3yrs; Day 1175 – TBI humor
Hi Everyone,
The holiday is quickly approaching and we are looking forward to a slower pace over the next few weeks. Not to worry, therapy does not take a vacation; at least not with me in charge! We have a workout regime we follow when we are not going to Bryn Mawr and our school team is on Christmas break. Corey will welcome her normal therapists back with open arms after Mom’s ‘vacation boot camp’ is in full swing.
We are still working on culinary therapy which incorporates Corey practicing her balance by standing independently at the stove as we cook meals together. She loves being in the kitchen. Today she made her own grilled cheese sandwich and “nuked” the chicken soup for lunch. I brought her over to the table before I plated her dish and she was very disappointed she couldn’t do it. In her mind she can move about the kitchen and carry everything to the table on her own. I assure her someday she will.
Tonight we began wrapping gifts. Using her right hand she handled the scissors to cut the paper, ripped the tape and applied it to the gift (I was her left hand). As we were wrapping she asked, “do I get presents”?
M – yes but I can’t wrap them in front of you
C – don’t worry mom, I know how to play the game. I can see them but pretend I didn’t.
C – but really…I won’t remember anyway
She cracks me up sometimes!
Time for Mrs. Claus to get back to the workshop. Enjoy your weekend all, xoxo
3yrs; Day 1173 – How can you offer comfort?
Hi Everyone,
I was asked to speak about how to comfort someone when tragedy strikes. I can’t speak for others but the following thoughts best describe my personal experience.
Don’t hesitate – go ahead and reach out. Send a note, a card, an email or leave a voice message saying, “I just want you to know I’m here for you.”
Do hold their hand and cry with them.
Bring them food, gift cards and Kleenex and listen, really listen to them when they’re telling you just how broken they feel. Don’t try to fix it. Just be there.
When horrible things happen, what the person really wants to know is that people love them and will be there for them. They want to know they are not alone or forgotten.
In the days following a tragedy, don’t talk about a silver lining or how great things are going to be once they get on the other side of whatever it is they’re facing, but do hang on to all that hope and faith and optimism. Hold it in your heart for them; they may not be ready or willing to talk about it. Someday, when they are emotionally ready to receive it, it might help them down that long road of recovery.
Don’t get into deep discussions about God’s will, destiny or karma. Tragedy brings shock and terrible pain. Our whole world has changed and God’s role in that may be undefined and unresolved. Actively pray for the wisdom to think clearly as they sort through an avalanche of facts that will require life changing decisions. Taking on the responsibility of prayer for them is one of the greatest gifts you can give them. It will give them time to process, heal and grow.
During, and after, a tragedy has happened all that is needed is love, hope and quiet strength. For now just love them and be there in what ever way you can, xoxo
3yrs; Day 1171 – from Corey
Hi Everyone,
Three years ago we were told Corey would heal but it would take time. One of the lessons I’ve learned throughout this journey is Time is Relative; it is what we make of it.
We must come to see that human progress never rolls in on
wheels of inevitability. It comes through the tireless efforts
and persistent work of men willing to be co-workers with God,
and without this hard work time itself becomes an ally of the
forces of social stagnation. ~ Martin Luther King
As the saying goes ‘time heals’ but truthfully its living, striving and persevering through our challenges that things are made better.
Time is not our opposition, it’s our workplace. Focus and effort is our second hand that propels us forward. Now is the only time we have. Our perspective and what we do with that gift determines our path and outcome. We must expect the best of ourselves and never relent to the ‘supposed’ boundaries of time.
Corey was very upset today as we traveled to Bryn Mawr. In a moment of clarity she shared, “I’m afraid I will not be all the way better and I am most afraid of how long it will take”.
I was very honest with her, “Inside I am scared of that too. But on the outside, I only let myself think of what you could be. I don’t know how long it will take. We never thought you would be doing what you can do today! Imagine if we both thought it would take too much time to get better and we gave up? Today is going to get us to the tomorrow we want”.
