Last trip to Memphis for my granddaughter’s treatment for leukemia at St. Jude’s Children’s Hospital. Rain is pelting the windshield, wipers fighting the force of water and wind then spots of no rain at all. It is a symbolic example of our three year journey coming to a close. We pull into the parking lot of the Tri-Delta House where we have a room reserved for us. We see new people and the familiar ones still fighting and hoping for a cure.
The next morning we arrive for the first of three MRI’s and labs, CAT scans and psychological testing that takes up the entire day. Tomorrow is full of appointments also. Humidity is heavy and it bears down on already stressed out emotions. Parents walk around downtrodden. Eyes vacant, trying to follow directions like good little boys and girls in hopes that a reward of a miracle of life will happen for their child. Robotic migrations from clinic to clinic carrying the all-important daily schedule that can change at any moment and invariably does. Waiting rooms are around every corner because that’s what you mainly do. They are filled with distractions for the child waiting for what they know will be the next painful procedure. Parents hate it too but there’s nothing left now except faith and hope and perseverance. It is an atmosphere of controlled chaos and a test of human endurance as to how many emotions you can shove down internally and keep from your frightened child moment by moment. Your own silent scream must remain that way until the end whatever that brings.
The lodgings are more than adequate. Living rooms, play and game rooms are adorned with beautiful furnishings, toys and up to date technology. Every wall has painted murals of landscape and animals that most of the children will not get to see, for real, for a long time. Some huge temporary houses like McDonald’s House have several big kitchens so you can make your own meals during the long term stays. The compound is gated and ran like a 4 star resort only what you are going to experience has nothing to do with pleasure and relaxation.
Staff does not build false hope even though it’s the only thread left in the fabric of your life to hold on too. You learn to build your own. This is a sub culture of desperation where everyone here belongs. The journey is like a train speeding toward a destination where every rider hopes they can eventually get off and get on with their lives. Some do but some are derailed along the way and never reach that station. This fact lives daily like a virus in each parent’s heart. None of this is St.Judes fault. They try very hard to accommodate but the situation is devastating and personal. It takes a very strong parent to endure and balance the medical control with their knowledge of what’s best for their individual child. Often you find yourself swinging from despair to anger.
We are grateful, relieved and blessed because we reached our train station as all the tests were negative and my granddaughter is cancer free. But, the fight continues there for so many. It is a journey that changes your Soul and lives within you forever. We believe in playing forward every life experience we learn from. My daughter met a grandmother this morning who has just arrived with her granddaughter and daughter. She is lost and she is desperate. My daughter gives her insights, navigation tools and when to take some advice with a grain of salt and which to pay attention too. She tells her the most important tool is research of everything, the drugs, procedures and advice. She has helped so many parents over these years cope during the worst journey of their lives.
My granddaughter started a website called “Freaking Out On Cancer” the first year of treatment. It is a place kids can talk about pain, victories, despair and joy. She intends to continue this website throughout her life. This journey into the valley of death was traumatic for our whole family but we made it through. Playing this experience forward is a way we can repay our incredible miracle. Each one teach one is the golden key of humanity.
I’ve thought a lot about change lately. Like they say it is the only constant. My life has been full to the brim of it as long as I can remember. So much so that I got to where I expected change, even looked forward to it like an old comfortable blanket. Although, I wasn’t always that way I just adapted to the ride. I was married young by today’s standards at 18 years old but was more than ready to settle down to a warm home with a picket fence with children and a smattering of dogs and cats. I yearned for stability because it felt safe and reassuring. However, it didn’t put demands on me to take risks or to explore who I really was underneath the persona of the perfect wife, mom, daughter etc. Then little changes began to happen like the first daughter and the second and the third. Then a tsunami of a change occurred in the form of a divorce.
