Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 Michele, That was beautifully written, I can't wait to read the next chapters... well done! Begas Mom to (5yo charger) Sydney Australia > > > > Hi! > Here is my first column - published in the Pike Press today, 1-10- 07. > > > > Michele W > > > > Mom on a Mission > > > > > > " What to Expect When You're Expecting " . " What to Expect the First Year. " > The necessary manuals for all moms on a mission. When my first son was > born, I read each manual thoroughly comparing the progress of my pregnancy > with the milestones in the book, delighting in the textbook perfection of > it. The book said morning sickness would end after the first trimester. > Sure enough, mine ended as I finished my 3rd month of pregnancy. Things > continued perfectly forward to a perfect birth, and I was rewarded with a > perfect son. > > Each month, I checked off the milestones he'd achieved at the start of each > chapter noting how remarkably advanced he was. When we ran into obstacles, > difficulty falling asleep, fevers, the terrible twos, the answers could be > found in the manual. > > I was a mom on a mission; on a mission to do my very best at every step > along the way for my son. The manuals were my guides to the perfect > execution of my mission. Other moms were readily available to share and > compare as we all traipsed along happily raising our children. > > Then came my second pregnancy. Another chance at perfection. But this > time, things didn't go by the book. Various discomforts plagued me and > things didn't feel quite right although my doctor couldn't identify anything > unusual. This birth was difficult and complicated. From the moment she > arrived, it was obvious that something was definitely not quite right with > our daughter. > > I lay awake the first night of my baby girl's life, alone after the rest of > the family had gone home for some much needed sleep. I couldn't sleep. > Down the hall, my baby girl howled as doctors tried again and again to get > an IV into her tiny newborn veins. Finally, success was achieved in a vein > in her scalp. > > This time, the manuals would be useless. No books held the answers to a > baby who couldn't suck, may not be able to hear, perhaps couldn't see, and > didn't like to be held. If I thought I had a mission before, it was nothing > compared to this one. The difference between traveling by car across the > United States and by space shuttle to the furthest limits of the universe. > There would be little to share and compare with the other moms who had > become my comrades in child rearing thus far. > > Fortunately, we were given a diagnosis quite early. CHARGE syndrome. An > explanation for the problems we were facing. A connection with other > families worldwide facing the same mission. A connection to professionals > studying the related issues. And an actual manual from the CHARGE Syndrome > Foundation. > > A mom on a mission with two different children going different directions > requiring different sets of manuals on two simultaneous missions: one > across the country with a million other drivers and one to the outer limits > with a few fellow travelers. > > > > > > > > Michele Westmaas is a mom, a wife, and an advocate for people with > disabilities. > > Learn more about CHARGE syndrome at www.chargesyndrome.org. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 - Thank you so much!! Michele _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Begas Sent: Wednesday, January 10, 2007 1:41 PM To: CHARGE Subject: Re: My first column Michele, That was beautifully written, I can't wait to read the next chapters... well done! Begas Mom to (5yo charger) Sydney Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 wow!! you have a way with words!! My first column Hi! Here is my first column - published in the Pike Press today, 1-10-07. Michele W Mom on a Mission " What to Expect When You're Expecting " . " What to Expect the First Year. " The necessary manuals for all moms on a mission. When my first son was born, I read each manual thoroughly comparing the progress of my pregnancy with the milestones in the book, delighting in the textbook perfection of it. The book said morning sickness would end after the first trimester. Sure enough, mine ended as I finished my 3rd month of pregnancy. Things continued perfectly forward to a perfect birth, and I was rewarded with a perfect son. Each month, I checked off the milestones he'd achieved at the start of each chapter noting how remarkably advanced he was. When we ran into obstacles, difficulty falling asleep, fevers, the terrible twos, the answers could be found in the manual. I was a mom on a mission; on a mission to do my very best at every step along the way for my son. The manuals were my guides to the perfect execution of my mission. Other moms were readily available to share and compare as we all traipsed along happily