2yrs; Day 736 – Caitlin’s monologue
Hi Everyone,
We had a fun weekend with family and friends! Caitlin’s comedy show was a big success. If you haven’t had the chance to meet her, trust me, she’s a riot! She reminds me of a young Robin Williams (minus the cursing and inappropriate subject matter) and Tracey Ullman with her own unique characters.
When you listen to Caitlin’s monologues you can’t stop laughing from one character to the next. The persona of these characters is enhanced by her ability to use accents! This year in addition to the introduction of Olga, a Russian immigrant that came to America to be a comedian and Cindy Schnoobner, a 5th grade girl (with a lisp) who is currently the Regional President of the Katie Perry fan club, she thought she’d share a bit more about herself.
She described the subtle differences between working at Wawa in Philly vs. Nottingham, PA…her comparison between Hobo’s and the Amish are quite intriguing. She also shared her personal experiences of growing up a nerd and as the middle child.
“Being the middle child you’d think I’d have an advantage over a younger sibling.” “Most of you know my sister and she’s no push over…I didn’t win a board game until I was 20”!
“Do you know what it’s like to lose at LIFE”?
“To mortgage you mobile home to your brother the “Doctor and your younger sister makes it to Shady Acres to join the Millionaire Club”?
She closed her show with the accomplishments she and Corey have achieved this year.
“Corey learned to walk” ~ “At almost 23, I got my learners permit”
“Corey is eating” ~ “I got a second job handling food”
“Corey moved upstairs” ~ “I moved to my mother’s basement”
Before Caitlin said her final thank you’s, Corey had a surprise for her sister. I helped her to stand and walk from the front row to the stage to hand Caitlin a bouquet of flowers. Caitlin commented, “Last year I had to walk to you to get my flowers…this is service and progress”! She handed Corey the microphone, Corey turned and addressed the audience;
“Thank you for coming tonight”. She handed the mic back to Caitlin and waved to a standing ovation! It was a great night, xoxo
2yrs; Day 733 -piano for the left hand
Hi Everyone,
We have a big weekend coming up! Family will start arriving tomorrow night for Caitlin’s Comedy night. Before I sign off for the weekend, I want to share another BIG FIRST!
Last night Caitlin was playing the piano in the Living room. Corey and I were sitting at the Kitchen table when she leaned over to ask, “why am I not taking piano lessons”?
Giggling to myself I recalled when Corey was younger she hated piano lessons. She never practiced and dreaded Saturday mornings. In fact, the piano teacher told us to stop hoping she’d “want” to play.
I told her she certainly can learn to play the piano and I bet Caitlin could teach her. Moving my left hand onto the table top, I mimicked the motion of playing moving each finger in sequence repeatedly as I assured her that she could start with her right hand and eventually play with her left as it gained strength.
Corey looked at me, placed her right hand on the table to mirror the sequential wave of my fingers then used her right hand to lift her left arm onto the table top. She was silent as she concentrated at watching my fingers roll pinkie, ring finger, middle, pointer, thumb and repeat.
She stared at her left when all of sudden her fingers began to twitch. She studied them silently. I could see she was willing the repetitive motion when it began. She intentionally moved each finger independently.
This is a major first!! Prior to this achievement, she’s only moved her wrist up and down and moved 4 fingers in unison for a hello wave. The fact that she can now give a thumb up with her left thumb and move her fingers independently is a sign; her brain has rebuilt another gross motor connection.
Just think, St. Patricks day (Kerri and Brendan’s wedding) Corey wiggled her left toe. The only sign of movement on her left side; 6 months later her leg, arm and now fingers are intentionally moving independently. Her recovery can be painfully slow until she shows another accomplishment…those moments are rejuvenating and give us the motivation, desire and determination to keep pushing for more…AMAZING! xoxo
2years
Hi Everyone,
The saying goes; ‘your life can change in a second’…we had no idea what that trite phrase truly meant two years ago. Tonight Caitlin prepared an update on Corey’s progress. We were going through old videos and photographs from the ICU to present day. It’s amazing to see how Corey’s progressed.
