You were born twice already,
Lived two lives,
Separated by so thin a line.
Both different and grand,
Golden and sincere,
Pure and kind,
With maturity of an adult,
The compassion of a child,
And the smile of those with the biggest hearts
You have lived an inspiring 18 years,
And spread your spirit for 5,
No one is happier than I to have you in their life
We do not worry as you go off into a dark world,
As we realize that you will make it so very bright.
I want to make a difference in someone’s life. I did a motivational talk in Boston, Massachusetts. Before the talk a participant came up and said that his son was similar to me because he had a stroke after a spinal surgery. The son had the stroke two months ago; he is twelve years old. So after the talk my mom and I traveled to the rehab hospital to visit the man’s son. It was so nice. I think I made a difference in their lives. I gave them hope to keep moving forward.
A few months later I went to get my hair cut at a salon. I decided to give my long curly hair to Locks of Love so another child can have my hair as their own. I did it for my cousin who had Aplastic Anemia, she was only 8 years old when she was diagnosed. She went to New York City to get a bone morrow transplant and chemotherapy for one year. She is back home now and in remission. I did it for her. Donating my hair won’t change her life but it is in honor of her and it might just help someone else.
If you can change one person, it makes a difference. My mom and I went to the hospital to see the boy because we knew it would help. We had planned to go sight seeing but once we learned about Emmett, there was only one place we wanted to visit. I gave away my long curly hair because I wanted to make a difference in a sick child’s life. To make a small change for someone I will never meet. It is an amazing feeling.
Skiing and dancing are very similar; they are both hard and take a lot of skill to do. Some people say you have the skill or you don’t. But for me, I’m the opposite, I can’t dance to save my life but I learned that I am not that bad at skiing. I still think the athletic ability skipped a generation though. I learn over time that it doesn’t matter what people think, if you like doing it just do it such as dancing for me. My family went to Colorado for skiing and my parents found an adaptive skiing program for me. The instructors and the volunteers were great with me. I enjoyed laughing at my “mess ups”. I learned to ski and I just had fun doing it.
Wow! I learned to ski five years after having a massive stroke. I needed the support of an adaptive ski instructor and the volunteers and my skis needed to be connected at the tip to control old righty but I skied! That should make anyone dance …
I know we don’t get along very well and I feel like we are slipping away too quickly. I also think that you are like a virtual image that can never come true or like a dream that becomes a terrible nightmare that haunts me while I’m sleeping. Everybody has something that is challenging to them, for me mostly it is you that always brings me down. We could do so much together like tying my hair, eating, and brushing my teeth. But with you I feel incapable of doing the simplest of things. What I can’t seem to do is to tell my damaged brain that I have you and I have to use you. My brain sometimes thinks that I don’t have you and it is like you are invisible and cut off from my body. Sometimes, in a sense, you are paralyzed because my brain is not recognizing that I still have you. I really want to work something out between you and me but right now you are not human to me or anything for that manner but a lump that moves somewhat infrequently and just carries weight around. Sometimes I do think we can work something out and be together, someday. I still need you. Don’t give up on me and I won’t give up on you.
When I went to the hospital for my surgery, I felt scared but also reassured; like although it is a scary and frightening place it also helps me to know I am in good hands. When I was waiting in the surgery waiting area, I didn’t know how to react, I was overwhelmed with losing control and not being strong.
I knew that I had to have surgery but I didn’t want to go. I thought I would be afraid about having another stroke but Mom kept telling me it was not a major surgery – it was in my mouth not my brain and I would be fine. So I really wasn’t so concerned about having a stroke. It was more like I was thinking about what other negative affect I might have from the surgery.
My family was really worried about how frightened I would be. Jessica stayed all day and really helped me to feel better. She didn’t know what to do so she just kept rubbing my arm and saying, “comfort” over and over again. It wasn’t too helpful in itself but because it was so weird, it actually did take my mind off of being scared so maybe she did know what to do after all.
