2yrs; Day 968 – Kids weekend = caregiver respite
Hi Everyone,
Technically it was Memorial Day but for me it was Mother’s Day. The kids came home on Friday and declared “kids weekend”…no one under 30 allowed! I found a room in a small town near the Chesapeake not too far from home (just in case I had to get back ~ the God forbid rule) I had no agenda, a good book and not only slept through the night; I slept in!
The kids had a great time (of course I called and texted multiple times…a day). They played games, watched movies, spent some time on the back deck and kept busy. We did skype and Corey called me several times but she handled my absence well until Sunday when I returned. She welcomed me home, gave me a hug and said she was glad I had “Mom time” but then emphatically told me “you can never leave again”!
The most common advice shared to caregivers is the airplane speech about putting on your oxygen mask first. That’s much easier said than done depending on the circumstances. I was very grateful to go away and know the kids were capable of caring for Corey and Corey was not flipping out (they have learned the art of distraction!).
While I was away it gave me a chance to relax and reflect. I thought about where we are, how we got here and where we hope to be in the future. Reviewing Corey’s timeline and list of accomplishments is truly awe inspiring. Her recovery requires tremendous effort but it also demands rest. Her effectiveness of each is interdependent…so is mine. This concept was not a revelation discovered this weekend; on the contrary, it was realized because of our relentless effort.
I am so grateful that Corey was willing to “try” kid’s weekend. Thank you to JohnPaul, Jackie, Caitlin and Cory James (Caitlin’s boyfriend) and to our neighbor Suzanne; for checking in from time to time. I can honestly say for the first time in a very long time I feel refreshed, full of energy and ready to keep moving forward towards our next set of goals! Xoxo
2yrs; Day 963 – if I can make it to bedtime
Hi Everyone,
Thank you for your encouraging notes. This journal has been a great source of love, friendship, support, encouragement and Hope for our family. As you know from your own lives, some days are just plain hard. But as Corey says, “If I can make it to bedtime, we get to start over tomorrow”.
We receive emails from many carepage followers we have not yet had the privilege to meet. One such note arrived today with a ‘parable-like’ story attached; the author was not identified. It was our new friends hope it would give us a new perspective to help us through our current challenge.
~ Seasons of Life ~
There was a man who had 4 sons. He wanted his sons to learn not to judge things too quickly. So he sent them each on a quest, in turn, to go and look at a pear tree that was a great distance away.
The 1st son went in the winter
The 2nd in the spring
The 3rd in the summer and the youngest son in the fall
When they had all gone and returned, he called them together to describe what they had seen.
The 1st son said that the tree was ugly, bent and twisted.
The 2nd son said it was covered with green buds full of promise
The 3rd son disagreed; he said it was laden with blossoms that smelled so sweet and looked so beautiful, it was the most graceful thing he had ever seen.
The last son disagreed with all of them; he said it was ripe and drooping with fruit full of life and fulfillment.
The man then explained to his sons that they were all right because they had seen only one season in the tree’s life.
He told them that you cannot judge a tree, or a person, by only one season. That the essence of who they are, and the pleasure, joy and love that comes from that life can only be measured at the end, when all the seasons are up.
If you give up when it’s winter you will miss the promise of your spring, the beauty of your summer and the fulfillment of your fall.
Don’t let the pain of one season destroy the joy of all the rest. Don’t judge life by one difficult season. Persevere through the difficult patches and better times are sure to come in time.
Success keeps you growing but only GOD keeps you going.
Corey,
Your recovery correlates to this parable. We’ve already made it through the winter and we are beginning to see the green buds of promise. Waiting for the seasons to change when it seems that time has stalled is very frustrating but we also know that life and progress never truly stands still.
It’s been a long, brutal winter but everyday a new bud is getting ready to blossom. As you continue to grow and begin to bloom, you will show everyone watching that ‘difficult’ is a far cry from ‘impossible’! xoxo
2yrs; Day 962- Sanity relies on Perspective and Distraction
Hi Everyone,
We managed to get a few hours sleep last night but climbed back into the ring this morning. I had to break the circuit at one point, stepping out of Corey’s room into the hallway. As she screamed for me I stood against the wall, closed my eyes, and allowed every negative, hurtful thought I have ever felt to internally rant at what we are living but will never openly verbalize. My silent screams drowned out Corey’s tantrum just long enough for me to regroup. She settled herself down and I took deep breaths releasing the tightness in my chest. After a few minutes, we were ready for another round.
