5yrs; 4 months – Caregiving and Life’s responsibility
Good morning everyone,
My sister Diane has always teased me because I look at the world through rose colored glasses. She frequently calls to inquire how I am doing. “For some reason, I’m super tired”. Her response; “hmmm, could it be because you a haven’t had a full night’s sleep in 5 years”? Or most recently, “I’m so distracted. I can’t seem to get it together. What the heck”? She sincerely offers a solution, “would you like the list numerically or alphabetically”?
The New Year has certainly brought change. Corey has been adjusting to her new schedule and emotional awareness (aka Corrine is back!)and she’s been displaying her discomfort with these emotions with daily tantrums, including more public outbursts. In addition to coping with yet another new phase of TBI, Medicaid has also initiated change in their benefits and reimbursements as of January 1. I have been appealing denials for medications and medical services multiple times per week and let’s also add a pending nonsensical court conference.
Caregiving and life’s responsibilities are much like the old inflatable bozo the clown toy. You stand there smiling, challenges come from every direction but you’re anchored to your position with weights. The weights don’t represent burden or obligation; they represent security and the ability to stand fast from external forces that try to offset your balance. Although the toy appears to withstand multiple hits, it can in fact deflate from constant bombardment. This friends,contributed to our recent silence.
Feeling weary, sad and even a little depressed is normal. The trick is to reframe the thought; instead of an emotional wall, think of the challenges as a corner. How do you not get ‘stuck’? There’s no quick fix or immediate solution especially on the really bad days. Practicing perspective is critical to reframing the challenges. In my minds-eye, I’m facing the corner in a dark room. My hands help me push back and I turn around. The corner no longer muffles my breath, it braces my back. If I lose my balance, I now have support to right my stance. Breathe, process, adjust. I become centered and begin to reach out. I have no idea what I will find but somewhere along another wall, I will find a window! This is where my daily ritual of researching the internet for inspiration comes in. The words I find are like a breeze guiding my direction.
I found my breeze in Marc and Angel Chernoffs blog – 1000 little things happy successful people do differently. I’ve been reading and rereading their entries. The words have helped me bounce back. I’m beginning to feel less deflated. I’ve been reading their passages to Corey hoping she can internalize the hopeful messages. It’s difficult to reteach her how to develop and practice perspective. I’m hoping repetition will aide in the lesson.
We will be writing more this month. We are working on something new that will continue the change and recovery we are looking for. As soon as I have the details we will post. Corey will be posting more entries as well. It will be part of the process.
Thank you all for sharing this journey with us. I know I’ve said it in the past but your continued love, support and friendship is more valuable than you know. We’re 5 years out and in some ways it feels like the first 5 days. Your presence is our corner support. You give us the strength to breathe, process and adjust to keep moving forward, xoxo
5yrs; Day 1932 – Standing back up
Hi Everyone,
We found today’s inspiration on facebook – Follies of God
“Life is so frequently unbearable–you think you can’t possibly go on. Life–the survival of life–is the getting up again and going on, and the means of doing this vary, but at the heart of all things moving forward is the realization–for me, at any rate–that the world, your friends, your own broken heart need your friendship and your laughter and your willingness to go on. Break down and acknowledge your loss, your anger, your diminishing assets, but fall right back on a laugh, a story, a meal–whatever you can cobble together and give to someone else, to yourself.”–Alec Guinness
Thank you for all your love and support. We appreciate your friendship more than we can express; you help us stand back up every time we stumble and fall, xoxo
5yrs; Day 1931 – This is Living with Brain Injury
Hi Everyone,
I was going to begin writing this entry with an apology for the delay and for the structure; it’s going to bounce back and forth between the good, the bad and the ugly. The reason I’m not going to apologize is because THIS IS LIVING WITH BRAIN INJURY.