Check out our photo gallery for the new picture entitled, “Matter of Time”
xoxo
3yrs; Day 1166 – 1minute, 45 seconds
Hi Everyone,
Today’s moments;
Corey stood at the island, measured a cup of hard chocolates, turned to step towards the microwave, entered the time needed to melt the chocolates, then stepped back to the island to fill the xmas mold. Cari, our OT, placed the mold in the freezer to set the candy. Corey removed the pieces from the mold, trimmed the edges with one hand and placed them in the Santa candy dish for dessert. We better call Sue and tell her Corey’s getting ready to take her job back at the candy store.
Later in the afternoon she and Jen, our PT, began their exercise session walking from the kitchen to the living room. Corey now faces Jen as they hold their hands out in front of each other to walk (I spot her from the back). The ladies worked on some ankle and leg stretches and stood in place to practice balancing. Corey beat her best time…One minute and 45 seconds standing independently! I think Jen was the most excited as she counted off each second. She has been with Corey since June of 2011. I love to see our team share in Corey’s accomplishments. We are so fortunate that they feel as vested in her recovery as we do and sincerely share the joy we feel with each new first.
In closing, I’d like to ask for specific prayers during this holiday season. Please pray to restore Corey’s short term memory and lesson her anxiety and fear. Please pray for our continued stamina and patience so we can continue to be creative in helping her learn how to communicate with us, xoxo
3yrs; Day 1165 – from Corey
Hi Everyone,
We are lucky to have an overnight nurse tonight (first night since last Thursday) so this is going to be a quick post ~ I can’t wait to go to sleep!
First of all, thank you to our neighbor and our church angel that came to help me with the snow removal from today and last Sunday’s storm. I can’t tell you how much we appreciate your help!
Snow days can be fun and I wanted to share 2 funny moments with you. Corey and I started to pull out some decorations for Christmas. This will be the first year I will truly decorate since the accident; including a tree!
It’s rare that Corey sleeps, let alone naps during the day but today was an early gift for me, 45 minutes of silence! I sat near her afraid to breathe too loudly in fear I would wake her. It reminded me of when we finally got the babies to sleep after hours of rocking, then trying to sneak out of their room without the floor squeaking.
Corey must have been dreaming (another rare occurrence). She awoke and instantly started a full conversation.
C – Mom, we have to call Mr. Nutt (our neighbor and mechanic) and ask him which car has the greatest turnover.
M – What? Why do you want to know which car has the greatest turnover?
C – Semi conscious, “I don’t know”, she paused, “maybe we shouldn’t call”
After Corey was awake for some time I told her I thought she was talking in her sleep.
She began to laugh and asked what she said. I repeated the phrase.
C – Laughing, palm up, shrugging her shoulders, she asked, “What! Why did I ask that”?
M – “I don’t know, I think you were dreaming”
C – “Well mom, now that I’m in my right mind, I do not want to know that”
C – “Maybe I was in my left mind when I asked you”?
We both laughed out loud.
After dinner Corey touched the scar on her throat. She asked where it came from. I reminded her of her accident and her tracheotomy.
C – “Mom what happened to me”?
M – “You were in a car accident”
C – Touching her head she asked, “Did they hit me in the right spot”?
M – I laughed out loud, “Yes! The exact spot that erased everything”!
C – “So basically it was the wrong spot…”
Laughter truly is the best medicine! I love when we are having a difficult day and Corey cracks a joke or says something from such an innocent perspective. These are the moments we wait for every day; our daily reprieve.
Happy dreams, xoxo
3yrs; Day 1164 – TBI butterfly
Hi Everyone,
Recently our posts have not only been difficult to write but read as well. Despite our daily challenges I still believe its progress.
I found a quote, ‘Just when the caterpillar thought the world was over, she became a butterfly’. Coincidentally the TBI “mascot” is a butterfly. The metaphor of the caterpillar turning into a butterfly represents a time for transformation – new beginnings and paradigm shifts.
We all can relate; here’s this happy little caterpillar just going about life, its only concern was eating the current leaf or two before her. One day, without warning, she gets wrapped up tight in this dark isolated cocoon. She’s shut away from the outside world, trapped in this dark inescapable place going through painful changes. She’s frightened, alone and disconnected from the world. No one can recognize her within her shell. She misses the sunshine, she misses life. It must feel like her time in that cocoon is an eternity. And just when she finally thought she had lost hope of ever getting out, she slowly begins to realize that the pain is lessening. She realizes she’s changed, transformed into something she never was before. Still scared she gnaws her way out of that cocoon. When she finally steps into the light, she realizes she’s become a beautiful butterfly. She’s no longer bound to crawling her way through life. The pain she felt actually gave her knowledge, life experience and energy to transform her self into some one new. She opens her wings to soar.
