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.
Congratulations to Margaret Meder! Uncommon Beauty is the winner of the 2013 Readers’ Choice Awards on About.com Parenting Special Needs
UNCOMMON beauty – Crisis Parenting From Day One
by Margaret Meder
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 favorite excerpts from Uncommon Beauty – Crisis Parenting From Day One:
- 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
- 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.
Margaret Meder grew up in Madison, Wisconsin. She attended the University of Wisconsin-Madison, earning a bachelor of music degree in 1990. She spent the next sixteen years teaching general and vocal music in the public schools and private lessons. During this time she worked with young children, teenagers, and individuals with special needs. Expanding on these experiences as an educator and musician, Margaret served three years as development director for a nonprofit fine arts organization.
Discovering a void in practical resources on how to survive as a parent of a medically fragile child, Margaret combined her education skills, her love of writing, and her own experiences to create her book, Uncommon Beauty – Crisis Parenting From Day One. Her mission is to create accessible resources that provide information, understanding, and inspiration for all parents who find themselves in similar situations. While raising her two children, Margaret pursues the joy in her life: writing, gardening, singing, playing the piano, and—most of all—spending time with her family and friends.
Follow Margaret Meder on her blog: UncommnonBeautyCrisisParenting.com