I am a parent but not just like everyone else! I am different; I have disabilities or limitations as I prefer to call them. That changes things not only for me but also my husband and child. I fight daily to keep the independence that is so very precious to me. I have worked hard my whole life and have always been independent and somewhat rebellious even stubborn some would say. But I have always had to fight and have always considered myself a strong willed person. Getting diagnosed at such a young age with MS would definitely cause some to take a step back but not me, I never missed a beat. I just always knew that I would be ok, that I would prove the doctors wrong. They told me I would be completely disabled and dependent on others by the time I was 30, that I would never hold a job, that I would never be able to have a family! For the most part I accomplished everything they told me I would never do. Not to say that it has been easy! It has been a hard road and I have had a lot of setbacks by I did it! There was a lot of days that I didn't think I would overcome it but I was determined to the core. But this illness has not been that simple. I’m talking about my arthritis, Ankolysing Spondylitis. It has proved to me that I am nowhere near as strong as I thought I was. This disease has really thrown me for a loop. It is not something that I can push through or ignore very easily. The pain that comes from this disease is intense and something I was totally unprepared for! The physical disabilities associated with AS is something I understand and could handle although it was hard. But the pain changes you, changes your personality and outlook on life. The problem is that there is no cure so without a doubt I know it will only get worse and due to the aggressiveness of my cause it will probably happen quickly. This is something I still find very hard to accept. I tell you all of this to not make you feel sorry for me. I hate pity but to help you understand the facts. Tripp is a very bright little boy but he has already been faced with things I had hoped he would not see until he was much older and able to understand better. He has seen many days at which I am unable to care for him, dress him, cook breakfast for him, bath him and put him to bed. There has been many times when he has wanted me to sit down and play with him and I physically can't. I have missed many activities because I was unable to leave my bed or couldn't be in the heat. We noticed when he was little he would grunt when he sat down and I finally figured out he was copying me. When I hurt it is hard for me to sit or get to a standing position after sitting for a while, so he had heard me make that noise. He thinks at times he needs a walking stick because he "falls" a lot! Lol Instead of me being with him in the living room he comes and sees me in my bed or calls to me from another room. These are all things I wish was different. For him it is the norm but I dread the day he realizes that not all moms are like me and he ask me why I can’t do the other things moms can do. I am supposed to be his hero, his protector but at times he takes care of me. Sunday was a particularly painful day. On the way from home I had hit my pain threshold and was in agony! I was covering my eyes and crying silently but every bump in the road would make me release an uncontrollable outcry from pain. I had my seat in the front laid all the way back and was just trying to make it home while Cliff drove. Tripp took my hand sweetly and rubbed his fingers softly on the top of my hand. Every time we hit a bump or train track he would ask "Mama are you ok?" It was so sweet and kind but part of me was saddened that he had to worry about me at all. He should not have to worry about me; I am supposed to worry about him. I worry about how this will shape him as a child, teenager and adult. Will he look back on his childhood with fond memories or with sadness? Will he be embarrassed by me as he gets older? He resent the responsibilities that he will have that other children might not? I hope he will be proud of me! I hope he will see how hard I try to make him happy and make great memories that will last a lifetime. I hope that I can show him that he can do anything he puts his mind too. I hope he will know that his laughter and smile is what kept me going. That my love for him drove be to be the best person I could be! Now let me say that I have every day struggles but they are nothing compared to what they would be without the love, friendship and support of my soul mate and husband. He is truly an incredible person! He is so kind and patient yet strong. He is my rock! He is such an amazing father. Not the biggest on discipline but is definitely his son's hero. He is always there to reassure me and make me smile when I need it or just a comforting hug when things are rough. He never complains or voices any regrets and always picks up the pieces when I am unable to do my part. He is the love of my life and I am blessed to have found him. Also I need to say that I know this may seem doom and gloom but it really is not, it’s just our life. It is the hand that we have been dealt and I am determined to prove not only to myself but to my son and everyone else that I can be the person I want to be even though I have physical limitations. I can accomplish anything I put my mind too. I will always strive to have a smile and a friendly disposition. I will always strive to show everyone love and kindness. And above all be someone my family and friends will be proud to know. I know this is a very personal story but it helps me to share, to put my feelings on paper. That way somewhere down the line when I am unable to voice my feelings or concerns or maybe not around, I have documented them somewhere. I hope my story gives someone else courage and determination to fight through whatever their difficulties may be but to ultamiately be a good person and have faith in yourself.