Perspective and Distraction; two of my sparring tricks (she never see’s them coming).
It was time to get dressed to start our day. Rather than continue to answer her anxiety questions I kept changing the subject to what she’d wear, matching earrings and what her hairstyle would be for the day. That led to the observation that she is due for a new mani/pedi polish color and when all that failed ~ I talked about our memories of Dedema and Aunt Kay (that got her). In their honor, Corey picked out a polka dot top and pink zebra socks! (check out the gallery)
We had a follow-up appointment with Dr. Ruggiero. Dr. R performed the tendon lengthening surgery a year ago. He hasn’t seen Corey in 6 months. He and his staff were amazed at her ability to walk. He is concerned, however, that her left foot is tightening and dropped a few degree’s from where it should be as well as the new discovery that we are now having issues with her right foot (another punch from yesterday).
Part of the issue is her weight gain and my diminishing strength to hold her as we walk. The walker helps but is difficult to maneuver in the house. In addition, with the last few weeks of doctor appointments and the DC trip, we only stretched 3 days not 7; proving once again daily walking and stretching is critical to long term recovery.
Corey will begin to wear the Ultraflex boots again; dating back to her inpatient days immediately after the accident. They are dynamic positioning devices that provide a low load prolonged stretch. In layman’s terms, when worn they are locked to the degree that will force a stretch in the tendons. When released, she will have greater range of motion…we hope. Another concern is it may not be her body. It may be the brain overriding the body; sending the wrong signal for movement and/or causing the muscle to seize (contract) and not release. The brain is an amazing control center.
When Corey saw the boot and heard the wearing schedule, she was NOT happy. Unfortunately, I didn’t see her best punch coming (she got me).
Perspective and Distraction; we talked about her plans to walk on the boardwalk, go to the mall, walk on a college campus and stand at a stove. “How will you walk on the boardwalk if your toes are dragging on the boards”? She smiled briefly and added, “splinters are worse”!
Perspective;
She was almost dead ~ everything she does today is better than dead
She wasn’t moving her limbs ~ she’s not only kicking and punching she has great strength and aim.
She couldn’t speak ~ she can yell, scream and share her point of view
Most importantly, she hasn’t lost her sense of humor.
Distraction;
She was upset again tonight fretting over tomorrow’s schedule. I asked her to journal what ever was on her mind. She had a pen to paper and was very busy. When she was finished she called me to the table to show me her thoughts;
Sundresses
2 bathing suits
Flip Flops
Sun hat
Sun screen
Beach towels
Don’t forget the De-O for the BO (her reminder to pack deodorant)
Perspective and Distraction ~ Polka dots, Pink Zebra socks and a packing list guarantee’s a smile no matter how bad your day is! xoxo
2yrs; Day 961 – Where’s the bucket of lemons
Hi Everyone,
There has been a blank document sitting in front of me for over an hour.
Writer’s block ~ sort of…it’s more like a motivational block. I’m struggling to find positive words to carry me.
Today was one of those days I wish I had a magic wand to wave so everything would be back to “normal”. Or maybe find a time machine to go back to when we “thought” things were normal. There are days living this “new normal” can be brutal.
Corey has not stopped fighting and yelling at me all day. I can’t explain why. When I ask her why, her response is ‘I don’t know, mom’. Her anxiety, anger and resentment have escalated since 6am this morning. She even yelled at me when I kissed her good night and wished her Happy Dreams. There is very little point to getting upset, reasoning and/or holding a logical conversation during these episodes as she can’t retain the explanation and escalates even higher with each subsequent attempt.
