The "r" word has been taboo to me for decades. Not because of altruistic motives, just because once I was wise enough to understand it wasn't OK, I stopped using it. Now, when I hear the "r" word, I cringe, even more so than before.
For those of you who still utter that word, I implore you to find a new one. There's plenty of them out there, but for me, my "go to" word is, "silly." I know it may not drive the punch you're trying to get home, but try it. I will thank you. My son will thank you. And millions of others will thank you, too. (For those of you with other words, please post them on my wall, apparently it's needed.)
I actually had a conversation recently where someone said "that word". I finally had the nerve to speak up and say that it wasn't okay. Their rebuttal? "Well, it's just a term. Everyone uses it. It's not about your son. It's just what you say." This coming from a person who just spent an hour loving and doting on my child. My response, "But, it is. It is my son. It's his technical diagnosis." It was like talking to a brick wall.
I finally decided not to argue anymore (because I knew I was right), but to speak to them from my heart (an angry heart, but mine nonetheless) I just asked, simply, "It would be a gift to me and Trek, and all of us, if would remove it from your vocabulary. It's not that hard." It was only then that I saw a touch of sympathy.
So, this one is for all of you who think it's OK to demean another person with your callous choice of words. Just remember, those whom you degrade are some one and a part of some one's family. And if you still choose to use "that word", I guess you're "lucky" enough to not have someone close to you have a medical term like that attached to them.
Please have enough respect to spread the word to end the word. Not that it matters, but WE will judge YOU for anything less.
Thursday, July 26, 2012
Wednesday, July 25, 2012
Fragile X
Fragile X will devastate you, there's no doubt about that.
Fragile X will force you to cope with and understand even the most mundane of situations-never mind the really difficult ones.
Fragile X will make you research and learn a lexicon you had no clue existed.
Fragile X will rearrange your life; the freedoms you once took for granted have now been replaced by therapies that used to belong to others.
Fragile X will teach you a new language-one you speak not with your mouth, but with your hands, because that is what your child needs to navigate this world.
Fragile X will break your heart once and then again a hundred times over.
But...
Fragile X will also bring you joy.
Fragile X will make you smile and laugh until you cry.
Fragile X will make you proud of your children, possibly more prideful than you would have been without it.
Fragile X will show you compassion.
Fragile X will make you look beyond yourself, and once you do, it will bring you closer to those you love, and introduce you to a family you have been waiting your entire life to meet, even if you didn't realize it.
Fragile X will make you shine with every accomplishment-no matter how far behind schedule.
Fragile X will rewrite your story, but don't forget, you are ultimately the author of this book.
Fragile X cannot determine the ending, only the beginning, because it's up to you to choose happiness, advocacy, education, and learning.
The opposite of this is frankly not an option.
So, open up your hearts, your minds, and join me on this journey. The ride may not always be calm, but I assure you, it will be rewarding. Take it from me, I know, even if only the first few pages of my story have been written, you will love the view from here. I promise.
Fragile X will force you to cope with and understand even the most mundane of situations-never mind the really difficult ones.
Fragile X will make you research and learn a lexicon you had no clue existed.
Fragile X will rearrange your life; the freedoms you once took for granted have now been replaced by therapies that used to belong to others.
Fragile X will teach you a new language-one you speak not with your mouth, but with your hands, because that is what your child needs to navigate this world.
Fragile X will break your heart once and then again a hundred times over.
But...
Fragile X will also bring you joy.
Fragile X will make you smile and laugh until you cry.
Fragile X will make you proud of your children, possibly more prideful than you would have been without it.
Fragile X will show you compassion.
Fragile X will make you look beyond yourself, and once you do, it will bring you closer to those you love, and introduce you to a family you have been waiting your entire life to meet, even if you didn't realize it.
Fragile X will make you shine with every accomplishment-no matter how far behind schedule.
Fragile X will rewrite your story, but don't forget, you are ultimately the author of this book.
Fragile X cannot determine the ending, only the beginning, because it's up to you to choose happiness, advocacy, education, and learning.
The opposite of this is frankly not an option.
So, open up your hearts, your minds, and join me on this journey. The ride may not always be calm, but I assure you, it will be rewarding. Take it from me, I know, even if only the first few pages of my story have been written, you will love the view from here. I promise.
Monday, July 23, 2012
Life is humbling. There are experiences that make you grab it by the reins and beg for you to hold on.
Very recently, my family has been expected to raise that fabled bar and hang on for dear life. In the wake of this unwanted turmoil, I have struggled to find peace. Some days are much better than others.