Monday, October 8, 2012
The Story of Us
I am a parent but not just like everyone else! I am different; I have disabilities or limitations as I prefer to call them. That changes things not only for me but also my husband and child. I fight daily to keep the independence that is so very precious to me. I have worked hard my whole life and have always been independent and somewhat rebellious even stubborn some would say. But I have always had to fight and have always considered myself a strong willed person. Getting diagnosed at such a young age with MS would definitely cause some to take a step back but not me, I never missed a beat. I just always knew that I would be ok, that I would prove the doctors wrong. They told me I would be completely disabled and dependent on others by the time I was 30, that I would never hold a job, that I would never be able to have a family! For the most part I accomplished everything they told me I would never do. Not to say that it has been easy! It has been a hard road and I have had a lot of setbacks by I did it! There was a lot of days that I didn't think I would overcome it but I was determined to the core. But this illness has not been that simple. I’m talking about my arthritis, Ankolysing Spondylitis. It has proved to me that I am nowhere near as strong as I thought I was. This disease has really thrown me for a loop. It is not something that I can push through or ignore very easily. The pain that comes from this disease is intense and something I was totally unprepared for! The physical disabilities associated with AS is something I understand and could handle although it was hard. But the pain changes you, changes your personality and outlook on life. The problem is that there is no cure so without a doubt I know it will only get worse and due to the aggressiveness of my cause it will probably happen quickly. This is something I still find very hard to accept. I tell you all of this to not make you feel sorry for me. I hate pity but to help you understand the facts. Tripp is a very bright little boy but he has already been faced with things I had hoped he would not see until he was much older and able to understand better. He has seen many days at which I am unable to care for him, dress him, cook breakfast for him, bath him and put him to bed. There has been many times when he has wanted me to sit down and play with him and I physically can't. I have missed many activities because I was unable to leave my bed or couldn't be in the heat. We noticed when he was little he would grunt when he sat down and I finally figured out he was copying me. When I hurt it is hard for me to sit or get to a standing position after sitting for a while, so he had heard me make that noise. He thinks at times he needs a walking stick because he "falls" a lot! Lol Instead of me being with him in the living room he comes and sees me in my bed or calls to me from another room. These are all things I wish was different. For him it is the norm but I dread the day he realizes that not all moms are like me and he ask me why I can’t do the other things moms can do. I am supposed to be his hero, his protector but at times he takes care of me. Sunday was a particularly painful day. On the way from home I had hit my pain threshold and was in agony! I was covering my eyes and crying silently but every bump in the road would make me release an uncontrollable outcry from pain. I had my seat in the front laid all the way back and was just trying to make it home while Cliff drove. Tripp took my hand sweetly and rubbed his fingers softly on the top of my hand. Every time we hit a bump or train track he would ask "Mama are you ok?" It was so sweet and kind but part of me was saddened that he had to worry about me at all. He should not have to worry about me; I am supposed to worry about him. I worry about how this will shape him as a child, teenager and adult. Will he look back on his childhood with fond memories or with sadness? Will he be embarrassed by me as he gets older? He resent the responsibilities that he will have that other children might not? I hope he will be proud of me! I hope he will see how hard I try to make him happy and make great memories that will last a lifetime. I hope that I can show him that he can do anything he puts his mind too. I hope he will know that his laughter and smile is what kept me going. That my love for him drove be to be the best person I could be! Now let me say that I have every day struggles but they are nothing compared to what they would be without the love, friendship and support of my soul mate and husband. He is truly an incredible person! He is so kind and patient yet strong. He is my rock! He is such an amazing father. Not the biggest on discipline but is definitely his son's hero. He is always there to reassure me and make me smile when I need it or just a comforting hug when things are rough. He never complains or voices any regrets and always picks up the pieces when I am unable to do my part. He is the love of my life and I am blessed to have found him. Also I need to say that I know this may seem doom and gloom but it really is not, it’s just our life. It is the hand that we have been dealt and I am determined to prove not only to myself but to my son and everyone else that I can be the person I want to be even though I have physical limitations. I can accomplish anything I put my mind too. I will always strive to have a smile and a friendly disposition. I will always strive to show everyone love and kindness. And above all be someone my family and friends will be proud to know. I know this is a very personal story but it helps me to share, to put my feelings on paper. That way somewhere down the line when I am unable to voice my feelings or concerns or maybe not around, I have documented them somewhere. I hope my story gives someone else courage and determination to fight through whatever their difficulties may be but to ultamiately be a good person and have faith in yourself.
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