This change brought me to my knees and forced me to reach way down into a place of strength and courage I did not know I possessed. But I found out I did possess this power and it was my first inkling of who I was and what I might be capable of. Change became a normal part of my life after that. Struggling, surviving, always looking for the light at the end of the tunnel taking every opportunity offered to create what I lost. We travelled like gypsies over more than a dozen states looking for stability but change was always right behind us as I was trying to run from my heart pain.
Then in Florida I got sick, really sick and almost died. The illness left me with many disabilities. My youngest daughter was diagnosed with Hodgkin’s during the time I was in a coma. We all made it through, lucky to be alive, trying to adjust to the biggest life change yet. There were five of us now with the addition of a beautiful son six years ago and I was in charge of their lives regardless of my new disabilities. By now I was a fighter and a survivor so I was determined to fulfill whatever mission God saved me for.
After a year learning to walk and drive again and my daughter was back home and in remission, the kids and I moved to the Midwest to be near my family. There I found what I was saved for when I took a job as a disability advocate for a civil rights organization. This was a perfect platform in which I could redirect my anger and survival skills to assist people with disabilities to thrive and become independent in a society bound and determined to warehouse them. These were my people and I instantly knew I had a responsibility to play it forward.
I just retired after 26 years and if that sounds like I finally found what I lost so long ago with the divorce you would be wrong. During those years the changes kept coming with challenges, deaths of loved ones, raising teenagers, moving residences constantly to adjust to new developments good and bad. I know now that what I forever tried to replace wasn’t mine anyway but rather a springboard for me to jump from in order to explore and use the essence of who I really am in this life.
I am now embarking on a new adventure with the same mission of reaching out to humanity only on my terms. It is a partnership with others who are just as dedicated to change society’s perception of people with disabilities as I am. Change has become my friend and although I can finally relax with the children grown and a successful career put to rest I welcome change when it comes for the opportunity it is to grow spiritually and intellectually. Managing it becomes an expanding drill but the way we embrace, oh yes, the way we embrace it, defines our future and ourselves.
Like almost everything else we use in this world social media has its good points and bad. It is a tool and how you use it will produce the outcome. On the positive side it has worldwide connectivity that allows unlimited searching for relatives, long lost friends, an old teacher or even a pen pal from another country. The most well-known social networking communities are Facebook, Twitter, LinkedIn and Pinterest. Through these sites individuals can make new friends, build business connections or simply extend their personal base. It is a great way to share tips and ideas also. People can learn with ease and gather information about cooking, crafts, gardening and a variety of hobbies using Pinterest for example. There are also social network groups that act as a huge and diverse peer systems like our own “Common Threads Network Group” sponsored by “Independence 4 Ever”, and the much needed information and resources for people with rare diseases, advice on toxic relationships, child care and caregiving for the elderly to mention a few.
However, when you are using any social media platform, take responsibility for your own safety and never join a group just because it is trendy or all your friends are doing it. In evaluating the advantages and disadvantages of social networking, it’s best to err on the side of caution and protect your privacy. Be careful with what you post and treat others as if you were in a face-to-face situation.
Some of the cons of social networking is in how we try to use the shortest words and sentences possible. It stymies our ability to express clearly our opinions. Being able set forth our own profound thoughts is paramount to being understood. Some networking sites limit the characters to 140 creating a short hand version of what we intended.
We can over use social media to the point of forgetting to live in the moment. Constant updates whenever we do anything and taking hundreds of pictures of every event or moment for posting prevents us from savoring those memories we are attempting to preserve. Although we actually experienced them we are doomed to living them through the social media page. We need to start looking up and not down into our phones. I am just as guilty as everyone else wanting to share those celebrations but eventually the time will get absorbed and we never actually “felt” the experience first-hand.
So, for all the potential risks in social networking it is still an informative resource for those who learn to balance their time using it. Like a gun it is not dangerous itself but rather a tool to use for good or evil. The user makes that call.