I am more thankful today than I was yesterday, or to be honest, a week ago, or months ago, or even years ago. Somehow, finding out "what was wrong" has freed me. And it has forced me to search beyond my shallow self and put my soul out there. To actually speak about what was wrong (or right) with my child and myself was not something I could have imagined doing.
I was not always this way. The night I found out about Trek, I was a mess. A hot, blubbering mess. I felt hurt, disregarded, and unbelievably sad. And, I was angry; really, really, really ANGRY! How could this happen to me? Didn't I already have enough to deal with? My father had cancer, my brother's family was going through so much, and now this unforeseen blip on a gene had blindsided me.
So, for a day, or two, or several, I walked in a haze of self-pity. It honestly took everything I had to get out of bed, shower, go to work, and try and have a semblance of a life. I was physically ill. It hurt that bad.
I thought if I repeated my mantra of, "I don't want to do this. I don't want to do this. I don't want to do this," it would somehow go away. I literally pinched myself just to be certain this nightmare was real.
But, I had support. I distinctly recall, that first night, my husband, Doug, saying to me, "We cannot forget. We cannot forget how bad this hurts. Somewhere down the road, we will need to remember this to help someone else when they hurt like we do." He was a man with a vision. He knew what we had to do when all of the strength I could muster up was to stifle my cries in the dead of the night so I didn't wake him or our children.
The first parts of that week are a blur. I didn't eat. I barely slept. All I wanted to do was hold my family close. I think I probably smothered them with enough hugs, kisses, and love to last a lifetime. I trudged on, barely keeping pace with the world around me.
The day we found out was Monday, March 26th. The following Wednesday I was ready to share our news. At the beginning of every staff meeting at my school, there is a time to share-celebrations and a-ha moments. I waited until the end of that time, and feeling a little bit guilty for being a downer, I shared our news with those who had been on the journey with us. I shared the news that my sweet, beautiful son, the one whom I had celebrated with pride when he hit his gross motor skills at "the end of the benchmark" and was elated when he began to babble at 20 months old, had fragile X. It was one of the hardest moments of my life. I barely had the wherewithal to get through it. To utter the words out loud and to explain it was beyond heart wrenching. I sat through that meeting without a clue as to what they were talking about. The only place I wanted to be was home. Home with my family, to shelter them from the whirlwind that our life was about to become.
At the end of that week, I found a beacon. I finally had enough courage to visit the fragile X sites. God knows when I first googled this "monster" there was not a lot of hope out there for us. Then I happened upon the National Fragile X site, and it was there I found Ashley. A mother of a kiddo in Phoenix who knew exactly where I was coming from. She gave me peace. After talking to her, I slept for the first time in months. I trusted her and what she was saying...that it was going to be okay. It may not have been the life I envisioned, but it still had wonderful things in store for me and my family.
Not long after that, I found Kathleen. That beautiful soul I mentioned yesterday. I think it was fate I happened to stumble (and stumble I did) upon her blog. She put into words every single thing I felt. She KNEW how wrenching it was to hear "those words" for the first time. She KNEW how angry I was. She KNEW that I felt broken, ashamed, and sorrowful. She just KNEW.
When I decided to reach out to these women, my life changed. And unbeknowst to them, my family's life changed, too. I became happier, more understanding, and loving. I became a better mother, wife, friend, daughter, sister, and teacher. THEY did that for me. And, at the time, I had not even met them.
I have many families. Those who share the same experiences of my childhood, those who were with me growing up, and all of those I've met along the way. I also have a family of souls I only know because I am a carrier of fragile X and my son is affected by this gene I passed on. They are my family who help us get through everyday life...speech therapists, physical therapists, occupational therapists, and play therapists. They are doctors, specialists, geneticists, and pediatricians. They are those fx families who bare their souls to help those of us who need a hand to hold and guide us on this very scary journey. They are the children affected, like my son, and the brothers, sisters, fathers, grandparents, aunts, uncles, and cousins we love.
To those who have not been on this journey, or one like ours, I'm sure it sounds surreal to say that I could not and would not imagine my life any other way. That repeat of "threes" has given me love, and friendship, and support that just keeps repeating itself-day, after day, after day.
Very recently, my family has been expected to raise that fabled bar and hang on for dear life. In the wake of this unwanted turmoil, I have struggled to find peace. Some days are much better than others.
I am more thankful today than I was yesterday, or to be honest, a week ago, or months ago, or even years ago. Somehow, finding out "what was wrong" has freed me. And it has forced me to search beyond my shallow self and put my soul out there. To actually speak about what was wrong (or right) with my child and myself was not something I could have imagined doing.
I was not always this way. The night I found out about Trek, I was a mess. A hot, blubbering mess. I felt hurt, disregarded, and unbelievably sad. And, I was angry; really, really, really ANGRY! How could this happen to me? Didn't I already have enough to deal with? My father had cancer, my brother's family was going through so much, and now this unforeseen blip on a gene had blindsided me.