The Good: I’m still trying to post the summary of the GoBabyGo Café project. When you read it you will be amazed and as excited as we were and are at Corey’s overall progress. It was good to have the week between Christmas and New Year’s off before we headed to Dallas. Again, Corey’s physical and cognitive progress astounded the Doctor’s and tech’s that worked with her. The initial eval scores and physical exam surprised the team. They restructured the therapy they initially planned to an advanced set of exercises. One of the biggest improvements was Corey’s ability to take the IMPACT test. It is a concussion program measuring the severity of her cognitive damage. The test takes roughly 90 minutes. In September, she could not concentrate for more than 5 minutes. This trip, she did not finish the program but could focus for 45 minutes. Parts of her cognitive strides are a direct result of working in the Café and the work she’s been doing on writing her cookbook. Her attention span is a clear indicator of neuro plasticity and healing. Now that we’re home, Corey is beginning to read full recipes and demonstrate her understanding and processing the information. Last night she called out to me, “Mom, I just learned something new. I could add Apricots and Oranges to salsa to make it less spicy and more like sweet and spicy for chicken”. Retention is still her albatross.
The Bad: The challenge with brain injury and neuro plasticity is what appears as regression often manifested by her behavior. Corey’s memory loss is significant. She doesn’t remember we were in Texas last week. Although she can read the calendar, if asked to recall today’s day of the week, date, month, year or season, she will not know the answer. She asks to go to the bathroom 50x a day because she doesn’t remember she just went and will argue beyond reason insisting she’s right and we’re wrong. As she heals and ‘learns’ more, and as she becomes more aware of her environment, her current reality still doesn’t match what she ‘thinks’ reality is. She still doesn’t remember the accident, why her left leg doesn’t “work right”, why she can’t start to drive and the list goes on. On New Year ’s Day she was very, very sad. In fact, she’s been vocalizing her sadness daily. There is a new level of depression emerging. Her inability to produce tears when she cries is a permanent side effect of her injury. Her body sobs yet she cries dry tears. She had begun to vocalize her thoughts. “This isn’t fair that this happened to me”, “When is it my turn to go to college”, “I’m jealous of my friends because I don’t have a boyfriend”, “Who is going to want to love me the way I am”, “I’m tired of trying to get better, it’s too hard”, “I’m sorry you and Caitlin have to take care of me and I’m like this”. We recently lost someone very close to us. Corey is feeling a new level of grief. She asked for her rosary so she could pray for our friend. These moments are beyond tough but I bounce back to The Good…she’s verbalizing a higher level of thinking, discovery of emotions and compassion for others. It’s a spark of emotional maturity.
The Ugly: Monday was the second most traumatizing day we’ve had in 5 years. Caitlin, Corey and I had an appointment, stopped for lunch and headed to the grocery store near our appointment. I have a garlic allergy and didn’t taste the garlic in our soup from lunch. When we arrived at the grocery store, I ran in to use the ladies room because I was sick. Caitlin brought Corey in via wheelchair. Corey was disoriented by my rushing into the store, not recognizing where she was along with the crowd of people they encountered heading to the restroom. Despite Caitlin’s detailed explanation of the surroundings, Corey was perseverating and ramping up to a full blown anxiety attack. I met the girls in the family restroom, tried to help calm Corey’s anxiety and silence her screaming and helped Caitlin as we started back to the car. Unfortunately, I was still sick and Corey was aware of the stares from the people shopping in the area. I asked Caitlin to take Corey to the car and I returned to the lady’s room. The Ugly became the Horrific. Corey held the wheels and tried to stop the forward motion of the chair with her right foot on the sidewalk. When the girls approached the car, Corey not only unbuckled her seatbelt she tried to stand on her own while hitting Caitlin, screaming and cursing at her. When Corey hits this level of rage, she can be very mean and physical to both of us. A passerby approached Caitlin and yelled at her as if she was an abusive caregiver. Needless to say, Caitlin was emotionally destroyed and when Corey was settled in the car, she had no memory of the incident. She was patiently waiting for me when I returned. My father tried to console me by suggesting the passerby could have been acting out of compassion for Corey…I disagree. Compassion would have been approaching the girls asking if there was anything she could do to help NOT judging Caitlin on an assumption of what her perspective of the situation was.
