1yr; Day 562 – Vision of Jesus
Hi Everyone,
Tonight’s post comes from Corey. She has shared on two different occasions about her dreams of God. Both dreams were described in a similar way recounting similar details leaving us to question not that God came to Corey but why is it that there is a small doubt lingering within our minds?
We did not have nursing last night. I have a pull out chair that sits next to Corey so I can be with her through the night to roll her every two hours, be there in case she aspirates and care for her needs through the night.
Corey was asleep for about an hour as I worked on my computer. Something caught my eye and I noticed she was awake and staring towards the kitchen (diagonally across from her bed). I silently watched her for several minutes to check that her stare was not a silent seizure. Confident that she was fine I asked her what she was staring at. The following is the conversation we had;
M; ‘What are you staring at’?
C; “A boy”
Alarmed and more than a little nervous I looked in the same direction and saw nothing, not even the cats.
M; ‘Where is the boy’?
C; “Standing at the banister” (meaning the top of the ramp in the threshold of the two rooms) she extended her arm to point across the room.
M; ‘What does the boy look like’, ‘How old is he”?
C; “he’s white wearing blue”, “he’s not JohnPaul, he’s medium”
The assumption is the boy has a beard and is a little older than JohnPaul but still a young man.
M; ‘Ask him what his name is’
C; Corey repeated the question aloud but as she stared towards the kitchen she lifted her right hand and gently moved her fingers as if she was softly conducting a song or playing the trumpet.
M; ‘What are you doing with your hand? Waving to him?’
C; “His voice is like Music”
M; ‘what did he say? What’s his name?’
C; she continued to stare but did not answer and continued to gently move her fingers
M; ‘Corey, what’s he saying to you’?
C; “How are you…it’s nice to see you”
M; ‘what is his name? Is He still standing at the banister’?
C; She looked at me then to her left but slowly turned her head to the right as if to watch someone walk down the ramp and enter the room.
M; ‘where is the boy now’
C; Corey looked to her left and pointed between us. “right here”.
M; ‘ask Him why he’s here’.
C; she repeated the question but did not offer a response.
M; ‘so there is a boy that is white, wearing blue that is now right next to us’.
C; Corey shook her head yes in agreement.
M; tell me what he looks like again.
C; “He’s young”, “He’s smart”, He’s resurrected”.
M; I was shocked at her answer. My body had a rush of adrenaline.
M; ‘ask Him why he came’
C; “He came to be with me and help me”
M; ‘help you to do what’?
C; “eat, drink, walk, talk”
M; ‘does he tell you to do anything’?
C; “He wants me to be nice”
M; ‘how long can He stay’
C; after repeating the question, she paused, and then looked at me “He will stay all night”.
M; ‘ask Him who told Him to come’.
C; “His mother in heaven”.
The following few sentences added a message for someone I knew of. What was most shocking was Corey never met nor heard of the person she spoke about.
Throughout this conversation Corey was extremely calm, peaceful and content. My heart was racing, unsure of what to believe or not to believe.
She smiled at me, closed her eyes for a moment, opened them and said, “Jesus kissed me good night”. She closed her eyes and fell into a sound sleep.
Today, I was curious if she’d remember what happened (always the doubting Thomas). Corey not only recanted the experience to Caitlin, her details were on par with what I witnessed. This evening when we asked her if there was anything else Jesus said she wrote, “He kissed me good night in my dream”. “He said tell everyone I’m God and you met me”.
How can we not sleep soundly and feel safe from this night forward?
Happy dreams, xoxo
1yr; Day 558 – another fight, more challenges
Hi Everyone,
People ask me where my writing comes from. Typically, in my minds eye, I replay the day’s activities as if I’m rewinding a home video. As you know there are some very good days and very difficult days. On the difficult days it’s hard to watch the rerun without being distracted by emotions or the fast forward button. To control the speed of the film I search my favorite websites for inspiration. They often give direction and produce the words that we need to hear to make it through another episode. Some days the websites seem to be in a foreign language without subtitles and I cannot relate to them. That’s when I silence my mind, replay the day again, without commentary, and wait for the words to come. Most times they are sent to me in one form or another.