So, for a day, or two, or several, I walked in a haze of self-pity. It honestly took everything I had to get out of bed, shower, go to work, and try and have a semblance of a life. I was physically ill. It hurt that bad.
I thought if I repeated my mantra of, "I don't want to do this. I don't want to do this. I don't want to do this," it would somehow go away. I literally pinched myself just to be certain this nightmare was real.
But, I had support. I distinctly recall, that first night, my husband, Doug, saying to me, "We cannot forget. We cannot forget how bad this hurts. Somewhere down the road, we will need to remember this to help someone else when they hurt like we do." He was a man with a vision. He knew what we had to do when all of the strength I could muster up was to stifle my cries in the dead of the night so I didn't wake him or our children.
The first parts of that week are a blur. I didn't eat. I barely slept. All I wanted to do was hold my family close. I think I probably smothered them with enough hugs, kisses, and love to last a lifetime. I trudged on, barely keeping pace with the world around me.
The day we found out was Monday, March 26th. The following Wednesday I was ready to share our news. At the beginning of every staff meeting at my school, there is a time to share-celebrations and a-ha moments. I waited until the end of that time, and feeling a little bit guilty for being a downer, I shared our news with those who had been on the journey with us. I shared the news that my sweet, beautiful son, the one whom I had celebrated with pride when he hit his gross motor skills at "the end of the benchmark" and was elated when he began to babble at 20 months old, had fragile X. It was one of the hardest moments of my life. I barely had the wherewithal to get through it. To utter the words out loud and to explain it was beyond heart wrenching. I sat through that meeting without a clue as to what they were talking about. The only place I wanted to be was home. Home with my family, to shelter them from the whirlwind that our life was about to become.
At the end of that week, I found a beacon. I finally had enough courage to visit the fragile X sites. God knows when I first googled this "monster" there was not a lot of hope out there for us. Then I happened upon the National Fragile X site, and it was there I found Ashley. A mother of a kiddo in Phoenix who knew exactly where I was coming from. She gave me peace. After talking to her, I slept for the first time in months. I trusted her and what she was saying...that it was going to be okay. It may not have been the life I envisioned, but it still had wonderful things in store for me and my family.
Not long after that, I found Kathleen. That beautiful soul I mentioned yesterday. I think it was fate I happened to stumble (and stumble I did) upon her blog. She put into words every single thing I felt. She KNEW how wrenching it was to hear "those words" for the first time. She KNEW how angry I was. She KNEW that I felt broken, ashamed, and sorrowful. She just KNEW.
When I decided to reach out to these women, my life changed. And unbeknowst to them, my family's life changed, too. I became happier, more understanding, and loving. I became a better mother, wife, friend, daughter, sister, and teacher. THEY did that for me. And, at the time, I had not even met them.
I have many families. Those who share the same experiences of my childhood, those who were with me growing up, and all of those I've met along the way. I also have a family of souls I only know because I am a carrier of fragile X and my son is affected by this gene I passed on. They are my family who help us get through everyday life...speech therapists, physical therapists, occupational therapists, and play therapists. They are doctors, specialists, geneticists, and pediatricians. They are those fx families who bare their souls to help those of us who need a hand to hold and guide us on this very scary journey. They are the children affected, like my son, and the brothers, sisters, fathers, grandparents, aunts, uncles, and cousins we love.
To those who have not been on this journey, or one like ours, I'm sure it sounds surreal to say that I could not and would not imagine my life any other way. That repeat of "threes" has given me love, and friendship, and support that just keeps repeating itself-day, after day, after day.
The Strength of a Person
The strength of a person is rarely seen on the outside. The true strength of a person rests in places we cannot imagine.
The strongest people I know are those who are lost and forlorn. Those who have the courage to face the most dreadful of days. The days they feel weak, and helpless, and searching for a safe place to land...a cushion to rest their weariness.
If we can all stop for a moment and look beyond ourselves we will feel the true strength of those who share this world with us. And if we are brave enough, we just may learn something about ourselves, in the strength of another person.
The strongest people I know are those who are lost and forlorn. Those who have the courage to face the most dreadful of days. The days they feel weak, and helpless, and searching for a safe place to land...a cushion to rest their weariness.
If we can all stop for a moment and look beyond ourselves we will feel the true strength of those who share this world with us. And if we are brave enough, we just may learn something about ourselves, in the strength of another person.
A Home Within My Heart
God has niched out a place within my heart that is a home for those I love. It is a place I carry with me everywhere I go.
