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Finding Hope in the Unpredictable

By Emily Ann Hupe

Karen Fiera (with PICC line)

I would like to introduce you to my friend and fellow mobileWOMAN, Karen Fiera. Karen and I live in the same town and for a time, attended the same church, however, we met online in 2011. not in person. We instantly bonded over the shared journey of living and parenting, through a chronic illness and disability. We have shared the ups and downs of a journey that we never expected to take. We pray for one another when one of us is in the hospital or having a setback, and we praise together when we experience the rare, precious moments of "normal". When those Facebook memory posts appear, clearly showing the "before", we cry together at everything we have lost. We "get" each other, we have given up so many of the same things and we lessen the hurt they cause through our prayers and friendship. Karen has graciously allowed me to share her story here.

Karen and her husband Anthony, were living a quiet life raising their 2 children and enjoying an active Southern California lifestyle. Life as Karen knew it, changed in 2009. The plans and dreams that she thought she could count on, were much different than the life she felt God had planned for her. After successfully completing the breast cancer 3 Day Walk in San Diego, in 2008, Karen was eager to participate again in 2009! The first day of the walk, she sustained injuries to her hip, knee and shins. As the walk went on, Karen began experiencing extreme pain. She continued the walk, willing her body to push past the pain. Karen remarked to her husband that she was just injured a little and it wouldn’t kill her. They kept walking, hand in hand for 60 miles, Karen completed the walk.

Following the walk, Karen's injuries did not improve and she began seeing doctors and seeking answers. It would take months to find them. Even when the doctors had an answer, it only seemed to lead to more questions. Karen finally had a muscle biopsy done in August of 2010, the results would change her life forever.

Finding Home

By Emily Ann Hupe

One of the first things that I remember about our old house and property, was the smell. As we got out of the car, the first day we looked at the property, I inhaled deeply, the smell of the pine trees. I closed my eyes and let that smell envelop me and it created such a peace. I have so many memories of camping and canoeing associated with that smell. These were times during my childhood that I was truly happy.

The view from the kitchen window was not the best in the house, but it was the window I looked out of the most. I could look into the front yard and see the children play. Whether I was cooking, talking on the phone or getting a drink in the middle of the night, I looked out that window.

I always left that kitchen window open during summer evenings. In the middle of the night, I would get a drink and pause a moment just to listen. The crickets always arrived around late June. As the sunset after a hot day and the cool winds would blow, t he crickets would begin their song. I hear it now and it takes me back to my kitchen, my window, my home.

It was at that window in October of 2003 that I heard the words, She is gone, I am sorry.” It was in the pre-dawn hours of a Friday morning that I learned my mother had died. I would never again be able to stare out that window again without thinking of my mother.

I stood at that window breathing through the pre-labor pains that would bring my sweet, precious Wyatt into this world. As I watched the sunrise that September morning in 2002, I had no idea how this child inside of me would change our lives. There were moments that he would drive us to our knees in frustration and sadness. Then, just as quickly he would melt our hearts and amaze us with his deep thought and intensity.

Crazy to Most, Normal to Us

By Emily Ann Hupe

When I walked into the hospital for my scheduled c-section on November 17, 2004, I had no idea that those would be the last steps that I would ever take, as an able bodied mom. A rare complication during my procedure, caused a bruise on my spinal cord at T 11-12. I had no feeling from the hips down on my right side, some feeling on the left and no bowel or bladder control. I was now a full-time wheelchair user. Waiting at home for me, were my 6 other children ages: 11, 9, 7, 5, 4 and 2. I had no idea that cold November morning, as I stared down at the perfect face of my youngest child that the next 12 years would nearly destroy our beautiful little family.

I would have over 10 surgeries numerous complications and procedures over the next 12 years. The first 2 years, I lived in constant and excruciating pain. There were countless doctor appointments and procedures. I was in a constant state of "preparing for" or "healing from" something. During this time, I was desperately trying to "mom" from what I came to refer to as "the worst seat in the house". Life for me was measured in hours between pain medication and how many good days that I had in between surgeries or complications. We have home schooled all of our children, so that further complicated my situation. We spent most days in my room and bed, during those first 2 years.

Dinner time!