Haven’t we all experienced certain times in our life when it seems as if we are thrown off course and forced to come to a halt by unexpected obstacles? These challenges can last a few months, a few years and sometimes a couple of decades.
Gradually day after day, lesson upon lesson, multiple frustrations and shedding many tears, we keep working toward something that doesn’t always seem plausible and few can understand. We all have days that reflect the pain of transition but we must also remember; all growth requires some pain. Patience and understanding is called for in the story of the butterfly’s metamorphic transition. While many of us understand how paradigms change few of us possess the patience.
The butterfly story gives us faith in change, renewal, strength and rebirth. It teaches us that all things happen in their own time when our lives are ready to receive what life has in store for us, xoxo
3yrs; Day 1160 – from Corey; profound insight
The following entry is the result of Corey hearing a news broadcast about Nelson Mandela passing away. She asked many questions about who he was and what happened to him. She then asked to write something…
Hi everyone its corey,
I heard something tonight and I realized it was really the way I am. Nelson Mandela was a prisoner. Sometimes I feel like I am a prisoner in my own body because of my brain injury. Nelson Mandela read something while he was in prison that he used to stand up when really all he wanted to do was to lie down. It was a poem about not giving up; which I can not find any more true because after all that is my motto to never give up and never give in.
I have been afraid and really I think he was too.
he taught us how to turn things around and not be trapped by what we are going through.
Everyone that’s reading this I hope Nelson Mandela inspires you to get through your day to day life especially when you are afraid, xoxo
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Invictus (Latin for ‘unconquered’)
By William Ernest Henley
Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
3yrs; Day 1159 – memory loss is brutal
Hi Everyone,
We only had 12 bad hours today…I’ll take it! It’s an improvement over yesterday. Corey is trying to verbally express her anxiety instead of lashing out. Today she identified and labeled her fear.
The following examples can best describe what she deals with;
Today Corey rode shotgun, our nurse sat behind her as we traveled to the hospital to get blood work. I parked, went to the back of the car to get the wheelchair as Denise opened Corey’s door to help her out of the car. Corey flipped because she didn’t recognize Denise, didn’t remember Denise was in the car and had no idea where I was. Several hours after the procedure she asked why she had a bandaid on her arm. I reminded her of our trip to the hospital. She was very upset, “why does everyone remember me getting blood taken and I don’t? It happened to me and I don’t even know it”!
We shared Corey’s latest walking accomplishment on monday. What we didn’t explain in detail was the personal interaction and anxiety to make that achievement happen. Corey was walking and interacting with Natalie for 20 minutes. When Natalie helped her onto the NuStep Corey flipped out because she didn’t recognize where she was or who Natalie was.
Despite the aforementioned examples, there are moments that Corey is spot on and understands everything around her and she will recall new information without any verbal cues. For instance, Corey recalled the details of a phone conversation from Monday with my Aunt Kay! It’s moments like this one that shock and confuse me.
Memory Loss is the most common side affect of a TBI. The cognitive gains Corey has made is nothing short of astounding. I am told it can get better, should get better, will get better…I hope “they” are right. Corey’s fear is real and I don’t blame her. Can you imagine being present yet not knowing where you are or who is with you? Not knowing whether you ate today or how you got dressed? What is it like to Laugh and interact with family one minute and when they leave not having the memory of the visit to comfort you when you miss them?
The bad news is memory loss is brutal. The good news is I swear it’s getting better! xoxo
3yrs; Day 1158 – Caregiver’s mantra
Hi Everyone,
I know you all understand this journal shares the highlight of our day and I, too, like to focus on those moments but once in awhile those 5 minutes don’t exist on a given day.
Today was one of those days I am grateful is over! We had a rough overnight and Corrine moved in at 6am; there has been no sign of Corey anywhere.
Although Corey continues to make incredible strides in so many areas, her memory loss remains our greatest daily challenge.
