Tuesday, May 26, 2009

44 Years of Sickle Beta Thalassemia! Happy Birthday to Me!!

I am about to celebrate my 44th birthday this Friday. I'm excited as usual because each birthday celebrated means another year I have survived. I have a combination of Sickle Cell and Beta Thalassemia. They are blood disorders that, when combined in my case, act like Sickle Cell Disease (SCD). Over the years I have suffered through a lot of pain, hospitalizations, and other health issues that developed because of my blood disorder. There's no need to go into all of that here. I once read that people with SCD die before they turned 40. I anxiously awaited my 40th hoping that I would still be alive and not a statistic in a biology book. There have been a lot of bumps in the road along the way, but here I am, fairly healthy and have not endured a hospital stay in almost two years!

My family has been by my side through all of it. I have watched my mother worry about me all my life. As I am now older, I can look back and really 'see' all the worry and pain she carried. She would not let me ride a bike for fear of getting hurt. She spent so many days waiting with me at the emergency room, so many hours sitting by my bedside when I was admitted worried that this time I would not be coming home. She prayed a lot and I am sure, like many concerned mothers, she cried a lot. I wish she had not spent so much of her time worrying. But she is a mother and that's what mothers do. I am now a mother and I can relate. I am 44 and she still worries. I learned over the years not to hide my crises and pain because she always wanted to be able to say a special prayer. She never wanted to be in the dark about my problems and I learned that it was OK to share with her because she wanted to be able to worry because that meant at least I was still alive.

My husband picked up where my mother couldn't...when I became an adult, moved away from home, became a college graduate and a loving mother. He sat by my hospital bed when needed, looking on with all the love in the world in his eyes and all the concern in the world. He worried as I had our first child. He worried as I died and came back to life while trying to have our second child. He is here now, growing older with me, hoping that we will be able to spend the rest of an appropriately long lives together.

My children have unfortunately had to live with a parent dealing with a bothersome illness. They all worry when I am in pain. My eldest daughter lived without me for six weeks while I was in a coma during her third year of life, bouncing from friend to friend as my husband traveled out of state to see me (I was airlifted to another military facility). She has seen me in the hospital with tubes and needles stuck in my throat, my nose, my arms. I imagine there have been many times in her short life when she has worried that mommy would not come home. I think she has internalized those fears. Now that she is an adult, she visits all the time telling me she misses me if she doesn't see me every few days. She got physically ill when I was out of town for a couple weeks helping my mother back to good health. Ultimately she worries that her mom will be taken too early because she has had to think this way since she was a toddler. For that I am sorry.

But I am not gone, I am still here and plan to be here for many years to come. I plan to be here to see the marriages of my daughters and the births of my grandchildren. I am not going anywhere any time soon. I am happy with my life, my friends, my family. I will see many many more birthdays come and go.

Happy Birthday to Me and Cheers to you!!