raising our children. Then came my second pregnancy. Another chance at perfection. But this time, things didn't go by the book. Various discomforts plagued me and things didn't feel quite right although my doctor couldn't identify anything unusual. This birth was difficult and complicated. From the moment she arrived, it was obvious that something was definitely not quite right with our daughter. I lay awake the first night of my baby girl's life, alone after the rest of the family had gone home for some much needed sleep. I couldn't sleep. Down the hall, my baby girl howled as doctors tried again and again to get an IV into her tiny newborn veins. Finally, success was achieved in a vein in her scalp. This time, the manuals would be useless. No books held the answers to a baby who couldn't suck, may not be able to hear, perhaps couldn't see, and didn't like to be held. If I thought I had a mission before, it was nothing compared to this one. The difference between traveling by car across the United States and by space shuttle to the furthest limits of the universe. There would be little to share and compare with the other moms who had become my comrades in child rearing thus far. Fortunately, we were given a diagnosis quite early. CHARGE syndrome. An explanation for the problems we were facing. A connection with other families worldwide facing the same mission. A connection to professionals studying the related issues. And an actual manual from the CHARGE Syndrome Foundation. A mom on a mission with two different children going different directions requiring different sets of manuals on two simultaneous missions: one across the country with a million other drivers and one to the outer limits with a few fellow travelers. Michele Westmaas is a mom, a wife, and an advocate for people with disabilities. Learn more about CHARGE syndrome at www.chargesyndrome.org. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Thanks, ! Michele _____ From: CHARGE [mailto:CHARGE ] On Behalf Of PATRICK HALLORAN Sent: Wednesday, January 10, 2007 5:23 PM To: CHARGE Subject: Re: My first column wow!! you have a way with words!! My first column Hi! Here is my first column - published in the Pike Press today, 1-10-07. Michele W Mom on a Mission " What to Expect When You're Expecting " . " What to Expect the First Year. " The necessary manuals for all moms on a mission. When my first son was born, I read each manual thoroughly comparing the progress of my pregnancy with the milestones in the book, delighting in the textbook perfection of it. The book said morning sickness would end after the first trimester. Sure enough, mine ended as I finished my 3rd month of pregnancy. Things continued perfectly forward to a perfect birth, and I was rewarded with a perfect son. Each month, I checked off the milestones he'd achieved at the start of each chapter noting how remarkably advanced he was. When we ran into obstacles, difficulty falling asleep, fevers, the terrible twos, the answers could be found in the manual. I was a mom on a mission; on a mission to do my very best at every step along the way for my son. The manuals were my guides to the perfect execution of my mission. Other moms were readily available to share and compare as we all traipsed along happily raising our children. Then came my second pregnancy. Another chance at perfection. But this time, things didn't go by the book. Various discomforts plagued me and things didn't feel quite right although my doctor couldn't identify anything unusual. This birth was difficult and complicated. From the moment she arrived, it was obvious that something was definitely not quite right with our daughter. I lay awake the first night of my baby girl's life, alone after the rest of the family had gone home for some much needed sleep. I couldn't sleep. Down the hall, my baby girl howled as doctors tried again and again to get an IV into her tiny newborn veins. Finally, success was achieved in a vein in her scalp. This time, the manuals would be useless. No books held the answers to a baby who couldn't suck, may not be able to hear, perhaps couldn't see, and didn't like to be held. If I thought I had a mission before, it was nothing compared to this one. The difference between traveling by car across the United States and by space shuttle to the furthest limits of the universe. There would be little to share and compare with the other moms who had become my comrades in child rearing thus far. Fortunately, we were given a diagnosis quite early. CHARGE syndrome. An explanation for the problems we were facing. A connection with other families worldwide facing the same mission. A connection to professionals studying the related issues. And an actual manual from the CHARGE Syndrome Foundation. A mom on a mission with two different children going different directions requiring different sets of manuals on two simultaneous missions: one across the country with a million other drivers and one to the outer limits with a few fellow travelers. Michele Westmaas is a mom, a wife, and an advocate for people with disabilities. Learn more about CHARGE syndrome at www.chargesyndrome.org. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 , Well done!! On a cleaning spree just yesterday I passed over my copy of " What to Expect the Toddler Years " which I have not opened since the day my daughter(now 6)aged out of the issue...As I looked at the cover of the book for a brief moment I considered tossing it into the garbage ...(if not for the dental chart in there somewhere regarding the time frame of teeth erupting it would now be in the the trash can.) I have never looked in that book for . I never wanted to compare the milestones missed due to his delays and hospitalizations. The book just does not apply. has achieved his milestones on " time " and the CHARGE manual,this group and the parents and CHARGERS on here have become our guides. Great job on your first column! Can't wait to read more! Is your column weekly, monthly or quarterly? (mom to 2.5 years, 6 years, wife to Pat) (mom to 2.5 years, > > > Hi! > Here is my first column - published in the Pike Press today, 1-10- 07. > > > > Michele W > > > > Mom on a Mission > > > > > > " What to Expect When You're Expecting " . " What to Expect the First Year. " > The necessary manuals for all moms on a mission. When my first son was > born, I read each manual thoroughly comparing the progress of my pregnancy > with the milestones in the book, delighting in the textbook perfection of > it. The book said morning sickness would end after the first trimester. > Sure enough, mine ended as I finished my 3rd month of pregnancy. Things > continued perfectly forward to a perfect birth, and I was rewarded with a > perfect son. > > Each month, I checked off the milestones he'd achieved at the start of each > chapter noting how remarkably advanced he was. When we ran into obstacles, > difficulty falling asleep, fevers, the terrible twos, the answers could be > found in the manual. > > I was a mom on a mission; on a mission to do my very best at every step > along the way for my son. The manuals were my guides to the perfect > execution of my mission. Other moms were readily available to share and > compare as we all traipsed along happily raising our children. > > Then came my second pregnancy. Another chance at perfection. But this > time, things didn't go by the book. Various discomforts plagued me and > things didn't feel quite right although my doctor couldn't identify anything > unusual. This birth was difficult and complicated. From the moment she > arrived, it was obvious that something was definitely not quite right with > our daughter. > > I lay awake the first night of my baby girl's life, alone after the rest of > the family had gone home for some much needed sleep. I couldn't sleep. > Down the hall, my baby girl howled as doctors tried again and again to get > an IV into her tiny newborn veins. Finally, success was achieved in a vein > in her scalp. > > This time, the manuals would be useless. No books held the answers to a > baby who couldn't suck, may not be able to hear, perhaps couldn't see, and > didn't like to be held. If I thought I had a mission before, it was nothing > compared to this one. The difference between traveling by car across the > United States and by space shuttle to the furthest limits of the universe. > There would be little to share and compare with the other moms who had > become my comrades in child rearing thus far. > > Fortunately, we were given a diagnosis quite early. CHARGE syndrome. An > explanation for the problems we were facing. A connection with other > families worldwide facing the same mission. A connection to professionals > studying the related issues. And an actual manual from the CHARGE Syndrome > Foundation. > > A mom on a mission with two different children going different directions > requiring different sets of manuals on two simultaneous missions: one > across the country with a million other drivers and one to the outer limits > with a few fellow travelers. > > > > > > > > Michele Westmaas is a mom, a wife, and an advocate for people with > disabilities. > > Learn more about CHARGE syndrome at www.chargesyndrome.org. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Wonderful. To the point and well-written. Bravo! > > > > Hi! > Here is my first column - published in the Pike Press today, 1-10-07. > > Michele W > > Mom on a Mission > > " What to Expect When You're Expecting " . " What to Expect the First Year. " > The necessary manuals for all moms on a mission. When my first son was > born, I read each manual thoroughly comparing the progress of my pregnancy > with the milestones in the book, delighting in the textbook perfection of > it. The book said morning sickness would end after the first trimester. > Sure enough, mine ended as I finished my 3rd month of pregnancy. Things > continued perfectly forward to a perfect birth, and I was rewarded with a > perfect son. > > Each month, I checked off the milestones he'd achieved at the start of > each > chapter noting how remarkably advanced he was. When we ran into obstacles, > difficulty falling asleep, fevers, the terrible twos, the answers could be > found in the manual. > > I was a mom on a mission; on a mission to do my very best at every step > along the way for my son. The manuals were my guides to the perfect > execution of my mission. Other moms were readily available to share and > compare as we all traipsed along happily raising our children. > > Then came my second pregnancy. Another chance at perfection. But this > time, things didn't go by the book. Various discomforts plagued me and > things didn't feel quite right although my doctor couldn't identify > anything > unusual. This birth was difficult and complicated. From the moment she > arrived, it was obvious that something was definitely not quite right with > our daughter. > > I lay awake the first night of my baby girl's life, alone after the rest > of > the family had gone home for some much needed sleep. I couldn't sleep. > Down the hall, my baby girl howled as doctors tried again and again to get > an IV into her tiny newborn veins. Finally, success was achieved in a vein > in her scalp. > > This time, the manuals would be useless. No books held the answers to a > baby who couldn't suck, may not be able to hear, perhaps couldn't see, and > didn't like to be held. If I thought I had a mission before, it was > nothing > compared to this one. The difference between traveling by car across the > United States and by space shuttle to the furthest limits of the universe. > There would be little to share and compare with the other moms who had > become my comrades in child rearing thus far. > > Fortunately, we were given a diagnosis quite early. CHARGE syndrome. An > explanation for the problems we were facing. A connection with other > families worldwide facing the same mission. A connection to professionals > studying the related issues. And an actual manual from the CHARGE Syndrome > Foundation. > > A mom on a mission with two different children going different directions > requiring different sets of manuals on two simultaneous missions: one > across the country with a million other drivers and one to the outer > limits > with a few fellow travelers. > > Michele Westmaas is a mom, a wife, and an advocate for people with > disabilities. > > Learn more about CHARGE syndrome at www.chargesyndrome.org. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Michele, How wonderful!!!! I love the tone of this and how very concise and clear--my guess is you will get lots of fan mail (outside of us!!).Good on you!! pam My first column Hi! Here is my first column - published in the Pike Press today, 1-10-07. Michele W Mom on a Mission " What to Expect When You're Expecting " . " What to Expect the First Year. " The necessary manuals for all moms on a mission. When my first son was born, I read each manual thoroughly comparing the progress of my pregnancy with the milestones in the book, delighting in the textbook perfection of it. The book said morning sickness would end after the first trimester. Sure enough, mine ended as I finished my 3rd month of pregnancy. Things continued perfectly forward to a perfect birth, and I was rewarded with a perfect son. Each month, I checked off the milestones he'd achieved at the start of each chapter noting how remarkably advanced he was. When we ran into obstacles, difficulty falling asleep, fevers, the terrible twos, the answers could be found in the manual. I was a mom on a mission; on a mission to do my very best at every step along the way for my son. The manuals were my guides to the perfect execution of my mission. Other moms were readily available to share and compare as we all traipsed along happily raising our children. Then came my second pregnancy. Another chance at perfection. But this time, things didn't go by the book. Various discomforts plagued me and things didn't feel quite right although my doctor couldn't identify anything unusual. This birth was difficult and complicated. From the moment she arrived, it was obvious that something was definitely not quite right with our daughter. I lay awake the first night of my baby girl's life, alone after the rest of the family had gone home for some much needed sleep. I couldn't sleep. Down the hall, my baby girl howled as doctors tried again and again to get an IV into her tiny newborn veins. Finally, success was achieved in a vein in her scalp. This time, the manuals would be useless. No books held the answers to a baby who couldn't suck, may not be able to hear, perhaps couldn't see, and didn't like to be held. If I thought I had a mission before, it was nothing compared to this