I do not reread our past journal entries. I write from the heart, for myself and for Corey. The composition is therapeutic, releasing the day and instantly erased from my mind. At the close of the following day I read the post and notes sent to Corey. This may seem unusual but for me reading the page aloud feels as if a third party wrote to the both of us and I’m hearing their words for the first time. I can’t tell you how many times the passage and comments help me continue to focus on the present and staying positive.
Last night I have no idea where the words came from but tonight I’m glad they were published. It was a particularly bad day. Once again I am positioning us for our next battle. I am outraged, exhausted, fearful and anxious. We are facing a new fight and new challenges. I can’t even bring myself to summarize the chain of events that are still whirling in my head as I sit here tonight. I will spend the night strategically planning our next response, careful to execute it without an emotional reaction. Once I have us in position I can share the details. Until then I need you all to pray for my strength. I need a clear head, calm heart and guidance for direction. I have been thrown into a virtual hallway with multiple doors. Each has a padlock. There are no keys for the manual locks, no code for the electronic locks and I feel as if they are bolted from the inside as well as the outside. Uncertainty leads to feelings of helplessness and fear; both are excruciating. I need strength, patience and renewed energy.
So here I sit before the empty page looking for the close of this note mindful that we need positive energy to rest well tonight. Inspiration arrived via email. My girlfriend forwarded me today’s message. Don’t ever discount Chinese fortune cookies!
~ Struggle as hard as you can for whatever you believe in ~
The rerun of today’s video is the reason that fortune inspires me to keep going when I feel as if I don’t have a breath left. I want to invite you to join me as we replay it together. Corey was sitting in the kitchen casually chatting with Caitlin and me. It’s not unusual for her to move her legs or arm throughout the day as if she’s conducting her own private therapy session. She is determined to regain function and “works out” all day; therapist or no therapist! Caitlin and I were amazed at Corey’s newest exercise. Prepare for another first! The attached link will show you why I will continue to try to open every door that closes on us. When that doesn’t work, I will go outside and start working on the windows! xoxo
Corey Beattie moves her left hand
1yr; Day 557 – You are a teacher
Hi Everyone,
Unfortunately we do not have nursing on Tuesdays and Thursdays at the moment. By the time our night nurse arrives, I’m ready for bed and don’t have the energy to write. We will be interviewing new agencies this week and next to share Corey’s case with our current agency. (I don’t want you all to worry if I miss a Tuesday/Thursday’s post).
Besides playing nurse, it’s been a busy week! Have you ever heard the saying, ‘when one door closes, another will open’? Our journey is truly reflective of this old saying. Corey’s old life has completely changed its course but she is finding new paths daily. Today she was able to fully extend her left arm, open/close her left hand forming a fist position and repeat the movement independently four times. Two weeks ago, that was not possible. She has been recalling random long term memories including names of childhood friends, details of trips I forgot we went on as well as phone numbers and email addresses. So far she hasn’t recalled any passwords!
Two weeks ago we held a rally to get a traffic signal at Corey’s Corner. Today, the posts were installed for the interim stop signs; the actual stop signs will be installed by the end of the week. At that rally I was fortunate to meet Senator Pileggi. That led to a meeting with him this past Monday, which led to another meeting with a national board member of the Brain Injury Association today in New York City. That led to an invitation to join the Pennsylvania Brain Injury Coalition. The BIA member also asked me to look into a course to become a certified brain injury specialist. The accreditation will not only help our advocacy company but my advocate role with the BIA as well…who knows where that will lead?
Corey change is frightening, confusing, and difficult and it can leave you feeling vulnerable. I am learning that it’s not the details of the life experience that should be our focus. The focus should be on us; changing our attitude, thinking and behavior. Coping with any change can be successful if we follow those three simple principles. I keep trying to find a reason for all of this and the reasons keep revealing themselves. Corey, you are a teacher. By your example you have taught me acceptance, willingness and tenacity among many other qualities. I truly admire your ability to adapt to the change in your life. It is an open ended daily discovery with no direction and yet your focus is always on the present. Your choice to benefit from the experience has led us to what I think will be a better place than the path we were originally on. I’ve said it before; ‘you lead and we’ll follow’. Thank you for taking the lead, xoxo
1yr; Day 555 – Advocacy in Harrisburg
Hi Everyone,
My trip to Harrisburg was just what I had hoped for. Senator Dominic Pileggi (Senate Majority Leader) set aside one hour to meet me. In attendance were two members of his general counsel. Today was not about Democrats, Republicans or Pro/Con Obamacare. Today was discussing Traumatic Brain Injury. This injury hits home because it can happen to any of us, our children or family members. I was very impressed and truly appreciated Senator Pileggi’s sincere interest in this issue. I intertwined our personal story with national statistics, insurance struggles (private vs. Medicare/Medicaid) and the breath of stories that families have shared with me from across the country.