I guess today is one of those days she’s decided to use her bucket of lemons to throw back at us instead of making lemonade. Let’s hope tomorrow she finds some sugar to counter act her sourness…I’m going to keep my catcher’s mitt nearby just in case, xoxo
2yrs; Day 960 – Corey’s Fightin’ Phils
Hi Everyone,
We had a relaxing weekend that closed with a WIN…a Phillie’s win! Our friends the Sifer’s invited us to an afternoon game today. Corey was very excited. She asked me to get on the internet; “I haven’t been watching. I have to see what the boys are doing”.
Corey was a huge Phillie’s fan. She knew all their stats and the stats for most of the teams in both the American and National Leagues. She used to compare pitchers, infielders, outfielders, predict the World Series contenders all while I would nod my head amazed that the girl who hated math could talk baseball statistics!
When we would watch the games and if the Phillie’s were losing she’d tell me, “Mom, don’t worry; you don’t give up on them because they always pull it out in the bottom of the 9th”.
She knows her boys! As usual, the Fightin’ Phils don’t give up (they’re truly Corey’s team). It was bottom of the 9th, they were down 2-1 with 2 outs and they scored 2 Home Runs!
We were thrilled to see the boys win but it was more exciting to watch Corey clap for her team with both hands! She lifted her left elbow raising her arm, palm down, using her right hand palm up to clap with her left. Then she’d switch her right hand to clap on the top of her left hand.
Clapping wasn’t her only achievement today. Last year Corey sat in her wheelchair, tucked just inside the entrance of the box away from the crowd. She lasted about 5 innings before we had to leave. This year, she walked into the box and sat next to her brother in one of the stadium seats for the entire game. (Check out the gallery)
The rest of the fans were celebrating the win but the true victory was watching this beautiful young woman smiling, cheering and living in the moment!
HOME RUN indeed, xoxo
2yrs; Day 957 – Capital Hill
Hi Everyone,
It was a long but productive day in D.C. yesterday. Our goal was to discuss networking opportunities with members of Congress and the Senate to further educate the legislators on Traumatic Brain Injury, including lack of funding for research, critical funding to expand the acute care length of stay and long term rehabilitation.
We also wanted to share the Brain Injury Association of America’s plea for support of the reauthorization of H.R.1098. The TBI Act, H.R. 1098 was introduced by Reps. Pascrell and Rooney, co-chairs of the Congressional Brain Injury Task Force. This bill will reauthorize the current programs relating to TBI and also will move the state grant and protection and advocacy grant programs from the Maternal and Child Health Bureau to another agency with the U.S. Department of Health and Human Services (Congressman Pitts chairs the committee within this department). The move acknowledges the impact of TBI across the age span, including older adults and returning service members/veterans.
Our first stop; Congressman Scott Perry. Rep. Perry was actually in session but asked his Chief of Staff to pull him out so he could meet Corey. We arrived a little early, met his full staff and were escorted up to the hearing room. Rep. Perry stepped out but asked his chief aide to step into the hearing to take notes in his absence. He then spent the next 40 minutes with Corey!
Rep. Perry has two young daughters. He was anxious to meet Corey and witness her progress personally. She interacted with him and his staff; who requested she move to D.C to become their personal chef. We brainstormed on possible future networking opportunities with his colleagues. Some of his colleagues randomly stepped out of the hearing for other meetings but Rep. Perry took them aside to introduce them to Corey and her story. We met 3 new contacts that will be hearing from us!!
Congressman Pitts was our second meeting. His meeting was very important as it is his committee that could move the TBI Act out of Committee to the floor for both the Senate and the House to vote for its reauthorization. He asked his Director of Legislation to attend an information hearing on 1098 scheduled for tomorrow.
Our final meeting was with Congressman Bill Pascrell. Rep. Pascrell spoke on Corey’s behalf on the Fox national news piece in 2011. He and I have met 3 times during the interim at various TBI functions. He was very anxious to meet Corey and witness her progress. At one point, Rep Pascrell asked Corey if she understood why she came to D.C and what the fuss was about to tell her story. Her response; “other people will get help because of what I do”. Congressman Pascrell looked at me, smiled and said, “she gets it”!
Congressman Pascrell generously spent an hour with us and has asked if he could continue to work with us. The Congressional Brain Injury Task Force is bipartisan. If it works out, the Task Force includes survivors as guest speakers for some of their hearings. He asked Corey if she would consider coming back to speak. Wouldn’t that be amazing!