So finally it was time to go to the operating room. My surgeon and anesthesiologist came to see me. That was a difficult reminder that this surgery was really going to happen. They tried to make me feel calm but all I could think about was “why me couldn’t another person take have my surgery instead of me?”
Then the nurse gave me an IV and drugs to relax and before I knew it the nurse was singing, “Let it Go” and I was joining her! When I reached the operating room I felt frantic – there were people everywhere telling me I would be fine and then before I knew it I was waking up and the surgery was over. As soon as I woke up I couldn’t stop talking — I guess I was making up for the last big surgery when I woke up and had lost the ability to speak after my stroke. I survived surgery and I could talk!
I made it — I had a surgery without complications. My doctors and nurses were great. My sister gave me a pig. I named him “Wisdom” for my lost teeth. I lost my teeth and found my Wisdom. I have Wisdom and I can survive surgery!
Alex began her journey as a motivational speaker in earnest at the beginning of this this past school year and it has been incredible. The book that Jessica and I wrote about Alex was released in October. Since then, Alex (and in many instances Jessica along with her) has shared her story and suggestions for change with teachers, teacher candidates, doctors, medical students, moms, religious groups, students preparing to be social workers, and the list goes on. She has spoken to small groups of 15 to large groups of 300. In every instance – the response has been overwhelming. She is changing lives. She is determined to use her experiences and her motivation to change the world.
Our measure of her success is based on the reactions of those Alex touches with her message. The emails and letters we receive from those who have read our book focus on the courage that Alex and our entire family had in the face of such difficult circumstances. These readers find inspiration from our journey. You can read their reactions in our Amazon reviews (better yet – you can complete your own if you have not done so already…).
The emails we receive following Alex and Jessica’s talks focus on how participants walk away motivated to live their best lives. People are convinced that if Alex and our entire family can “make lemonade from what could be described as lemons” then so should they. There is always a bright side – it often takes strength, determination, and resilience but one can get on the right path.
I am not surprised by these reactions. What does surprise me are the opportunities that have opened for Alex to reach more people and that Alex has the courage to take the opportunities and even to seek more. Her first year began with a presentation at the University of Central Florida for teachers and teacher candidates. Then she was off to provide a major session at the Florida Council of Teachers of Mathematics. That went so well that she presented at a regional teacher education conference that was held in Florida. In the midst of providing several other motivational talks in Florida, Alex headed to New Orleans to present at the National Council of Teachers of Mathematics Annual Conference. I would say that this was a turning point – this is where things became truly surreal.
As result of the impact Alex left on participants at that presentation, she has been invited to provide keynote presentations at major conferences in Las Vegas, Nevada and Atlanta, Georgia among others. Just this week I booked Alex’s flights to Anchorage, Alaska to share her message with high school teachers there.
Each time Alex presents she gets better – the more distinguished and larger the audience, the more she shines. Due to Alex’s own motivation and her ability and willingness to motivate others she has found a purpose in her struggle. She will change the world one person at a time. We are no longer asking how will Alex leave an impact or why is this her path but rather what’s next? Perhaps a movie…?
I am having surgery Friday. I shouldn’t be scared because it is only wisdom teeth we are talking about, but inside I can’t stop myself from thinking about the last time I got put under (the horrifying) anesthesia. When I think about all the things that could go wrong in the operating room, it makes me feel uncertain. Last time I was under I had a major stroke but that was brain surgery, this is only wisdom teeth. What I don’t like is to feel like I am losing control and that makes me scared more than anything.
The way I cope with feeling all these anxieties is I use these strategies, one of them is listening to my strong and motivating songs, another is writing and getting my thoughts down on paper, and another one is just talking to my mom. As weird and childish as it seems it truly makes a difference.
The process of publishing A Stroke of Luck has been interesting on so many levels. Even though I give talks around the country to what amounts to thousands of people per year, I am a private person. My personal time is spent with my family – privately. So what possessed me to write a book about everything private – and then publish it?
