Spencer Fox's Journal
Written Mar 8, 2014 11:42amWhat Obstacles?
Here is a fifty-four second video clip of Spencer making molehills out of mountains.This moving video of Spencer completing an obstacle course was taken by Loren, one of Spencer's Project Walk trainers. I was struck by the fact that Spencer appears alone; there are no trainers hovering near for safety in the event he falls or trips. It shows how much confidence Spencer and Loren have in his abilities. Note the significant improvement in Spencer's balance and gait--he has come so far. And he is not done yet. Spencer is taking advantage of all the rehabilitation he can get before college. He is exhausted--and hungry--every night.Swim With Mike Scholarship FundSpencer is raising funds for Swim With Mike (SWM), a scholarship fund for physically challenged athletes. SWM originated at USC and it sends scholarship recipients to colleges throughout the United States. Satellite fundraising events are held at several colleges, including UCSD.
The SWM scholarship fund has helped many of our friends. Spencer has applied for a scholarship and we are hoping SWM will be able to help him too. In addition to tuition, room and board, Spencer will also have approximately $17,000 of uninsured medical expenses annually--it is challenging, but education is vital.Education equals true independence for Spencer and for most SWM scholarship recipients. These active young people suffered debilitating tragedies through accident or illness, but never let it stop them. Disability discrimination is pervasive in both education and employment; SWM reduces barriers to education.
Thanks to the Crawford Family Trust, right now your tax deductible donation will be matched up to $10,000!! Please help Spencer support SWM by clicking below and selecting "back this project." Donations small and large are appreciated.
Would your company consider a donation? Many companies value education and investment in youth. We can even arrange a sponsorship banner at the San Diego event. Please contact me if you are interested.https://swimwithmike.org/fundraisers/Spencer-Fox-fundraiser/
Spencer will be participating in the SWM UCSD event at the Canyonview Aquatic Center on Saturday, May 3. We invite you all to come. It is a fun, crazy pool party and swim-a-thon with inner tube relays, noodle races and Surf Dog Ricochet. The free pancake breakfast starts at 9:00 and the main event starts at 10:00. This is a GREAT cause.
Thank you for helping if you can.Next Update: College BoundIn the next four weeks Spencer will learn his college choices. He is waiting nervously for results.Fingers crossed!
Four Years and a Miracle Later
Written Feb 1, 2014 9:40am
Four years ago today my son Spencer Fox was paralyzed from the neck down in a snowboarding accident.
Four years ago today ended--and started--in an intensive care unit in Salt Lake City, Utah, with thirteen-year-old Spencer hanging on to life by a gossamer thread, hooked to an overhead canopy of blinking, beeping, life-saving machines. Heart-stopping alarms sounded with regularity; it was every parent's nightmare. After two days we were fairly certain he would pull through, but the prognosis was stupefying: Spencer's broken neck resulted in a spinal cord injury. He was completely paralyzed, a quadriplegic. Doctors said he may never breathe on his own, and likely would never recover movement or sensation. "Never" is a very scary word that we could not accept.
Thus began our odyssey, a long journey defined by experiences that give rise to knowledge and understanding. There is no more apt descriptor. It captures the vicissitudes of our heartbreak and triumph. It acknowledges Spencer's fierce resolve to prove doctors wrong and my own determination to lead my son into a bright but unimaginable future. In uncharted territory, along the way we made mistakes. Occasionally we suffered pain, loneliness and grave disappointment; sometimes we trusted the wrong people. More often we were blessed with knowledge, opportunity, and insight. We were forced to experience the world differently and it gave us a chance to define ourselves anew. We found laughter and life long friends. We learned that love and compassion are thicker than blood. We endured the death of Spencer's loyal service dog Mojo. And through it all we have been carried by Spencer's valor, his funny, pragmatic attitude and unceasing work ethic.
Today I look back in awe and exclaim in exaltation, "Here we stand!"