Christmas oh how I love thee. The sounds of beautiful music that flows like a river through my excited soul and fills my senses with smells of evergreen, fireplaces burning oak and cinnamon wafting from the kitchen. So many Christmases have I experienced through my long journey. Some I was poor, some rich, some in stressful times, some in celebrating times. But, Christmas is above all that. It is a concept and although personal it is also universal in its message. All the things it is, the gifts, the family joining, the food, the decorations remind me what that message is. It lifts me and makes me a better person because everything connected with it serves to make me remember the child within and the child who changed the world.
Yes, it’s marketing and yes for that reason it’s promoted early but you don’t have to buy gifts early or buy gifts at all. I like to wait until December but as a single mom there were years I so appreciated those early layaway options in early November. Not everyone can save early or have credit cards available. My little family sang Christmas songs earlier than anyone we knew and the gift discussions and anticipation was magical compared to the rest of the year of focusing on survival. They knew this holiday was a celebration of the birth of a savior and his message was to honor and love one another, to count your blessings and live with joy. He did not intend for us to just speak it but to do it. Gifts, even tiny ones, tells that person “you are loved, you are valued”.
Sometimes the only gift you have is a comforting hug and that could be the best gift of all. So I say to all the complainers out there that believe it’s too commercial that really, it’s all in the focus of what you want from it. And the answer to that lies within you.
Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful. ~Norman Vincent Peale
I read somewhere that only 4% of new cars sold in the U.S. have manual transmissions. There were a lot more in the 60’s when I was a teenager learning to drive. We had an almost new Pontiac sedan with automatic transmission and power steering that was a breeze to drive but my parents insisted I learn to drive my Dad’s old paint truck first. It was a 62’ step side with a 3 speed shift on the column, no power steering and smelled like paint and turpentine. You had to keep yourself focused to keep the fumes from making you daydream about your boyfriend. But I would do anything to get my driver’s license and my life was a little askew of my girlfriends anyway like the fact they all had pretty designer dogs and we had a hunting dog that stunk.
So, every Saturday off we went to the desert. I had not graduated to a city parking lot yet. My older brother was usually my instructor which I resented because he was so picky. My verbal instructions each and every Saturday according to him was – stay mentally vigilant, do not take your foot off the clutch letting it fly up stalling the engine, do not try shifting without the clutch or break forgetting you have a clutch, do not look at the shifter instead of the road (many cactus lost their lives by my hit and run), do not mistake neutral for first gear and revving it until smoke comes out of the tail pipe and the biggest demerit of all was forgetting to take it out of gear when parked causing his cigarette to fly out the window when the truck violently jerks forward. yada yada yada
After the summer of mind numbing practice I learned to effortlessly release the clutch millimeter-by-millimeter in a smooth transition. I graduated to city parking lots and even parallel parking which is a whole different learning curve than automatic transmissions. Although I was ready to take my driver’s test in my mom’s sedan my brother convinced them that I really needed to learn the five speed stick on his disgusting dirty Scout 4 wheel drive. Just to be rounded he explained.
So off we went to the desert again but I already had the clutch down pat so just had to learn the 5 speed configuration without always looking at it. We started in the area I already cleaned out the cactus months ago so no more fatalities would occur. A few weekends and I was a pro. I finally got my license by driving the automatic, power steering, glide on a cloud, Pontiac family car but I was capable of driving just about anything now. I knew a lot more than my classmates who only drove automatics like do I use second or third getting for the exit ramp, is the grade steep enough to downshift, did I remember to put it in first gear before parking. You never stop assessing the situations. Automatic transmissions took whole steps out of the driving process. Driving while doing something else isn’t like letting go of your handlebars while riding a bike. It’s like operating a missile without paying attention to where it’s going. Texting and cell phone calls are just about impossible while driving a manual transmission.
I look back now and marvel at the devotion of time and patience my family had to teach me skills that lasted a life time. Bonding together came naturally as each one taught one in my family village.
