Medically Fragile Children:
Practical Parenting Help View the article online
October 10, 2012
Medically fragile children need parents with a unique set of skills. Because these skills aren’t taught in parenting classes or addressed in parenting books, dads and moms with children who have critical medical needs are forced to scramble to find resources while they’re still coming to terms with an unexpected diagnosis. My book, Different Dream Parenting, has several chapters about parenting kids with medical special needs, but a new book by Margaret Meder deals exclusively with this subset of medically fragile special needs children.
Meet Margaret Meder
Meet Margaret Meder
Margaret Meder and her husband Randy are parents to Jonathan and Evan. Evan, their second child, was diagnosed with Apert syndrome shortly after his birth in June of 2004. Their newborn spent 4 weeks in NICU and was hospitalized numerous other times because of respiratory issues and corrective surgeries. Margaret looked for books to help her family on their parenting journey, but found none. Once her son’s health stabilized several years later, she wrote a book to share what she learned with other families in similar situations.
Check Out Margaret’s Book
Margaret’s book about parenting kids who are medically fragile is called Uncommon Beauty: Crisis Parenting from Day One. It contains over 100 tips covering diverse topics such as dealing with insurance companies, setting up a schedule, advocating for your child, and staying positive. Each tip includes current information and an excerpt from Meder’s journal when Evan was very young. The juxtaposition of past and present shows Margaret’s initial identification of new problems and how she found solutions.
Her advice provides practical examples, as one about how to prepare for the arrival of paramedics and an ambulance shows. Meder suggests creating a vital information sheet – long before a crisis, of course. A five bullet point list outlines what the sheet should contain. On the same page, Meder explains what to pack in an emergency visit backpack and how to tailor the contents to your child’s specific medical condition.
Advice About Medically Fragile Children
Meder’s book is a valuable resource to parents of kids who are medically fragile, and I recommend it. You might also like to visit her website, www.uncommonbeautycrisisparenting.com. But before you go visit Margaret’s site, perhaps you would like to share a tip or two you’ve discovered as the parent of a child who is medically fragile. If so, leave a comment below.
Special Needs Book Review
Visit the review online
September 11, 2012
UNCOMMON beauty – Crisis Parenting From Day One by Margaret Meder
The moment you become a parent, life as
you know it will never be the same. When you learn you have become the parent
of a medically fragile child it must be a jarring, surreal, numbing time.
Parenting a child with special needs is a challenge and cannot be done alone.
Support can come from professionals, family members, friends, online, and
through parenting books. Margaret Meder‘s guide book, Uncommon Beauty – Crisis Parenting From Day One, is
the book all parents of children with special healthcare needs must get their
hands on.
This mom-author wins your admiration
and your trust in the first few pages. You know she has been there when she
writes in the first chapter that when they laid eyes on their second born
for the first time, “We weren’t prepared
to comfort our distressed baby as our own tears fell. We tried to cradle him,
trying to feel joy instead of the heaviness that was pressing down on us…We
listened to him whimper; desperately wishing we could make everything right.” Margaret
and her husband were now the parents of a child with a rare craniofacial
condition called Apert syndrome.
And so their torturous, parenting
journey begins. They have the sole responsibility of a child, Evan, with a rare
genetic syndrome causing complicated heath conditions: skeletal abnormalities,
including premature fusing of sutures in the skull, wide-set and protruding
eyes, sunken mid-face, and fused fingers and toes. Also many with Apert
syndrome have other conditions and Evan battled with a curved spine, fusion of
neck vertebrae, abnormal shoulder bones, respiratory issues, digestive issues,
moderate hearing loss, and impaired vision.
Where to turn for help and information?
Was there a special need parenting guide book for children like Evan?
Finding none, they learned through experience and research. Evan is now 7 years
old and Margaret Meder has written the book she longed for. Margaret Meder
successfully accomplished what she set out to do: write a book to make
someone else’s life easier. She expertly wove their first seven years of
parenting a child with special needs with advice, information, resource links,
validation, ideas, and hope for parents who are starting their difficult years
of parenting a child with complicated health conditions.
UNCOMMON beauty – A Must for Parenting a Child with Special Needs
What I appreciated about her book is
that Margaret Meder comes out as a regular mom who is living through an
extremely difficult experience and not a stoic hero no one can emulate. She
grieved and cried and tells you it is OK to feel this way. She discusses
antidepressants and sedatives and makes you realize parents must take care of
themselves to not fall into pieces. She really believes in the saying, “Care for yourself first so you can be
of help to those who rely on you.” She points out and often has the links
to many agencies and professionals that can help families including social
workers, spiritual services, early intervention services, respite services, etc.