This is an example of what DOESN’T get written in the carepage. This is brain injury; the good, the bad and the ugly. These three facets of reality exist in our life every single day. We MUST stay focused on The Good…Corey’s behavior is a sign of healing and cognitive awareness battling her memory loss with the frustration at being ‘trapped’ inside of a body and mind she doesn’t recognize. The Good…we look at the list of each incremental gain, each spark, each 1st and that list is longer than The Bad or The Ugly. In fact, it’s actually **** GREAT! xoxo
5yrs; 3 months – Hello from Dallas, Texas
Hello from Dallas, Texas!
Our first visit was August 31st through September 4th. The Cerebrum Health Center (formally called the Carrick Brain Center) specializes in customized Vision and Vestibular Therapy programs for TBI, Stroke and Nervous System disorders.
After our first weeks therapy, the team set 3, 6, 9 and 12 month goals for Corey to work towards. We had a successful week and left with a series of home vision and vestibular exercises. We incorporated the exercises 2-3 times per week for September and October. The month of November and December Corey’s therapy focus was participating in the GoBabyGo café research project.
We returned January 3rd marking month 3.
Corey walked in to the center assisted by her forearm cane and shocked the entire team at staff (she did not have the stamina or strength to walk long distances in September). Day 1 is filled with baseline vision exams. Because of her walking, Dr. Randall wanted to test her balance skills (a test she could not attempt in September). Corey also took a cognitive IMPACT exam on the computer; another exam she could not do 3 months ago. Corey did not complete the exam; however, she focused for 45 minutes prior to hitting her frustration level and the parts completed showed some short term memory improvement.
Dr. Randall reviewed the initial results. He was blown away by Corey’s scores. They reflected what he hoped she would achieve in months 9-12 not within the first 3 months of her home therapy. I credit Corey’s work with her home exercises and the GoBabyGo Café project. Dr. Randall was thrilled and escalated this week’s program goals.
Tram, Corey’s medical tech, used electric stimulation on her tongue and left temple. The stim on the tongue arouses nerves in the cerebellum (part of the brain stem) to help her tolerate therapy. Stim on the left temple activates the right side of her body so the muscles don’t fatigue.
A series of ascending vision exercises works to help Corey raise her gaze and focus on centering her body to midline, helping her posture and gait. A full length mirror has been utilized this week. It gives her a greater sense of personal awareness. She is actively participating in readjustments and self-correction to make the therapy more accurate. Several of the exercises include an interactive metronome. A metronome helps neural timing deficits (how fast she processes verbal directions). This deficit is common in TBI survivors. By addressing the timing with an interactive metronome alongside functional therapy interventions, this practice will lead to more efficient treatment and better overall treatment outcomes. Corey is more aware of her role in the exercises ‘keeping beat’ with the metronome rather than a passive role often found in rote exercises. Consistently used it can be customized to become increasingly complex with precise timed motor movements and gradually higher and faster cognitive processing, attention and decision-making. A form of Music Therapy, it’s the only neuro-motor therapy that can be used successfully with all patients across the therapy spectrum including all ages and any cognitive and/or physical impairments.
All of the aforementioned exercises are part of colliculus mapping. The exercises target the occipital in the cerebellum, which means; Corey recognizes where her body is within her environment. She will feel her center of gravity and self-adjust her posture, pitch and gait to walk independently.
For those of you following us on Facebook, you saw the short video of Corey’s amusement ride (aka rotational therapy). Spinning in a certain direction, for a certain number of rotations at a certain speed targets the vestibular system. Everyone’s first thought would be that spinning would cause dizziness and nausea, but it does not. Corey actually walks straighter, is more alert and her movement is more fluid post spin.
The most important part of this week has not just been Corey’s exercises. Functional neurology looks at the whole person, not just the brain and how the body moves. Corey had bloodwork completed and analyzed, which included an in-depth look at her current medications. We have discovered some critical information. Corey’s not absorbing some of her medications. In addition, some of the prescriptions are coated for ease to swallow however; the coating is actually contributing to inflammation in her stomach lining and blood cell lining.