The following essay was not written by me. it was written by my 16 year old granddaughter whose strength and depth of character is way beyond her years. It has an important message in it that inspires those who have had to deal with overwhelming trauma and survived. Hope you enjoy.
“Raven I regret to tell you this, but you have Leukemia” These words shattered my world and turned it upside down. All I remember is my mom jumping in front of the doctor looking me in the eyes and telling me “Raven Listen to me You can beat this all you have to do is keep a good attitude!” my doctor tried to interrupt her but she put her hand up and said firmly that she needed to talk to her daughter. He smiled and walk out. My mom then looked back at me and kept telling me that as long as I didn’t give up I would make it through. She said its 10% meds 90% attitude, and that sunk in because I still remember it like it was yesterday. And that’s how I found out I had Cancer
Next thing I know I’m getting sent down to Memphis, Tennessee to go to a special hospital for kids in my position. My position? All I know is that I had to pack up with a duffle bag of clothes leave the only place I’ve ever known and be shipped off without no more than 5 hours’ notice because the ambulance was already on its way. Why me? I know I’ve had bad luck but this is ridiculous. I look out the windows in the ambulance and I see oak trees and wheat fields that are just starting to wither away. Is that going to be me soon? Withering away as the months or weeks go by? I guess we’ll find out in about 4 hours huh?
39787 that’s my new name I guess. That’s what everyone calls me. “Is that 39787?” “Is 39787 hungry?” “39787 is not in her room. Where is she?” This… this 5 digit number is my new identity. In fact, I got so sick and tired of it that, I snuck out of my room just so I could get away from it all. But then everything erupted in chaos. All I was doing was sneaking down to the kitchen to read in peace and quiet. It was bad enough I had to drag around this pole of fluids that was about twice my size. But now i can’t even leave my room without getting lectured about fall risks and white blood cells. I was just trying to get out of this medically induced prison. You’d think they would have some consideration but I guess when you see it every day you get immune to it. I just hope it gets easier because I don’t know if I can do this for….HEY HOW LONG DO I HAVE TO DO THIS FOR?!?!?!?
“No! I will not stay here for 4 months I got plans!!! I got school!! I can’t just up and leave my friends! My FAMILY!! No I won’t do it!!!” They can’t expect me to do this. They can’t make me! Can they?? “We don’t have a choice sweetheart” mom said with sorrow in her eyes. It was then that I realized they were not only taking me from my life but taking her from hers as well.
Then… came the side effects. After getting a Rubber ball attached to my heart, came the meds and the consequences. That had to be the worst part. The Chemo they give you messes with your energy and cells, so to counteract them they gave me steroids.
Yes. I did say steroids. And those steroids came with a nasty price. A price I wasn’t aware I had to pay.
If you have never heard of avascular necrosis, you would not be the only one. Avascular Necrosis is a deterioration of the bones and/or Joints. If you catch it in time they can be saved. for example if you catch it at 30% then you can get a surgery where they place a metal rod in your bone/joint and crush it up to get blood flow through there. I have had this on my knees and ankles, even though they were at 90% my hips and shoulders were too far gone to save, so for those they had to replace them. God It makes me feel like I’m 80 with a hip and shoulder replacement.
Anyways now I have had 6 surgeries in/on my nose, port (rubber ball), shoulder, hip, knees, and ankles. That doesn’t even count the spinal taps. Which for those of you who don’t know are when they stick a needle in the base of your spine and take out fluids or put in chemo. And when it comes to spinal taps I’ve had over….100. But those don’t bother me except for the fact that when you get knocked out for a spinal tap you can’t eat for 7 hours before.
Now there are time that I look back and laugh, which I know does not seem right. And I’m sure you are asking yourself “how can you laugh at something like that?” and I have a way to show you. So I’m going to end this personal narrative on a positive note with a funny story.