Meder will help you plan strategies
that will carry you through this new, unexpected life. She gives you
encouragement to do things differently because it is what is required now. If
one thing doesn’t work out try something else. She comforts you with this
simple thought that you have a lot to gain, with very little to lose. Her sage
advice on surviving is not about doing expensive things but important
activities for the heart and soul like taking time to meditate, to pace
yourself, to pray, to take a daily walk, and even to let yourself laugh.
She never belittles your feelings of
despair because you can read, sometimes to get by, she too had to live minute
by minute. She writes when Evan was one year old, “The never-ending pressure, sleepless nights, worry, grief, and
self-doubt are the biggest players—all working together to bring us down.”
At the end she tells readers that the moment they became parents of a
medically fragile child they entered into a family crisis. Their lives were in
a complete upheaval. You will feel confident that to seek therapy for the
parents and the siblings is not being weak but wise. Counseling, the author
tells us, should be considered in the beginning of the crisis…to learn the life
skills necessary to survive all the trials ahead of you.
Margaret has hundreds of beautiful
sentences expressing her love and dedication for her family. She makes you see
how important your role as an informed and organized parent is to the wellbeing
and survival of your child and your family. She sneaks in advice on how
to appreciate the simple things in live. Here are some of my favorites:
- You are the constant factor in
your child’s care. You know what is normal, and what is not normal…A piece
of information that you share might be the missing link to a complex
problem.
- Forewarned is forearmed: you
are about to face mountains of paperwork…Expect it, prepare for it,
organize it, and deal with it.
- Your child needs you—a steady,
calm, guiding presence for a long time to come…to keep going for the long
haul pace yourself.
- When doubts threaten to erode
your resolve, know that there is tremendous power in positive
thinking…think of what you have instead of what you don’t have. At the end
of the day find three positive things to say—even though it can be tough
to be thankful in the middle of a crisis.
- Your child can’t speak for
himself—it is your job to be your child’s voice.
- No matter what each day holds,
always have a hug, a kiss, and an “I love you” for your children. Love is
the magic ingredient that holds a family together through pain and
turmoil.
- Embrace a new life perspective…We are learning how to cherish the present moment, and let go of excessive planning for tomorrow or the worry about yesterday.
Features
of the Book
UNCOMMON
beauty – Crisis Parenting From Day One should be in the
hands of all parents with a special needs child from the day of his birth. Her
chapter, Surviving the First Days, starts
in the delivery room. Margaret Meder’s words will help you through your grief
and her advice will make your life parenting a child with special needs doable
and help you function to do what needs to be done.
She writes as if she were a friend
speaking to you. The whole book follows an easy to read format for tired,
distraught parents. In a few paragraphs she explains the topic at hand and then
she shares how this particular event was for them. Their story is always told
in a few paragraphs written in the first person. Then she recaps in a few
paragraphs giving more information or tips. If you only have a few minutes to
read, a few pages has a beginning and an end and you will always find
encouragement, hope, and knowhow to get you through another day or get you to
sleep for much needed rest. Her suggestions are practical and immediately
doable.
The book does not have an index but
readers can easily find what they are looking for on the Contents page. Once you have read the book, you will want to refer
to it often to look up advice as you need it. The topics Ms. Meder covers are
in ten chapters but each chapter has ten to fourteen subheadings. Some of the
chapter titles with a few of their subheadings are:
Surviving
the First Days
- Hospitals and Doctors
- How Friends and Family
Can Help
- Start a Notebook
Understanding
Insurance
- Assistance Programs
- Insurance Terms Glossary
- Talking to Your Insurance
Company
Caring
for Yourself
- Create a Routine
- Have a Thankful Attitude
Caring
for Siblings
- You Are Special Too
- You Are Important
Caring
for Your Marriage
- Therapy Time Together
- Time Spent Separately
When you think the world is beating you
up, I highly recommend you pick up UNCOMMON beauty – Crisis Parenting From Day
One and find inspiration and guidance from Margaret Meder’s wise advice and
beautifully written story.
Sept. 23, 2012
Latest ‘Books to Bookmark’ List of 13 Interesting New Book Titles from 2012 compiled by Publishers Newswire
View the article online
Sept. 23, 2012
LOS ANGELES, Calif. /California Newswire/ — For the first half of
2012, Publishers Newswire (PNW), an online resource established in 2004
for small publishers, as well as lesser known and first-time book
authors, has today announced its latest semi-annual "Books to Bookmark"
list. This is a round-up of 13 new and recent books which may have been
missed due to not originating from major New York book publishing
houses, or "big name" authors.
