The One Thing I Would Most Like You To Know About Me...
Our dearest Judi has asked us to write about what we would like someone to know about us. This is for the October Artsy Essay contest. I kept going back and forth on what I'd like people to know about me, and I finally have decided.
I was born with congenital heart disease (I have 2 holes in my heart), and a rare lung condition called pulmonary hypertension. Since doctors had no good answers for my parents on how to treat my condition when I was a baby, they were told that I might survive a year, or I might survive 50. They had no idea, but told my parents to prepare for the worst.
After reaching my 30th birthday last month, it is quite apparent to me that somehow I'm beating the odds. I grew up with a lot of limitations, and I still have many that I face as an adult. And while so many people have told me how strong I am, how unbelievable I am to brave everything I go to, my biggest secret is that I long terribly to have a normal life.
I wish so much that I was a normal person, in the physical sense. I know not everyone is "normal," but I wish I knew what it was like to do so many things that I just cannot do. I wish I could swim. I never learned because it would tire me out quickly, and I also had so many ear infections when I was younger. I wish I could swim in the ocean with dolphins and tropical fish. It is a wonder I love the ocean so much. I long to be there, to know what it feels like to hold my breath, take a dive, and see what is in the waters below.
I wish I could run. I long to just take off one day, running down the street, to no place in particular. I wish I could know what it feels like to do that, and not want to collapse afterward, so tired, my heart pumping so hard I feel like it's going to bust out of my chest. That is how I have felt most of my life, that any little thing I do, or big thing I attempt, leaves me and my heart and lungs in such distress that I almost feel like the end is near. It's a horrible feeling. Running is almost like a death sentence to me. Perhaps it is why I wish I could do it so much. To me, running is almost like a freedom. A freedom I will never know.
I wish I could work again. It's been over 5 years since I had to quite my preschool teaching job, and while I am better after doing that, I long to teach again. I miss the environment, I miss the children. I miss being looked up to by little ones, I wish I could see their faces when they were learning something new. The physical demands on me every day wore me down, though, and I know I could never go back into that environment again.
Perhaps the biggest wish I have felt and longed for lately is having a baby. It is not possible for me to physically go through. And yet, even if one day I adopted, just holding the baby or carrying all the things needed when going out is impossible. Wanting a child is the biggest heartache I have. When my sister and my best friend were both pregnant this past year, it made me realize even more how much I cannot have a baby. I cried almost every night, wishing I could hold and love a child the way a mother can. The fear of never being a mom is something that tears my heart out.
Being normal in the physical sense is something I don't ever really discuss with anyone. I almost feel like it's a silly dream, perhaps something most people don't want to hear about. But it's very real to me, and I keep it to myself. I don't want people to hear the pain I feel when I know I can't do the things I really wish I could do. It is not easy living with a disease that limits your everyday life. It breaks your heart when you cannot do what others around you can.
Written by melonlady1724 . Link to this entry
This entry has 8 comments: (Add your own)
One of my favorite prayers: "God grant me the grace of a normal day."http://journals.aol.com/oceanmrc/MidlifeMatters/ Comment from oceanmrc - 11/5/05 1:18 PM
What a moving entry this is. Physically you may not have the "normalcy" you desperately wish to have. But emotionally, you are far above normal. Keep on dreaming and hoping...there are always new developments in the medical field. And I will hope the researchers and scientists will find the perfect treatment to enable you to do all you wish to do!http://journals.aol.com/bedazzzled1/Bedazzled/Comment from bedazzzled1 - 11/1/05 3:56 PM
Oh, my sister. I've known that you have wanted to do all these things for awhile now. But just because you are unable to do them, just remember that God has blessed you in many other ways to make your life as fulfilling as it can be. Your other gifts are a blessing to everyone in your life and even though you feel left out on the things you are unable to do, remember that we all love you for who you are and can not imagine you not being present in our lives. I love you so much. :* Comment from balonie24 - 10/23/05 7:24 PM
I think we all can relate to this desire to be normal, for in being "normal" we find acceptance and love. It is scary to be "out there," to be different. But different has its advantages, too. And sometimes, when you dare to be "different," you find people who are "different" in the same ways as you. Then the differentness becomes...normal! My best wishes to you on your journey. http://journals.aol.com/theresarrt7/TheresaWilliams-author/ Comment from theresarrt7 - 10/22/05 6:30 PM
Oh Dear lady......... I wish that you could have these simple things too. I am honored that you wrote these words down and shared them, this is a very important secret to share.warm hugs to you,judi Comment from judithheartsong - 10/22/05 2:37 PM
it is crushing when such a deep desire is forever to be left outside our grasp. I pray you may find peace. I know things like this lurk in the darkness of our souls and only creep out when we allow them to. Thank you for sharing your heart so beautifully http://journals.aol.com/pixiedustnme/Inmyopinion/entries/1304 Comment from pixiedustnme - 10/21/05 9:31 PM
Oh, my heart broke for you with the comment about having a baby. I went through years of infertility. Don't give up on that dream. There are women who are completely paralyzed who have children!http://journals.aol.com/hestiahomeschool/HomeschoolingJournal/ Comment from hestiahomeschool - 10/21/05 9:17 PM
I understand. I really, really do. Christinahttp://journals.aol.com/ckays1967/myjourneywithMS/Comment from ckays1967 - 10/21/05 7:23 PM
I was born with congenital heart disease (I have 2 holes in my heart), and a rare lung condition called pulmonary hypertension. Since doctors had no good answers for my parents on how to treat my condition when I was a baby, they were told that I might survive a year, or I might survive 50. They had no idea, but told my parents to prepare for the worst.