I was about halfway through treatment when I had to do a spinal tap on a very busy day for the hospital. So just like any other hospital I had to wait in the waiting room. (Now let me remind you that it was about 2 o’clock in the afternoon and I had not eaten since midnight the night before so I was hungry) I got up to go ask the nurse how much longer we had to wait and she was eating a bag of spicy Cheetos and I wouldn’t have minded if she wasn’t so mean about it. “Excuse me miss?” she looked up with a glare in her eye and said “what?” I didn’t know what to think but I got a little irritated but not enough to say something so I just smiled and asked “would you happen to know how much longer till they can get me back in the operating room?” (now before I go any further it won’t make sense if I don’t tell you they had huge aquariums in the waiting room with little clown fish in them) so she said “ Do I look like I would know?!?” by this time I was ticked off so again I smiled and said “well you look like you would at least know where I can get some tartar sauce” she was confused and said in a tone I rather did not like “ why would you need tartar sauce? I know for a fact you aren’t allowed to eat” I couldn’t help myself I smiled evilly and said “cause I’m about to go eat Nemo. And if you’d rather I didn’t I suggest you Talk to the doctor and see how long till they can get me back!” She looked horrified to say the least. But hey it worked I got called back 2 mins later.
And that’s my story. I would to add that I am 4 months away from being done with chemotherapy. um let me think I believe I covered everything. Oh… If you have a question about any of this just feel free to ask me. I’d rather you know than guess. So I guess the moral of my story is you can find humor in almost anything if you look hard enough…
When I got the call at 5am that my granddaughter and her mom were at the hospital my mind was spinning with panic. When I learned the sudden and unexpected diagnosis was leukemia a silent primal scream of agony tried to escape from my soul. For the next week it was followed with denial, anger, fear and an emotional pain that threatened to sweep my life away. I know other families have gone through this horrifying journey but this was “my” grandchild. All I could think of was her charm, beauty and honor roll mentality and the fact her 13th birthday was just last week. High school was just ahead with exciting opportunities for friendships, proms, dates and preparation for college. Was all that gone in one sweeping diagnosis early one morning?
I’ve learned a lot since those first few months. She is 16 years old now and will be finished with the treatment protocol the first of the year. It was an agonizing three years of pain and sickness complicated by the fact she was allergic to almost all of it and now is left with bone joints that are crumbling from a reaction to steroids. If not for St. Jude’s Children’s Research Hospital in Memphis all hope would have been lost. I knew Danny Thomas started the hospital and research center but was curious about the Saint he named it after so I did some research.
It is named after Saint Jude known as the patron of lost causes and desperate cases, and the patron saint of hospitals. Jude was one of Jesus’ twelve original apostles. His lineage is documented as a direct relative of Jesus, a cousin. There are certainly many sources of shared personal history, for instance any reference in the New Testament to “the apostles” would presumably include him. Thus we can conclude he was in the boat, on the hillside, in Jerusalem, at the Last Supper, etc. He also preached and taught in Turkey, Syria, Libya, Samaria, Judea and Palestine. Saint Jude is also the patron saint of hope. Maybe this is the most important thing he represents as many times it is the only thread left to grab onto. There is something endearing about its endurance when times are bleak. In Emily Dickinson’s “Hope is the Thing with Feathers,” the poet writes about hope as a bird that continues to sing despite not knowing the words, despite being stuck in a storm, despite the worst of conditions.
Hope is the belief that circumstances in the future will be better. It’s not a wish that things will get better, but an actual belief, even when there may be no evidence that anything will change. We held onto that thread with our belief of hope so tight that most times we were exhausted but we never gave up. And now she is in remission. Her joint surgeries almost half done and she has just re-entered high school after two years of treatment. Her charm, beauty and intelligence still in place only now honed with a strength and maturity only a life tragedy can teach you. Hope is not denial, it is faith in the darkest times. Danny Thomas selected the perfect Saint to represent what his heart was trying to give to children and families in dire circumstances with a crisis too devastating to comprehend.