There are 1.7 million victims of TBI annually; 4,000+ daily ranging from mild (concussions) to the most severe global traumas (Corey’s diffused axonal injury). Currently, TBI’s are more prevalent than all the newly diagnosed cancers combined. There is $81 million dollars spent on research for TBI vs. $5.3 billion dollars spent on cancer annually.
The key point stressed at today’s meeting was Funding. Insurance companies as well as Medicare/Medicaid spend millions to save a TBI patient’s life and virtually no funding to give them the rehabilitation to regain their quality of life.
Treatment for TBI is complex and highly specialized. It requires PT/OT/ST/Cognitive and Behavioral therapies. TBI, however, is tossed into a neurological disorder bucket, often overlooked, yet is the #1 acquired injury across the nation.
Most in the medical world and the payers in the insurance world do not understand the complexities of this injury. Hospitalization and Rehab policy in insurance plans was designed for muscular skeletal and orthopedic rehabilitation. These standards were written 4 decades ago. They do not cover the needs nor have they been adapted to present day neurological disorders. The national average length of stay in an acute care facility is 19 days. The average post acute rehab coverage is 26 days. TBI is often treated like an orthopedic injury; hospitalized for 6 weeks then onto rehab for 2 weeks regardless of whether the injury is mild or severe. All are judged on the same standardized neurological exam. I used the analogy of asking an athlete and a paraplegic to compete, both running a mile.
TBI rehabilitation is a life long recovery process that requires a minimum of 15 hours a week utilizing each discipline. Lack of funding, licensure restrictions and benefit restrictions leaves the survivors and families without this critical long term care. The alternative is private pay which is obviously cost prohibitive for most of the TBI population, our family included.
In addition, there has to be funding for training and education within the TBI field. Physicians, skilled nursing, PT/OT/ST/Cognitive and Behavioral specialists are dwindling. This leaves survivors and families without the expertise required for proper treatment for this injury.
Survivors can Thrive given proper services. Bob Woodruff and Congresswoman Gabby Giffords received rehab services for 18+ months. They are perfect examples of how sufficient scope, timing and duration of acute care can yield maximum levels of function and reduce long term disability and suffering. Unfortunately, they are they exception not the norm. The average American and their family often can not advocate for themselves. They rely on law makers to advocate for them, voting into policy and changing legislation to cover what they hope to achieve.
Families need funding for length of stay at the acute care level (hospitalization), rehabilitation services (2 years minimum), home modifications, community and residential services, skilled nursing facilities and agencies that understand the needs of TBI patients just to mention a few.
Federal legislation needs to meet the funding required for TBI through Medicare and Medicaid. The rates must be readjusted for the costly rehab that’s required for this life long recovery. The licensure restrictions must be reassessed to provide the trained facilities that can provide services permission to participate with Medicare and Medicaid funding. In conclusion, there must be more training and education for professionals within the TBI field including all therapy fields.
Senator Pileggi thanked me for introducing him to the intricacies of this issue. His comment, “you put skin, bones and blood on this injury”. He encouraged me to continue advocating and working with the Brain Injury Association. He is going to send me a list of organizations, advocacy boards and coalitions for Brain Injury to broaden my networking circle. In addition, he would like to reach out to his colleagues to see if he can make additional introductions. His general council suggested that perhaps a public hearing would be in order to assist with the awareness and education for this important cause.