I’m not sure I can answer that one with much more than, it needed to get out there. I needed people to know our story for so many reasons – so that they would understand, so that they might take on a new perspective on life, so that they could be thankful for what they have, so that they might learn from our situation to help their own, so that they might welcome Alex into their organizations to provide motivational talks. So many reasons, but still, I am so private.
Prior to launching the book I wasn’t on Facebook, I didn’t blog, I had never even seen a tweet (as far as I knew). I didn’t want any of those things, I really wasn’t interested in being “found.” Sure I wanted my work related to teaching mathematics to be read and used, I wanted to provide professional development far and wide – but that is different – that isn’t private.
I worried that the book would be published and we would be thrown into the spotlight. What would that mean? Would a movie be made about us? Would we be on television? Would we be in the paper? Would we be on NPR? I worried about all of this.
Then I worried that it didn’t happen…
We published the book and sold about one thousand copies. We created a Facebook page for the book and about one hundred people “liked” what we posted. We were retweeted, but not often. We blogged and got a few followers. We definitely weren’t “found.”
Then I desperately wanted to be found…
My mom suggested we get listed on Bookbub.com. We did, and we were found! We sold over 1,300 books in one week! It was exhilarating. People found our website and emailed me with similar stories. People emailed with questions about what helped Alex be so successful with her rehab. People emailed with requests that Alex, Jessica, and I give talks within their organizations. It feels great to help – there are so many ways that Alex’s story and how are family handled it can help others. We even made a video to help share the news about a rehab device that is bringing us great results (https://www.youtube.com/watch?v=h1Fj9rIADsY). We made the video in our own home. It doesn’t seem too private, it just seems right.
Now I don’t want to stop. I just KNOW that Alex’s story can and will help others if they can find us. So the question has changed. I am no longer asking, what will happen if we are found? The new question has become, how can we continue to get found?
Please help us by sending ideas through comments here or via email. Better yet, share our story with others. This is so new to us. What should we do next? Please help us get found.
The song “The World’s Greatest” by R. Kelly is very inspirational to me and I want to share why.
Everyone is unique and everyone has something they want to change. Make your own path and follow it. Everyone is their own hero, their own perfect star, their own rainbow, and their own kind of hope. Be PROUD every day, every minute, and even every second because every day you live is a miracle, a gift, a way to experience the sun rising and setting and the colors in the sky. It is like our life sometimes DARK and dreary but every day is a new opportunity to make life better and BRIGHTER. Everyone is The World’s Greatest in their own way and that is beautiful!
One week ago we asked for people touched by Alex’s story to send us their greatest take away regarding Alex and her story in 20 words or less. Thanks so much for your heartfelt response to What is your greatest take away?
It is clear that Alex and her story have touched many lives and we are grateful to you for taking the time to share. We were overwhelmed by the number of emails we received. Alex is highly motivated to change this world for the better and to support children who are struggling. This year we will look for ways she can use what she has learned from her ordeal to help others. We welcome your ideas related to this endeavor.
As promised we are sharing your words about Alex in a Wordle. I should have explained how a Wordle works earlier. Jessica and I created Alex’s Wordle at Wordle.net using the words you shared about Alex. We pasted those words into the app to create this Wordle. A Wordle is like a frequency display in that the words that are used to describe Alex most often are displayed bigger and bolder than the words that are used with less frequency. It helps to get a sense of the themes in what was shared. So here is your greatest take away regarding Alex and her story… thanks again for sharing.
I recently saw Disney’s Frozen and I was struck by the message I found in it related to my daughter’s life. Unlike what is so often the case, this time, when I refer to my daughter, I am not referring to Alex. I am referring to Jessica. I sat in the movie theatre between Alex and Jessica. From the very start of the movie I saw Jessica in Anna. She was carefree, loving life. I saw Alex in Elsa, the protective, fun big sister. Just like Elsa, Alex was taken over by something inside her. For Alex, it was a debilitating illness leading to an awful neurologic condition and ultimately a stroke. In essence, it took Alex away from Jessica in one sweep. Jessica was kept separate from Alex’s struggles as a result of her age and the distance that separated the girls as we searched for cures for Alex. To her parents, this was our only option. We were protecting Jessica, trying to allow her life to go on as normal as possible. We even sent her on vacations with other family members while we struggled to save Alex. To Jessica, we just pushed her aside and away. We did not pull her in and make her a confidant in our battle to save Alex. All she knew was loneliness and the empty place her sister used to fill.
