On this day one year ago, on a warm August morning, you took this picture of the sunrise en route to Katherine’s first MRI at Cincinnati Children’s Hospital. It looked so pretty and calming, didn’t? And you were searching for a sign of what was to come after a year of silently suffering over your worries for your daughter.
I know you optimistically hoped nothing unusual would appear on her MRI – convinced yourself nothing was wrong; however, in a few hours – the longest hours of your life – your husband will take a phone call from a neurologist who will tell you something far worse than you have imagined. In fact, you have not heard of the disease he believes Katherine has …he says it’s progressive and fatal…and when asked if there’s any hope, he says you need to “spend as much time with her as possible.” (You will say it’s a Mitochondrial disease, but you will later find out that all Mitochondrial diseases are metabolic, but not all metabolic diseases are Mitochondrial. However, this is utterly confusing to you this day.)
You are about to be knocked off your feet. The world will suddenly come to a screeching halt. You are not going to know your name or be able to feel your body. You are going to be physically and mentally numb. And you are going to feel this way for many months.
Somehow you will find the strength to stand back up. When you walk outside for the first time, you will notice the world is still turning, that people are carrying on like normal, that the sun still rises and sets. However, life will feel different. The mundane will become even more mundane. Everything will look different; even colors will no longer have the same shade as they once did. Life as you know will change forever.
Slowly, you will pick up your camera and focus on the frame in front of you. Life will get blurry, so you need to adjust your focus. Katherine will guide you through those early days. Your daily goals will be simple: eat, breathe, sleep, repeat.
You will experience many changes over the next year. You will have to quit your job, put your home on the market, and travel to many appointments and tests with Katherine. She will be given anesthesia three more times before her third birthday. You and Dave will decide that you will not try to have another child.
You will become fluent in medical lingo and very familiar with that disease whose name you cannot pronounce or remember. You will spend long, stressful hours at the Cleveland Clinic and learn to recognize the sadness on the faces of other families facing the unimaginable. You will carry KB from lab to lab to have her blood drawn and always inform each tech that it’s Katherine’s blood they’re drawing, not yours.
You will receive a rejection letter from your insurance company denying a genetic test. You will learn that it’s easy for insurance companies to deny your claim because they think she’s going to die and don’t want to (and usually don’t have to) pay to confirm it. Your husband will tell them the many reasons why this practice is wrong and they will decide to pay after all.
You will learn how to fight for your child.
You will learn the importance of enjoying every moment of your life, living in the present, and never taking another day for granted. You will grieve the life you imagined for yourself and your child. You will experience all stages of grief at varying times. You will suffer more than you knew was possible. And, you will wish it were you and not Katherine who has to face this horrible disease.
You are going to become a rare disease advocate – you will raise awareness, contact state and national elected officials, tell your story to anyone who will listen. You will meet other families walking a similar path and learn the names of their children; you will cry with their parents when they struggle and cheer when they achieve their own “inch-stones.”
You are going to study genetics and research everything you can about rare diseases, and you will share Katherine Belle with the world to put a face and a life to rare disease. Because of this, you are going to meet some really amazing people. You are going to receive kindness that you didn’t think was possible, not just from friends and family, but from complete strangers.
I know you feel hopeless, lost, overwhelmed, confused, scared and incredibly sad right now, but slowly you will find your voice and purpose. You will have hope – the type of hope that nobody will ever be able to take away or destroy. You will have faith that this journey is bigger than you – MUCH bigger – and even though you do not have the strength right now, you will find it, I promise. Your strength will wane, your faith will be tested, and your hope will diminish from time to time. I know you want to scream “WHY?” but in time you will learn this question is just another part of the journey.
And love. You will be enveloped by so much love. The world will pray for your family and your strength; they will pray for Katherine Belle; they will carry hope on their shoulders when you can’t feel it anymore or find yourself just too tired to go on. But, you will go on. As sure as that sun is rising in this picture, you will go on. You must go on. Katherine needs you.
There is a message in this photograph after all – it just took a year to fully understand.
Love and courage,
Glenda (August 2014)
If you wish to donate to support Katherine Belle’s medical fees, please go to http://www.gofundme.com/hopeforkatherinebelle