I remember someone telling me to take pictures of Corey monthly so we wouldn’t forget. Funny how you think, “how could I forget”? I’m so glad we listened. I’m grateful for the documentation. Believe it or not, there were moments I’d forgotten; the towel Corey kept in her mouth to help ease ‘burning mouth syndrome’, Diane and Corey trying to form the word “Mom”…Caitlin sarcastically added, “she’s got that word down now”! Cheering as we watched her arms and legs move ever so slightly and comparing that footage with present day therapy. Trying to teach her to cough, blow her nose, open her mouth, swallow mashed potatoes, balancing her as she tried to sit independently and teaching her to move her eyes to scan the keyboard. The pictures show her healing from a skeletal facial expression to her face softening and forming her infectious smile. It was fun “watching” her hair grow and how her face and body has changed as she started eating and gaining weight.
Pictures not only capture the moment, they validate why we keep pushing forward. The pictures speak beyond a 1,000 words. They chronicle her determination, spirit, energy and accomplishments. The one constant I find in every picture is told in her eyes; “I’m still in here and I’m just waiting to burst out”.
Thank you for your love, support and friendship as we continue to walk forward. It means so much knowing you continue to stand beside her when the road takes a turn and we loose our map!
1yr; Day 730 – EMT’s – memories of the crash
Hi Everyone,
Last week Corey was sitting quietly at the kitchen table when she looked at me and said, “EMT’s”.
Surprised and confused, I responded “what about EMT’s”?
C – “There were a lot of boys”.
M – “Are you remembering the accident”?
Corey paused and said, “I don’t know”. She went on to describe her memory of someone telling her “You’re going to be fine”, “you’re ok”, “Stay here with us”.
That someone was Bill…we met him tonight.
I have wanted to go back to the West Grove Fire Company for a long time now but I also wanted to wait until Corey could say her own Thank You’s. In light of Corey’s conversation with me, I called to ask if we could visit. Ironically, the fire company meets with all their volunteers the first Monday of the month. Tonight is the eve of her 2 year anniversary…the timing was perfect.
Shelly couldn’t join us but the volunteers remembered both the girls. We brought a recent picture of the girls (check out the gallery) as well as a collage of Corey’s recovery for those that couldn’t be there to see her in person. We shared that Shelly is doing very well. She is in Cosmetology school, working and is still as beautiful as ever, inside and out. Corey gave her own update!
The guys couldn’t wait to see her move her legs and arms. She extended her left arm to reach for Bill’s hand. She spoke with them and smiled the entire visit.
The fire chief commented in 24 years he has never seen “the after”. He shared that when the men returned to the fire house that night, he told the new guys ‘that’s as bad as it gets’…’now we pray for a miracle’. He added that he goes to church every Sunday. Every Sunday he prays and often asks for miracles. He never thought he’d actually meet a living miracle.
Bill told us that the memory of that night is as clear in his mind as if it happened last night. Seeing Corey, holding her hand and taking a picture with her, has helped erase some of those memories.
Not one of the volunteers would have placed a bet that she would be sitting with them 2 years later. Corey laughed and said, “No one knew”! She looked at them and said, “thank you for helping me”. She told them she wanted to be a Chef and go to school for culinary arts. (We know we have a room full of volunteers to taste test her homework!) We talked about her recovery and the work she is doing. We told them its hard work, but our motto is Never give up and Never give in; it’s a Matter of Time.
I looked at her and stated, “You’re coming back to us”
She smiled, made a fist with her right hand and pumped her elbow backwards as she confidently announced, “FULL FORCE”! The guys lost it! Laughter and applause filled the room.
How do you thank the people that saved your child’s life? These men and woman volunteer their time, taking time away from their families to “do their jobs”. Without them and the Doctors and Nurses from the trauma ICU, as well as the therapists and nurses at the rehab…we wouldn’t be celebrating tonight!