I continue to learn about the repercussions this had on Jessica. To Jessica, she was shut out. In a recent interview we provided for a video about Alex’s story, Jessica was asked what part she played in Alex’ recovery. Jessica didn’t know how to answer. This struck me – to me, her role was crucially important in bringing Alex back to us. To Jessica, she was still sitting on the other side of the door – locked away from her sister, from her family.
How many other siblings of critically ill children feel like this? How can we pull them in? It just might be their acts of unselfish love that can save their siblings. However, we need to be sure that in the process, they are not frozen to the point that they cannot recover themselves.
While we were fighting to save Alex, my sister-in-law and her family were fighting to save her daughter, Joely. Joely was diagnosed with Severe Aplastic Anemia shortly after Alex had a stroke. She was 7 years old. Jojo and her 8-year-old brother Jack were whisked away along with their parents by medical transport to prepare for a bone marrow transplant. Jack was to be Jojo’s bone marrow donor. There was not room for their 11-year old brother, Hunter, to travel in the plane with them. He was left behind. Left behind the closed door so to speak. Fast-forward three years and Jojo is back at home and in school. Hunter is starting a foundation to support connecting bone marrow donors with their matches who desperately need the connection. Jojo is our miracle but Hunter is our unsung hero.
This brings me back to Disney’s Frozen. Is Frozen just about Elsa or is it about Anna and her relationship with Elsa and her family? To me, it is about my daughter Jessica and all children in the shadows of their critically ill siblings. It is about them as individuals but also about fostering their relationships with their siblings during trying times. I know that I will spend a lifetime trying to warm Jessica’s heart and help her to know how much I value her as the amazing person she is and as a precious member of our family.
I provide mathematics professional development around the country and I often close my sessions with participants sharing their greatest “take away” from our time together. In those types of sessions a take away might be that we need to support students to persevere in solving problems, share their solution strategies, or make sense of one another’s thinking. It is helpful for participants to put into words what they will take with them from the workshop. It is important to me as a way of determining if my goals for the participants were met.
As we move toward the end of 2013 and prepare to begin a new year, I’d like to share with Alex how her story has impacted the lives of others. She so often shares how other people are important to HER. Now I’d like to know what YOUR greatest take away is from Alex’s story or, if you have been fortunate enough to attend one of Alex’s presentations or even if you know Alex personally, your greatest take away from knowing Alex. We are asking everyone who knows Alex or Alex’s story to share their greatest take away regarding Alex in 20 words or less. We will collect these “Alex Take Aways” for one week and then post them on our blog and FB page on Friday, December 27th. You can email your take away to firstname.lastname@example.org or include it here as a comment. I will compile what is shared and make a Wordle to post on this blog. Be sure to follow the blog by clicking the FOLLOW button on the upper righthand corner of A Stroke of Luck’s webpage so you will be alerted when the Alex Take Away is posted. Please help us spread the word.
We are so glad to hear that these suggestions are helpful. Please share your comments here on the blog so others can benefit from your perspectives. Our next two lessons learned have to do with focus and commitment.
3. Go back to Kindergarten – We are reminded of Robert Fulghum’s book, All I really need to know I learned in Kindergarten.” In it he talks of needing to live a balanced life that includes learning, playing, moving, self-care, getting rest, and being good to others. Alex’s successful rehab involved all of these. We could not just focus on PT and OT because then Speech would decline. We couldn’t just focus on all three because then academics would suffer – rehab is much more than what we do with professionals (although that is very important too). When we tried to overdue therapy and academics Alex would not get enough rest or would be too tired to eat or would not feel like she was living. Alex enjoys art and music. We put her in art class – that helped her left hand to become more useful as the dominant hand. Playing piano helped Alex to have purpose for her right hand as well as movement memory from her earlier days playing piano. We see everything as therapy, even the types of vacations we take and the choices we help Alex make for her electives in high school. We insure that she has different sorts of interactions with many people and in many environments to help to stimulate her brain in different ways. We continue to Find the balance and reflect to be sure we are not neglecting important components of rehab in our recovery efforts.