Slowly we settled into a new normal. My husband is self employed so he was home most days. He would get up at 4:00 AM, work until 8:00 AM in his office and then help get the kids and me up for the day. He would then be Mr. Mom for the day and return to his office after dinner until the bedtime routines began. Often times, he would work late into the night as well. We did not have family close by and we lived 45 minutes from most of our friends in town. People pitched in, at times, and were amazing. However, the reality was that everyone was busy with their own lives and we were on our own most of the time.

A day in October of 2006, I was at home doing laundry. On this day, I knew something was different about me that just didn’t feel right. I was feeling weak and sick, but ignored it and took a walk across the street, to go to a store to get exact change for the laundry machine. I’ll never forget that walk across the street, because little did I know, it would be my last walk outside. Shortly after, I started to lose sensation in my legs and was rushed to the hospital. I was diagnosed with Transverse Myelitis, an inflammation of the spinal cord that causes paralysis.I was kept in the hospital for 2 months for tests/recovery and spent my 30th birthday there.

When I was first told that I may never walk again, I didn't want to accept it. I felt scared and angry at the world. I refused to "learn" how to function in a wheelchair because that would mean I had to accept this kind of life. This is not how I envisioned myself nor how I imagined that my life would turn out. I didn't want anyone to feel sorry for me.

Everything in our lives was going so well when my sudden onset of paralysis, hit us like a ton of bricks. After all, my husband (of seven years at that time) and I, were living the high life in the big city. We would meet friends every weekend, and were always at the best places "to be and be seen" of New York City. We had one those love stories you read in storybooks. We met, fell for each other instantly and flew back and forth to see each other for a few months. We had a whirlwind romance and were married within 6 months.

"Where Fairy Tales Go" - An Excerpt

By Annette Ross

“A playbook for all of us about the power of love...”

Lee Woodruff, New York Times #1 bestselling author, In an Instant

Annette Ross’ inspirational memoir details her personal challenges, financial struggles, and the life-altering medical error that left her unable to walk. Join Annette and her family on this journey to reclaim a lost fairy tale.

EXCERPT Where Fairy Tales Go

The Delivery Room, January 2000

The anesthesiologist arrived in a lousy mood.

It was after midnight. She looked disheveled and distracted. Her dirty-blond hair fell over her eyes. To diffuse the obvious tension, I begin an anxious litany of questions to try and build rapport. I also needed to bolster my own courage. I asked how she was feeling. “Exhausted,” she said, and mumbled something about having gone out with her new fiancé. The tone in her voice was unsettling. And she made it clear that she was not there for conversation. I knew it was important to let her do her job, so I tried to talk myself down by nervously chatting with Bill. We were, after all, excitedly anticipating the birth of our second child. The anesthesiologist brought in a metal cart, instructed me to move to the end of the bed, and told me to “lean over the table.” As she injected a needle into my lower back, my body jolted violently.

Recap of The White House Forum on the Civil Rights of Parents with Disabilities

By Dr. Kara Ayers, Associate Director of the University Center for Excellence in Developmental Disabilities

On May 5, 2016, the White House held a Forum on the Civil Rights of Parents with Disabilities. The event commemorated the release of a new toolkit from the Christopher and Dana Reeve Foundation as well as a re-release of the landmark Rocking the Cradle report from the National Council on Disability. The re-release includes updated photos, infographics, and a few additional examples of recent case outcomes.

The Forum's panel:
Dr. Kara Ayers, Associate Director of
the University Center for Excellence in Developmental Disabilities;
Director of the National Centers for
Independent Living (NCIL) Kelly Buckland;
and Assistant Attorney General for the Civil Rights Division Eve Hill

The morning session of the forum included panelists representing a wide range of perspectives related to parenting with a disability. The panels discussed what social, programmatic, and policy changes are needed to better support the right to parent. The forum was followed by an afternoon strategy session for leaders from around the country to discuss next steps to build on the momentum around this important topic. In the evening, policy-makers, advocates, parents with disabilities, and their allies joined to celebrate the work around parenting with a reception hosted by the Reeve Foundation.