We have so much to be thankful for as we approach our 2nd anniversary, xoxo
1yr; Day 729 – swallowing pills
Hi Everyone,
Since March, Corey has moved from soft solids to eating any food she wants! After years of being a vegetarian, Uncle Tom loves that she’s eating “meat”…that has been his nickname for her since middle school. I believe her body is craving the protein…he just loves that she is asking for Steak and Hot Dogs!
Despite Tom’s delight in Corey becoming a carnivore, she’s progressed from thickened liquids to water (about 4 stages). Over the last few weeks we’ve been preparing Corey not only to drink thins but to take her medicine crushed in yogurt. She’s been tolerating it very well. We are only using her feeding tube for hydration until she can drink up to 64 ounces of water daily. Once that is consistent, we can have the feeding tube removed.
Here’s the BIG news ~ Today… she swallowed her 2pm, 6pm and 10pm medications in pill form with a glass of water! Her liquid intake was 30 ounces. Next goal is to add the 6am meds.
1yr; Day 728 – Meeting Melody Gardot
Hi Everyone,
Just when I think Corey is at her breaking point, she rallies to pull it together and rises to the occasion. Last night and this morning was very difficult. Corey did not sleep and was very agitated. I was concerned we were going to have to cancel our special evening.
Two months ago I bought tickets to see Melody Gardot perform at the Merriam Theater in Philadelphia. I have referenced Melody in the past. She called us this time last year to share her story. She was 19, riding her bike, crossing the intersection of 2nd and Callowhill in Philly when a car ran a red light and hit her. She was in a coma, diagnosed with a TBI and Spinal Cord injury; was in a body cast for 1 year and did not speak for the first 2 years of her recovery. Her accident was November of 2003.
When she called us she highly recommended Music Therapy for Corey. It was that suggestion that started our sing along during spa nights. Corey began with the simple motion of opening and closing her mouth as she tried to sing the lyrics to her favorite IPod songs. Shortly there after, she found her voice.
Tonight we watched Melody on stage. She wears sunglasses due to light sensitivity and still uses a cane to steady herself but she sang, danced, and played the piano and the guitar. All I could think of was the thought that this woman was immobile 9 years ago.
She told me that Corey’s story reminded her of her own. She had to learn to walk, eat and talk again. It was 6 years before she was independent of her mother but continues her therapy to this day. Watching her tonight gave me the renewed Hope I have felt slipping away.
We not only enjoyed listening to this entertainer, we were invited backstage after the concert to meet her (check out the photo gallery). She is lovelier in person. Corey told her, “good job, you did great up there”. “I hurt my brain too.” “when I see you I think I can be there someday…why not”? Melody assured her that there is no reason she can’t do whatever she dreams of. She encouraged her not to give up because recovery is a very long road. She turned to me and gave me a hug whispering that patience is very difficult but it’s what will help Corey get there.
Melody’s last statement to Corey was to “remember this; recovery is a mountain that’s really hard to climb but once you reach the top it’s oh so beautiful”!
Slow but steady, we continue to climb…xoxo
1yr; Day 726 – 4:44am Inspiration isn’t passive
Hi Everyone,
We have been working through a very tough week. Last night and this morning Corey was inconsolable; we had to call out of Bryn Mawr for today.
When any of us are facing a difficult time, it’s natural, normal…human, to think “how am I going to get through this”? “When is enough, enough”? “When is this going to be over”? “How did we get here”? “This is not part of ‘MY’ plan”!
This week there was no clock to track day from night; nor a calendar to differentiate the days. We were going through our memorized routine despite the fact it’s anything but routine. That happens sometimes, one day flows into the next without a break. Anyone that has ever been a caregiver understands this description.
So what do we do? It’s been so difficult this week I couldn’t write last night and wasn’t going to write tonight but two separate people (strangers in life but friends of the carepages) gave me the courage to get through last night and today.
We’ve all heard of ‘Random Acts of Kindness’. Since Corey’s accident we have been blessed to receive a number of gifts from so many people; some we knew, some wanted to remain anonymous.