Corey handled yesterday’s visit very well. In fact, I was amazed at how social, calm and relaxed she was. The meltdown came on the drive home from Wilmington and carried into today at Bryn Mawr; her stranger anxiety was much, much higher then it has been over the last several months. (I think it’s a travel hangover). She doesn’t remember our trip. She doesn’t remember meeting the Congressman or discussing her progress. The anxiety of not remembering was the catalyst to today’s reactions.
Despite her confusion she did participate in her OT/PT evaluations. Once again we are up for reauthorization for therapy. Elaine recorded an increase of 5 degree’s in six different motions for Corey’s left arm. The greatest increase was moving her arm from full extension, bending at the elbow to touch her neck with the tips of her fingers. Just in case anyone thought we were sitting at home eating bon-bon’s, her movement not only was more fluid but the measurement increased 20 degrees! Elaine has now renamed this motion “the bon-bon move”.
To ease Corey’s stranger anxiety Natalie took us to a quiet, secluded hallway at the front of the building. The hallway runs the width of the building, loops around a small connecting hall to join the parallel hallway back to the lobby. Corey did not want to participate. I told her I was going to film her for JohnPaul and Caitlin to watch. She agreed to get out of her wheelchair but didn’t look happy. As soon as I called out, “Ready, start”…she broke out into a huge smile and waved at the camera!
Corey not only walked the full length of the first leg, she looped around a second time. I think it was her longest walk to date. She then repeated a “timed” walk. Her current pace blew away her last timed test. I think I will be filming for “the kids” from now on!
Part 3 of today’s evaluation was to walk up/down a staircase and take a quick measurement of the range of motion on her left foot. If you recall, we’ve been worried Corinne’s presence contributed to drop-foot. She regressed from +7 to 0. We’ve been working hard over the last 2 months at home and at Bryn Mawr to not only strengthen her leg muscles but especially increase the range of motion for her left foot. Natalie reported both feet are at a +7!
What a journey this is. I keep thinking about Corey’s progress, the people we’ve met, the friends we have, the love and support of our family and our community. Who would have thought we would be where we are today.
~ One doesn’t discover new lands without consenting to lose sight of the shore for a very long time ~ Andrea Gide (We not only lost sight of the shore, we almost lost our boat!)
Every new path requires us to leave what was familiar. It’s easy and comfortable to stay with what we know, clutching what we have, working to keep it steadfast but sometimes life has a way of forcing you to change direction. If we are not willing to move forward, we’ll be left behind. “Losing sight of the shore” can cause sea sickness but imagine the fruit yet to be discovered when we land! xoxo
2yrs; Day 955 – a specialists request
Hi Everyone,
We had a successful day, not one glitch in the plan!
Our day began at Jefferson with Corey’s seizure specialist. Dr. S. hasn’t seen Corey since October. He was shocked to witness her progress (he met her when she could not speak and had limited mobility).
His Neuro exam not only included a cognitive eval but demonstration of her walking as well. He was thrilled by her movement and ability to express herself and strongly encouraged continuing our regimen of acute therapy. We told him we were on our way to Capital Hill to ask for change in Legislation to accomplish just that for all TBI patients. Dr S. was very emphatic and asked us to please “ask the hard questions and insist on holding the congressman accountable for their answers”! He then sighted several statistics from his own practice, the limitations and frustrations he encounters on a daily basis and his support for our platform. We promised to introduce some of his statistics and, with any luck, try to schedule subsequent meetings to keep the conversations and networking towards the positive changes we all know are needed.
It was surprising to hear the passion and support of this respected professional.
Our Amtrak ride was perfectly uneventful. The staff was very helpful assisting us on and off the train. Corey was nervous and didnt like the loud engine noises but handled the trip well.
Royal cab is the only transportation service in DC that has disability vans. I placed a reservation with them several weeks ago. They called my cell phone as we arrived in Union Station to let me know our driver was waiting for our arrival and where we could find him.
Corey is in bed beside me, sleeping soundly. I have a little more homework for our presentations tomorrow and then I, too, will call it a night.
Wish us luck for day 2 of our DC adventure!