Co-founders of the Disabled Parenting Project:Robyn Powell, Kara Ayers and Erin Andrews

Why Self Esteem is the First Ingredient to a Positive Relationship

By Christinne Rudd

Relationships and intimacy require a level of risk to be taken by both parties. The risk that you're taking is to expose your feelings and other personal things about yourself to someone else. In order to do that and fully enjoy the result of a successful relationship, you have to know your self-worth and posses positive self esteem. For someone with a disability, this may be difficult for a myriad of reasons, depending on their personal circumstances but this really doesn't have to be the case at all. When our children are young, one of the first indicators of their growth and development is how they interact with others. It also seems to be a gauge to our success as parents. As I've read in many articles on parenting, the first place our kids learn acceptable behaviors and other levels of interaction is at home.


Christinne Rudd & her son

This is also true of their self-esteem and how they view others. If parents aren't confident in their roles, and more importantly in themselves, our kids are the first to know it. Along the same lines, the feedback they receive from their parents on self-image and acceptable behaviors comes from us, their first, and in my opinion, most important teachers. When raising kids with disabilities, the territory may seem new to you , even if you have other children. Kids with disabilities need the same positive role models and influences as children with out disabilities. Just because someone has a disability doesn't mean they can't or don't understand what they're being taught or what they see being modeled by their parents. Even if your children have some sort of intellectual disability, plenty of material exists and professionals are available to help along the way. We're no longer in archaic times where we might need to invent the wheel on different aspects of getting a message to a child.

by Christinne Rudd

Being a mom is a challenging role for anyone. Add having a disability to the mix and the adventure has just begun. Getting to know how your limitations are going to affect your ability to parent and finding out what's available to help you get the job done combined are like solving a puzzle. Then once the baby arrives, you have to get adjusted to him or her at each stage of life, all the while finding ways to meet the everyday challenges of parenting.

Even though these aspects of parenting may sound overwhelming, the role of parent can be lots of fun because it allows you the opportunity to have a hand in our society's future viewpoints. When it comes to the topic of our society's viewpoint in today's world, in my experience, people seem to automatically discount your ability as a parent just because of the physical limitations you exhibit to the rest of the world.

Life Lessons My Kids Are Learing From Having a Disabled Mom: People Can Be Ignorant

By Annae Jones
Reprinted with permission from The Mobility Resource

Most of us have had an unkind word thrown at us or have been the recipient of an ignorant comment. I have had people tell me how disgusting it was when I picked something up with my foot at the grocery store and once, a man insist my mother had taken drugs while she was pregnant with me – a far cry from the truth.

Then while being denied special needs transportation for our daughter, a kindergartener, when my son was only two and it was difficult for me to get him in a car seat; my husband and I had a public service worker tell us we should have thought about that before we had children. These examples are on the extreme side and I usually tune out “ignorant” comments, but now that my children are getting older I worry about them being exposed to this cruel side of human nature.

I am not delusional. I know my kids will experience ignorance. It is a part of life-learning to understand where these comments come from and what to do about them. My real worry is if my children will think less of me when they hear something about their mom. Will they be embarrassed? Will they begin to think that something is wrong with me?

Pondering Parenting

By Amy Saffell

mobileWOMEN.org Contributor, Amy Saffell

Looking at the community of people with disabilities, you find a disproportionate number of parents compared to the community at large. Some people assume that people with disabilities aren’t fit to be parents because they don’t think that people with disabilities can carry out all of the duties naturally associated with being a parent. That thinking unfortunately goes for people with and without disabilities. Some people with disabilities have a hard time fathoming how they could care for a child and end up missing out on something that deep down they’d really like to experience in life. I asked three women with disabilities to talk about their journey through parenthood. The names have been changed, but their stories are real. Parenthood isn’t for everyone, but I hope that their stories will encourage others to honestly consider in new ways whether parenting might truly be feasible in their own lives.

What are the ages of your children?

Jessica: I have a son who is 20 and a daughter who is 8.

Melissa: I have 2 girls, 11 and 8, and one boy, age 5.

Christina: My son is 5.

If you had a child, by birth or adoption, while you had a disability and are comfortable sharing, please describe how you came to the decision to become a parent and any opposition that you faced from those around you as you told others.

Erin Andrews with her son Gavin

by Erin Andrews, PsyD, ABPP (APA Committee on Disability Issues in Psychology)

As a psychologist, my experience has primarily been in the clinical domain. However, on April 17, I was thrilled to expand my experience with advocacy when I represented the American Psychological Association at a congressional briefing on the groundbreaking National Council on Disability (NCD) report - Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children.