We will be adding several supplements and slowly changing some of her medications to help reduce her internal inflammation. In addition, we will be changing ‘our’ diet. I say ‘OUR’ because we’re in this together. We cook together; we’re going to eat together. The cookbook she’s writing is going to get a whole lot healthier!
During the course of therapy, she had pain in her pelvic area. Her pelvis was one of the fractures she sustained in the accident. Dr. Randall ordered a pelvic x-ray. We’ve discovered a calcification of bone in her right hip that is limiting her range of motion and we suspect is the reason behind her inability to straighten her hips as she walks (she leads with her right hip). We will make an appointment will the original neuro-orthopedic team she had 5 years ago when we get home to follow up on this discovery.
Tomorrow Corey will repeat the same tests from Monday, she will have a final session of therapy exercises and we will conclude with our exit meeting comparing her results from Day 1 to Day 5. We can’t wait to share the final test scores! xoxo
If you would like to see the video on facebook, ‘friend me’ at Marie Palamara Beattie
5yrs; Day 1902 – GoBabyGo Cafe research theory
Hi Everyone,
The GoBabyGo Cafe research study is based on the theory that immersion in a workplace environment will not only promote but advance neuroplasticity increasing the subjects ability to improve in all areas within physical, occupational, speech, cognitive and Emotional and Behavioral therapies.
Corey has been in the study for 15 work days (30 hours). We have already seen amazing progress for balance, walking, standing, upper arm and hand dexterity, money recognition and clearer speech and communication. The true goal of the study is to increase quality of life for the survivor; are they happy, do they feel apart of their community, is the work they’re doing meaningful to them? If a person feels they’re contributing to their environment, it not only motivates them to continue working toward their personal goals, it establishes confidence and develops independence.
I would love to tell you all about the tasks Corey completed during her shift today…but I can’t.
Why you ask?
Because today she achieved one of the most significant accomplishments to date.
C – Mom, when we go to the cafe you can drop me off and go wait in the car, if that’s okay?
Corey worked for 2 hours with Devina. When she took her first break, she thought of something she wanted to tell me and asked Devina, “Can you message my mom and tell her…” – she remembered I was not in the building and knew Devina could reach me by phone.
When Corey originally interviewed with Devina, I remember Corey’s separation anxiety was quite high. Devina (not knowing the extent of her anxiety) teased her that she would get to the point she wouldn’t want me around. “You’ll be so comfortable, you’ll be like ‘mom see you, don’t hurry back'”. At the time, Corrine assured Devina that would never happen…never say never!
Today Corey proved the GoBabyGo Cafe’s theory. She was working in an environment she loves. She was productive and confident. For the first time in 5 years, she was independent, xoxo
5yrs; Day 1900 – note to self; don’t get dressed before a test
Hi Everyone,
It’s been a LONG but very good day for Miss Corey. You might not think it, but dressing herself this morning took a great deal of energy and concentration. I was worried because today was EVAL day. We usually try to make Corey take it easy so she can perform her best, but when she reached for her clothes and started dressing herself, I didn’t want to discourage her independence. When I watched her succeed with each piece, I didn’t want to stop her.
By the time we arrived at UofD, Corey was very tired. After the first part of her eval, she was exhausted. She never waivered and continued to push for her best for 4 hours. Every time Devina asked if she needed a break, Corey said, ‘no, I’m good, let’s try it again’ or ‘I’m ready’. Towards the end of the eval, Devina asked what number she would rate her fatigue. “1 is ready to go and 10 is OMG let me lie down or I’ll never get up again”. Corey thought for a long time and answered, “a 4…it’s not so bad”…with that she yawned…I have no idea where this woman goes to reach inside herself and pull out strength only an olympic athelete could understand.
Highlights of her 3rd Eval…Devina is thrilled Corey continues to improve in every catagory.
CT – cognitive score this week…18!
OT – Hand dexterity test…Corey picked up a paper clip, bottle cap and penny with her left hand!