Yesterday morning there was a package tied to our mailbox. Enclosed in the gift bag was a note from a woman I’ve never met. She has been reading our journal for two years. She was intimidated to leave a note in fear that her intent would be misunderstood. On the contrary, she was inspired to write and deliver her gift on the very day it would be most needed. A small MP3 player held a recording of the full Rosary. Her card detailed a recent challenge she endured. The recording gave her comfort during her difficult days. The words were nurturing and non-threatening reminding me that the Blessed Mother doesn’t care if I go to church. She was a Mother who prayed for her child too.
Corey frequently wakes throughout the night screaming for me. Her heightened anxiety is exasperated by seeing an unfamiliar face in her room; a new night nurse is beginning to orient with us. She rejects anyone that is not ‘Mom’. At one point, I couldn’t calm her down. I recalled the message in my note, ‘I listened to this version of the Rosary when I needed a moment of peace’. I took the ear buds, gave one to Corey and placed its mate in my ear. I turned the player on and watched Corey’s face. Her eyes never left mine. When she heard the narrator, she recalled the prayers and her face lit up, her eyes become wider, childlike and she smiled…surprised she said,”I remember”. Each decade was followed by a song. It was not a hymn we have ever heard before. When Corey heard it, she signed the lyrics as they played. Then she closed her eyes and dozed off. I would sneak back to my room only to be startled awake by another bellowing cry. This was the pattern for the night.
This afternoon’s gift was my motivational reading for the day. Someone that knows me through a friend of a friend sent me an email. He shared that he woke up at 4:44am. He sat by the side of his bed, lit a candle for light, inspired by his dream he began writing a message he knew was for Corey and me. Another God moment; I woke at 4:44am exhausted, feeling like I was at my breaking point. He was inspired to write the words I needed to read today.
I want to share it with all of you because as I read and reread this message, it occurred to me that it was meant for all of us. The details of our individual stories don’t matter. How we learn to “live” our life’s challenges does. We can all learn from each other. More importantly, we need one another. We need the random acts of kindness to appear in our lives. We need not only to receive but to give them to others.
Inspiration isn’t passive, it’s the deliberate perspective and actions we take to help each other get through the tough days. Thank you to my two new friends and to all of you for walking beside us the past two years, xoxo
Silent Message
you do it.
you do it because you can
you do it because you should
not because you’re special
not because no one else can
you just do it
and, by doing it
someone else is inspired
and so they do it
and they inspire someone
and so they do it
and, before you know it
a bunch of people are doing it
you see … it can start with one
and it can have this ripple effect …
this snowball effect
maybe you know you inspired someone,
maybe you don’t
but, you just do it anyway
go
do it
just go
make a difference …
in your life,
in someone else’s life,
in the world.
go …
do it …
Now !
(after meditating, He added …)
what is important, is to go …
to keep moving forward …
to be an example for others …
to smile …
to share …
to listen …
to know …
to go.
1yr; Day 723 – there’s a difference between knowing and remembering
Hi Everyone,
We had an intriguing conversation with Corey at the end of a difficult day. We are working with Corey to help her express what the root causes of her outbursts are. So far we have come to the realization that she doesn’t remember the therapists, doesn’t like the crowded waiting lobby of strangers and feels safe at home, “I know home”.
Talking with Corey is fascinating. Her ability to communicate what is troubling her is thrilling because she can finally express it. This afternoon Natalie asked her why she was yelling, why was she frustrated at that moment? Corey emphatically told her, “I’m frustrated all the time”!
Why are you frustrated?
“I don’t like people” she yelled.
Why?
“I don’t know them and they ask me to do things I can’t do”!
BINGO! Now we know what we’re dealing with…My response was ‘you don’t remember’ there’s a difference between knowing and remembering…
Corey,
We ask you to try new things because we have no idea what you CAN do, so why not ask you to do everything and let you show us? We know you get frustrated when you try (and when you don’t respond instantly that’s when you get mad and guess what…you end up doing it!)
