Clarissa is a mother, warrior and founder of her very own non-profit. Her story is encapsulated below:
When I think of the word warrior what it means, I think of someone that can do and be anything, That no matter what they are able to defeat the odds, and do not only what is expected of them, but unexpected as well.
I was diagnosed with sickle cell at 3 months of age, and ever since then, I have been a warrior, determined to win this battle. There were times, we I lost some fights, I had mult-organ failure, my sophomore year of college, then two years later, I had acute chest syndrome, then three years after that, I had it once again. But in spite of all that, I was still a warrior, still determined to fight,determined to live determined to be me.
Now, after all of the close calls and near death experiences, I am happy to say, that I am still here, to fight another day. But just when, I had worn out my body, through almost anything, I made the choice to have a baby.
It was during the birth of my daughter, that I disscovered, the true meaning of being a warrior.
To say that I had a difficult pregnancy, would be an understatement. There are actually, not enough words to describe what I chose to put my body through by having a baby. I was high risk to begin with then with added stressors, made it a very challenging experience. I remember, like it was yesterday, having to have an emergency c-section, not being able to see my daughter, having additional surgeries, because, during the c-section an artery was cut, and I was bleeding internally. Not being able to see or touch my child. I thought I had experienced the worst pain imagineable. I was two times my size, and I could barely walk. But somehow that warrior instinct that is in us all, allowed me to fight, to muddle through and do what it was that I felt I had to do.
Four years have passed since the birth of my daughter,and while it has been a blessing, it has also been so terribly hard. There are days when I am totally exhausted, but my daughter still has to be cared for. Then once a month, I am in the hospital, stressing about child care and how fast I can be released. What is harder then being sick, is having my 4 year old, look up at me and ask, “Mommy, why do you always get sick.” My daughter, cries when I tell her I have to go to the doctor, because she is scared I won’t be coming home. She thinks the coolest thing in the world, is to bring me food at the hospital and eat it with me. One day when she is old enough, I will sit her down and explain why Mommy gets sick, but for now, as much as I can, I just want her to continue to enjoy being 4.
I now realize that after all I have been through, how truly blessed I am to be able to be here and continue to fight. Growing up in a household with a father as a doctor and a mother as a nurse, I took for granted what it meant to have a supportive family. I remember times when I was sick,where the treatment that I received from doctors and nurses, dramatically changed when they found out that my father is a physician.
Being sick is one thing, but then being sick and single, that’s a whole different ball game. I have been in those relationships, where the guys have said that they couldn’t handle being with someone sick for the rest of their lives, and then there were those that would give the “I don’t like hospitals” speech, they would never visit but always call. I have always had supportive friends and family, finding a man to do the same, not so much. I often worried about being a burden, I always think about the right time to tell someone that I have sickle cell, I mean it is not the best topic for a first date. Things were easier when I only got sick twice a year, but now I get sick every 4-6 weeks, sometimes, it just becomes harder to explain, where I “disappear”. I know in time, that the Lord, will send Mr. Right my way.
No one tells you, that the older you become, the sicker you will get. When I was younger, twice a year I would get sick, oh, how I long for those days again. Now, fatigue, is part of my daily vocabulary. I think the best kept secret about being an adult with a chronic illness, are the lack of limited resources. When you are a child, there are so many programs and camps and test to apply for. But when you become an adult, those very resources that you had as a child, are no longer available to you. It is for this vey reason that I founded the Heart of Gold Foundation, Inc. It is a foundation, dedicated to fulfilling the dream/wishes of all adults that battle with a chronic illness. It is the goal of the foundation, to help those adults that need it the most, with the chance to have their hearts shine a little brighter. When you are to sick and feel that you can’t don’t worry because we can. For more information on the foundation, please visit our website http://www.heartogold.org.
wow, hi i am writing from England and I must say your blog really touched my heart, being a sickle cell suffer myself. I can relate to a few things you have written and this only inspire me more to work towards creating better awareness for this condition, i don’t know how i would do it, but God willing i will. Thank you for sharing your story.