Our story! Born at 30 weeks, my son spent the next 79 days in the hospital watching all of the other preemies come and go. No one seemed to have the set backs that Jude did. I cried every time I left the hospital, seeing all of the new mothers waiting for the father of their newborn to come and pick them up. Watching the fathers get out of the car and video tape every second of putting the newborn in the carseat, strapping them in, and the mom's getting into the car next to them. I knew that I was never going to get that experience. I cried for two days when the heartless doctor told us our son had PVL and he was "at high rish for severe mental retardation, at high risk for severe spastic cerebral palsy, at high risk for behavior problems." I felt sorry for myself having a son with such a bleak outlook.
My son is now 2 1/2. He is a smart little boy who loves to walk in his walker, loves to watch cars, and loves to talk to other kids. Other than his gross motor delays, he is very "normal". My son is my inspiration. He is the strongest person I know and I'm lucky to have him in my life. He has taught me more than any university could, and I can't imaginine our life any other way.

The moment I first saw my daughter Elizabeth, I knew we were in trouble. "Her head looks so small," I thought, "so deformed." After viewing a CAT scan, the neonatologist said, "Your daughter has profound microcephaly-her brain is extremely damaged and has calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." As the weeks turned into months, the doctor was proven right.

"My life is over," I thought after hearing his initial pronouncement. But as the months turned into years, I was proven wrong.

Recovering from the shock and horror over your child's prognosis takes determination--but mainly, it takes love, forgiveness and humbly accepting help from friends and strangers.

Despite wrestling with God the first year with "Why me?" (I had caught cytomegalovirus--CMV--when I was pregnant with her), I was often comforted by an act of kindness from a stranger (I always attributed God with sending me that person) or from a particular Scripture that seemed meant just for me and my particular anguish at the moment. The first several months after Elizabeth's birth and diagnosis, I wallowed in the bitterness and suffering of others, especially in the Bible where I found Scriptures like, "My days have passed, my plans are shattered, and so are the desires of my heart." Job 17:11

My first prayers for Elizabeth, other than that God would heal her immediately, were that I'd love her. What a horrible thing for a mother to have to admit--that she needed God's help to love her own child. My husband Jim, on the other hand, loved her at first sight. "She needs me," he said.

Elizabeth's nurses were to first to spark feelings of love in me toward Elizabeth. "Look, she loves to have her head rubbed," one said as she held her in the crook of her arm and rubbed the top of her head with her free hand. "Take her home and enjoy her-try not to worry about what her future holds. Just take it one day at a time."

But once home, I was so depressed I could barely function. All I could do was rock Elizabeth and listen to sad music about others who endured indescribable suffering. I immersed myself in the Book of Psalms. Before Elizabeth was born, I really couldn't relate to the Psalmists. I thought, "Wow, those people are really depressed!" Now, I found comfort in their bitter questions, such as, "How long must I bear pain in my soul, and have sorrow all the day?"

If I was ever to move forward and find happiness again, I knew I had to stop dwelling on the unanswerable questions that kept popping into my head like, "Why would God let me catch CMV?"; "Why didn't my OB/GYN warn me about this?" and "Who did I catch it from?"

It took Elizabeth a couple of months to figure out where my face was, but then one day she looked directly into my eyes and smiled-we had finally connected! I gradually began to think, "If she doesn't care that she's severely mentally retarded, and, apart from a miracle, will never walk or talk, why should I be so upset?" Maybe it was my prescription sedative talking, but that thought stuck with me, even when I no longer needed "mother's little helpers" to get me out of bed and into the shower.

I decided to follow the nurse's advice and just think about Elizabeth's care one day at a time. There was no use in letting myself get overwhelmed with despair over what Elizabeth might not be able to do in the future. Today's tasks were what I needed to tackle. I was told Elizabeth could die unexpectedly at any moment. I could die at any moment for that matter. What was the point of losing my sanity fretting about tomorrow? The Scripture that helped me stay focused was "Perfect love casts out fear" (1 John 4:18). Although I prayed for a miracle all the time, I began thinking that I needed to concentrate on loving and caring for her at that moment and not dwell on what tomorrow could bring.

Writing also gave me the courage to handle the realities of my life. My career as a writer began with a series of form letters to my family and friends to update them on how Jim, my older daughter, Jackie, and I were doing after Elizabeth's birth. It was much easier to write about our circumstances than to wait for loved ones to ask me terribly painful questions like, "How are you doing emotionally?" or "What is Elizabeth's prognosis?" or "Is she sitting up yet?" I could not bear reflecting on those topics over and over again. I preferred to let everyone know what was going on through my letters, so that when we spoke by phone or face-to-face, we could speak of more pleasant matters. My soul needed to see cheerful faces around me, not ones filled with awkwardness and pity for our plight.