There’s nothing you can’t do. There are plenty of things you don’t remember you can do and it’s a matter of time before you can do everything whether you think about it or not.
Have patience with us Corey. You know what you’re capable of, some days We need help finding the best way to ask you to show us. I’m so proud of you for finding the words to help us understand, xoxo
PS – Don’t forget what Natalie told you. She met you almost two years ago. At that time, you were physically unable to do anything. Looking at you then, she admitted that she would never guess that you would be moving the way you are today. You surprised her and everyone that works with you.
PSS – anyone that REALLY knows you is not surprised at all!
1yr; Day 722 – EVERYTHING is therapy
Hi Everyone,
It’s been a very quiet but LONG weekend. Corey and I enjoyed each others company and completed lots of chores around the house. EVERYTHING is therapy! For instance; Parking her wheel chair in the kitchen to walk to the bathroom, folding, sorting, spot checking clothes to do laundry, standing at the sink to do dishes, emptying the dishwasher, stacking Tupperware, plates and putting away the silverware. Corey used a letter opener to open the mail. We used the calculator to balance the checkbook, played on the keyboard as I typed some letters, she beat me at UNO and she stood at the island to use the mixer as we prepared to bake a cake! Doesn’t matter what the task, Corey can think, speak and has two hands and two legs ~ we’re going to make sure she uses everything she’s got!
I’m going to close with a funny story. Tonight I knelt before her to take off her shoes and socks. As I knelt down, “old lady” noises escaped from within. Corey said, “What wrong mom”? Jokingly I replied, “I’m getting old Cor”. She looked at me a little concerned and emphatically told me, “Mom, you’re not at the top of the hill yet”!
She’s so good for my morale, xoxo
1yr; Day 720 – another conversation with God
Hi Everyone,
Today’s entry is a risk, a conscious decision to share on a deeper topic. Vulnerable is not a word I allow in my vocabulary. Despite my trepidation I feel compelled to keep typing. A conversation with Corey is the catalyst…
I was raised with a religious foundation of trust and belief in God. I was taught to pray to God with the assurance that He heard every thought let alone spoken word. I was often intimidated by that ominous vision and secretly felt fearful that I would be judged daily for making wrong choices.
Fortunately, I was taught not only by my parents but adults that shared and lived their belief in a loving God I was too young to comprehend. As I grew older and matured I came to understand the God of my childhood was not the God I came to know as an adult. The God I became friends with loved me unconditionally. As a parent, I learned that although the kids might make a choice I feel would be a mistake I can not stop them from making it. I may not agree with it and I may not approve, but I do not love them any less for their decision. The connection was made, that is the God my mentors tried to share with me.
The choices we all make are lessons for this lifetime. We learn one of two outcomes from those choices; if it was positive we not only repeat it we can improve on it. If it’s a choice that resulted in a negative consequence, then we’ve learned NOT to repeat that choice…hopefully (some of us learn faster than others).
I was also taught that every lesson “happened for a reason”. God had a plan including the people we met throughout our lives. They were placed in our path as part of the plan. Sometimes they were there for our plan; sometimes we were introduced to them for their plan.
When times were challenging or tragic, prayer was the first recourse to remedy or weather the situation. Prior to two years ago there was no assumption, trust in God was the resolution; firm, confident, unyielding.
I remember being in the ICU surrounded by people that loved us yet feeling completely abandoned. Where was He? Why can’t I feel the trust, belief; the connection? I was numb, angry and afraid. Overwhelmed by decisions we shouldn’t be asked to make with no assurance that the outcome would be the right choice an internal wall was being constructed. A new brick stacked with each passing minute. The design did not include a door or windows. The mortar solidified my new resolve; Trust myself.