Corey if your story can help one other person, it needs to be shared. Your accomplishments are a testament of what “CAN BE” even when others say it can’t be done. Never give up and never give in. Your ring is your mantra…Nothing is impossible. My personal favorite is still the Palamara motto, “the difficult is easy, the impossible just takes a little longer”. Hmmm, that might have to be Lesson #2 for Harrisburg…on our way to DC of course! xoxo
1yr; Day 554 – 1st bite of pizza
Hi Everyone,
We hope you all enjoyed your holiday. We had a good weekend. First of all, I must say how incredibly grateful I am that Caitlin moved home. I know it’s only for a few months but her timing couldn’t be more perfect as we are having trouble with nursing coverage again. She’s shared the night shifts with me and has been invaluable during the days as well! PS – I will begin to look into additional home care agencies to share our case. This unfortunately is not an easy task.
Corey is enjoying her big sister’s company as well as having her brother home today. We had a relaxing day watching Mary Poppins, sitting outside in the sun and eating a non-traditional holiday dinner of spaghetti and meatballs.
Speaking of eating, yesterday Corey successfully tried her favorite food ~ Pizza! It was her first pizza in 18 months. She had two small bites of Taco Pizza and about 4 small bites of plain pizza. She also ate ½ a meatball and ½ large cheese ravioli. She might look Irish and German but her Italian side is still going strong.
Overall it was a good weekend. (Check out the photo gallery, Corey dressed for the occasion)
Tomorrow it’s off to Harrisburg to meet with Senator Dominic Pileggi. I am hoping to articulate the issues met by average American families coping with the lack of services and funding for post acute care. Please keep a positive thought for us as we advocate for TBI patients and their families. xoxo
1yr; Day 582 – Botox, foot drop and no therapy
Hi Everyone,
It’s been a quiet weekend which is just what we needed after our long week. The presentation to the PA Brain Injury Coalition went well Friday morning. I spoke for 30 minutes with a 20 minute Q/A from the assembly. The Coalition is comprised of the Dept. of Health, Dept. of Welfare, Dept. of Corrections, Dept of Education, and the Rehabilitation Facilities Association, the Brain Injury Association, several Parent advocates and TBI survivors.
It was a very good learning experience for me and the committee found Corey’s story compelling. I was asked to share the struggles we’ve encountered in the last 18 months. This may seem harsh but I was also asked to summarize the details. We all have a story and we all have similar details. This was about the road blocks and how we can work towards change. The parents (all present represented TBI patients from the 80’s and early 90’s) were shaking their heads as I shared our story. Their collective comments during the Q/A were filled with distress as they realized that our struggles are no different today than theirs were 25 years ago.
The Coalition is working towards bringing awareness to Traumatic Brain Injury as well as fight for legislative changes that will protect and financially support TBI patients. Through their efforts, they are making in roads to increase funding. I have been asked and agreed to join them serving on Education and Legislative committees. How can we aide the Coalition? We need to continue contacting our Federal and State Congressman and Senators to push for increased funding. Federal funding aides the States, the States then can financially support the waivers for community and home services as well as the local school districts trying to support our TBI children. TBI patients comprise more than 40% of all disabilities and will be the first to face the majority of current and future Medicaid budget cuts. Families cannot go another 25 years before receiving the help they need to care for their loved ones!
Friday afternoon Corey met with Dr. Long at Bryn Mawr Rehab. We have some difficult decisions to make based on Corey’s therapy. We are scheduled to lose therapy from our current company in two weeks. Corey’s foot drop has improved but not enough to help her make progress walking, especially now that her left leg is moving. It was suggested we look into Botox shots and serial casting. That typically is an out-patient procedure. It is also the step before surgery. Unfortunately, Corey can not physically handle out-patient therapy or casting. Dr. Long also suggested that if we were to cast her, we may just be prolonging the inevitable. If we had the luxury of continued home therapy it might be an option but given our circumstances it might be time to look into surgery. Now that Corey’s left leg is advancing, it might be good timing. This coming week we will go for a consultation with a Neuro-Orthopedic Surgeon.
If the Doctor agrees, Corey would have her tendons lengthened and then go back to Bryn Mawr for inpatient rehab for 2-3 weeks. When she is ready for discharge we can evaluate her stamina and decide if she’s going to continue with out-patient or continued home bound therapy.
The Tegretol from Teva pharmaceuticals arrived today. We are hoping that we will begin to see a positive change in Corey’s behavior. She continues to have short/long term memory loss as well as anxiety, anger, fatigue and disorientation issues. Caring for Corey has been extremely difficult lately. We’ve asked for specific requests in the past and tonight we’d like to ask again…we both need patience, spiritual strength and increased physical stamina.