The briefing was a joint effort between APA, NCD, the National Association of Social Workers (NASW), and the Child Welfare League of America (CWLA). When I spoke to that room of congressional members and staff, I spoke from personal experience. My interest in parenting and disability goes beyond the professional. I am a disabled parent myself and have written about my pregnancy journey before.

Here is the back story. Rocking the Cradle is the first truly inclusive overview of reproductive and parenting rights among people with disabilities. The issues contained in the report impact me both personally and professionally.

Sitting Games with Your Preschooler -- Pretend Play

By: Valerie Deneen

Being a parent of a preschooler can be trying for anyone at times. But, for parents who have disabilities, this youthful period can be especially challenging.

No matter what day of the week, children in this age group tend to have an endless supply of energy and often demand a tremendous amount of attention from their parents. Finding activities to do with your preschooler may seem limiting at first, but with a little creativity, you can help channel some of your child's boundless energy into structured playtime—all while sitting down.

In this article, we will explore pretend play scenarios that can be done from a wheelchair. Each one will provide your child with hours of fun. In the end, the goal is also to enhance your child's development with the added benefit of tiring him or her out—leaving you with enough energy to complete the endless tasks a parent faces each day.

Mobile Women Dress for Pregnancy

by Cheryl Price

The period of time between discovering that you are pregnant and having that bundle of joy placed in your anxious arms consists of a whirlwind of events. You must plan and prepare a nursery, purchase baby clothes and supplies, perhaps register for those all-important baby necessities, and start budgeting for the new family member. While there is much to do, the most important task of all is to take good care of yourself throughout the pregnancy. Proper nutrition, getting plenty of rest and following doctor’s orders are paramount. As you move along in your pregnancy and begin taking care of these tasks and yourself, you notice that your body is changing. Before you know it, your belly is growing…a lot! You know what this means: it’s time to start maternity shopping!

Baby Love

by Lori A. Wood

I love babies. In fact, at the sight of a toothless little grin that reveals adorably tiny dimples, I go positively weak in the knees. Also, I’m pretty sure that the intoxicating scent of a freshly bathed infant is a reasonably close facsimile of what the air in Heaven smells like.

When I was a little girl, I listened intently as my friends described the details of their fantasy weddings with meticulous precision. But, even as visions of the perfect gown floated through their minds, mine was occupied with a different kind of daydream. Even then, I was sure that I wanted to be a mother.

Often, if my family was seated next to a baby in a restaurant, my mom would go over and ask his or her parents to bring the infant over to our table, so that I could get a closer look at the little tyke. Usually, this request was graciously fulfilled, and I’d get my chance to visit with their precious bundle of joy. With each of the baby’s sweet gurgles and grunts, the desire to have a child of my own grew stronger.

By the time I was in high school, this desire consumed me. Every time I’d see a baby on television or passing by on the sidewalk, pangs of jealousy would suddenly flare up. I can’t wait to take care of a baby one day, I remember thinking. Will I ever have one? The moment the question would arise, I’d dismiss it. Of course you will, a voice in my head assured. Why wouldn’t you?

by Priscilla Hedlin

We all have memories; more of them then we can ever recall. That is why diaries and pictures have been a part of many peoples lives for years. I've been obsessed with taking pictures for as long as I can remember, and I can't think of a better way to preserve memories. Several years ago I discovered scrapbooking, blogging (a public diary) and tweeting; that changed everything! Now I do it all.

Pages

Finding Hope in the Unpredictable

Finding Home

Crazy to Most, Normal to Us

Aimee Hofmann – Household CEO, Mother & so Much More!

"Where Fairy Tales Go" - An Excerpt

Recap of The White House Forum on the Civil Rights of Parents with Disabilities

Why Self Esteem is the First Ingredient to a Positive Relationship

Parenting with a Disability: Overcoming Society's Expectations with Love and Confidence

Life Lessons My Kids Are Learing From Having a Disabled Mom: People Can Be Ignorant

Pondering Parenting

Personal Meets Professional: Advocating on the Rights of Parents with Disabilities

Sitting Games with Your Preschooler -- Pretend Play

Mobile Women Dress for Pregnancy

Baby Love

The Wheelchair Mommy