one. The difference between traveling by car across the United States and by space shuttle to the furthest limits of the universe. There would be little to share and compare with the other moms who had become my comrades in child rearing thus far. Fortunately, we were given a diagnosis quite early. CHARGE syndrome. An explanation for the problems we were facing. A connection with other families worldwide facing the same mission. A connection to professionals studying the related issues. And an actual manual from the CHARGE Syndrome Foundation. A mom on a mission with two different children going different directions requiring different sets of manuals on two simultaneous missions: one across the country with a million other drivers and one to the outer limits with a few fellow travelers. Michele Westmaas is a mom, a wife, and an advocate for people with disabilities. Learn more about CHARGE syndrome at www.chargesyndrome.org. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Thank you, thank you, ! Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 - I think we've all had that experience of tossing the " what to expect " books - if we had them in the first place. If awfully disheartening to open up to even the generic issues like temper tantrums, potty training, teething and find that none of the advice fits. I expect to write monthly. Thanks for the words of support and encouragement. I'll post them to the list every month. You guys provide so much of the inspiration and insight! I'm sure some of my training has come from writing posts for all these years! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Michele, Great job as always!!! Crystal mom to (11), (3), and Eva (21 month old CHARGEr) wife to Dan in Illinois > > wow!! you have a way with words!! > > > My first column > > > > > Hi! > Here is my first column - published in the Pike Press today, 1- 10-07. > > Michele W > > Mom on a Mission > > " What to Expect When You're Expecting " . " What to Expect the First Year. " > The necessary manuals for all moms on a mission. When my first son was > born, I read each manual thoroughly comparing the progress of my pregnancy > with the milestones in the book, delighting in the textbook perfection of > it. The book said morning sickness would end after the first trimester. > Sure enough, mine ended as I finished my 3rd month of pregnancy. Things > continued perfectly forward to a perfect birth, and I was rewarded with a > perfect son. > > Each month, I checked off the milestones he'd achieved at the start of each > chapter noting how remarkably advanced he was. When we ran into obstacles, > difficulty falling asleep, fevers, the terrible twos, the answers could be > found in the manual. > > I was a mom on a mission; on a mission to do my very best at every step > along the way for my son. The manuals were my guides to the perfect > execution of my mission. Other moms were readily available to share and > compare as we all traipsed along happily raising our children. > > Then came my second pregnancy. Another chance at perfection. But this > time, things didn't go by the book. Various discomforts plagued me and > things didn't feel quite right although my doctor couldn't identify anything > unusual. This birth was difficult and complicated. From the moment she > arrived, it was obvious that something was definitely not quite right with > our daughter. > > I lay awake the first night of my baby girl's life, alone after the rest of > the family had gone home for some much needed sleep. I couldn't sleep. > Down the hall, my baby girl howled as doctors tried again and again to get > an IV into her tiny newborn veins. Finally, success was achieved in a vein > in her scalp. > > This time, the manuals would be useless. No books held the answers to a > baby who couldn't suck, may not be able to hear, perhaps couldn't see, and > didn't like to be held. If I thought I had a mission before, it was nothing > compared to this one. The difference between traveling by car across the > United States and by space shuttle to the furthest limits of the universe. > There would be little to share and compare with the other moms who had > become my comrades in child rearing thus far. > > Fortunately, we were given a diagnosis quite early. CHARGE syndrome. An > explanation for the problems we were facing. A connection with other > families worldwide facing the same mission. A connection to professionals > studying the related issues. And an actual manual from the CHARGE Syndrome > Foundation. > > A mom on a mission with two different children going different directions > requiring different sets of manuals on two simultaneous missions: one > across the country with a million other drivers and one to the outer limits > with a few fellow travelers. > > Michele Westmaas is a mom, a wife, and an advocate for people with > disabilities. > > Learn more about CHARGE syndrome at www.chargesyndrome.org. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Crystal- Thanks so much! Michele _____ From: CHARGE [mailto:CHARGE ] On Behalf Of supermama95 Sent: Wednesday, January 10, 2007 9:24 PM To: CHARGE Subject: Re: My first column Michele, Great job as always!!! Crystal mom to (11), (3), and Eva (21 month old CHARGEr) wife to Dan in Illinois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Pam- Thanks! It's a challenge to keep it short enough for the paper. I'm not really good at brevity :-) You can appreciate this - I did an honors research paper in college - sort of a mini-undergrad-thesis. That professor taught me so much about writing! Granted it was technical writing, but it was precise and concise and everything else. My current boss has done a good job of mentoring me in letting your voice through in your writing - as we write our newsletters. So I've had the pleasure and the honor of some very good instruction. Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of pamela.ryan@... Sent: Wednesday, January 10, 2007 9:01 PM To: CHARGE Subject: RE: My first column Michele, How wonderful!!!! I love the tone of this and how very concise and clear--my guess is you will get lots of fan mail (outside of us!!).Good on you!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 ooh wow GO MICHELE!!!! Belinda My first column Hi! Here is my first column - published in the Pike Press today, 1-10-07. Michele W Mom on a Mission " What to Expect When You're Expecting " . " What to Expect the First Year. " The necessary manuals for all moms on a mission. When my first son was born, I read each manual thoroughly comparing the progress of my pregnancy with the milestones in the book, delighting in the textbook perfection of it. The book said morning sickness would end after the first trimester. Sure enough, mine ended as I finished my 3rd month of pregnancy. Things continued perfectly forward to a perfect birth, and I was rewarded with a perfect son. Each month, I checked off the milestones he'd achieved at the start of each chapter noting how remarkably advanced he was. When we ran into obstacles, difficulty falling asleep, fevers, the terrible twos, the answers could be found in the manual. I was a mom on a mission; on a mission to do my very best at every step along the way for my son. The manuals were my guides to the perfect execution of my mission. Other moms were readily available to share and compare as we all traipsed along happily raising our children. Then came my second pregnancy. Another chance at perfection. But this time, things didn't go by the book. Various discomforts plagued me and things didn't feel quite right although my doctor couldn't identify anything unusual. This birth was difficult and complicated. From the moment she arrived, it was obvious that something was definitely not quite right with our daughter. I lay awake the first night of my baby girl's life, alone after the rest of the family had gone home for some much needed sleep. I couldn't sleep. Down the hall, my baby girl howled as doctors tried again and again to get an IV into her tiny newborn veins. Finally, success was achieved in a vein in her scalp. This time, the manuals would be useless. No books held the answers to a baby who couldn't suck, may not be able to hear, perhaps couldn't see, and didn't like to be held. If I thought I had a mission before, it was nothing compared to this one. The difference between traveling by car across the United States and by space shuttle to the furthest limits of the universe. There would be little to share and compare with the other moms who had become my comrades in child rearing thus far. Fortunately, we were given a diagnosis quite early. CHARGE syndrome. An explanation for the problems we were facing. A connection with other families worldwide facing the same mission. A connection to professionals studying the related issues. And an actual manual from the CHARGE Syndrome Foundation. A mom on a mission with two different children going different directions requiring different sets of manuals on two simultaneous missions: one across the country with a million other drivers and one to the outer limits with a few fellow travelers. Michele Westmaas is a mom, a wife, and an advocate for people with disabilities. Learn more about CHARGE syndrome at www.chargesyndrome.org. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 k mind if i try c if it can b published here LOL im sure i could mannage it just give u the site of soem aussie papers and send them in as u write > > ooh wow GO MICHELE!!!! > > > Belinda > My first column > > Hi! > Here is my first column - published in the Pike Press today, 1-10-07. > > Michele W > > Mom on a Mission > > " What to Expect When You're Expecting " . " What to Expect the First Year. " > The necessary manuals for all moms on a mission. When my first son was > born, I read each manual thoroughly comparing the progress of my pregnancy > with the milestones in the book, delighting in the textbook perfection of > it. The book said morning sickness would end after the first trimester. > Sure enough, mine ended as I finished my 3rd month of pregnancy. Things > continued perfectly forward to a perfect birth, and I was rewarded with a > perfect son. > > Each month, I checked off the milestones he'd achieved at the start of > each > chapter noting how remarkably advanced he was. When we ran into obstacles, > difficulty falling asleep, fevers, the terrible twos, the answers could be > found in the manual. > > I was a mom on a mission; on a mission to do my very best at every step > along the way for my son. The manuals were my guides to the perfect > execution of my mission. Other moms were readily available to share and > compare as we all traipsed along happily raising our children. > > Then came my second pregnancy. Another chance at perfection. But this > time, things didn't go by the book. Various discomforts plagued me and > things didn't feel quite right although my doctor couldn't identify > anything > unusual. This birth was difficult and complicated. From the moment she > arrived, it was obvious that something was definitely not quite right with > our daughter. > > I lay awake the first night of my baby girl's life, alone after the rest > of > the family had gone home for some much needed sleep. I couldn't sleep. > Down the hall, my baby girl howled as doctors tried again and again to get > an IV into her tiny newborn veins. Finally, success was achieved in a vein > in her scalp. > > This time, the manuals would be useless. No books held the answers to a > baby who couldn't suck, may not be able to hear, perhaps couldn't see, and > didn't like to be held. If I thought I had a mission before, it was > nothing > compared to this one. The difference between traveling by car across the > United States and by space shuttle to the furthest limits of the universe. > There would be little to share and compare with the other moms who had > become my comrades in child rearing thus far. > > Fortunately, we were given a diagnosis quite early. CHARGE syndrome. An > explanation for the problems we were facing. A connection with other > families worldwide facing the same mission. A connection to professionals > studying the related issues. And an actual manual from the CHARGE Syndrome > Foundation. > > A mom on a mission with two different children going different directions > requiring different sets of manuals on two simultaneous missions: one > across the country with a million other drivers and one to the outer > limits > with a few fellow travelers. > > Michele Westmaas is a mom, a wife, and an advocate for people with > disabilities. > > Learn more about CHARGE syndrome at www.chargesyndrome.org. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Michele, Wonderful article - our second child is the one with CHARGE so, like you I thought I knew all about having a baby. It was quite a shock to my maternal system to not come home with more than my baby. Thanks for sharing this. Mom to Cameron, 4 1/2 (CHARGE) and , 6 1/2 http://cameronwoweeandrew.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Michele, Your first column was great! I had all those " manuals " too--and quickly put them in a yard sale after was born. She writes her own manual! :-) , mom to (4) http://kauffmanlak.blogspot.com/ --------------------------------- Want to start your own business? Learn how on Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Michele- Thank you so much for sharing your column. What a gift and blessing to others you make this experience. I had a parallel but different experience with my " What to Expect the First Year " book. is our first, so I would studiously look at the book and find ways to create those events happening - maybe the sequence with delay, maybe the germ of an emergent skill. Heck, with all that therapy and intervention, we all become such experts on how skills are acquired, emerge, integrate or become splintered and the whole gamut of things. Then when our second was born, it was like the V-* hit in the head. " Oh! So THAT is what it looks like! " ) so much love to you- yuka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Your good instruction plus your own intelligence is a nice match, obviously!! xo > > . > > -- Pamela J. , M.A., CAGS Licensed Educational Psychologist Deafblind Program Perkins School for the Blind 175 N. Beacon St. Watertown, MA 02472 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Belinda- I picture you in a cheerleader outfit shaking your pom poms as you wrote that :-) Thanks, Michele _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Belinda Sent: Thursday, January 11, 2007 2:40 AM To: CHARGE Subject: Re: My first column ooh wow GO MICHELE!!!! Belinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Well, sure. Who wouldn't want their writing published overseas!??? Why don't you give me the info on your local paper? Michele _____ From: CHARGE [mailto:CHARGE ] On Behalf Of ellen howe Sent: Thursday, January 11, 2007 3:37 AM To: CHARGE Subject: Re: My first column k mind if i try c if it can b published here LOL im sure i could mannage it just give u the site of soem aussie papers and send them in as u write Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 - I'm glad to know that you could relate. Isn't it wonderful to know that we are all connected by such deep emotions? Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Sent: Thursday, January 11, 2007 11:18 AM To: CHARGE Subject: Re: My first column Michele, Wonderful article - our second child is the one with CHARGE so, like you I thought I knew all about having a baby. It was quite a shock to my maternal system to not come home with more than my baby. Thanks for sharing this. Mom to Cameron, 4 1/2 (CHARGE) and , 6 1/2 http://cameronwowee <http://cameronwoweeandrew.blogspot.com/> andrew.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 - We all need to write an " Support Warehouse Order " form to add to our manuals! In fact, wouldn't it be a good addition to the Foundation website to have a compilation of profiles of our kids - their dx's as well as the needed supports that go with that?? I know I'd find it helpful to know what other kids like Aubrie are getting (or needing and not getting). Michele W Aubrie's mom _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Kauffman Sent: Thursday, January 11, 2007 12:48 PM To: CHARGE Subject: Re: My first column Michele, Your first column was great! I had all those " manuals " too--and quickly put them in a yard sale after was born. She writes her own manual! :-) , mom to (4) http://kauffmanlak. <http://kauffmanlak.blogspot.com/> blogspot.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Yuka- How lovely to hear your twist on that experience!! Thanks :-) Michele _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Yuka Persico Sent: Thursday, January 11, 2007 12:53 PM To: CHARGE Subject: Re: Re: My first column Michele- Thank you so much for sharing your column. What a gift and blessing to others you make this experience. I had a parallel but different experience with my " What to Expect the First Year " book. is our first, so I would studiously look at the book and find ways to create those events happening - maybe the sequence with delay, maybe the germ of an emergent skill. Heck, with all that therapy and intervention, we all become such experts on how skills are acquired, emerge, integrate or become splintered and the whole gamut of things. Then when our second was born, it was like the V-* hit in the head. " Oh! So THAT is what it looks like! " ) so much love to you- yuka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 michelle email me ur new email and ill send u soem stuff i had ur addres sbut think its ur old one not this one in my gmail address book > > Yuka- > > How lovely to hear your twist on that experience!! Thanks :-) > > Michele > > _____ > > From: CHARGE <CHARGE%40yahoogroups.com> [mailto: > CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of > Yuka Persico > Sent: Thursday, January 11, 2007 12:53 PM > To: CHARGE <CHARGE%40yahoogroups.com> > Subject: Re: Re: My first column > > Michele- > > Thank you so much for sharing your column. What a gift and blessing to > others you make this experience. > > I had a parallel but different experience with my " What to Expect the > First > Year " book. is our first, so I would studiously look at the book and > find ways to create those events happening - maybe the sequence with > delay, > maybe the germ of an emergent skill. Heck, with all that therapy and > intervention, we all become such experts on how skills are acquired, > emerge, > integrate or become splintered and the whole gamut of things. Then when > our > second was born, it was like the V-* hit in the head. " Oh! So THAT is what > it looks like! " > > ) > > so much love to you- > > yuka > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Michele, Great article! I agree with what you said about our thoughts and beliefs evolving. That's true of everyone. But you hit it dead-on for parents of children with special needs. Your article reminded me a bit of the " Welcome to Holland " essay. When I first read that, I thought this is so wonderful and true. Then, a few years later when I was teaching a families course at the university, I ran across the rebuttal essay, " Welcome to Beirut " and that one rang much truer. Now, I distribute both of those to my students so they understand that families sometimes have different approaches/perceptions, or that their perceptions definitely can change over time. Rosie (Neal, 11, CHARGE; -marie, 6) Quote Link to comment Share on other sites More sharing options...
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