PT – walking test…Corey’s steps are longer, more controlled and she’s walking faster on her timed tests
Tomorrow she will finish her 4 Square test and 6 minute walking test before her shift in the cafe. This is Corey’s last full week at the cafe. It’s going to be a big week for her. Please pray she starts sleeping through the night.
More to come, xoxo
5yrs; Day 1899 – “you got this”
Hi Everyone,
Today is Corey’s 3rd Evaluation Day for the GoBabyGo Cafe research project. I was going to wait and post her results this evening but I cannot wait to share what I just witnessed!
Part of the research data includes input from family and from the subject on how the skills that are strengthened have improved the subjects quality of life outside the Cafe. We have been asked to record anything we witness Corey achieve that may be new or improved.
Our morning ritual is Corey calling out to me when she is awake and ready to get up. She pulls herself to a sitting position, swinging her legs to the floor (that was a big accomplishment 6 months ago!)
I help lift her to a standing position, she side steps to a bedside commode and I help her sit. The commode is the easiest position for us to help her get dressed.
After she tends to her personal hygene, (another big accomplishment which includes putting on a plastic glove, reaching for the toilet tissue, unrolling, tearing the tissue, caring for herself, removing the glove and disposing of both glove and tissue paper) she is then ready to get dressed.
We have been working on Corey dressing herself. Normally she can get her right arm and head into a shirt but continually gets ‘stuck’. Recently, she has been able to add putting on her right sock. She can also put on her right shoe.
This morning Corey;
1. reached for her bra and put her left/right arms through the straps, lifting them to her shoulders (I fastened the back hook)
2. reached for her long sleeve pull over shirt. Placed the bottom of the shirt in her left hand to hold it open. She maneauvered her right arm into its proper sleeve, pulled her head through the top and used her right hand to find the left sleeve (up until today the left hand and arm shared the neck opening). Her left hand found its proper entrance and as she stretched out her left arm, she shimmied the excess fabric to finish the task. Using her right hand, she pulled the shirt down front/back to properly fit. (I did not give one que!)
3. I handed her her underwear. She leaned forward to get her right foot through. Her left foot usually contracts and she cannot lift her knee or foot in this position. Foreseeing this stumbling block and excited she was doing so well, I suggested she start with her left foot. She placed the brief on the floor, sat up, lifted her right foot to ‘step on it’. She leaned forward with her right hand to stretch the band. She kicked her foot forward, as it lurched upward, she trapped it in the brief. Once she pulled her heel through, she could move her hand across the band to lift and help her right foot through. She pulled the brief above her knees and let out a huge sigh.
4. Next, her socks. Right foot…no problem. Her usual procedure, she wiggles her right hand into the opening of the sock. She leans down, spreads her 5 fingers to open and cups her toes as she inches her foot into the sock. She then pulls front and back to clear the heel and lift it to her knee. She sat up and asked,
C – “Can you put on the left”?
M – “No way…you’ve got this”, kneeling infront of put my hands under her left heel to help lift and balance her foot.
Corey used the same techniqe with the left. Her contraction caused her toes to lock/point to the floor. Her concentration and tenacity overcame the obsticle…she put on her left sock for the first time!
5. Using her newly discovered brief technique, her yoga pants was her next accomplishment.
6. Last but not least, she put on her right sneaker and pulled the laces…tieing the laces will come…
This process took 90 mins but when she finished, she let out another deep sigh, smiled and looked at me, “THAT was incredibly hard but I’m really proud of myself”.
The last time Corey dressed herself was October 1st, 2010…I am overwhelmed with emotion! My tears of joy and complete awe will have to speak for me. This evaluation day is already a success, xoxo
5yrs; Day 1896 – our new best friend
Hi Everyone,
Corey continues to surprise us. This has actually been a week of a few surprises.
Wednesday’s we visit Dr. A; she is a neuro-behavioral psychiatrist in Philadelphia. Corey fights me every single week! Her reactions are solely generated by anxiety of what to expect, the fact that she doesn’t remember Dr. A week to week and the fear of being with someone she doesn’t know without me. Despite the fact that I remind her repeatedly that I would never drop her off in Philly without staying and we see Dr. A together, she perseverates on her anxiety.
