Some people are “born to succeed.” Over my thirty-four years of life I have realized that I may just be “born to be sick.”
Don’t get me wrong, I am very thankful for my life. All that I have experienced has made me stronger. I have been taught to be flexible, because life is always changing. I have been taught to be kind, because you never know what someone else is going through. But most of all, I have been taught to have hope. I have no idea what the future holds, but it is my hope that something beautiful is just ahead, waiting for me to catch up.
Stories have a way of connecting each of us. Through shared experiences, or different points of view, we learn to see the humanity in the world outside our door. We learn that we are each seeking acceptance and love. We all have the desire to be seen and heard. That is why sharing our stories is so important.
The truth is, I have known my share of illnesses. I have known my share of pain. However, despite it all, my life has been truly blessed, and I have no reason to complain.
I suppose I should begin on that fateful day. It was months after my birth when my parents first felt it. A lump on my ribs. I still see pain in their eyes when they talk about that moment. Fear, despair, confusion. So many emotions surrounded them at that moment, leading them to action.
First, a visit to my pediatrician. He referred them to a man that has been in my life from the moment we met. Dr. Michael Albert of Children’s Hospital was so important in my life, that I insisted my husband meet him before we married!
As soon as my parents met Dr. Albert, a calm spread upon their weary souls. This was a man that cared. This was a man that would do something. This was a great man!
The diagnosis, Multiple Osteochondromas. Extra calcium formed into bone tumors, leaving me with tumors all over my body! As I grew, more tumors developed. Because of this, I grew used to the yearly check-ups and whole body x-rays.
As odd as it sounds, I remember loving those appointments! My mom would take me to the cafeteria before my appointment and buy me a donut (sweets are my weakness). She also took me to Burger King in the hospital cafeteria after my appointment. As our family did not eat out frequently, this was a treat!
Just because we rarely ate out in my family, though, does not mean I did not get treats. My mom is an excellent baker and was always baking something sweet for us to have. Not to mention the snacks we always enjoyed. Chips, bologna, pizza rolls, and other snacks frequented our house in my childhood.
My younger brother and I loved our snacks! We used to tease him, because he would eat hardly anything at dinner but would come downstairs late at night for a huge bowl of ice cream. Food was a comfort, and we were not denied our treats!
I look back on those early days, a child born to spend her life visiting doctors and hospitals. A child who learned to trust others, who learned that weakness did not come from asking for help, but from avoiding help when needed. A child who learned to cherish the simple things when life became difficult, such as a simple donut or whopper in the hospital cafeteria.
I am not the only one with stories like this. I was born with a disease, and there are many out there with a shared experience. I have been through so much in my life, but I never let it stop me.
Throughout this blog I will share my own personal story, as well as projects I have worked on or am currently working on. I am always trying something new. It makes life exciting! And when you were born to realize you have no idea what life will throw at you, you learn to appreciate the little joys in life.
Thank you for coming on this journey with me! In time, I hope we can share stories together, and grow in knowledge that we are not alone. Our stories are connected, creating the beautiful tapestry of life, and for that, I am truly thankful!
Have any of you or anyone you know been born with a disease? What has the experience been like? Don’t forget to comment or reach out to me on:
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