Here is a snapshot of what luck, hard work, community support, six-rehab-sessions-a-week and four years later looks like for us:
Mobility and Independence
Spencer is driving his own adapted car to school and rehabilitation, no longer dependent on caregivers. He will need some caregiving services when he goes to college, but his ability to function independently is remarkable and life changing. Spencer knows no fear, but he is careful to think through the best way to do things so he can do them again the next day and with the least amount of pain.
In December, Spencer walked for an entire day at school. He didn't know if he could, but he wanted to see if it was possible to get by without his wheelchair. At the end of the day he realized he still needs his chair because it was too difficult and painful to walk that much, but what a feat! "How many people said they couldn't believe how tall you are?" In typical Spencer fashion he quipped, "A lot. But I couldn't believe how short some people are."
Spencer went to the desert recently for a weekend with his Uncle John. As I was packing his gear I suddenly remembered his chair. I hadn't considered where it would fit. "Are you taking your wheelchair?" Spencer thought for a minute, "No, I don't think so. I think I can get by without it." And he did. On the same trip, Spencer had the opportunity to try skeet shooting. He fired a shotgun for the first time and hit the first clay disk. Then he missed several, but by the end he was hitting them consistently. The fact that he could stand, balance, lift the shotgun, aim and pull the trigger, is simply astounding.
Spencer sometimes leaves the house late at night to jacuzzi with friends, no assistance required. He can pump his own gas. He can surf with a crew of friends. He can walk up and down stairs if need be. He can carry his backpack to the car. He can bend from a standing position to pick something up off the floor. Spencer can do almost anything, though it might take longer.
We honor all of the trainers and therapists who have worked with Spencer at Project Walk and MRK Lab. And we are especially grateful to Matt Audia, who has become much more than Spencer's hand therapist, he is a friend and fan. Matt assures Spencer's hands get stronger all the time, striving always for a functional right hand. Spencer also continues to work on full body strength and balance. He will cope with the paralysis and damage to his central nervous system all of his life, and he will need to manage spasms and pain. Still, his neurological recovery has been off the charts.
I glory in his each and every movement...I take nothing for granted. Nothing.
Academics and Career
Eight weeks after the accident, an occupational therapist at Rady Children’s Hospital attached a brace with a pencil to Spencer's left hand so he could write (he used to be right-handed). With great effort Spencer was able to make a huge, childlike "S" on a sheet of paper. I cheered along with everyone else, but inside I felt cold panic and I had to turn away to hide my tears. Before the accident Spencer had been writing papers on comparative economic systems. How would anyone know what Spencer was capable of if he could not communicate with pen, paper or computer?
Once again, the situation called for faith not fear. Spencer will be graduating from San Dieguito Academy (SDA) high school on June 13 with a robust GPA and excellent scores on his college entrance exams. He completed his college applications to California schools with great science and technology programs. He is interested in becoming an engineer, possibly a chemical or physical engineer. Spencer's college education is critical; his life will always be harder and his costs higher than for most people.
SDA has supported Spencer throughout. We give thanks to his aides, his tireless advocate Mark Easbey, and to a host of great teachers who saw beyond his physical limitations to his limitless potential, with special kudos to Susanne McCloskey, Sheryl Bode and Stephanie Siers. Likewise, our hats are off to the SDA students involved with last year's Theater for a Cause fundraiser for HelpHOPELive in Spencer's honor and to Sheryl Bode for promoting our participation in the Surfing Madonna Beach Run. We live in a great community.
The financial realities of spinal cord injury (SCI) are harsh. The Christopher Reeve Foundation estimates first year ($1,023,000), annual ($109,000) and lifetime ($3,319,533) costs for Spencer's level of SCI. An estimated 1 in 3 bankruptcies in this country result from uninsured medical expenses. Most people live one medical crisis away from financial ruin. I could have been one of them. I am a single mom 100% financially responsible for my family. Despite my great job and health insurance, the costs of Spencer's injury were potentially overwhelming. My house was on the market and nearly upside down when Spencer had his accident. I emptied my savings and borrowed to keep and convert my house for wheelchair access to bring Spencer home. Since then, I have sold everything of value, eliminated expenses, and made two career changes for a higher salary. But I did not get here alone.
