A Dream is a WISH Your Heart Makes 

         It’s often crossed my mind as to what I would have been or where I would be right now if I didn’t have MAGIS Syndrome.  Before my disease fully manifested itself, I saw glimpse of what might have been.

         I might have been an athlete.

         This might surprise you, but as a little girl I was quick and strong.  No one could catch me during a competitive game of “Duck, Duck…GOOSE!”

         I might have been an obstetrician or a neonatologist. 

         Once again, this might surprise you, but I always had a fascination with life and how a tiny little human formed from conception to birth.

         It’s sometimes bittersweet to think about what fruits my other interests could have produced.  But today, I want to look at the gifts I received because of my Immune Deficiency, not what I lack because of it. This gift provided a “magical,” season in my life.  Through a caring doctor, amazing organizations, and a little bit of pixie dust a WISH that my heart made came true.

         When my disease fully came to a head there were so many, “unknowns.” My rheumatologist could see the toll my illness was taking on my parents and I. 

         He approached my parents asking them if he could nominate me for a, “Special Wish,” through A Special Wish Foundation.  The Foundation would allow me to submit my top three wishes and then they would pick one of them and fulfill it to the “nth,” degree.

         Now what child doesn’t dream of that kind of star treatment? But wouldn’t ya know, my parents told my doctor no?  They said to give it to another child who needs it more.  

         However, I really think God wanted me to have that WISH, because my doctor came to my parents a second time asking if he could nominate me and they said yes! My rheumatologist wrote a sweet nomination letter and the Foundation asked me to pick my top three wishes. 

         And the wish they picked to grant?

         An all-expense paid vacation to Walt Disney World!  My family and I would stay at Give Kids the World Villas, lodging and transportation exclusively for children with life threatening illnesses and their families.

         I was giddy with excitement.  I couldn’t believe I would get to meet Mickey, eat breakfast with Pooh, and feel like a princess in Cinderella’s castle. 

         When my family and I got off the plane I couldn’t believe my eyes.  There was a volunteer from Give Kids the World holding a sign with, “Welcome Whitney Ward,” on it!  From the very start I felt incredibly special. 

         The volunteer took us to our very own villa, and I was given a special badge to wear so people would know I was receiving a “Special Wish.”

 We visited Epcot, MGM Studios, Magic Kingdom, Universal Studios, and everywhere I went I was treated like a princess.  

         Two precious moments stand out to me during that vacation.  Since I was wearing the badge, I was able to be the first in line for everything.  But even in these unique circumstances my parents refused for me to be a child that expected special treatment just because I had a disease, so we stood in the back of the line, waiting our turn like everyone else. At Universal Studios we were waiting in line to meet Yogi Bear, when all of the sudden Yogi saw us and he noticed my badge.  He began tapping his guide’s shoulder and pointing to me.   His guide came up to us and not only brought us to the front of the line, but under the ropes, directly to Yogi Bear to meet him.

The second memory I remember was at one of Disney’s character parades.  If you’ve never been to a Disney parade, then you’re missing out on one of the most magical and awe-filled moments of your life, so we made sure we were there early to get a front row seat. The floats and larger than life characters made us feel like we stepped into the movie, and this particular movie we stepped into was “Toy Story.”              

What made the parade so special is many of the characters walked in the parade.  Several feet away, we caught a glimpse of Bo Peep walking the street and waving at the crowd.  I have no clue how she noticed me with the thousands of people in attendance, but somehow she immediately saw my badge.   

All of the sudden she left her spot in the parade, walked over to my family and I.  She knelt in front of me, took my hand, and placed a sweet kiss on the back of it.  I was astonished Bo Peep would go out of her way to make me feel so treasured.

        Basically, that’s how my family and I felt all week— awe, treasured, and grateful for the priceless gift we were given.  To this day, the outpouring of generosity, kindness, and hospitality my family and I received from my doctor, A Special Wish Foundation, Give Kids the World, Disney World, and University Studios touches my heart deeply. I’ll never forget as a scared, critically- ill little seven-year-old, a WISH that my heart made came true.  

          

What to Do When the Storm Comes

         My heart goes out to everyone who has been effected by these heavy rains.   We, in Scioto County, are now seeing the tumultuous rains that have caused devastation in other counties and states.  The only thing people can do is heed the information and advice given to them by their local officials and weathermen, then prepare the best they can.

         One of the most difficult places to be in is to know a storm is brewing, but not know exactly when it will hit, the level of force it will have when it arrives, or the damage it will leave in it’s midst— whether the storm comes in the form of a natural disaster…or a chronic disease.

         When word began circulating there would be torrential rain that could cause flood waters, the first thing most people did was watch the weather to see what their meteorologist was predicting would happen. They gathered all of the information so they could know what to possibly expect and how to prepare.  

This is exactly what you should do if you’re diagnosed with a chronic illness.  Talk

with your doctor about what symptoms are possible with your disease and what treatments would be recommended.  Research those treatment options so you know what medications you're comfortable receiving.  Glean from the advice and encouragement of individuals who have been on a similar medical journey.  The more information you have about what could happen, the more prepared you will be to face

the storm.  

         Once people knew how to prepare for the potential flood waters, then they took action.  They may have gathered supplies in case they had to remain at home for an extended period of time due to bad roads.  They could have had to book a hotel to escape high flood waters that could potentially cause damage to their house.  Or some maybe had to take the same precautions my household did.  Which was make sure the sump pump was turned on and working in the basement as well as keep an eye on the rising creek waters around our property.

         Whatever the action people had to take against the severe weather is what lessened the the trauma it caused.  The same rings true when you have a disability.  Trials are sure to come when you have a chronic illness, but if you prepare, the heavy burdens will lessen when difficult times come.  The first action I recommend and it’s the most powerful and effective preparation of all— is prayer. Ask God for strength and perseverance to overcome the mountains before you and I promise He will give you exactly what you need. 

Secondly, I urge you to write down everything you can about your medical care.  There’s so much to recall and no one can remember everything, especially during a crisis.  What I suggest is creating a “Medical Album.”  Simply purchase a regular picture album, take 3x5 cards and write your medical information on them, and then place them in the plastic sleeves.  

I have 3x5 cards that list my physical stats, diagnoses, medications, allergies, surgeries, and every physician with their contact information.  You may find a better system works for you when it comes to recording your medical history, but the action of having important medical information on hand for your doctors right when they need it, will decrease the impact of the storms your disease may cause.

The most important preparation these flood victims did was gather their loved ones close for support and to make sure they were safe. They knew these were the people who knew them the best, and would “hold their arms up” when the storm came.

         Just as the most important action for the flood victims was to hold tight to their loved ones, when you suffer from an illness, you must do the same.  It doesn’t matter how old you are, when you have a disease, you need a support system. 

         When the burdens of your disease become too much to bear, allow your family and friends to “hold your arms up” for you.  Allow them to be an extra set of ears for you at a doctor’s appointment. They may need to take care of you while you’re sick.  Or you may need their advice when you’re unsure of what treatment to take or what doctor to see.  Whatever the case maybe, use your support system, because God gave you exactly who He knew you would need when the waters begin to get high. 

         It’s difficult to know a storm is coming, but when it hits what will really matter is how you react to it— whether it comes as a flood or a disease.  The key is to know what to do when the storm comes. Get all the information you can. Use your resources and get advice from others who understand. Then take that information and put it to action so you can withstand the strongest of impacts. Lastly, cling to your support system God gave you so they can help "hold your arms up," through difficult trials.  If you do these things then when the fiercest of storms come in your life, you can look it directly in the eye and boldly say, “Because of God’s strength- I am the Storm.”