4. Where do you find the time? This isn’t minor. People often ask about how we found and continue to find the time for all that we did (do) with Alex. It is a tremendous commitment. Truly, Marc and I have devoted almost 100% of our time outside of work to rehabilitating Alex. This was a choice we made early on – to push forward as long as we continued to see progress. It became a cycle. At first we thought we would need to live like this for one year, then it became two. Even now, almost four years after Alex’s stroke – we have readjusted to think about maintaining this level of effort for seven years, or possibly indefinitely. We do not watch television or relax in ways we hear about from others. We tag-team our efforts with Alex. Marc makes dinner while I help Alex with homework and work with her on reading and writing. Marc works with Alex using the HandTutor and ArmTutor while I clean up from dinner. Even during dinner, we encourage Alex to cut her own meat using special utensils for stroke victims. We are intentional about including Alex in conversations during dinner so she practices conversational speech. It is a family commitment – it impacts us all. We will need to be cognizant of taking care of ourselves soon so that we don’t burn out. At this point, the returns on our time are keeping us going.
In February it will be four years since Alex’s stroke and 6 years since the ordeal began. As we move into the holiday season, Marc and I find ourselves reflecting on the entire process and discussing what helped our story to be one of inspiration – our Stroke of Luck so to speak. We started compiling a list of what we learned and how we applied those lessons with positive results. Our plan is to share our list with you in parts so that you can make sense of it in “bite-size” pieces. We welcome comments, suggestions, and questions. We hope that you will pass it along to others who might be helped.
Here is our first installment:
1. The Myth of One Year – Over and over again we heard that we could expect most of Alex’s recovery to occur during the first 6 months and almost all of her recovery to occur within the first year following her stroke. This caused us to panic as the months ticked away. Fortunately, we did not let up on our efforts. Alex continues to improve and “recover.” During this fourth year of recovery, we have seen impressive improvements both mentally and physically. Alex’s reading fluency and comprehension have improved – she is now able to read to learn rather than just learn to read. She is writing faster and better. And her speech is much more fluid with improved vocabulary. Her physical improvements include a better gait when walking. She can even “run” for short distances on the tennis court. We are most excited to report that she is just now beginning to use her right hand for some daily living tasks. The message here is that you cannot give up. Do not place a time limit on your rehabilitation efforts. Rehabilitation centers will release the patient from therapy. This does not mean that you as the caregiver can stop working for more recovery on your own – even after several years.
2. It Takes a Village – Finding the right rehabilitation center is crucial to starting you on the path to success in supporting rehabilitation. We interviewed and visited several facilities before making a decision. What we found crucially helpful was that we, as the caregivers, were comfortable asking questions so that we understood the motivation behind and technique for each exercise. We functioned as active participants during therapy – this allowed for better transitions to therapy in the home environment in between therapies. We used this information to replicate the experiences with Alex when the therapists were not present. This provided consistency in Alex’s care and rehabilitation. We did this while staying with Alex in the rehab hospital but also when she was an outpatient for rehabilitation. Our goal was always to take the therapy home with us so that we were supporting Alex’s recovery 24/7. This meant that when we were unable to take Alex to therapy, her grandparents took her, and eventually other caregivers. However, regardless of who was with Alex, they took notes and asked questions during therapy rather than sitting on the sidelines or in the waiting room. They would then report to us so that we could continue the same level of care at home. They became part of her village.
We have exciting news! Our website was approved as a nominee for “Site of the Day” by Awwwards. Apparently this is no small feat. This is in addition to being featured on http://spyline.de you can “like” us there too.