One of the daily memory strategies to help lessen her anxiety is writing in a notebook/notepad. Corey asks for the book to write what she wants to remember. This is a huge first step. The second step is for her to remember the book exists. When she can link the two, she will be able to go back and find her own answers rather than repeatedly asking us. This link can only be built with constant reminders from us, “you wrote that down, look in your book”. Step 3 will be reading her own handwriting (we are writing most of her thoughts in all capital letters). Good news, Corey has begun to ask, “Can I have my book to write something down”? or she’ll call out, “Mom, can you get a pen and paper – write this down before I forget”…
As we traveled on 95 into Philly, Corey was very upset. I took out her notepad and pen. I asked her to write down what she was afraid of. She wrote: What I am most afraid of is independence even though I want it and abandonment…
Talk about getting right to the point!
I told Corey that Dr. A specializes in memory and in anxiety. What she wrote was perfect and encouraged her to bring it in to show Dr. A so she could talk to her about it.
We typically park in a busy lot in center city. I always feel the pressure of the cars lined up behind us so I quickly unload/set up the wheelchair, gather my wallet, Corey’s bag, her water, then transfer Corey to the chair. Just as I was turning us away from the car, Corey stopped me and said, “Mom, get the thing (she was miming her hand writing), it’s in the door”…SHE REMEMBERED HER NOTEPAD!
That was wonderful but yesterday’s surprise is beyond words…our next big milestone!
Corey was in the bathroom as Caitlin and I were rushing to get everything together to leave for the Cafe. Corey was fighting us about everything! She was spewing every negative thought she had…(remember the anxiety names we’ve developed to help her identify emotions? We’ve recently been introduced to Nervous Nellies evil twin…Bitchy Betty!)
Caitlin was standing by the open garage door. I was following Corey, hands ready if she topples. As ‘Betty’ walked out of her bathroom located off the kitchen, I released my hand from the gait belt to place her brush on the counter of the sink…Corey kept walking forward. I stopped at the threshold to see if she could continue independently (we’ve started to release our grip of the belt to test Corey’s balance). Caitlin, eyes wide from shock as she watched Corey continue to walk, was standing at the ready. Betty was yelling at us right up to the threshold of the garage door (a distance of 10′). When she reached the door I called out, “Corey! Stop and look at me”…I was standing at the bathroom door…”you just walked by yourself without me near you”! She had no response, just a little smirk.
Caitlin helped her step over the lip of the door and had a hand ready on the gait belt as Corey descended the ramp in the garage…Betty was still complaining. Corey stood at the threshold of the garage/driveway as I walked ahead of the girls to open the car door. Corey slowly walked forward, moved to the left of the passenger door, turned to back into her seat, leaned against the seat, handed Caitlin her cane, reached up for the grab bar, lifted both legs into the car and spun herself into place. Caitlin directed, “put your seatbelt on Corey”…we then watched her reach, grab, cross her body and securely clip the belt…We didn’t help her or have a hand on her belt.
Caitlin and I were in awe, we literally had our mouths open. Corey was bewildered at our reaction. When we tried to tell her why we were shocked, we both cried at the joy of what we witnessed!
Day in, day out…fight after fight, it’s moments like this, moments that we always hope we’ll experience but secretly doubt from the fatigue of waiting for them for years…and then it happens…when we’re worn down and ready to lose it…another step forward!
You know what this means? Betty’s our new best friend and we just have to keep pissing her off…xoxo
5yrs; Day 1894 – GoBabyGo neuroplasticity
Hi Everyone,
The GoBabyGo Cafe is already proving the theory neuro-plasticity will advance given immersion in the workplace environment.
The last two weeks have been subtle yet huge accomplishments for Corey.