Xoxo
2yrs; Day 954 – A great adventure
Hi Everyone,
Tomorrow will be a great adventure. I may or may not get to post tomorrow night but didn’t want you all to worry if we didn’t.
We will be heading to Philly to see the seizure specialist for an early afternoon appointment but then head to Wilmington to catch an Amtrak to Washington D.C. Wednesday we have three meetings. Congressman Scott Perry, Congressman Joe Pitts and Congressman Bill Pascrell want to meet Corey!
Rep. Pitts is the chairperson for the Energy and Commerce Health Committee and Rep. Pascrell is the Co-Chair for the Congressional Brain Injury Task Force. Both are influential in presenting to the House the issues needed for TBI funding, education and research. We are going to show them the face of long term acute rehabilitative care. Corey is the perfect spokesperson for the average American recovering from a severe traumatic brain injury.
Privately, I don’t mind telling you I’m a little nervous. Not in regard to meeting the Congressman but for successfully maneuvering the logistics. Corey and I will not only ride the Amtrak train, use the public disability transportation services once we arrive and maneuver the hotel; but we also have to navigate security and the underground corridors within Capital Hill. I frequently joke with my father; why enter the pool using the steps when you can use the diving board…if you’re going to get wet, why not just jump in?
Wonder what the judges will give us for this next dive? Wish us luck! xoxo
2yrs; Day 953 – Mother’s Day gift
Happy Mother’s Day,
Last night Caitlin took the night shift. We switched this morning at 6am. After morning meds Corey and I fell back to sleep as she was miss party pants keeping Caitlin company between 1-4am. We slept in until 10am! Corey’s usual morning questions begin with what are we doing today?
M-it’s Mother’s Day, we are going to hang out all day and do nothing!
Corey’s eyes widened and she gave me a big smile; “aren’t you glad we slept together so you could wake up with your daughter”? (I laughed out loud)
C-do you need a present?
She did indeed give me a present. She didn’t remember it; I actually found it in her backpack tonight as I was preparing for our day at Bryn Mawr tomorrow. I don’t know which therapist helped her but she created a homemade card.
Picture a purple construction paper folded in half. On the outside in Corey’s handwriting “I” (the symbol for a heart) next to “mom” (just above another heart symbol) “Corey” ~ I love mom, love Corey
Flipping the card open unveiled a typed note. It was centered in a heart shaped cut out, taped to the inside of the card, surrounded by small drawings of butterflies and flowers.
The card read;
My mom, Marie, is the best mother in the whole world
She is able to do anything that will make me, JohnPaul and Caitlin happy
She is nice, she always says kind things, she is always upbeat
My favorite thing to do is hang out with her because she is fun and smart
I know everyone enjoys being around their mom but mine is special and different
Thanks for my present Corey, xoxo
2yrs; Day 950 – “don’t think I’m disabled”
Hi Everyone,
It’s hard to believe that one year ago today Corey had tendon lengthening surgery. At that time she was just beginning to eat soft solids, still had formula during the night in her feeding tube, couldn’t move her left arm and was just managing to propel her left leg forward as she walked.
Today she worked out on the arm bike, without direction from Elaine, for 20 minutes. The Lokomat was under repair but she walked 400 ft. throughout the halls with Natalie. For dinner she had chicken tortilla soup, salad and a chicken breast with green beans.
What a difference a year makes!
As we sat at the kitchen table Corey told me, “I don’t want people to think I have a disability”.
C – I have a brain injury but it’s not my fault, it was an accident but I don’t care, I’m going to get better.
M – That’s true; it’s not your fault. You could let it be an excuse to keep you from working out but I think that is why you’re getting stronger. You refuse to live with any limitations.
M – There are many days for both of us when a small voice whispers ‘just give up, it’s too hard, you’re tired, stay home, go back to bed’…but that’s when I think of Dedema’s mantra ~ Its not the challenge you face; it’s how you face the challenge.
It doesn’t matter what got us to where we are today, it’s what can come from it that is important. The only direction we have a responsibility to follow is moving forward, which is great because it means we can take our life in any direction we want! Wonder where we’ll be this time next year? xoxo