I sat Elizabeth on my lap while I pursued my newfound passion. As time went by, and I began to appreciate Elizabeth just the way she was, I no longer focused on her doctor appointments and what the

problem. Also, one toe on each foot protrudes slightly. Despite all of the obstacles in her path, Lisa remained a healthy, happy, cute little girl. I began taking her to clinics at Easter Seals to see their specialists. At one of these clinics, held while she was in preschool, we got the diagnosis of benign hypotonia. In other words, she had weak muscle tone that would not get progressively worse. She remained at Easer Seals through kindergarten. A few months before her fifth birthday, Lisa walked across her classroom floor to see Santa Claus. Everyone applauded her and I could not contain my tears of joy.
Around this time, I was divorced from Lisa’s father and soon remarried a wonderful man who adopted both my daughters. With my new husband and his three daughters; Lisa, now, had a large caring family and extended family. Bob was wonderful with Lisa and fought her battles right along with me. Our next challenge was the public school system. School was a never ending battle for Lisa’s rights and best interests versus the school district’s lack of time, money and flexibility. My husband and I became advocates for Lisa. Our request that an extremely heavy bathroom door be modified for Lisa’s use, in turn, helped many of her classmates. Many times, we felt that teachers just didn’t want to go the extra half-mile for Lisa. And more times, that not, the school staff had not even taken the basic effort of reading her file.
Middle school was her most discouraging time and mine. Children at that age can be very cruel. Additionally, at the start of middle school in 7th grade, Lisa was placed in the same class with children having severe emotional and behavioral problems. Soon I discovered that this class had only one reading group which was at the first grade level. Lisa could already read way beyond that level. I told the special education administrator that this class was totally unacceptable for Lisa. Her teacher and the administrator disagreed with me.
This was a very stressful time for us. I believe that reading is a fundamental tool for life. If you can read, your horizons are limitless. I finally convinced the school psychologist to help me. But, It took three months to move Lisa out of this class.
In high school, the attitude of the other students improved. However, we soon found that Special Education in high school did not include your basics such as; history, geography, English, spelling, science, math or discussion of current events. In our school district, the emphasis was put on obtaining employment after high school in the food service industry. I fought to have Lisa mainstreamed in several subjects. I felt that she should have every opportunity to reach her own potential not the school district’s idea of her potential. She did very well in these classes which contributed much to her self-esteem. However, she received little or no support from the special education staff. Several teachers had discouraged our endeavor to have Lisa mainstreamed and voiced their opinion, in Lisa’s presence, that she would fail. The lack of appropriate placement, lack of individualized academic goals, and a discouraging teacher attitude cost Lisa a great deal. Despite all the problems, Lisa graduated from high school with her class and attended the senior prom.
I am a firm believer in continuing education and am still purchasing educational software for Lisa to make up for the school district’s lack of emphasis on basic academics. Lisa loves to read, loves history, and speaks out on issues relating to the disabled. We, determinedly, include Lisa in family discussions of current events and political views.
In 1997, we took Lisa to the Hospital of the University of Pennsylvania for an updated exam and genetic testing. Her doctor was a neurologist/geneticist. He confirmed her diagnosis as Benign Congenital Hypotonia (BCH). She was the first adult he had ever seen with this disorder. He told us that doctors normally see babies born with this disorder. Usually, the disease worsens and the child’s weak heart and lung muscles collapse before their second birthday. However, our neurologist feels that since Lisa has continued to grow stronger that her disease will remain benign. Lisa’s genetic testing was negative, however, that does not necessarily mean that this disease is not genetic.
Far from it. Some distinctive attributes of this muscle syndrome appear to be familial. Lisa has a nasal sounding voice with a high palate in her mouth and, after examination, so do I. I very much wanted to pursue the cause and the genetics of this disease. Therefore, our neurologist sent Lisa for a brain MRI. Through this, we discovered that she had a tiny area in her cerebellum that was empty. It is the precise area of the brain that controls muscle tone and fine motor development. The neurologist suggested that I should consider having a brain MRI which I did.

Karlie Hempel is a Burns Middle School (Owensboro, KY) student who has cerebral palsy and uses a wheelchair. Led by her wonderful teacher, Amanda Owen, the school organized "TEAM KARLIE" to inable Karlie to participate in races. The Team began with an idea from staff member Jeff Miller who was inspired by Team Hoyt www.teamhoyt.com. Karlie's stroller is pushed during the races by Jeff, Lauren Tucker and/or Leslie Burns. Lauren was a peer tutor for Karlie's class last year and became a special friend. Leslie is a member of the BMS cross country team. Jeff is a retired firefighter and long time runner and wanted Karlie to feel what it was like to be involved with running. The school raised the funds, in about 5 days, to purchase the stroller, helmet and other supplies for the team. Karlie's first race was May 9th, 2009 at the Owensboro BBQ Festival. Team Karlie's mission is to inspire acts of kindness in others and Karlie wants everyone to remember nothing is impossible with a willing heart. Leah Abell is our newest team member and her father pushes her during the races. To read the full story and see our pictures visit www.teamkarlie.com

I am a mum to a 6 year old son Owen who is Autistic and has Dyspraxia nd toileting issues! I live in Grimsby, north east lincolnshire uk,with my husband and my 4 year old daughter Jessica (who has no impairments. I found it very difficult to adjust my life to Owen's additional needs untl i started to get help through barnardos and parent partnership! I started to go to the Aiming high for disabled children consultations back in September 2008, and with help set up a sub parents forum called the "pufin" group (i know what you are thinking, puffin children's books, but no we did read into it an decided that we like it as it is known for children and our name would have just 1 'F', pufin is short, distinct and memorable. pufin stands for Parents United For Individual Needs, if you go on our website www.pufin.org you will notice our mission statement and what we hope to achieve, also we do have the puffin in our logo but it is our own design! I am in the middle of a ever growing project on how to deal with Autistic children in a hairdressing salon, i am also looking to take this further to a national remit, in order to get special needs training as part of a mandatory module in the hairdressing courses in colleges etc. once this has been established i will progressing towards the dr's dentists, shoe shops and hopefully supermarkets! Manchester airport have already done a social story like book for children with autism on what happens at an airport! Please feel free to look at the website and post any comments on our discussion forum board!