The result of these notable distinctions is that people from all over the world are visiting our website and learning about Alex’s message of hope and determination. The shaded regions on the world map above indicate all of the places in the world from which people have visited our site. Pretty exciting. Our goal is to cover the world with A Stroke of Luck. Please help us by sharing our website with everyone you know. We also hope that people will be inspired to buy Alex’s book.
In the meantime, it sure would be nice to win the Site of the Day with Awwwards. If we win, our website will be included in the book, “The 365 Best Css Websites Around The World” in 2013. We have six days left to get the votes we need. Please visit http://www.awwwards.com/best-websites/a-stroke-of-luck and vote for us — of course you will want to give us the highest vote possible.
My mom writes math books, my sister writes poetry, my dad reads about medical stuff, and do you know what I do? I look at the clouds…. Whenever I look at the sky I feel comforted and warm. I don’t know why, I’m not sure it matters. The sky is like my fireworks. Now I want to share them with you.
Hi, just as I promised here is a happier poem and it is about Alex. This poem gives voice to the time from when my sister came home permanently to today. I love my sister and she is really one of the bright spots in my life. I wrote this poem to help capture and share what my sister is really like. I titled it Alex’s color which in it I show is gold. Kind of like her heart… I know – pretty cheesy, but hey, cheese can be gold too…
By Jessica Dixon
Her words dance in and out,
And she weaves a conversation that endows a warm light.
Constantly delivering a heartening smile,
That cracks through the gray shell of meekness.
She is at home among uncountable strangers,
And worshiped by those blessed by her presence,
Her laughter is a symphony of bells,
And is a promise to lighten the burdened,
Where others shrink away she faces with that easy manner,
Until the despicable is beaten by her good-natured heart,
Her eyes sparkle like the silver sea,
That is just a mere glimpse of what is behind,
Her buoyant curls match her nature,
That she bounces back to others,
She is without a need of serious thought,
And she simply is there in the glory of her ways,
My dear sister is like the sunset that radiates its orange glow,
And around her people feel that warm love and joy as well.
As I grow older and away from the events that have forever changed my family I have started to write poetry describing my feelings from the roller coaster of ups and downs that had severely rocked my family during our downward spiral and our return to a more happy atmosphere and life. This has been my way of healing, sharing, and remembering. I hope you enjoy my point of view and deep emotions in this poem titled, “My Only Companions.” I promise you guys that my other entries and poetry aren’t normally dark and especially not as dark as this one.
My Only Companions
By Jessica Dixon
They had imprisoned me within myself.
They had dove into my heart and stole my words,
Silence echoed from where I craved to speak.
I was being suffocated by none other than my own timidity,
They would gradually angle my head downward when anybody approached,
Terrified that I would recognize that I had the capability to express myself,
And their fiery hands trailed my skin until it glowed scarlet, inflamed with heat.
I was being confined within the walls we built together,
Walls that blocked out the heavens, leaving me in shadow,
Walls that I constructed to keep out those bringing sorrow,
So I sat alone within those walls and my anguish,
With only companions, shyness and lonesomeness,
No one else was there to save me from myself.
So this is the first true entry of what I hope will be a place to continue to chronicle Alex’s journey. These pictures were taken this morning at 5:30 AM. You might wonder why in the world Alex would be doing physical therapy at that time – she is a teenager after all!
The question should really be “where” in the world… Alex is doing physical therapy with a therapist in Israel. We continue to try to get more from Alex’s right arm and hand. She lost most use of it during her stroke 3.5 years ago. Our latest venture is with the Arm Tutor and HandTutor. This program is based in Israel. We purchased the equipment (without insurance coverage of course) and we use Skype and a program where the therapist in Israel controls our computer during the sessions. It seems promising so far. I’ve posted a video from Alex’s session this morning on our Facebook page linked to this website.
My husband, Marc, works with Alex on this therapy. Just another example of how it takes a village to help raise a child — we are very fortunate to have a big village
Alex’s school schedule and the zone difference between us and Israel leave no other option but for Alex to have therapy at this crazy early hour. Just another example of the lengths to which Alex goes to recover.