Corey we have another big week coming up. There is a Japanese proverb that we need to remember…Fall seven times, stand up eight. Henry Kaiser wrote; Problems are only opportunities in work clothes. Rest well honey, we’ve got to get back up tomorrow and get ready for work! I love you, xoxo
1yr; Day 552 – starting new
Hi Everyone,
I have been preparing for my meeting with Senator Dominic Pileggi. Part of that preparation has been to reread parts of this journal. A year ago this week we were beginning the appeals for the forced discharged from Bryn Mawr. It’s strange to look back at difficult times. My writing brought back many emotions I have since tried to move past.
Caitlin and I were out this morning running errands and she asked me how the planning was going. After I shared some of the past memories she reflected, “Do you remember where we were last year”? “Not physically, I mean emotionally”. “It was the most horrible place; an emotional roller coaster. Fighting everyone, stress, tension, uncertainty; it was a dark time but the good news is, we don’t ever have to go back to that place again”. “In fact, the next time we need to find a nursing home it will be for you”! “Oh and by the way, Corey owes you big time. She has to take care of you…JohnPaul and I are totally off the hook”…(don’t you love kids…but this one makes me laugh!)
Coincidently a friend of mine sent me a motivational reading today that truly summed up where we were and where we are today. The following are key sentences from that reading;
There are times in our lives that lend themselves to starting something new ~ Starting new is most powerful when we focus our attention to what we are choosing to create. Giving all of our attention to the unwanted aspects of our lives allows what we resist to persist. We need to remember to leave enough room in the process of new beginnings to be kind to ourselves, because it takes time to become accustomed to anything new, no matter how much we like it. There is no need to get down on ourselves if we don’t reach our new goals instantly. Instead, we acknowledge the forward motion and choose to reset and start again, knowing that with each choice we learn, grow, and move forward ~ Each time we choose to start anew we dedicate ourselves to becoming the best we are able to be.
The doctors told us they had no idea what we could expect with Corey. She may never recover and/or have a functional life. We certainly didn’t choose to start anew but we made a decision to keep moving forward. We were scared to death! How are we qualified? We don’t have the skill or the knowledge or resources in order to deal with this new life. Actually I can remember feeling the same way when the kids were born. So we had to start with what we had ~ Corey was alive and we would learn how to steadily grow with her. Now, almost 18 months later, we have acquired new skills, developed new knowledge and gained access to new resources.
Corey you were a blank canvas and look at the story you’re telling today. Your decision to continually push forward is helping you grow intellectually and regain your strength physically. Now that you have found and are developing what you need to continue, you can move forward in the direction you want to go ~ becoming the best you can be! I’m so proud of you, xoxo
1yr; Day 551 – passed soft food not liquids
Hi Everyone,
Corey did very well in the swallow study; however, she did not pass liquid consistency yet. That’s okay, it’s a matter of time. Until then we still give her water through her peg tube for hydration.
Now that she’s passed soft solid foods we celebrated with Wawa macaroni and cheese (Corey’s favorite) and tonight she ate ½ an egg salad sandwich. The next thing we work on is her short term memory so remembers that she ate…we’re going to nickname her “Dori” (from Finding Nemo) if this keeps up!
This afternoon Corey had her best “walk” yet for Gillian on the back deck. Caitlin is working on a PT video of Corey that will air soon. It will definitely be worth waiting for!
All in all it’s been a good day and it’s time for sleep! Happy dreams to you all, xoxo
1yr; Day 550
Hi Everyone,
It was a beautiful day in New London! Corey had an early speech session followed by PT. It was so lovely out we decided to take advantage of the weather and our beautiful deck. Corey walked along the perimeter of the deck for 12’. I tried to film the session but I was called into action to be Gillian’s assistant. Once again I’d like to thank the team at Project Rake from New London Presbyterian Church. Corey could not have walked on our old planks nor held the old wood rail for balance. The new decking (splinter free) is more valuable than we can tell you!