As the milestones passed, the months turned to the first year. Every minute I spent with Corey my focus was directed towards positive energy. A kiss goodnight was the last task before I would find myself in the noisiest part of the day ~ I was alone with my thoughts. The night gave me a chance to cry; an “attempt” to wash away my anger, fear, doubt and worry. I gave myself permission not to be brave or guarded. Once I released the day it was time to regroup. How was I going to get up and do it again the next day? Prayer was still not an option. I was convinced no One was listening but I put the words out there anyway hoping for answers.
Corey and I developed a bond. We would sit in silence, staring into each others eyes and could “hear” the others unspoken words. The day we learned Corey could write, my heart leapt for the first time. She could communicate. She’s no longer trapped within herself. I believe that was the real beginning.
Looking back over the last 14 months since she penned her name, her progress has been steady (accelerated in some clinical circles). Walking, talking, eating and speaking little by little there have been new accomplishments almost every day.
Each month that passes introduces deeper levels of understanding, development of physical strength and cognitive and emotional healing for both of us. To say the last several months have been challenging is truly an understatement. However, Corey reminds me on a daily basis that she is indeed advancing. Lately the display of progress is reminiscent of turbulence on an airplane as we prepare to land with no landing gear…but progress nonetheless. The stamina to stay positive and focused has been wearing thin. Everyday it’s a fight to hold onto the one bright hour when the other 23 are so dark. She and I have been working on communicating our emotions, struggles, concerns, joys and beliefs.
Corey’s communication to me has been her greatest form of progress. Her ability to share what she knows, what hurts, what excites her and what troubles her has been our most valuable gift. She has moments of clarity now and can verbalize how she has been coping with her new life. This morning she shared that she continues to get spiritual help…
The description of her first “dream” was almost a year ago. God came to her, touched her face and kissed her. After recounting the details of her dream I asked if she was told to “do something”, she stated “tell everyone”. Fear of being judged, thought of as “losing it” and doubting the validity of her “dream” I confided in close friends and family. One friend pointed out that when I told her about walking in to see Corey in the ER, I commented she was wired to machines connected to every part of her body, yet her face was perfect. “God must have kissed her, it is the only answer as to why she didn’t have one cut or scratch on her face”. Thinking of her charge to share her dream, (tell everyone) it occurred to me that our journal’s daily salutation was addressed “Hi Everyone”…the choice to publish her story was directed not suggested.
Corey’s dreams continue. She doesn’t speak of them consistently but when she does, the information and details are always the same. God comes to her when she asks Him to, when she’s hurting or afraid. He holds her face in the palm of His hand and kisses her. His voice sounds like music. Her details are simply stated, never embellished. I’ve witnessed her in His presence, her fingers move as if playing a trumpet when He speaks to her. Her eyes light up and her facial expression softens, I ask her what she’s looking at. She tells me to look at the lights. The illumination in the room hasn’t changed for me. She smiles, elated as she points, “Its Jesus”.
“What’s He doing”?
“He comes to visit me”.
There is silence as she stares at the nook in her room. Her face is relaxed and peaceful.
She breaks her gaze and looks at me. I sense it’s appropriate to ask her questions now.
What were you looking at?
“God”
What was He doing?
She lifted her right hand, reached out and placed it on my cheek. As she looked at me she moved her hand to my forehead and gently caressed my face sweeping her hand back down to my chin.
“Is that what God did”? She smiled.
Did you say anything?
“I told Him, This is not fun”
What did He say?
“This isn’t fun but keep going”.
Pointing to her right cheek, she added “He kissed me here”.
THIS ISN’T FUN BUT KEEP GOING…
Is there a reason for all this? I don’t know.
Is this part of a plan? I hope someday we’ll find out and it will make sense.
Are these dreams only for Corey? I don’t think so. The saying goes, ‘Time heals all wounds’…I’m beginning to understand that means spiritual as well.
I don’t believe that God “let’s” bad things happen…but I’ve been told He’s there to help us through them. It must be true; He comes to Corey every time she asks. He is with her so she can keep going.
Instinctually I know her dreams are messages for me too…His subtle way of handing me the sledge hammer to create a hole in that wall around my heart …guess it’s a Matter of Time for me also! xoxo