They accompany me on the roads of pain and carry me on when I grasp to find the ground to put one foot in front of the other.
They bring me peace as the new dawn rises and as the angels appear to sing me to sleep at the end of the hard days. They are the sweet lullaby that knows the song I have inside of my heart.
They may not know they walk this path with me, but they are there. Gently nudging me forward and guiding me on my way.
I take from each of them the parts I need to survive and it is my prayer, as I carry them on my way, that I can fill their hearts just as they have filled mine.
They accompany me on the roads of pain and carry me on when I grasp to find the ground to put one foot in front of the other.
They bring me peace as the new dawn rises and as the angels appear to sing me to sleep at the end of the hard days. They are the sweet lullaby that knows the song I have inside of my heart.
They may not know they walk this path with me, but they are there. Gently nudging me forward and guiding me on my way.
I take from each of them the parts I need to survive and it is my prayer, as I carry them on my way, that I can fill their hearts just as they have filled mine.
The Inspirational Women I Know
The inspirational women I know have changed my life.
The inspirational women I know face obstacles in their midst with grace and courage.
The inspirational women I know fight cancer-cancers within themselves, their spouses, their siblings, and their children.
The inspirational women I know face diagnoses that are foreign and obscure to them-some with names they cannot pronounce.
The inspirational women I know have lived unimaginable losses.
The inspirational women I know go on despite the loss of their children, and they fight hard to keep their memory alive.
The inspirational women I know are single mothers who alone raise their children in this unfamiliar world.
The inspirational women I know are grandmothers, mothers, sisters, and daughters.
The inspirational women I know find hope and strength in the deepest recesses of their soul.
The inspirational women I know are tough. They are strong. The shine their light for all of us to see.
The inspirational women I know inspire me-they let me know I can pick up the pieces of my life and go on. Because if they can do it, then it shouldn't be that hard for me.
The inspirational women I know are some of the most precious souls on earth.
Let it be a lesson to all of us...Love them, treasure them, and never let them forget just how awe inspiring they are.
The inspirational women I know face obstacles in their midst with grace and courage.
The inspirational women I know fight cancer-cancers within themselves, their spouses, their siblings, and their children.
The inspirational women I know face diagnoses that are foreign and obscure to them-some with names they cannot pronounce.
The inspirational women I know have lived unimaginable losses.
The inspirational women I know go on despite the loss of their children, and they fight hard to keep their memory alive.
The inspirational women I know are single mothers who alone raise their children in this unfamiliar world.
The inspirational women I know are grandmothers, mothers, sisters, and daughters.
The inspirational women I know find hope and strength in the deepest recesses of their soul.
The inspirational women I know are tough. They are strong. The shine their light for all of us to see.
The inspirational women I know inspire me-they let me know I can pick up the pieces of my life and go on. Because if they can do it, then it shouldn't be that hard for me.
The inspirational women I know are some of the most precious souls on earth.
Let it be a lesson to all of us...Love them, treasure them, and never let them forget just how awe inspiring they are.
Saturday, July 21, 2012
Doug
My Doug,
I am writing this to you on my birthday because you are the most precious present I have ever received. You are such a rock to me in this very uncertain world. You sew the pieces of me together. You make me want to do better, you make me strive to make our ends meet.
I am sending this to you on my birthday, because if I did not have you, nothing would matter. You are the beacon that brings me home, you are my solitude, you are a gift that I feel I did not deserve. It may sound silly, but I cannot imagine my life without you.
YOU, are amazing. YOU hold my hand when I reach for a soul to hold dear. I cannot, could not imagine my life without YOU. YOU, help make me whole. YOU, hold my world in your hand. YOU, are such a gift. I love, YOU. Thank you for always trusting in me, and us. Thank you, for being the strongest man I know.
YOU are "Tougher Than the Rest"
I love you,
Sarah
http://www.youtube.com/watch?v=_91hNV6vuBY
I am writing this to you on my birthday because you are the most precious present I have ever received. You are such a rock to me in this very uncertain world. You sew the pieces of me together. You make me want to do better, you make me strive to make our ends meet.
I am sending this to you on my birthday, because if I did not have you, nothing would matter. You are the beacon that brings me home, you are my solitude, you are a gift that I feel I did not deserve. It may sound silly, but I cannot imagine my life without you.
YOU, are amazing. YOU hold my hand when I reach for a soul to hold dear. I cannot, could not imagine my life without YOU. YOU, help make me whole. YOU, hold my world in your hand. YOU, are such a gift. I love, YOU. Thank you for always trusting in me, and us. Thank you, for being the strongest man I know.
YOU are "Tougher Than the Rest"
I love you,
Sarah
http://www.youtube.com/watch?v=_91hNV6vuBY
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