Devina has been focusing on Corey walking within the Cafe (supported by the harness system) without her cane and without holding onto the counter tops as she moves between stations. She framed it as a personal challenge. ‘How many steps do you think you can take without holding on to anything’? That’s all Corey needed…
Trial #1 last Wednesday = 10 steps
Trial #2 last Thursday = 43 steps
Trial #3 last Friday = 101 steps
Trial #4 this Monday = 111 steps
Trial #5 yesterday = 205 steps
Another goal: increased use of her left hand and arm incorporated in daily tasks. So far this week Corey lifted a gallon container of ice cream up/out of a freezer chest. One of those times she yelled out to me in excitement, “MOM, I just pulled this out with my left hand”! Her face was amazing; I don’t think her smile could have been wider.
M – did you surprise yourself?
C – I DID! I didn’t know I could do that!
Yesterday, Caitlin drove Corey to the Cafe.
C – “Caitlin, LOOK”
(she held up her right hand, she was wearing a glove. Normally that is not a big deal for us because she has figured out how to shimmy and wiggle a glove on her right hand using her right thigh and teeth)
C – “I put this on using my LEFT hand”!
Another highlight from yesterday’s shift; Corey used her right hand to shake open a plastic pastry bag. Using her left hand, she reached into the display case to pick up/remove and package a blueberry muffin. She repeated this task 3 times (without mutilating the pastry). She turned to Devina and said, “my mother is not going to believe I did this on my own”! Caitlin was more than happy to be the witness for her achievement.
This past weekend, Jackie invited Corey to have a sister’s day (giving Caitlin and I a chance to spend the afternoon together). The girls made dozens of Christmas Cookies. Jackie was very impressed with Corey’s improvement in walking, standing and use of her left hand; in fact she credited Corey with 90% of the mixing, molding and baking process. With Jackie’s grandmother’s recipe and Corey’s help, they were delicious.
Although we are over the moon about this opportunity, Corey’s filled with mixed emotions. Her anxiety has actually heightened rather than lessened with this experience. She has been short tempered, more argumentative and seems to be perseverating more…fixated on one thought as she has multiple small temper tantrums throughout the day.
Her memory of the Cafe is inconsistent. Although she has been working there 3-4 days a week, she doesn’t remember it or the people she works with once she’s left the building. We make a point of using her daily accomplishments to try to comfort her and help her with her recall. Our examples and replay of video doesn’t seem to comfort her.
We believe that subconsciously, the experience is making an impact and the anxiety is heightened due to the disconnect in short term memory. Her emotional response about the mere mention of the Cafe is based on her fear of independence. As much as she wants to be ‘doing things on her own’, she’s terrified to be ‘on her own’. Like a toddler being separated from her parent, she hasn’t developed her sense of autonomy and she’s not emotionally mature enough to feel empowered. All of this is due to her short term/long term memory loss. Sadly, some days it’s been feeling more like regression than progression for us.
We are trying to practice and develop new strategies to help her but we could use a few prayers. Caitlin and I are working hard on reassuring her but it is a daily fight and struggle. Please pray for Corey’s anxiety to lessen, her short-term memory to strengthen and her emotional maturity. Please add a few extra prayers for Caitlin and I. Our strategy is to use comic relief and a tag-team approach to step-off the hamster wheel. As I’ve said for years, “when we stop laughing, that’s when you should really begin to worry”!
Everyday is another step forward. The rest is a Matter of Time…xoxo
5yrs; Day 1892 – dedicated to my mom
Today’s post is dedicated to my mom. She passed away 10 years ago on December 6th and today would have been her 90th birthday.
For those of you who didn’t know her, she was a very special woman. Strong, Intelligent, Funny and Caring. There’s a great poem entitled ‘When you thought I wasn’t looking’, I always thought of mom when I read it. By her example, I learned so much.
Mom was a wonderful cook always experimenting with new recipes. When Dad had a business lunch, Mom would ask him to describe the entree he ordered with as much detail as he could recall. The next night, we had her version for dinner. I can remember watching her taste a sauce or gravy like a wine connoisseur. She would let it thoughtfully linger on her palette and tell us the spices the Chef used ( I think she passed her gift to Corey). I knew we had a big family and Mom would always cook extra for left overs but there were several nights she packed the ‘extra’ to deliver to someone she knew who was sick or for the caregiver of that person because she knew they could use a break by not cooking dinner for their family.