We have invested over $250,000 in uninsured medical costs associated with Spencer's recovery; well over half of it was raised by the community through HelpHOPELive. We are grateful for every dollar. I cannot emphasize enough what a difference every contribution has made. I picture you in my mind as I write thank you notes with misty eyes. I record your generosity and your connection to Spencer's story in my heart. Truly, Spencer's future would look very different without your support.
At the risk of missing someone, I want to acknowledge some golden-hearted individuals who have made Spencer's cause their own. These people repeatedly donated money, helped with fundraisers, aided at surf events, assisted with the car, kept my family when my work schedule demanded more time than I had, and buoyed our spirits: my sister Lisa and brother-in-law Gary, my twin brother Jake, Debbie Nye, Lori Manroe, Dan and Kaye Hentschke, Jan Uhlman, Steve Cushman, Chris and Katrina Goldsmith, Doan and Mary Beth Hohmeyer, and Jane Morton. I don't know what we would have done without you.
Because of our combined efforts, Spencer is headed towards a good education and an independent life. Spencer, in turn, has started giving back to the community; speaking for adaptive surfing and scholarships for those with physical disabilities; it is a great circle.
Spencer is fortunate to have the world's greatest brother, Dane, and sister, Ruby. I have written before about the uninvited change Spencer's accident wrought on the entire family. Recently I remarked to Dane, "Who would have thought Spencer would be where he is today?" and he reminded me,"I did." It's true. Right after the accident Dane maintained that if anyone could recover from this, Spencer could. Dane has unwavering faith in Spencer's ability to do the impossible. And Ruby sees no disability in Spencer. She adores her big brother--they argue about music, TV shows, movies and everything else--but Spencer gently guides her through school, homework and life while Ruby exuberantly shares her artwork and creativity. My kids have become closer and better for all they have been through. I am thankful because it could have turned out so many other ways.
Most important, Spencer has grown into a fine young man. He has great friends who are bright, caring and hilarious. He was the Master of Ceremonies for SDA's CommUnity Day because he loves to entertain. He is in the Spanish Club and he eats every day at the cooking class, though he is not in it. He is wickedly funny and very kind. He has a broad array of interests and can talk on any subject; just ask him. He is very competitive and he thinks board games are a blood sport. He watches a lot of football, has eclectic musical tastes and plays too many video games (in this mother's opinion). When Spencer finds a book he likes, he reads compulsively to the end. He enjoys being challenged, solving problems and learning about everything under the sun. He is ready to launch.
When Miracles Happen
I am so proud of my family. I shake my head in wonder and marvel at what we accomplished in the past four years.
And I have learned something about miracles. I truly believe we have experienced a miracle, though it didn't always feel that way. It often felt more like hard work and struggle, overcoming obstacles, doubt and fear. Fortunately, even when uphill, we tried to move ever forward. And that is what I have learned. You too, are likely living a miracle, whether it feels like one presently or not. In the end, may we all look back on a beautiful, complex tapestry of the life we created and see it as awe-inspiring and miraculous.
May all of our miracles continue!
CELIA'S LIST: Giving Back and Giving Thanks
Written Nov 27, 2013 2:18pmMojo: The Best Dog Ever
Spencer suffered a deep and painful loss this week when his loyal and beloved service dog Mojo died unexpectedly. Mojo woke in distress and despite immediate veterinary attention could not be saved. The vet speculated it was likely a congenital heart defect. The entire family is devastated and the loss is much harder on Spencer. Mojo lived his life at Spencer's side...now there is a gigantic empty space. Mojo was Spencer's boon companion through some of his darkest times; he should have accompanied Spencer through college and beyond. Mojo was a fabulous, smart, beautiful and talented dog; he was irrepressibly happy all of the time. We are reeling from the loss, but grateful for the time we had with Mojo and for all he did for Spencer. Spencer will miss him keenly; we all will.Giving TuesdayThere is a national effort underway to add a new day to the calendar, Giving Tuesday. The second annual Giving Tuesday is next week on December 3. It is a great opportunity to raise funds and awareness for causes and it is perfectly timed for year-end tax planning.Many of you donate to large, well-known charities and they do not need my help. However, I wanted to promote small organizations that help individuals and families like us directly, so I came up with CELIA'S LIST. The non-profits included have helped our family and our friends. I can vouch for all of these organizations; they are run by dedicated, selfless and impressive people. It is hard to express how much community support and service mean when you need it. Spencer would not be where he is now without the donors and volunteers who have helped him along the way.I hope you will consider CELIA'S LIST. Every donation of $10, $25 or even more to each organization helps tremendously and has tangible benefits for individuals in need.