"Although some predicted reading books would take a fast decline due to social media and Internet overload, the opposite has actually taken place thanks to mobile devices like the Apple iPad, iPhone, the growth of Android and Amazon's Kindle, among others," said PNW editor Christopher Simmons. "Strong sales of mobile devices – not just e-book readers – have proven to be the blessing for the beginning of a new explosion in e-publishing. And this has also helped traditional printed books, even though there are fewer places to buy books in person than a decade ago." Simmons has been a working journalist for over 25 years, and has written widely on the topic of publishing, marketing, and e-books.
The following list of 13 books (in alphabetical order) are provided as "worth a look" for media and booksellers, as well as avid readers of new and unique literary content. To learn more about these and other books (and e-books) in detail, visit: www.publishersnewswire.com.
UNCOMMON BEAUTY.
"Uncommon Beauty: Crisis Parenting from Day One" (ISBN: 978-1592984879; paperback, 190 pages; Beaver's Pond Press), by Margaret Meder, was inspired by her real-life family story: In the summer of 2004 Margaret Meder and her family headed to the hospital excited for the cesarean birth of her second child. They, and their medical team, were shocked when Evan arrived with severe deformities that were later diagnosed as Apert Syndrome, a rare genetic disorder. Despite her grief and pain, Margaret began keeping notebooks about Evan's life and medical care on the day he was born. That wealth of recorded information not only gave her the tools she needed to change her son's life, but now enables her to share that knowledge with others who are in crisis in her book.
Although Margaret's family story is about a child with Apert Syndrome, and every medically fragile child's condition is unique, the guidance and tools she offers in this book can be applied to many diagnoses and crises. She knows first-hand the self-doubt families feel when they are faced with the sole responsibility of caring for someone with complicated health conditions, making life-and-death decisions for a condition they know nothing about, and working with doctors who may have never treated their child's rare disorder.
"Uncommon Beauty" is easy to read, with information that can be taken in quickly during a busy day. Each chapter addresses specific topics such as "Surviving the First Days," "Understanding Insurance" and "Caring for Siblings." These chapters include not only Margaret's story taken directly from her notebooks, but also tips, suggestions and tools for dealing with each of these important issues. Readers will also find hope and joy within these pages as this family rallies and moves from the pain of Evan's initial diagnosis, to celebrating the love and happiness he brings to all of their lives every day.
"Although some predicted reading books would take a fast decline due to social media and Internet overload, the opposite has actually taken place thanks to mobile devices like the Apple iPad, iPhone, the growth of Android and Amazon's Kindle, among others," said PNW editor Christopher Simmons. "Strong sales of mobile devices – not just e-book readers – have proven to be the blessing for the beginning of a new explosion in e-publishing. And this has also helped traditional printed books, even though there are fewer places to buy books in person than a decade ago." Simmons has been a working journalist for over 25 years, and has written widely on the topic of publishing, marketing, and e-books.
The following list of 13 books (in alphabetical order) are provided as "worth a look" for media and booksellers, as well as avid readers of new and unique literary content. To learn more about these and other books (and e-books) in detail, visit: www.publishersnewswire.com.
UNCOMMON BEAUTY.
"Uncommon Beauty: Crisis Parenting from Day One" (ISBN: 978-1592984879; paperback, 190 pages; Beaver's Pond Press), by Margaret Meder, was inspired by her real-life family story: In the summer of 2004 Margaret Meder and her family headed to the hospital excited for the cesarean birth of her second child. They, and their medical team, were shocked when Evan arrived with severe deformities that were later diagnosed as Apert Syndrome, a rare genetic disorder. Despite her grief and pain, Margaret began keeping notebooks about Evan's life and medical care on the day he was born. That wealth of recorded information not only gave her the tools she needed to change her son's life, but now enables her to share that knowledge with others who are in crisis in her book.
Although Margaret's family story is about a child with Apert Syndrome, and every medically fragile child's condition is unique, the guidance and tools she offers in this book can be applied to many diagnoses and crises. She knows first-hand the self-doubt families feel when they are faced with the sole responsibility of caring for someone with complicated health conditions, making life-and-death decisions for a condition they know nothing about, and working with doctors who may have never treated their child's rare disorder.
"Uncommon Beauty" is easy to read, with information that can be taken in quickly during a busy day. Each chapter addresses specific topics such as "Surviving the First Days," "Understanding Insurance" and "Caring for Siblings." These chapters include not only Margaret's story taken directly from her notebooks, but also tips, suggestions and tools for dealing with each of these important issues. Readers will also find hope and joy within these pages as this family rallies and moves from the pain of Evan's initial diagnosis, to celebrating the love and happiness he brings to all of their lives every day.
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