Its futile to argue or reason with her when we face a day like today primarily because she doesn’t remember her reactions nor the topic that created her outburst. We just have to ride the wave of screaming tirades and watch the clock.
This was a day my mantra alternated with ‘I love my child, I love my child, I love my child’ … ‘I will not sell her to the gypsies’ … ‘we can do this’ … ‘breathe, exhale, breathe deeper’ … ‘remember 50 first dates’ … ‘distraction, distraction, distraction’ … ‘here we go again’ … ’24 hours, I can do anything because today is only 24 hours’.
Some people may be concerned that I talk to myself through my mantra’s…and yes, I also answer! When days are hard like today I remember the blog entries from other TBI families. Families with years of experience managing this “new normal”. Entries that aren’t always positive yet still hopeful and helpful in that they validate the emotions we cope with daily.
What is normal?…
the second hand moves yet time stands still.
standing in the middle of the room,
the walls are spinning,
the window reflects the change in seasons,
the pages of the calendar tear one by one drifting to the floor.
Where’s the door?
Close your eyes
Breathe in
Feel the energy both positive and negative
Exhale
Open your eyes
The world is still moving,
no need for a calendar,
no need to count the minutes,
look within
use perspective as the key,
unlock the door to your heart,
step out of the chaos,
remember…it’s okay to ask for directions, xoxo
3yrs; 2 months PT, OT, Speech
Hi Everyone,
Corey’s “tricky thinking” worked! She tried something new and achieved another first.
We arrived for our 11am session to find our speech session was switched with PT. Corey was NOT ready and NOT happy about the change but a few quick conversational distractions later, she was walking down the hall using her new methodology ‘pretending’ it was the aisle of the church for JohnPaul and Jackie’s wedding; thank goodness for Jackie the aisle of their church is not as long as the path to the out-patient gym.
We arrived at the gym and redirected Corey for a second time to workout on the NuStep bike. More creative conversation helped to get her into position. She was furious at one point which worked to her benefit. The angrier she got the faster she peddled, 15 minutes later she was finished (thank goodness it was a recumbent bike. If that bike actually had wheels she would have been half way home at the pace she was keeping). In case you were wondering, Natalie and I stay calm throughout Corey’s outbursts continuing to give direction and maintaining casual conversations as if we all were getting along.
We were 30 minutes into the hour session as Corey dismounted the bike, walked back towards the Neuro Out Patient center when Natalie decided to give Corey a break. As Corey rested, she stayed with our tech, I ran to get her bag and Natalie stepped into the rehab supply closet. I returned within minutes. I approached the women when Corey pointed to Natalie and yelled, “SHE (pointing to Natalie) wants to try something new and for the record, I am not happy about it”! Natalie was holding a forearm cane. (and for the record, I was thrilled Corey verbalized her emotion instead of Corrine kicking and screaming…a major step forward for behavioral rehab)
A forearm cane has a cuff that hugs a persons forearm as they grip the handle for support. Natalie explained that the cane is like a T-shirt. We just want to try it on to see if it fits and how it feels. If it doesn’t work, no big deal. I was thrilled. This is exactly what I had hoped Corey could progress to but never thought it could be this soon. I was very excited and explained that this cane was an advanced step beyond her double arm platform walker. Her hard work actually helped her advance beyond the traditional step down walker to move directly towards a cane. “I can’t WAIT to see you walk with this”! Next thing we knew, she was up ready to try. Natalie cautioned Corey that it might not work the first time so don’t get upset if it didn’t. That’s all she had to say… Corey held the cane in her right arm as Natalie held her hips to assist her left side and left leg and off she went as if she was strolling in a park. She walked 30 feet! Then it was my turn to walk with her; Corey did well but guess who has homework before Thursday? Not Corey, I’m the one that needs practice walking beside her now.
Corey couldn’t wait to text the kids. JohnPaul wrote back ‘Soooooper GOOD JOB and not to worry about the wedding, I’ll carry you if I have to’. Corey’s response, ‘Ok but I want to keep walking down the aisle as a goal in my head’. She’s determined and just wait, she’ll do it!
Once Corey and I get our new moves perfected we will have a video for you. In the meantime, we will continue to exercise our “tricky thinking” and practice walking down the imaginary aisle, xoxo