I believe you will get back more than you give by participating in Giving Tuesday. I am hopeful that someday Giving Tuesday will eclipse Black Friday in our national consciousness.HelpHOPELive in Honor of Spencer FoxOf course, Spencer's cause tops my list and HelpHOPELive will be waiving all credit card fees for on-line donations made on December 3, 2013, plus the added benefit of a tax deduction. Most important, you can help a deserving young man with medical and financial needs in his quest for independence. Spencer will need rehabilitation, assistance and additional medical equipment to go to college. You can donate by sending a check made out to HelpHOPELive with IN HONOR OF SPENCER FOX in the memo section to: Two Radnor Corporate Center, 100 Matsonford Road, Ste. 100, Radnor, PA, 19087. Click on the link below or go to HelpHOPELive.org and enter Patient Name Spencer Fox. https://m.helphopelive.org/find-a-patient/profile/index.cfm/patient/87E88643-A642-5282-4676EC27D3E3CD8B/Swim With MikeThis incredible organization has raised over $13 million in scholarship funds for physically challenged athletes. SWM recognizes that education leads to independence and that getting back into education is getting back into life. This program started at USC and continues to grow. Three of our friends are current scholarship recipients. Spencer will be submitting his application for consideration soon. Donate on line here and make sure credit goes to the SAN DIEGO section: http://swimwithmike.org/.Surf Dog RicochetThe remarkable Judy Fridono discovered Surf Dog Ricochet's talent for surfing and combined it with her own passion for helping others. She has raised over $300,000 and awareness of many, many causes. She has donated every single penny of the money she has raised to benefit children, veterans and animals in need. Judy is amazing and humble; I am honored to call her friend. Judy's organization is a 501(c)(3). Donations can be made through the website http://www.surfdogricochet.com/or by sending a check to Puppy Prodigies, 306-N West El Norte, #21, Escondido, CA 92026.Peach's Neet FeetYoung Madison Peach Steiner is the most impressive ambassador for kindness that I know. She started an organization that brings hope to warrior kids fighting cancer and kids living with disabilities. Peach's Neet feet delivers custom, hand-painted tennis shoes to children living with disabilities and fighting serious illness. She has started a national network with hundreds of people donating shoes, time, talent and money to empower and recognize the kids who need it most. Tax deductible contributions may be made on the website: https://peachsneetfeet.com.Ocean Healing GroupCarving the "Dis" out of "Disability" Ocean Healing Group takes wheelchair bound youngsters on a life-changing adaptive sports adventure in Costa Rica. We participated in this program in 2011 and Spencer was able go surfing, quad riding and zip lining. It helped Spencer redefine himself at a critical time after his injury. Now he is unstoppable. Tax deductible contributions can be made on-line at http://oceanhealinggroup.org/.Tender Loving CaninesSpencer's noble service dog Mojo was raised and trained by Tender Loving Canines to meet Spencer's exact needs and lifestyle. TLC transforms the lives of individuals with service dogs, each one carefully matched based on personality and needs. Dog and client training lasts throughout the life of the dog. Mojo forever changed our lives for the better. Donations can be made on the website: http://www.tenderlovingcanines.org/
The world can be a better and more caring place if each and every one of us decides to make it so.
Be grateful and enjoy time with your family, friends and pets this holiday.