After reaching my 30th birthday last month, it is quite apparent to me that somehow I'm beating the odds. I grew up with a lot of limitations, and I still have many that I face as an adult. And while so many people have told me how strong I am, how unbelievable I am to brave everything I go to, my biggest secret is that I long terribly to have a normal life.
I wish so much that I was a normal person, in the physical sense. I know not everyone is "normal," but I wish I knew what it was like to do so many things that I just cannot do. I wish I could swim. I never learned because it would tire me out quickly, and I also had so many ear infections when I was younger. I wish I could swim in the ocean with dolphins and tropical fish. It is a wonder I love the ocean so much. I long to be there, to know what it feels like to hold my breath, take a dive, and see what is in the waters below.
I wish I could run. I long to just take off one day, running down the street, to no place in particular. I wish I could know what it feels like to do that, and not want to collapse afterward, so tired, my heart pumping so hard I feel like it's going to bust out of my chest. That is how I have felt most of my life, that any little thing I do, or big thing I attempt, leaves me and my heart and lungs in such distress that I almost feel like the end is near. It's a horrible feeling. Running is almost like a death sentence to me. Perhaps it is why I wish I could do it so much. To me, running is almost like a freedom. A freedom I will never know.
I wish I could work again. It's been over 5 years since I had to quite my preschool teaching job, and while I am better after doing that, I long to teach again. I miss the environment, I miss the children. I miss being looked up to by little ones, I wish I could see their faces when they were learning something new. The physical demands on me every day wore me down, though, and I know I could never go back into that environment again.
Perhaps the biggest wish I have felt and longed for lately is having a baby. It is not possible for me to physically go through. And yet, even if one day I adopted, just holding the baby or carrying all the things needed when going out is impossible. Wanting a child is the biggest heartache I have. When my sister and my best friend were both pregnant this past year, it made me realize even more how much I cannot have a baby. I cried almost every night, wishing I could hold and love a child the way a mother can. The fear of never being a mom is something that tears my heart out.
Being normal in the physical sense is something I don't ever really discuss with anyone. I almost feel like it's a silly dream, perhaps something most people don't want to hear about. But it's very real to me, and I keep it to myself. I don't want people to hear the pain I feel when I know I can't do the things I really wish I could do. It is not easy living with a disease that limits your everyday life. It breaks your heart when you cannot do what others around you can.
Written by melonlady1724 . Link to this entry
This entry has 8 comments: (Add your own)
One of my favorite prayers: "God grant me the grace of a normal day."http://journals.aol.com/oceanmrc/MidlifeMatters/ Comment from oceanmrc - 11/5/05 1:18 PM
What a moving entry this is. Physically you may not have the "normalcy" you desperately wish to have. But emotionally, you are far above normal. Keep on dreaming and hoping...there are always new developments in the medical field. And I will hope the researchers and scientists will find the perfect treatment to enable you to do all you wish to do!http://journals.aol.com/bedazzzled1/Bedazzled/Comment from bedazzzled1 - 11/1/05 3:56 PM
Oh, my sister. I've known that you have wanted to do all these things for awhile now. But just because you are unable to do them, just remember that God has blessed you in many other ways to make your life as fulfilling as it can be. Your other gifts are a blessing to everyone in your life and even though you feel left out on the things you are unable to do, remember that we all love you for who you are and can not imagine you not being present in our lives. I love you so much. :* Comment from balonie24 - 10/23/05 7:24 PM
I think we all can relate to this desire to be normal, for in being "normal" we find acceptance and love. It is scary to be "out there," to be different. But different has its advantages, too. And sometimes, when you dare to be "different," you find people who are "different" in the same ways as you. Then the differentness becomes...normal! My best wishes to you on your journey. http://journals.aol.com/theresarrt7/TheresaWilliams-author/ Comment from theresarrt7 - 10/22/05 6:30 PM
Oh Dear lady......... I wish that you could have these simple things too. I am honored that you wrote these words down and shared them, this is a very important secret to share.warm hugs to you,judi Comment from judithheartsong - 10/22/05 2:37 PM
it is crushing when such a deep desire is forever to be left outside our grasp. I pray you may find peace. I know things like this lurk in the darkness of our souls and only creep out when we allow them to. Thank you for sharing your heart so beautifully http://journals.aol.com/pixiedustnme/Inmyopinion/entries/1304 Comment from pixiedustnme - 10/21/05 9:31 PM
Oh, my heart broke for you with the comment about having a baby. I went through years of infertility. Don't give up on that dream. There are women who are completely paralyzed who have children!http://journals.aol.com/hestiahomeschool/HomeschoolingJournal/ Comment from hestiahomeschool - 10/21/05 9:17 PM
I understand. I really, really do. Christinahttp://journals.aol.com/ckays1967/myjourneywithMS/Comment from ckays1967 - 10/21/05 7:23 PM
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