work, and my role as full time caregiver to a severely disabled son kicked in to high gear.
I remember the next morning, just feeling like "Now What?" What the heck was I supposed to do?
...More to come~
You can also read previous (shorter!) posts here:
Curtis