I used to get horrific ear infections when I was young. I can remember lying on the couch with my head on her lap and she would stroke my hair trying to help me relax to sleep and wishing she could take the pain away.
I remember her smile and the way her head would tilt back as she would spontaneously laugh out loud. She had a dry, quick wit. As a kid, she was very strict and would correct me if what I said wasn’t ‘lady-like’. As an adult, she allowed me to experience her silly side. I was taken off guard quite a few times by her humor when she would quip a double entendre. “MOM!”, my tone was that of half shock and half laughter, she would give a little smirk and raise her eyebrows with a mischievous glint in her eye. She’d move her pointer-finger side to side, “Don’t you think I don’t know what’s going on”.
Mom and I share the lineage of 7…I am the 7th daughter, of the 7th daughter, of the 7th son. We used to say that meant we were a “good witch”…we were definitely lucky, especially in Yahtzee! Growing up in a big family with a woman that volunteered and chauffeured all my friends and hosted all my parties, she trained me to have an ‘open door’, ‘the more the merrier’ policy to pass onto my children.
Mom had a deep, private, devoted faith. We used to say, Mom would have her prayers answered because she wore St. Jude down to the point he would grant her anything. She was always praying for someone (mostly for one of the eight of us that was causing chaos). She kept mass cards in her nightstand for all the people she knew. She would say, “they still need our prayers, even in heaven”. I think it was her way of remembering them.
There were many times we were out shopping and Mom would anonymously buy an outfit for a young mother or her child. We’d be at lunch and she’d secretly purchase a meal for a young family or someone elderly sitting by themselves. They only knew about their ‘gift’ when they received their receipt at the register.
When Mom had her cancer and it was close to the end, I remember asking her “how do you handle knowing you aren’t going to beat this? Are you afraid? Are you praying”? She taught me even more. “I stopped praying and God is okay with that. People ask what they can do for me. I tell them to pray for me. That’s an important job for them.” “God didn’t ask me, ‘Dede, what day do you want to be born and He isn’t going to ask me what day to you want to die. So, we can sit here and be sad I’m dying or we can sit here and enjoy being with each other, talking and laughing”. “My job as a mother is over. I think my job as a grandmother and a friend is to be the example, It’s not the challenge you face but how you face the challenge”.
I remember walking out of the trauma ICU towards the family waiting room. I had this overwhelming feeling that Mom was sitting in the corner chair. I could even envision the dress she was wearing. Before I rounded the corner, I silently scolded myself, a’come on Marie, Mom’s not going to be there’…she may not have been physically there but I know she was close by.
Even though I can’t hear the sound of her voice, I can still hear her answer when I question myself. She let’s me know she’s with me every time I see the digital clock read triple numbers (a weird thing we used to do) or when I sit on the back deck with my morning coffee and a hummingbird (mom’s favorite) flys close to me and hovers to say hello. And I wouldn’t be surprised, Mom had more than a little influence in leading Corey to the GoBabyGo Cafe.
Mom’s favorite ice cream was Coffee. I think it’s only fitting Corey scoops out a dish for us to share and celebrate today! xoxo
“When You Thought I Wasn’t Looking,” by Mary Rita Schilke Korzan:
When you thought I wasn’t looking
You hung my first painting on the refrigerator
And I wanted to paint another.
When you thought I wasn’t looking
You fed a stray cat
And I thought it was good to be kind to animals.
When you thought I wasn’t looking
You baked a birthday cake just for me
And I knew that little things were special things.
When you thought I wasn’t looking
You said a prayer
And I believed there was a God that I could always talk to.
When you thought I wasn’t looking
You kissed me good-night
And I felt loved.
When you thought I wasn’t looking
I saw tears come from your eyes
And I learned that sometimes things hurt –
But that it’s alright to cry.
When you thought I wasn’t looking
You smiled
And it made me want to look that pretty too.
When you thought I wasn’t looking
You cared
And I wanted to be everything I could be.
When you thought I wasn’t looking – I looked…
And wanted to say thanks
For all those things you did
When you thought I wasn’t looking.