This afternoon we headed out for a field trip to the mall. Sue Ford, Corey’s boss from Candy for all Occasions, is busy preparing for one of her biggest holiday’s ~ Easter. (And you thought the Easter Bunny was a boy) Sue’s daughter Katie needed a few things for her spring wardrobe so we decided to make a day of it. The truth is Corey heard me telling our nurse that I was taking Katie out and Corey told me, “You’re not going out alone”. I asked her ‘who do you think I’m going with’? She emphatically told me, “You’re taking me too. I love to go shopping”. Miss Bossy Britches won…we all went shopping together.
She did very well and picked out some cute shorts for Katie. After our purchases it was off to the food court for a snack. Corey had a strawberry thick shake from Chick-fil-a. You should have seen her eyes light up when she tasted it! As Caitlin says, she’s been on an all vanilla diet for too long, time to switch it up.
Speaking of her diet, tomorrow is a big day; another swallow study to see how she handles soft solids and thin liquids. Please keep her in your thoughts at 9am. If she passes, it’s another step forward.
We will be home in time for another deck walk. I will try to film and post her session. Our journal is a wonderful resource to capture Corey’s daily progress but to watch her “live” is just amazing. Hope to “see you soon”, xoxo
1yr; Day 549 – Ambidextrous
Hi Everyone,
Another big day of firsts for Corey! We were very excited for Alice’s visit this morning to show her the progress Corey’s made moving her left arm and opening her left hand. What I love best about our therapy team is their acknowledgement of Corey’s achievement but the very next words out of their mouths is, “now can you do ____”. The blank is filled with the next challenge to push or reach further than she just demonstrated.
Alice brought two magnets with her this week. She holds one and gives Corey its mate. She moves the magnet to a position that will force Corey to raise and reach above, across or down and slightly beyond her current radius. After today’s performance she will begin asking Corey to hold it in her left hand.
Much to Alice’s delight, she was surprised by Corey’s left hand exercises. Corey has been working on opening her left hand outside of her therapy sessions. Her left thumb has been bent at the first joint making it difficult to fully extend the thumb. Today Corey showed Alice how she releases her thumb assisted by her right hand. Alice was amazed that Corey could fully extend her thumb and that it stayed extended without bending back to the contracted position. Once again, Alice wanted more…”Can you point to Roxie using your left pointer finger”? Initially, Corey’s fingers moved in unison opening all 5. Alice repeated her directions asking for only the pointer finger. Corey closed her hand and followed the command immediately by moving just her pointer finger. Alice educated us that this movement is significant because the muscles used to isolate that motion is not only a cognitive response but it also utilizes specific muscles that are separate from the rest of the fingers and hand. Corey was in control of the muscles and motion. Another first!
Diane arrived for Speech this afternoon. We are preparing Corey for another swallow study this Thursday morning. We are beginning to introduce softer solid foods expanding her culinary options. She currently has 4 cans of formula a day administered via peg tube. As Corey increases her ability to chew and swallow solid foods, we will work towards calorie intake matching the calorie count of each can. The goal is to remove a can for each 400 calories she eats in solid foods. This process will take anywhere from 2-6 months depending on how well she manages chewing, swallowing and digesting solid foods. IF all goes well, the peg tube will then be used for medications only until she can ingest those by mouth. That will be the last stage before it can be removed. That will be a major accomplishment!!
Corey had lunch before Diane’s arrival so the ladies worked on speech and cognitive language skills. Diane tests Corey on various forms of whole language including vocabulary. Once again, Corey blew her away. Diane chose the vocabulary word and would give Corey clues to its definition. For instance; “some people can use their right hand and their left hand for various tasks such as writing”. “What word do we use when you can use both hands for the same task”? Corey didn’t skip a beat, she answered “Ambidextrous”. Diane literally called to me to come in and witness Corey’s response again! Corey was able to answer each of Diane’s questions accurately. When the session was over Diane shared that she is ready to “test” Corey on her whole language skills. She also shared that when she first met Corey back in July, she honestly never expected to achieve the progress that Corey has made to date. You can only imagine how excited I was to see this professional with 30+ years of experience giddy with excitement at Corey’s level of success. She can’t wait to come back tomorrow.
Corey what a good day! I just know it’s a matter of time before you are Ambidextrous. In fact, I think next Monday afternoon at 1:05, Opening Day for the Phillies, we should have a hot dog for lunch and skype Uncle Tom so you two can give him two thumbs up! Won’t he love that! xoxo